Up until now, I haven't really felt angry about my cancer. It has been a bit of a testing couple of weeks, cancer aside, so maybe that has something to do with it, but I suddenly found myself sitting in bed the other night with proper hot tears of fury pouring down my cheeks. This was after a morning where I was, in all honesty, glad to be on a chemo day because I had already had a total sobbing meltdown at everyone in my path and I really needed to be sat in my own space with no-one bothering me.
So what was different? Two poorly children mostly - DD has been ill for over two weeks with a chest infection and then an upper respiratory tract viral infection that won't shift. DS skipped the chest infection but got the viral one. I picked up the viral one (and didn't tell the consultant because I thought she would delay my next treatment - that's how desperate I got for no further delays and a peaceful day hooked up to a drip - I should mention that I did tell the nurse in the end and it was fine). So I'm tired, my children are tired and, frankly, horrible, nothing has happened in the house but watching telly, people falling asleep all over the place and refusing to eat anything. Generalised crankiness. DH needs reminding constantly that he is as responsible for running this place as I am and therefore could he kindly get on with it rather than expecting me to run the show and tell him what needs doing and I need to keep a careful grip on myself whenever he says that he's tired, so we don't get into the competitive tiredness thing. Because I know he's tired too.
But the real difference is the bloody cancer. That's why my tether is so short and I shout at my children more than usual and I can't be who I usually am. No angel/perfect parent by any stretch of the imagination but usually I can get through this stuff and now I can't. And everyone around me is having to get used to that. And there's only one thing to blame. Interestingly in all my fury I didn't get angry with me (for not living a better lifestyle that might have avoided this in the first place - too late for that kind of thought - or for not doing something about it earlier - ditto) or God. That's not down to my particular set of Christian beliefs, I just don't think it's His fault or some sort of malicious test. It doesn't feel like that, anyway. What it comes down to is that shit happens. Doesn't mean I have to be happy about it all the time, does it?
Sunday 30 December 2012
Tuesday 25 December 2012
Wednesday 19 December 2012
Deep thoughts
A couple of questions have come up in the past week that really made me think about aspects of having cancer that I hadn't thought about before.
The first one came about because I shared the existence of this blog on the Macmillan website in response to someone on the chat room asking about experiences. I'm still amazed that anyone reads this so thank you everyone who does, and if I can help in some way that's good. One person came back to me asking about whether I'd made any preparations in case I didn't survive surgery - letters or keepsakes, for example. Apart from checking the wills and DH's classic comment about going off to clean his gun, we didn't do anything. And the question got me wondering: at some point, cancer might be the reason that I have to ask my family to let me go. If I am going to ask that of them, is it fair of me to try and maintain a hold over them, to allow them only the memories that I want them to have? I don't know the answer, and I hope I shan't have to, but the question did make me pause. There's a lot there about whether we are as we see ourselves or only as others see us.
The second one was a bit less profound but still striking. Sat in a private viewing theatre (I know, I know, showing off now) watching The Hobbit (beautiful to look at, thin on plot) I suddenly realised that this could be so much worse. It could not have been picked up, and spread, and and and. Suddenly, sat there in the dark watching the lovely New Zealand scenery and waiting for the dragon to appear, I felt very lucky indeed.
The first one came about because I shared the existence of this blog on the Macmillan website in response to someone on the chat room asking about experiences. I'm still amazed that anyone reads this so thank you everyone who does, and if I can help in some way that's good. One person came back to me asking about whether I'd made any preparations in case I didn't survive surgery - letters or keepsakes, for example. Apart from checking the wills and DH's classic comment about going off to clean his gun, we didn't do anything. And the question got me wondering: at some point, cancer might be the reason that I have to ask my family to let me go. If I am going to ask that of them, is it fair of me to try and maintain a hold over them, to allow them only the memories that I want them to have? I don't know the answer, and I hope I shan't have to, but the question did make me pause. There's a lot there about whether we are as we see ourselves or only as others see us.
The second one was a bit less profound but still striking. Sat in a private viewing theatre (I know, I know, showing off now) watching The Hobbit (beautiful to look at, thin on plot) I suddenly realised that this could be so much worse. It could not have been picked up, and spread, and and and. Suddenly, sat there in the dark watching the lovely New Zealand scenery and waiting for the dragon to appear, I felt very lucky indeed.
Festive FOLFOX: Cycle 4
Despite yet another set back, I'm feeling quite positive about cycle 4. So positive, in fact, that I add a little festive holly and a snowman around my portacath dressing (children's face paints are so much fun in the hands of idle adults) before heading off to hospital.
Sadly the hospital is not in such a festive mood. The ward is really busy and we're allocated a room at the far end, by the building works. Something is wrong with the heating and the normally overpoweringly stuffy rooms are really quite chilly. Even the normally cheery HCA, the one who checked I was OK after the last set back, seems a bit down today. She brings us a heater to try and warm the room up, which works but also starts to smell. At first it's the old dust smell that you get from long stored heaters, but it ripens quickly into a full-on sulphuric stench. The ward manager, trailing workmen, starts to arrange to have us moved so we go back to the waiting area. By this time the wait for rooms is an hour and it is nearly lunchtime, so I ask if they can just rig me up in a side room somewhere so I can at least sit in the waiting area with the drugs running. As we get this going, using the staff room for privacy whilst the access needle goes in, a room is found.
Thus far this cycle seems good. The side effects are the same as before and I know how to handle those (may have overdone the Movicol though). The bone jab, neulasta again, does wipe me out and makes all the muscles attached to the big bones very achy, so I feel very fluey, but the worst only lasts a day and isn't really that bad. Some of the longer term side effects are getting more pronounced, such as thin skin everywhere but particularly on my hands and feet, and the peripheral neuropathy seems more persistent, but the general reaction of friends and family when they see me is, "You look really well". Let's hope it lasts.
Sadly the hospital is not in such a festive mood. The ward is really busy and we're allocated a room at the far end, by the building works. Something is wrong with the heating and the normally overpoweringly stuffy rooms are really quite chilly. Even the normally cheery HCA, the one who checked I was OK after the last set back, seems a bit down today. She brings us a heater to try and warm the room up, which works but also starts to smell. At first it's the old dust smell that you get from long stored heaters, but it ripens quickly into a full-on sulphuric stench. The ward manager, trailing workmen, starts to arrange to have us moved so we go back to the waiting area. By this time the wait for rooms is an hour and it is nearly lunchtime, so I ask if they can just rig me up in a side room somewhere so I can at least sit in the waiting area with the drugs running. As we get this going, using the staff room for privacy whilst the access needle goes in, a room is found.
Thus far this cycle seems good. The side effects are the same as before and I know how to handle those (may have overdone the Movicol though). The bone jab, neulasta again, does wipe me out and makes all the muscles attached to the big bones very achy, so I feel very fluey, but the worst only lasts a day and isn't really that bad. Some of the longer term side effects are getting more pronounced, such as thin skin everywhere but particularly on my hands and feet, and the peripheral neuropathy seems more persistent, but the general reaction of friends and family when they see me is, "You look really well". Let's hope it lasts.
Tuesday 11 December 2012
Find me somebody to love
There's a lyric in that great Queen song that goes "I work till I ache my bones". Well, I might not be working but my bones really ache. Last time I had the Neulasta and it was on top of the chemo; this is a different drug and there's no chemo to mask the side effects. It's worst first thing in the morning for each of the three days following the jabs and principally in my pelvis, although the sternum did join in for a while particularly when there was a change in circulation such as standing up from a prone position. There's a phrase about feeling your heart crashing against your ribs and that's exactly what it felt like. I'm also very tired and spend much of Friday, Saturday and Sunday asleep. Sadly this means I miss going to get the Christmas tree with the children - we moved it forward to this weekend as next will be wiped out with chemo, thinking I'd be OK, but we reckoned without this exhaustion. But my in-laws are around and so they get to join in the Christmas fun, which otherwise they wouldn't have shared. There are pluses and minuses to this.
My son is adding to everyone's exhaustion by being a bed yo-yo. He's out of nappies at night but has worked out that he can a) open his bedroom door and b) get attention by claiming he wants a wee. Friday night my FIL finds him downstairs at 3 am calling for me and DH - we hadn't heard a thing despite the fact that DS had had to open the stair gate to get downstairs! MIL bore the brunt of that one, getting him back to bed again. And again. And again. Let's hope this wears off quickly.
There was a fun bit for me this weekend - a James Bond themed party at the house of a couple who are friends of ours. Black tie is the order of the day, and DH and I go out looking pretty good, even if I do say so myself. The dress doesn't quite hide the portacath scar and I develop a paranoia halfway through the evening that everyone thinks I've had some sort of boob job. However no-one comments and the evening goes well. The only downside was having to explain the cancer to a couple of people who didn't know, including the hostess who was visibly upset. Her husband, the host, had a throat cancer a few years ago, so she knows the score. We leave much later than intended, with promises to our hosts that we will see them for lunch very soon.
My son is adding to everyone's exhaustion by being a bed yo-yo. He's out of nappies at night but has worked out that he can a) open his bedroom door and b) get attention by claiming he wants a wee. Friday night my FIL finds him downstairs at 3 am calling for me and DH - we hadn't heard a thing despite the fact that DS had had to open the stair gate to get downstairs! MIL bore the brunt of that one, getting him back to bed again. And again. And again. Let's hope this wears off quickly.
There was a fun bit for me this weekend - a James Bond themed party at the house of a couple who are friends of ours. Black tie is the order of the day, and DH and I go out looking pretty good, even if I do say so myself. The dress doesn't quite hide the portacath scar and I develop a paranoia halfway through the evening that everyone thinks I've had some sort of boob job. However no-one comments and the evening goes well. The only downside was having to explain the cancer to a couple of people who didn't know, including the hostess who was visibly upset. Her husband, the host, had a throat cancer a few years ago, so she knows the score. We leave much later than intended, with promises to our hosts that we will see them for lunch very soon.
And now the chemo cycle in which not much happens
Up. Down. Up. Down. No chemo this time as my neutrophils are too low again - 0.91 as opposed to the 1.5 the protocol requires. The consultant is happy to delay a week because the cancer markers are fine, so after a nice cup of tea it's back home again. If I was of a suspicious mindset I would start thinking that the phlebotomy lab are fixing the results so they can have me back more often, as apparently I am very easy to take blood from.
This time I am ok about it. I now know about setbacks, they're normal, not a sign that somehow I'm failing at this. The consultant suggests more bone marrow booster jabs, and the same each cycle, which seems a sensible approach to the problem. So before I leave I have one subcutaneous jab of Neupogen, with two more to follow at roughly 24 hour intervals. My stomach is going to look like a pincushion, particularly as the Zoladex jab has left a large bruise.
Also before I leave the healthcare assistant on whose shoulder I cried the first time there was a delay came to see me. She heard I'd been delayed again and wanted to check I was OK. I am regularly humbled by how wonderful the staff are at this oncology unit. Out of hundreds of patients she sees each week, she remembered how I felt over something that happened seven weeks ago. It is things like that that make me feel like a person and not a patient.
This time my mother-in-law was my designated driver. DH has gone on a corporate do (I tried laying on the tragedy with a trowel, but he quite rightly ignored my attempts to wind him up) and my parents are visiting my brother and his family up north. I found that I was very reluctant to have her stay with me all day. Somehow the chemo is quite a private thing for me, I feel very vulnerable and very closed when it is going on and I don't really want anyone there. Even my Mum, who was around for most of my labour with my eldest, probably wouldn't be welcome. My MIL was fine about that and she was very calm throughout the chaos!
This time I am ok about it. I now know about setbacks, they're normal, not a sign that somehow I'm failing at this. The consultant suggests more bone marrow booster jabs, and the same each cycle, which seems a sensible approach to the problem. So before I leave I have one subcutaneous jab of Neupogen, with two more to follow at roughly 24 hour intervals. My stomach is going to look like a pincushion, particularly as the Zoladex jab has left a large bruise.
Also before I leave the healthcare assistant on whose shoulder I cried the first time there was a delay came to see me. She heard I'd been delayed again and wanted to check I was OK. I am regularly humbled by how wonderful the staff are at this oncology unit. Out of hundreds of patients she sees each week, she remembered how I felt over something that happened seven weeks ago. It is things like that that make me feel like a person and not a patient.
This time my mother-in-law was my designated driver. DH has gone on a corporate do (I tried laying on the tragedy with a trowel, but he quite rightly ignored my attempts to wind him up) and my parents are visiting my brother and his family up north. I found that I was very reluctant to have her stay with me all day. Somehow the chemo is quite a private thing for me, I feel very vulnerable and very closed when it is going on and I don't really want anyone there. Even my Mum, who was around for most of my labour with my eldest, probably wouldn't be welcome. My MIL was fine about that and she was very calm throughout the chaos!
Wednesday 5 December 2012
The post in which not much happens
Which is a good thing. This last cycle has gone well, hence not much to report. The bottle and access needle came out easily on Sunday - thank you to the out of hours District Nursing team who did the removal and flush. It was a bit alarming that there were three of them though; they did confess that only one of them had ever dealt with a portacath before so the other two were there to learn! The NHS tends to run to PICC/ Hickman lines, so I'm lucky to have the Aston Martin of deep vein access, and I don't mind people using me as practice. Everyone's got to learn somewhere.
I did use the EMLA cream for this Zoladex and it was much easier. The nurse wondered if I'd put on some weight because even she thought it was easier; I'd prefer to think that it was because I couldn't feel it! This time it will last 12 weeks rather than four, so at least I don't have to do that again any time soon.
Reflexology has been my saviour this time round. I saw her on the Tuesday after the cycle when I was starting to feel really thick headed and sluggish, not eating well and quite constipated. I came out of the session feeling energised, with a clear head and (ahem) bowels moving much better, and I've felt "up" ever since. My worry now is that I have a cycle on 20 December so need to see her on Christmas Eve to achieve the same effect (well, technically Christmas Day, but even I won't ask that!). I hope she says she will see me on 24th, I think it might save Christmas for me.
Otherwise, life is all about Christmas. Various relatives are visiting from/going to visit the far flung corners of the Dragon family this weekend, so the pressure is on to have all presents and cards ready to go. Last Christmas shopping today with my Mum, which I'm really looking forward to as we haven't done that in years. And apparently it's snowing outside! 20 sleeps to Christmas (can you tell I've got small children? One of whom is in bed next to me telling me she's bored of my writing now, so I'd better stop and start getting everyone up!).
I did use the EMLA cream for this Zoladex and it was much easier. The nurse wondered if I'd put on some weight because even she thought it was easier; I'd prefer to think that it was because I couldn't feel it! This time it will last 12 weeks rather than four, so at least I don't have to do that again any time soon.
Reflexology has been my saviour this time round. I saw her on the Tuesday after the cycle when I was starting to feel really thick headed and sluggish, not eating well and quite constipated. I came out of the session feeling energised, with a clear head and (ahem) bowels moving much better, and I've felt "up" ever since. My worry now is that I have a cycle on 20 December so need to see her on Christmas Eve to achieve the same effect (well, technically Christmas Day, but even I won't ask that!). I hope she says she will see me on 24th, I think it might save Christmas for me.
Otherwise, life is all about Christmas. Various relatives are visiting from/going to visit the far flung corners of the Dragon family this weekend, so the pressure is on to have all presents and cards ready to go. Last Christmas shopping today with my Mum, which I'm really looking forward to as we haven't done that in years. And apparently it's snowing outside! 20 sleeps to Christmas (can you tell I've got small children? One of whom is in bed next to me telling me she's bored of my writing now, so I'd better stop and start getting everyone up!).
Monday 26 November 2012
Day trip - with pump!
Hmmmm, last time I could have posted with that title it would have been a breast pump! This thing is much more discreet, frankly. In fact, as DH is dropping me, my two brothers and my Dad at the train station to go to Twickenham for the England v SA game, I'm wondering if I shouldn't untuck some of the line to make sure I get a seat. No need to worry, we all find a seat without waving the cancer card and have a brilliant day watching a frankly piss-poor game of rugby (you do NOT take a penalty in the last two minutes of the game when you are four points behind you numpties) then home for takeaway with Mum, DH and DB2's girlfriend. This kind of day is rare in our family because we live a bit spread out and DB2 works shifts, so stuff the rugby and stuff the cancer - it's been a wonderful chance to enjoy time with my family without medical sh1te being the catalyst.
This week DH deserves particular cred. Not only did he have to handle super-mega-grump DS for most of the weekend, but on chemo day he ordered my lunch for me (they always come round when I'm in the loo!) and got me sticky toffee pudding as well. Now there's a man who knows his wife well.
This week DH deserves particular cred. Not only did he have to handle super-mega-grump DS for most of the weekend, but on chemo day he ordered my lunch for me (they always come round when I'm in the loo!) and got me sticky toffee pudding as well. Now there's a man who knows his wife well.
Chemo III: A New Hope
Day 5 of cycle 3 has started. I'm not going to jinx things by commenting on how I'm feeling, but here's roughly how things are going logistically this time round.
The hospital day was longer, partly because they pushed my appointment back by an hour. I don't mind, there are people who need more time than me (although I wonder sometimes how that's possible! It all seems to take ages.) But also because this time it's all going in via the portacath. Come 46 hours post hook up, all this cycle's drugs are in and there ain't no backing out. This suits me, really - after last time I think I can cope as I'm more confident the side effects will go, but I don't have 2 weeks of trying to get tablets into my system. So after the usual aperitif of minerals, steroids and anti-emetics, in goes the Oxaliplatin.
I should say that the insertion of the access needle to the portacath was an utter doddle. The hospital gave me some Emla cream, the local anaesthetic cream they use for children when they need to insert lines, and despite me needing 2 goes to get it right and putting on far too much so it all slipped, it worked a charm. Didn't feel a thing. I think I might sneakily use some before I have my next Zoladex today.
After the main course, a quick flush and the pump arrives. The only way I can describe it is as a clear plastic sports water bottle of about half a litre, inside which is a giant condom full of fluid and inside that a clear plastic tube. There's a thin line from the bottle up into the access needle and the line is quite long so you can put it down when you sleep, for example, and a carrying pouch with a strap. Not going to win any fashion awards, but I can live with that for two days. When I get home I show it to the children who are, of course, deeply fascinated but also very good at one-sided hugs and not pulling on it.
The down side of this new regime is more cycles. The total course will still be six months but cycles are only two weeks apart not three, so a total of 11 cycles. On the plus side, the dosages are smaller because the period covered is two weeks not three. So another rejig of the mental timetable and it's particularly disappointing to find I have a dose quite close to Christmas, but that's the way this goes...
The hospital day was longer, partly because they pushed my appointment back by an hour. I don't mind, there are people who need more time than me (although I wonder sometimes how that's possible! It all seems to take ages.) But also because this time it's all going in via the portacath. Come 46 hours post hook up, all this cycle's drugs are in and there ain't no backing out. This suits me, really - after last time I think I can cope as I'm more confident the side effects will go, but I don't have 2 weeks of trying to get tablets into my system. So after the usual aperitif of minerals, steroids and anti-emetics, in goes the Oxaliplatin.
I should say that the insertion of the access needle to the portacath was an utter doddle. The hospital gave me some Emla cream, the local anaesthetic cream they use for children when they need to insert lines, and despite me needing 2 goes to get it right and putting on far too much so it all slipped, it worked a charm. Didn't feel a thing. I think I might sneakily use some before I have my next Zoladex today.
After the main course, a quick flush and the pump arrives. The only way I can describe it is as a clear plastic sports water bottle of about half a litre, inside which is a giant condom full of fluid and inside that a clear plastic tube. There's a thin line from the bottle up into the access needle and the line is quite long so you can put it down when you sleep, for example, and a carrying pouch with a strap. Not going to win any fashion awards, but I can live with that for two days. When I get home I show it to the children who are, of course, deeply fascinated but also very good at one-sided hugs and not pulling on it.
The down side of this new regime is more cycles. The total course will still be six months but cycles are only two weeks apart not three, so a total of 11 cycles. On the plus side, the dosages are smaller because the period covered is two weeks not three. So another rejig of the mental timetable and it's particularly disappointing to find I have a dose quite close to Christmas, but that's the way this goes...
Thursday 22 November 2012
Feeling good
This may have something to do with the long pause since the last treatment. Tomorrow (bloods permitting) we start again. But the last ten days have been great. I feel better than I have done in a while and I've been trying to get things done whilst I feel up to it. So I have done most of the Christmas shopping via the wonders of Amazon and some fiddling around with bank accounts that I should have done years ago, shutting old ones I don't use and putting the money in places where it might earn some interest! Or just spending it on Amazon on Christmas presents... Naturally both children have done a growth spurt and so there's a clothes bill as well. Thankfully it's only money.
What else? A day's worth of row with BT, still ongoing - not a good thing but I was grateful for the energy to actually have the row. A lovely family weekend involving nothing more exciting than the school Christmas Fayre and pottering around the house, with only one major child related melt down. I finished knitting a meerkat (my Dad's Christmas present, don't ask) and even more triumphantly sewing the thing together. DH and I also had a fabulous meal at the Waterside Inn in Bray, with two of our closest friends. Originally it was booked for Friday, the day after chemo cycle 3, but the friend who booked it emailed them and explained and they kindly fit us in today. As DH and I collapsed on the sofas back home and we talked about the meal (which was wonderful) he said, "The best thing about today? Seeing you smile". I'm going to try and hang on to that over the next few days.
What else? A day's worth of row with BT, still ongoing - not a good thing but I was grateful for the energy to actually have the row. A lovely family weekend involving nothing more exciting than the school Christmas Fayre and pottering around the house, with only one major child related melt down. I finished knitting a meerkat (my Dad's Christmas present, don't ask) and even more triumphantly sewing the thing together. DH and I also had a fabulous meal at the Waterside Inn in Bray, with two of our closest friends. Originally it was booked for Friday, the day after chemo cycle 3, but the friend who booked it emailed them and explained and they kindly fit us in today. As DH and I collapsed on the sofas back home and we talked about the meal (which was wonderful) he said, "The best thing about today? Seeing you smile". I'm going to try and hang on to that over the next few days.
Friday 16 November 2012
Carpe diem
"Seize the day". Or at least so I understand from the film "Dead Poets' Society" as despite a classical education I don't speak Latin.
It doesn't matter though, it's the sentiment that's important. And it's what's coming through from my experiences in the last week. There are going to be good days and bad days and I have to learn to accept the bad days; then, when I have good days, to get on with stuff. This is not in line with my usual style of operation which involves planning things to the nth degree just in order to get things done (believe me, a full time job and two children equals no other pattern of behaviour). A strong tendency to control freakery doesn't help either. So this will be good for me, learning to just go with the flow.
Perhaps the hardest part of that will be believing that there will be up days. Last week I got stuck in a horrible cycle of believing that this was it, this was the next six months and nothing would ever get better and that all the side effects were permanent. I'm not sure how I go about making that happen, but at least I can look back on this post as a reminder.
It doesn't matter though, it's the sentiment that's important. And it's what's coming through from my experiences in the last week. There are going to be good days and bad days and I have to learn to accept the bad days; then, when I have good days, to get on with stuff. This is not in line with my usual style of operation which involves planning things to the nth degree just in order to get things done (believe me, a full time job and two children equals no other pattern of behaviour). A strong tendency to control freakery doesn't help either. So this will be good for me, learning to just go with the flow.
Perhaps the hardest part of that will be believing that there will be up days. Last week I got stuck in a horrible cycle of believing that this was it, this was the next six months and nothing would ever get better and that all the side effects were permanent. I'm not sure how I go about making that happen, but at least I can look back on this post as a reminder.
Monday 12 November 2012
Weekend medics
There are a lot of complaints in the UK about lack of availability of out of hours medical care. Not my experience, in truth - when we've needed someone, particularly for the children, they've come or the right advice has been made available - but there are plenty of people who say they can't see a doctor when they need to.
So I was a bit surprised to get two calls on Saturday. The first was from the district nurse, checking whether or not I needed a visit on Friday for the bone jab, because she was going away and she was prepping her lists for her cover. I don't, but bless her for remembering and for taking time out of her weekend to ask. The second was from the oncologist, checking up on how I was and reassuring me that stopping the cycle was not an issue because my markers are "reassuringly normal". That was just what I needed to hear and again how kind of her to take her own time to check I was OK.
I feel so much better, although the stomach is still giving me a bit of gip. I've been so pleased to be able to eat that I've probably overdone it a bit! And I'm very tired, can't physically do very much before needing to rest. Unfortunately this has made me very short tempered and a five year old and a two year old need lots of patience. DD told me tonight that it had been a "shouty weekend" and I guess it has; both DH and I are drained after the last week and it's hard when the children don't do as they're asked because that taxes the resources. It's not their fault, though - must try and work out a way to make family life a bit better.
So I was a bit surprised to get two calls on Saturday. The first was from the district nurse, checking whether or not I needed a visit on Friday for the bone jab, because she was going away and she was prepping her lists for her cover. I don't, but bless her for remembering and for taking time out of her weekend to ask. The second was from the oncologist, checking up on how I was and reassuring me that stopping the cycle was not an issue because my markers are "reassuringly normal". That was just what I needed to hear and again how kind of her to take her own time to check I was OK.
I feel so much better, although the stomach is still giving me a bit of gip. I've been so pleased to be able to eat that I've probably overdone it a bit! And I'm very tired, can't physically do very much before needing to rest. Unfortunately this has made me very short tempered and a five year old and a two year old need lots of patience. DD told me tonight that it had been a "shouty weekend" and I guess it has; both DH and I are drained after the last week and it's hard when the children don't do as they're asked because that taxes the resources. It's not their fault, though - must try and work out a way to make family life a bit better.
Friday 9 November 2012
More snakes
The first few days post-cycle 2 went fine. I had the pins and needles again, very tired, and slept quite a lot.
Generally the house has been quite poorly. DS was sick on the Wednesday night prior to cycle 2, and DD's stomach clearly wasn't right (there's no way ANYTHING should smell as bad as her guts, poor little mite). Then DH went down at the weekend, although he swears blind it was something he ate. How he manages to keep up such a line in the face of the obvious explanation is beyond me. Finally on Monday TN turned up looking like death, so we sent her home - turned out she has a gastric thing too.
So I shouldn't have been surprised when I spent Tuesday wondering not if I was going to throw up, but how far it would go when I did. Got through Tuesday (without throwing up, no idea how) and then surrendered to the chemo unit on Wednesday. I had to go anyway to check the portacath wound and saw them about the nausea then too. More meds, this time cyclazine. No good, worse Thursday so back we went again. This time I actually got to see the doctor and then the chemical consultant. More meds, I've given up asking what exactly, don't care as long as they work. The consultant thinks I'm having a reaction to the Capcitabine, which is unusual but not unknown, so we may change the regime next time to a fully IV one. The bonus of the oxaliplatin/Capcitabine regime is supposed to be the minimal invasiveness, in that it can go in a cannula/orally, but once the portacath is in then that advantage has gone, anyway.
Friday starts badly - I get up but collapse back with stomach pains quite quickly. Antacids seem to help, although I don't know if I should be taking them or not with everything else that's going in. After that it improves a bit, enough for me to want to talk about it, anyway.
A wretched week when it's been difficult to keep my spirits up. Thank goodness for DH, my parents and my in-laws, who have sopped up the mess.
Generally the house has been quite poorly. DS was sick on the Wednesday night prior to cycle 2, and DD's stomach clearly wasn't right (there's no way ANYTHING should smell as bad as her guts, poor little mite). Then DH went down at the weekend, although he swears blind it was something he ate. How he manages to keep up such a line in the face of the obvious explanation is beyond me. Finally on Monday TN turned up looking like death, so we sent her home - turned out she has a gastric thing too.
So I shouldn't have been surprised when I spent Tuesday wondering not if I was going to throw up, but how far it would go when I did. Got through Tuesday (without throwing up, no idea how) and then surrendered to the chemo unit on Wednesday. I had to go anyway to check the portacath wound and saw them about the nausea then too. More meds, this time cyclazine. No good, worse Thursday so back we went again. This time I actually got to see the doctor and then the chemical consultant. More meds, I've given up asking what exactly, don't care as long as they work. The consultant thinks I'm having a reaction to the Capcitabine, which is unusual but not unknown, so we may change the regime next time to a fully IV one. The bonus of the oxaliplatin/Capcitabine regime is supposed to be the minimal invasiveness, in that it can go in a cannula/orally, but once the portacath is in then that advantage has gone, anyway.
Friday starts badly - I get up but collapse back with stomach pains quite quickly. Antacids seem to help, although I don't know if I should be taking them or not with everything else that's going in. After that it improves a bit, enough for me to want to talk about it, anyway.
A wretched week when it's been difficult to keep my spirits up. Thank goodness for DH, my parents and my in-laws, who have sopped up the mess.
Sunday 4 November 2012
200 words for cancer
This post was really triggered by the Movember campaign, a mighty movement for raising awareness of, and funds to fight, prostate cancer. See Movember for more details (please note, I'm not responsible for content on external sites). It also produces much office hilarity and some very fine moustaches.
But there are around 200 known cancers, of which prostate and breast are just a part. And whilst all awareness of cancer is good, and all research into cancer is good and brings us closer to kicking its butt for ever, I think the focus on individual cancers can skew things mightily. Bowel cancer is rare in my age group and those medical professionals not familiar with my case assume I have breast cancer. If that's the medical profession's view, what's the layman's view? Never heard of it? Don't want to talk about it? Can't discuss this set of symptoms with anyone because they don't mean anything? After all, people only really get a few types of cancer, don't they? And I don't want to be a bother to anyone when this isn't one of those...
I'm not for a moment suggesting that everyone is terrified into reporting the slightest issue to their GP, causing chaos at the reception desk. What I am suggesting is that it would be good if the big awareness campaigns were broader, covered some of the other cancers that most people hopefully will never experience but should know about.
The adverse publicity this week on the breast cancer screening programme also doesn't help - see the BBC story on the issue. There's no way of knowing which cancers need treating and which don't. By all means tell people that this is the case, but try not to do it in a way that compromises saving lives. Surely informed choice is better than the ostrich approach?
If Eskimo languages can recognise multiple words for "snow", surely we can recognise multiple forms of cancer. And fight them all in the best way, which may not always be the one expected. But the only way that will happen is if the awareness work becomes more general, less focussed on specific cancers and more on its general blight. Good luck with the 'tache growing, gentlemen, and may those of you sporting extra pink raise lots of money for your cause. Now someone tell me how to make bowel cancer a suitable topic for office conversation...
But there are around 200 known cancers, of which prostate and breast are just a part. And whilst all awareness of cancer is good, and all research into cancer is good and brings us closer to kicking its butt for ever, I think the focus on individual cancers can skew things mightily. Bowel cancer is rare in my age group and those medical professionals not familiar with my case assume I have breast cancer. If that's the medical profession's view, what's the layman's view? Never heard of it? Don't want to talk about it? Can't discuss this set of symptoms with anyone because they don't mean anything? After all, people only really get a few types of cancer, don't they? And I don't want to be a bother to anyone when this isn't one of those...
I'm not for a moment suggesting that everyone is terrified into reporting the slightest issue to their GP, causing chaos at the reception desk. What I am suggesting is that it would be good if the big awareness campaigns were broader, covered some of the other cancers that most people hopefully will never experience but should know about.
The adverse publicity this week on the breast cancer screening programme also doesn't help - see the BBC story on the issue. There's no way of knowing which cancers need treating and which don't. By all means tell people that this is the case, but try not to do it in a way that compromises saving lives. Surely informed choice is better than the ostrich approach?
If Eskimo languages can recognise multiple words for "snow", surely we can recognise multiple forms of cancer. And fight them all in the best way, which may not always be the one expected. But the only way that will happen is if the awareness work becomes more general, less focussed on specific cancers and more on its general blight. Good luck with the 'tache growing, gentlemen, and may those of you sporting extra pink raise lots of money for your cause. Now someone tell me how to make bowel cancer a suitable topic for office conversation...
Can I have chemo on a Caribbean island?
Cold and Oxaliplatin do not mix. However, it is November and it is cold. The tics are back with a vengeance and DH has to lead me through the streets to our local cinema to see the new Bond film, because the inside of my nose feels like it's on fire and my eyes have ticked shut. This is despite me being wrapped up like The Invisible Man.
All the sensations from last time are back - pins and needles, a little in my feet this time, the jaw pain and facial tics - plus some new ones: cramps in my calves, a little tightness in my chest (which I put down to the new infusion site) and discomfort in my hips and pelvis (which I put down to the bone jab). I'm also much more tired this time and spend much of Friday and Saturday in bed. Drinking water seems to help, when I can remember!
Oh yes, and the insomnia is back. Hence frenzied blog updating at 4/5/6 am. Not the recommended way to deal with it, but it works for me.
All the sensations from last time are back - pins and needles, a little in my feet this time, the jaw pain and facial tics - plus some new ones: cramps in my calves, a little tightness in my chest (which I put down to the new infusion site) and discomfort in my hips and pelvis (which I put down to the bone jab). I'm also much more tired this time and spend much of Friday and Saturday in bed. Drinking water seems to help, when I can remember!
Oh yes, and the insomnia is back. Hence frenzied blog updating at 4/5/6 am. Not the recommended way to deal with it, but it works for me.
Hunt the nurse
The following day is a Friday. My parents take me off to see the reflexologist first and the effect is the same as last week, a real boost to the soul. She tells me my liver is clearly working hard and reminds me to rest a lot to help my bone marrow. But I walk out feeling tired yet somehow cleaner, fresher, more of a spring in my step.
Just as well, because now I have to hunt the district nurse down. The bone jab, Neulasta, has to be given 24 hours after chemo finishes. Something tells me 4 pm on a Friday isn't going to be a good time to sort this out if there's a problem. Come 4.45 pm, no nurse. I ring the hospital, where the chemo unit shuts at 5 pm. No-one there. At the receptionist's suggestion, I ring the GP. GP's surgery does not have its own district nurse team and gives me the numbers for the local team. Day team number is not picking up; when I phone the night team number I'm told they're not on shift until 6.30 pm (day team goes off at 5 pm). Good job I'm not sick or have a time critical jab to receive, or anything. I'm afraid I do get a bit snippy with the lady who picks up the phone at the night nurse team, but I genuinely don't know what to do next. I try the day team again and wonder of wonders a nurse answers and kindly agrees to see me now if I can come to the surgery. 20 minutes later and we are all done. She has explained the system to me - in essence please can I come to the surgery and I need to make sure myself that I'm on the list, which I can do now I have the numbers.
I could avoid all this by doing the jabs myself. But you know what? I don't want to. And when finally the jab goes in, on the other side of my stomach from the battered and bruised Zoladex site from Monday, it hurts just a bit and I'm pleased I don't have to do this at home.
Just as well, because now I have to hunt the district nurse down. The bone jab, Neulasta, has to be given 24 hours after chemo finishes. Something tells me 4 pm on a Friday isn't going to be a good time to sort this out if there's a problem. Come 4.45 pm, no nurse. I ring the hospital, where the chemo unit shuts at 5 pm. No-one there. At the receptionist's suggestion, I ring the GP. GP's surgery does not have its own district nurse team and gives me the numbers for the local team. Day team number is not picking up; when I phone the night team number I'm told they're not on shift until 6.30 pm (day team goes off at 5 pm). Good job I'm not sick or have a time critical jab to receive, or anything. I'm afraid I do get a bit snippy with the lady who picks up the phone at the night nurse team, but I genuinely don't know what to do next. I try the day team again and wonder of wonders a nurse answers and kindly agrees to see me now if I can come to the surgery. 20 minutes later and we are all done. She has explained the system to me - in essence please can I come to the surgery and I need to make sure myself that I'm on the list, which I can do now I have the numbers.
I could avoid all this by doing the jabs myself. But you know what? I don't want to. And when finally the jab goes in, on the other side of my stomach from the battered and bruised Zoladex site from Monday, it hurts just a bit and I'm pleased I don't have to do this at home.
Chemo 2: the cycle begins
Hi ho, hi ho, it's back to hospital we go... If I did the check in games on Facebook, I'd be queen of this place.
Bloods first, and she can't do them through the portacath because the stuff they use to keep the port clear and unclotted interferes with the count! Not what I was told but never mind, as my elbow proves just fine.
Rather annoyingly, I have put on another little bit of weight since last week. I think I shall give up looking and/or come to weigh ins only after having a poo and whilst wearing the lightest of clothes. Of course we could always play the before and after poo weight game, but as most of the other people waiting to be weighed and measured are quite a lot older than me, and therefore not as childish, probably better not to hold them up too long.
The chemical consultant and the Macmillan nurse come to see me. Bloods are good to go; she is changing the dose downwards to try and help with the side effects, particularly the bloods, but reassures me that this won't affect the efficacy of the treatment. The volume calculation they use is apparently fairly crude so this is just a refinement. The anti-sick drugs will be changed and I'm to have a blood cell booster jab tomorrow, which the district nurse will come and administer.
Finally I'm plugged in. The staff nurse giggles as she takes off the blue gauze boob - it turns out the surgeon from Tuesday is notorious for the size of the dressings he puts on. But she's very gentle and unveils a really rather neat looking job into which the first drips simply click.
Once things are up and running, DH disappears off for a bit of R&R. His parents are staying for a few days and I'm happy to be left with the DVD player, watching "The Killing". He's back in time for the ceremonial unclipping. This portacath thing is marvellous, I haven't felt a thing today.
Bloods first, and she can't do them through the portacath because the stuff they use to keep the port clear and unclotted interferes with the count! Not what I was told but never mind, as my elbow proves just fine.
Rather annoyingly, I have put on another little bit of weight since last week. I think I shall give up looking and/or come to weigh ins only after having a poo and whilst wearing the lightest of clothes. Of course we could always play the before and after poo weight game, but as most of the other people waiting to be weighed and measured are quite a lot older than me, and therefore not as childish, probably better not to hold them up too long.
The chemical consultant and the Macmillan nurse come to see me. Bloods are good to go; she is changing the dose downwards to try and help with the side effects, particularly the bloods, but reassures me that this won't affect the efficacy of the treatment. The volume calculation they use is apparently fairly crude so this is just a refinement. The anti-sick drugs will be changed and I'm to have a blood cell booster jab tomorrow, which the district nurse will come and administer.
Finally I'm plugged in. The staff nurse giggles as she takes off the blue gauze boob - it turns out the surgeon from Tuesday is notorious for the size of the dressings he puts on. But she's very gentle and unveils a really rather neat looking job into which the first drips simply click.
Once things are up and running, DH disappears off for a bit of R&R. His parents are staying for a few days and I'm happy to be left with the DVD player, watching "The Killing". He's back in time for the ceremonial unclipping. This portacath thing is marvellous, I haven't felt a thing today.
No-one mentioned Mike Tyson
Portacath day. And the bloods prove the first stumbling block again. My neutrophils have improved but my platelet count is below the acceptable levels to operate. However, the surgeon agrees to go ahead anyway as they're not too far out (10.4 as opposed to 11.1). What a relief!
Once we're good to go the theatre nurse comes to get me. She asks DH whether he's hanging around or not; when he replies, "No, I'll come back later," I chip in, "He's off to buy a motorbike." Her response is immediate, "Ohhh, bikers! I used to have a Fazer..." and we are off for the short stroll to theatre, nattering about adjustments to motorbikes for those who aren't 6 foot 3 inches tall. For a profession that is supposed to refer to bikers as "donors", there seem to be a lot of them around - the hospital physio was one, too.
In theatre they warm me up, thankfully, and introduce me to the surgeon doing the procedure, who is not the one I saw on Friday. He and I agree a suitable insertion site, away from bra straps and car seat belts, and he marks me up with a hi tech biro before putting me under. Bless him, he was worried about me wearing low cut tops at Christmas parties. I suspect making it to any Christmas parties will be amazing in itself - if I look ok that'll be a miracle!
The sedation is deep, much deeper than the colonoscopy, and I sleep through the whole thing. This may be because I am tired, too, but that suits me fine. All I remember is a lot of tugging and pulling about at one point, but I am not conscious enough to care.
Boy do I care by the time evening comes though. I sleep fitfully, propped up by pillows, feeling like Mike Tyson has done me over. The fact that the access needle is already in for Thursday's chemo, meaning that I look like I have an extra blue gauze boob on my left chest, really doesn't help and the dressings are quite bloody, probably owing to the low platelet count so the overall experience is not pretty. I hope this is the right decision.
Once we're good to go the theatre nurse comes to get me. She asks DH whether he's hanging around or not; when he replies, "No, I'll come back later," I chip in, "He's off to buy a motorbike." Her response is immediate, "Ohhh, bikers! I used to have a Fazer..." and we are off for the short stroll to theatre, nattering about adjustments to motorbikes for those who aren't 6 foot 3 inches tall. For a profession that is supposed to refer to bikers as "donors", there seem to be a lot of them around - the hospital physio was one, too.
In theatre they warm me up, thankfully, and introduce me to the surgeon doing the procedure, who is not the one I saw on Friday. He and I agree a suitable insertion site, away from bra straps and car seat belts, and he marks me up with a hi tech biro before putting me under. Bless him, he was worried about me wearing low cut tops at Christmas parties. I suspect making it to any Christmas parties will be amazing in itself - if I look ok that'll be a miracle!
The sedation is deep, much deeper than the colonoscopy, and I sleep through the whole thing. This may be because I am tired, too, but that suits me fine. All I remember is a lot of tugging and pulling about at one point, but I am not conscious enough to care.
Boy do I care by the time evening comes though. I sleep fitfully, propped up by pillows, feeling like Mike Tyson has done me over. The fact that the access needle is already in for Thursday's chemo, meaning that I look like I have an extra blue gauze boob on my left chest, really doesn't help and the dressings are quite bloody, probably owing to the low platelet count so the overall experience is not pretty. I hope this is the right decision.
Tuesday 30 October 2012
Being Mummy
Monday is almost free of medical appointments (Zoladex jab - I made the mistake of looking at the needle and discovering it is really rather large) and it is also half term. After a weekend of DS being a horrible two year old (everything is "NO!"), TN is back to put things on an even keel.
The four of us have a lovely day, carving pumpkins, making Halloween decorations and biscuits and making the Christmas cake. Gloriously domestic and reassuringly normal. Another boost I badly needed after last week and good for the children to see Mummy being, well, Mummy for a little while.
The four of us have a lovely day, carving pumpkins, making Halloween decorations and biscuits and making the Christmas cake. Gloriously domestic and reassuringly normal. Another boost I badly needed after last week and good for the children to see Mummy being, well, Mummy for a little while.
Unexpected bonuses
The bonuses of the delay to cycle 2 are:
1) The portacath can go in
2) I have a prescription to sit down and rest
3) My taste for sweet things and wine has returned! Won't help with the weight, but helps with the head a bit...
1) The portacath can go in
2) I have a prescription to sit down and rest
3) My taste for sweet things and wine has returned! Won't help with the weight, but helps with the head a bit...
Plug and play
Immediately after the reflexologist comes the consultation with the radiologist, so back to hospital it is.
There's some suggestion that Tuesday's theatre slot, around which we have rearranged everything including my next Zoladex injection (not an easy task, had to play the chemo patient card for that one which I don't like doing but thank goodness it works and thank goodness it exists), may not be available. This renders DH, already grumpy about something completely unrelated, absolutely furious and leaves him making all sorts of super assertive noises about not putting up with this. I tell him to hold on until we know there's a problem.
He then further blots his copybook by answering for me every question the consultant asks. I have cancer, I am neither mute nor stupid as a result (although the drugs are messing with my memory. Well, that's my story and I'm sticking to it) so when the consultant pops out for a second I tell him to calm down and keep quiet unless I do miss something out.
The procedure seems both routine and straightforward, and they do it under sedation. This will be rather heavier than that for the colonoscopy; frankly I'm not too bothered as long as there's no Picolax involved. The portacath itself is bigger than I expected, being about the size of a ten pence piece around and about a centimetre deep. It's titanium, so fine with imaging machinery and airport scanners. It's also pink. I'm tempted to ask what other colours they have.
My line on the surgery - we have rearranged everything around a Tuesday date so please can we go with that - works and the date is duly confirmed. So no more hand cannulas for the rest of my treatment. This also cheers me up; I hadn't realised how much the cannulas were bothering me and had been bothering me since the CT scan.
There's some suggestion that Tuesday's theatre slot, around which we have rearranged everything including my next Zoladex injection (not an easy task, had to play the chemo patient card for that one which I don't like doing but thank goodness it works and thank goodness it exists), may not be available. This renders DH, already grumpy about something completely unrelated, absolutely furious and leaves him making all sorts of super assertive noises about not putting up with this. I tell him to hold on until we know there's a problem.
He then further blots his copybook by answering for me every question the consultant asks. I have cancer, I am neither mute nor stupid as a result (although the drugs are messing with my memory. Well, that's my story and I'm sticking to it) so when the consultant pops out for a second I tell him to calm down and keep quiet unless I do miss something out.
The procedure seems both routine and straightforward, and they do it under sedation. This will be rather heavier than that for the colonoscopy; frankly I'm not too bothered as long as there's no Picolax involved. The portacath itself is bigger than I expected, being about the size of a ten pence piece around and about a centimetre deep. It's titanium, so fine with imaging machinery and airport scanners. It's also pink. I'm tempted to ask what other colours they have.
My line on the surgery - we have rearranged everything around a Tuesday date so please can we go with that - works and the date is duly confirmed. So no more hand cannulas for the rest of my treatment. This also cheers me up; I hadn't realised how much the cannulas were bothering me and had been bothering me since the CT scan.
Reflexology
I had already booked the reflexologist for Friday afternoon, in the hope of helping my system cope with the immediate aftermath of cycle 2. Given the low neutrophil count, I reckon my system could still do with a boost and mentally I certainly could, so I go anyway.
The reflexologist is actually an old family friend who happens to live not far away. My parents act as the taxi as although I can drive myself the appointment had been arranged on the basis that I wouldn't be able to, and I reckoned Mum and Dad would like the chance of a catch up with her husband whilst she works her magic.
I have pretty clear lines when it comes to alternative medicine. Some is proven to work, or at least has some basis in reality and no negative side effects. Into this category fall acupuncture and reflexology, both of which I've had and both of which have worked for me before. Some therapies are just too "out there" for me and make no logical sense, such as reiki and crystal therapy. They work for some people, but they're a leap too far for me. Normally I'd go for acupuncture but frankly I've had enough of needles and all the practitioners I know are in London. I had reflexology when I was pregnant with DD, who was overdue and making me grumpy, and the reflexologist (same lady) pressed on a particular area of my foot, pointed out the swelling there and stated that that area was connected to my uterus. I was sceptical, until after DD was born when that swelling, which was very localised so not swollen pregnant lady ankles, disappeared. Proof enough for me, and anyway I like a nice foot massage.
She is gentle and soothing, yet still manages to tick me off for not resting enough! For 45 minutes she works on my feet, declaring that most of my organs seem to be ok and taking the time to give my kidneys and spleen a boost. She also picks up on issues with my sciatic nerve, which relate to poor posture when carrying my giant son (that classic sticking out of the hip to rest your baby on it is not, surprise surprise, any good for your back) that then causes problems in my calf when I run. I hadn't mentioned that to her at all, nor the upper back and neck tension I've been experiencing because of poor posture post-surgery owing to compromised core muscles and an old rugby injury that she also picks up on.
Interestingly she tells me to check the ingredients of the fruit tea I've been drinking as an alternative to regular tea, as I thought the fruit tea would be more hydrating. Apparently lots of them contain hibiscus, which can cause stomach cramps. When I get home and check, she's right. All of them do. More water, less tea then. Her other nutritional advice is lots of anti-oxidants.
When she has finished I feel much better mentally, and generally boosted. Even if nothing else happens, the mental boost is worth it. I hadn't realised quite how down I'd become until it lifted a bit.
The reflexologist is actually an old family friend who happens to live not far away. My parents act as the taxi as although I can drive myself the appointment had been arranged on the basis that I wouldn't be able to, and I reckoned Mum and Dad would like the chance of a catch up with her husband whilst she works her magic.
I have pretty clear lines when it comes to alternative medicine. Some is proven to work, or at least has some basis in reality and no negative side effects. Into this category fall acupuncture and reflexology, both of which I've had and both of which have worked for me before. Some therapies are just too "out there" for me and make no logical sense, such as reiki and crystal therapy. They work for some people, but they're a leap too far for me. Normally I'd go for acupuncture but frankly I've had enough of needles and all the practitioners I know are in London. I had reflexology when I was pregnant with DD, who was overdue and making me grumpy, and the reflexologist (same lady) pressed on a particular area of my foot, pointed out the swelling there and stated that that area was connected to my uterus. I was sceptical, until after DD was born when that swelling, which was very localised so not swollen pregnant lady ankles, disappeared. Proof enough for me, and anyway I like a nice foot massage.
She is gentle and soothing, yet still manages to tick me off for not resting enough! For 45 minutes she works on my feet, declaring that most of my organs seem to be ok and taking the time to give my kidneys and spleen a boost. She also picks up on issues with my sciatic nerve, which relate to poor posture when carrying my giant son (that classic sticking out of the hip to rest your baby on it is not, surprise surprise, any good for your back) that then causes problems in my calf when I run. I hadn't mentioned that to her at all, nor the upper back and neck tension I've been experiencing because of poor posture post-surgery owing to compromised core muscles and an old rugby injury that she also picks up on.
Interestingly she tells me to check the ingredients of the fruit tea I've been drinking as an alternative to regular tea, as I thought the fruit tea would be more hydrating. Apparently lots of them contain hibiscus, which can cause stomach cramps. When I get home and check, she's right. All of them do. More water, less tea then. Her other nutritional advice is lots of anti-oxidants.
When she has finished I feel much better mentally, and generally boosted. Even if nothing else happens, the mental boost is worth it. I hadn't realised quite how down I'd become until it lifted a bit.
Thursday 25 October 2012
Snakes and ladders
And I just hit a snake.
Thursdays are always chaos in this house as commutes and school run and breakfast all collide with the cleaner coming in. This morning was worse as DD woke up last night with a temperature and was still suffering when she woke, so no school run, no activities for DS and DH at home to take me to hospital, which all adds up to a lot of people under foot by 8.30.
Despite this, DH and I make good time and arrive early. The room is stiflingly hot and right next to a building site, but at least has more natural light than last time. There's a weight check and blood pressure check and I am not particularly pleased to find that I've put on half a kilo since my last weigh in. According to the HCA who is doing the checks, some people lose weight and some put it on. Neither is in my plan - given that exercise seems to be a non-starter for me I guess that means a bit more diet control. However, all is within tolerance for chemo so we wait for someone to come and take the bloods.
One of the staff nurses, who I recognise from last time, comes to see me. She asks how I've been and I tell her about the side effects, all of which she indicates are perfectly normal. She puts the cannula in my right hand but seems to struggle to get blood out of it; even once it is flowing properly she finds flushing it afterwards tricky. Finally satisfied, she takes the blood off to the lab.
DH and I sit at opposite sides of the room, not really talking but playing on our respective phones. I read an Internet forum in an attempt to distract myself, but half of me is drifting off to sleep as the room is so warm. My lunch order is taken and coffee is brought - one thing the rest week has done is restore my taste for sweet things, coffee and wine. But nothing much punctures the minutes as the clock ticks on towards midday.
At 11.45 the staff nurse comes back. My neutrophil level - part of the white blood cell count - is 1.4 and the chemotherapy protocol requires that it be at least 2. No chemo today. The staff nurse pats my knee and says she will go and see what the arrangements are for fitting my deep vein line. When she has gone I have a proper cry. It's partly frustration at a set back at this early point and partly fury that next week's arrangements to go away are now completely messed up. It's also quite a lot of despair. How can I get over this, get on with my life, if I can't even get through one cycle of chemo?
DH is determined to be chipper about it all and tells me, in so many words, to pull myself together. I tell him I want to wallow in it for a bit and that frankly I'm allowed to. We go and have a nice lunch and do a couple of chores, including picking up our latest animation cell acquisition from the framers. The cell looks gorgeous and that at least cheers me up a bit, as does going and playing on all the motorbikes in the showroom whilst DH sorts out something with his bike.
But when I get home I'm shattered. Drained out behind the eyes. I make the calls I have to make to rejig the diary for the next few days then give up and go and sit on the sofa and watch telly with my children.
Thursdays are always chaos in this house as commutes and school run and breakfast all collide with the cleaner coming in. This morning was worse as DD woke up last night with a temperature and was still suffering when she woke, so no school run, no activities for DS and DH at home to take me to hospital, which all adds up to a lot of people under foot by 8.30.
Despite this, DH and I make good time and arrive early. The room is stiflingly hot and right next to a building site, but at least has more natural light than last time. There's a weight check and blood pressure check and I am not particularly pleased to find that I've put on half a kilo since my last weigh in. According to the HCA who is doing the checks, some people lose weight and some put it on. Neither is in my plan - given that exercise seems to be a non-starter for me I guess that means a bit more diet control. However, all is within tolerance for chemo so we wait for someone to come and take the bloods.
One of the staff nurses, who I recognise from last time, comes to see me. She asks how I've been and I tell her about the side effects, all of which she indicates are perfectly normal. She puts the cannula in my right hand but seems to struggle to get blood out of it; even once it is flowing properly she finds flushing it afterwards tricky. Finally satisfied, she takes the blood off to the lab.
DH and I sit at opposite sides of the room, not really talking but playing on our respective phones. I read an Internet forum in an attempt to distract myself, but half of me is drifting off to sleep as the room is so warm. My lunch order is taken and coffee is brought - one thing the rest week has done is restore my taste for sweet things, coffee and wine. But nothing much punctures the minutes as the clock ticks on towards midday.
At 11.45 the staff nurse comes back. My neutrophil level - part of the white blood cell count - is 1.4 and the chemotherapy protocol requires that it be at least 2. No chemo today. The staff nurse pats my knee and says she will go and see what the arrangements are for fitting my deep vein line. When she has gone I have a proper cry. It's partly frustration at a set back at this early point and partly fury that next week's arrangements to go away are now completely messed up. It's also quite a lot of despair. How can I get over this, get on with my life, if I can't even get through one cycle of chemo?
DH is determined to be chipper about it all and tells me, in so many words, to pull myself together. I tell him I want to wallow in it for a bit and that frankly I'm allowed to. We go and have a nice lunch and do a couple of chores, including picking up our latest animation cell acquisition from the framers. The cell looks gorgeous and that at least cheers me up a bit, as does going and playing on all the motorbikes in the showroom whilst DH sorts out something with his bike.
But when I get home I'm shattered. Drained out behind the eyes. I make the calls I have to make to rejig the diary for the next few days then give up and go and sit on the sofa and watch telly with my children.
Tuesday 23 October 2012
A doctor calls
Tuesday evening and TN is just putting the children to bed whilst I idle around downstairs (gathering strength to put them to bed - I might be able to lift DS but that doesn't make him any easier to persuade to get into bed, particularly now we have taken the side off his cot so he is in a Big Boy Bed from which, unfortunately, he can escape) when the phone rings. It's the oncologist. She will be on holiday on Thursday so she wants to talk about the side effects I have been experiencing. I know she's busy, especially if she's ringing round all her patients, so I keep it to the key concerns that I was going to raise with her anyway.
Chief amongst these is the effect the iv had on my left hand. Two and a half weeks later and my hand is still feeling bruised. She surprises me by not suggesting what I thought she would suggest - turning the drip down - but rather that we put in a deep vein line, either a PICC or a portacath. Apparently she has been receiving more reports of this problem with oxaliplatin, and putting it into a bigger vein seems to help. The procedure is done under sedation; sadly it won't be for this time round but it will be for round three. Somehow talking to her makes me feel more positive again. She's on my side and understands. Not that lots of people aren't on my side - far from it - but she can fix stuff.
Chief amongst these is the effect the iv had on my left hand. Two and a half weeks later and my hand is still feeling bruised. She surprises me by not suggesting what I thought she would suggest - turning the drip down - but rather that we put in a deep vein line, either a PICC or a portacath. Apparently she has been receiving more reports of this problem with oxaliplatin, and putting it into a bigger vein seems to help. The procedure is done under sedation; sadly it won't be for this time round but it will be for round three. Somehow talking to her makes me feel more positive again. She's on my side and understands. Not that lots of people aren't on my side - far from it - but she can fix stuff.
Cycle two approaches
As cycle two approaches, my mood isn't getting better. I feel oddly bereft when I have no drugs to take in the rest week and I feel exhausted. At a guess, it's my body trying to recover from the two week assault but it is pulling my mood down as well. DH is working hard and late, and by the time he gets back I am too tired for much of anything so I'm in bed. I don't really want to grumble to him, anyway - it's not what he needs and it is only grumbling, I know I'll pick up.
I have been out and about and whilst that doesn't help with the tiredness it does help with the mood. A couple of nice lunches with old and good friends, who I can give the potted update to and then talk about rubbish and mindless gossip and things that can happen when all this is done. I also went to the hairdresser and, following the advice of the Macmillan nurse, got my long hair chopped short. It turned out that my hairdresser, who I've been seeing for years, has always wanted to cut my hair short and already had planned what he would do if the opportunity arose! Fingers crossed that will lessen the strain on the hair and less of it will break off. Although the Zoladex may have a similar effect - when I was pregnant I never shed much hair and never grew much either and my eyebrows don't seem to be growing as fast as usual so maybe the one will cancel out the other?
The sad thing was that my hairdresser, after he'd got over the shock of my news, said that he sees four women a year who are in the same position. That's one hairdresser in one salon in the middle of London. How wrong is that? How widespread is this shit?
I have been out and about and whilst that doesn't help with the tiredness it does help with the mood. A couple of nice lunches with old and good friends, who I can give the potted update to and then talk about rubbish and mindless gossip and things that can happen when all this is done. I also went to the hairdresser and, following the advice of the Macmillan nurse, got my long hair chopped short. It turned out that my hairdresser, who I've been seeing for years, has always wanted to cut my hair short and already had planned what he would do if the opportunity arose! Fingers crossed that will lessen the strain on the hair and less of it will break off. Although the Zoladex may have a similar effect - when I was pregnant I never shed much hair and never grew much either and my eyebrows don't seem to be growing as fast as usual so maybe the one will cancel out the other?
The sad thing was that my hairdresser, after he'd got over the shock of my news, said that he sees four women a year who are in the same position. That's one hairdresser in one salon in the middle of London. How wrong is that? How widespread is this shit?
Wednesday 17 October 2012
E...n....e...r...g...y....
None whatsoever. Zip. Nil. Niet. Zero.
After ten days of my saintly in-laws being here and generally shaming me with their ability to do more in a day than I usually manage in a week, DH and I were really looking forward to having the house back. Much as we love having people around, it's nice to have our space back too.
But the smallest of tasks renders me drained. A walk to the supermarket and some light shopping = 30 minutes' sit down and complete inability to concentrate or process information. DD and I had a major falling out last night because she wasn't doing as I asked and I didn't have the wit to think of a less confrontational way to sort it out. And I can't even begin to describe the lethargy that comes over me when I contemplate the mound of emails I have to write. All of which I know sounds incredibly ungrateful and brattish and believe me I don't mean to - the number of people who pop up and check on me is humbling and marvellous - but I feel utterly wrung out. The decision to take a four month sign off from the doctor is looking like a good one. Now I have to reconcile that decision with my usual need to live life at the speed limit plus ten per cent. Slowing down is hard to do.
After ten days of my saintly in-laws being here and generally shaming me with their ability to do more in a day than I usually manage in a week, DH and I were really looking forward to having the house back. Much as we love having people around, it's nice to have our space back too.
But the smallest of tasks renders me drained. A walk to the supermarket and some light shopping = 30 minutes' sit down and complete inability to concentrate or process information. DD and I had a major falling out last night because she wasn't doing as I asked and I didn't have the wit to think of a less confrontational way to sort it out. And I can't even begin to describe the lethargy that comes over me when I contemplate the mound of emails I have to write. All of which I know sounds incredibly ungrateful and brattish and believe me I don't mean to - the number of people who pop up and check on me is humbling and marvellous - but I feel utterly wrung out. The decision to take a four month sign off from the doctor is looking like a good one. Now I have to reconcile that decision with my usual need to live life at the speed limit plus ten per cent. Slowing down is hard to do.
Thursday 11 October 2012
There's cancer and there's cancer
This might be controversial, and is purely my own position (blinded by denial), but I think there's cancer and there's cancer. I was watching a trailer for a programme showing a number of cancer victims who have got together and formed a choir. The voice over tells stories of bravery and courage and fight, aided by the power of music. I can't identify with them at all. Then today I was reading a thread on Mumsnet where lots of people were paying tribute to loved ones who had fought and mostly lost their battles. Still can't identify with this version of cancer. It is a terrible disease but I don't feel like a victim, or brave. I just have to get on with it.
Side effects
One week and 84 tablets later, I am starting to see a clearer picture of the side effects of this chemo. That is to say as clear as mud. I can't pin down at all what might happen, when or in response to what. This does not sit well with my control freak nature but I guess I'd better sit back and get on with:
1) Peripheral neuropathy. Pins and needles, mostly in my fingers and the arm the drip was in. The first day or so of extreme cold sensitivity has given way to cumulative sensitivity in that I can't be in the cold for too long. It is October. This may be tricky.
2) Jaw pain. Again more severe day one to three (where drip day is day one); on eating the first mouthful causes pain in the soft tissue of my jaw hinge. Hospital's initial advice, from the on call doctor via duty matron out of hours, was that this had nothing to do with the chemo. That somehow seemed unlikely given it wasn't happening the day before chemo. Duty matron later called and confirmed it was a known one and to keep an eye on it. This may be tricky.
3) Facial tics. These seem to be a response to cold too, triggering my eyes ticcing shut for 30 seconds or so on one occasion (fortunately when I was walking on the pavement). Also in response to the faces you pull when you're doing essential things like plucking eyebrows or putting on mascara - that left me with a cat's bum pout that at least made me realise that Botox is probably never going to be a good idea.
4) Muscle weakness. I can hold a pen, and type, but with much less accuracy. My handwriting is rotten at the best of times but this really isn't going to help. I may be forced to requalify as a doctor.
5) Nausea. Pretty much a given and most of the drugs I have are to combat this. In the interests of science I conducted an hour long investigation into whether or not watching The Great British Bake Off is good for nausea. I shan't be looking at creme patisserie again. Eating small plain things, like crackers, can help, but apart from putting me off sweet stuff my appetite seems unaffected.
6) Tiredness. At random times and very suddenly. So I sit down and have a rest. At least I have that option available.
7) Dry/tacky mouth with a bad taste to it.
8) Needing to pee in the middle of the night.
Wonder what else will come up?
1) Peripheral neuropathy. Pins and needles, mostly in my fingers and the arm the drip was in. The first day or so of extreme cold sensitivity has given way to cumulative sensitivity in that I can't be in the cold for too long. It is October. This may be tricky.
2) Jaw pain. Again more severe day one to three (where drip day is day one); on eating the first mouthful causes pain in the soft tissue of my jaw hinge. Hospital's initial advice, from the on call doctor via duty matron out of hours, was that this had nothing to do with the chemo. That somehow seemed unlikely given it wasn't happening the day before chemo. Duty matron later called and confirmed it was a known one and to keep an eye on it. This may be tricky.
3) Facial tics. These seem to be a response to cold too, triggering my eyes ticcing shut for 30 seconds or so on one occasion (fortunately when I was walking on the pavement). Also in response to the faces you pull when you're doing essential things like plucking eyebrows or putting on mascara - that left me with a cat's bum pout that at least made me realise that Botox is probably never going to be a good idea.
4) Muscle weakness. I can hold a pen, and type, but with much less accuracy. My handwriting is rotten at the best of times but this really isn't going to help. I may be forced to requalify as a doctor.
5) Nausea. Pretty much a given and most of the drugs I have are to combat this. In the interests of science I conducted an hour long investigation into whether or not watching The Great British Bake Off is good for nausea. I shan't be looking at creme patisserie again. Eating small plain things, like crackers, can help, but apart from putting me off sweet stuff my appetite seems unaffected.
6) Tiredness. At random times and very suddenly. So I sit down and have a rest. At least I have that option available.
7) Dry/tacky mouth with a bad taste to it.
8) Needing to pee in the middle of the night.
Wonder what else will come up?
Monday 8 October 2012
Things you should never get caught with in your handbag
Small bags containing white powder. In my case it is L-Glutamine, to counteract the peripheral neuropathy from the chemo. However, I'm slightly nervous at taking it into a private members' club in London where signs abound telling members and guests that drug taking will not be tolerated.
The reason I am taking my drugs to a private members' club is that DH and I have a wedding to go to, the Saturday after my chemo starts. Nothing on earth, short of actual coma, would make me miss this. It is the wedding of my text hugger friend and her long term boyfriend and after their two year battle with her breast cancer she is clear and her hair is starting to grow back. They both look radiantly happy and she looks beautiful. The small ceremony is informal, and the registrar who performs the service joins in the fun.
There are long hugs between the four of us. I hope we are in as good a shape as a couple by the end of this.
The reason I am taking my drugs to a private members' club is that DH and I have a wedding to go to, the Saturday after my chemo starts. Nothing on earth, short of actual coma, would make me miss this. It is the wedding of my text hugger friend and her long term boyfriend and after their two year battle with her breast cancer she is clear and her hair is starting to grow back. They both look radiantly happy and she looks beautiful. The small ceremony is informal, and the registrar who performs the service joins in the fun.
There are long hugs between the four of us. I hope we are in as good a shape as a couple by the end of this.
You want to put THAT in my veins?
C- day has arrived. Like D-Day, but with less chance of being revisited by Stephen Spielberg. Like D-Day, there is a lot of waiting around for action. At least my day is designed to keep me alive though.
DH and I arrive, book in and are shown to the room, which is a fairly bog standard hospital room except for the crucifix in the corner - this hospital's roots are in the Catholic church and I don't, despite being a Christian, feel all that comforted. It feels a bit sinister, like there's a lack of hope in the room, a black splinter in the pale blue paintwork. I know I should feel quite the contrary.
We wait for a bit, and nothing happens. So I toddle off to the loo, wanting, how can I put this, a bit of time to perform the necessary function. At which point the consultant arrives, and has left again before I can rearrange myself to come out and see her. Then I don't dare move in case she comes back, despite the fact that not going to the loo will doubtless make the constipation situation worse, not better. She does eventually come back with the Macmillan nurse in tow and explains again what will happen today, getting my signature on the consent form we realised yesterday I hadn't signed.
And we wait for a bit longer, so I go off to the loo again. Which is when the nurse comes in. Back to the chair to wait...
Cannula in, the first drip up is straight saline to keep the vein and port open until they're ready. Then a pack of glucose - 10 mins. Then a pack of magnesium and calcium goes in over the course of the next hour to combat the peripheral neuropathy that's one of the major side effects of the Oxaliplatin. After that, a syringe of steroids and a syringe full of anti-sickness drugs before the main event. By this point I've been wired up to a drip of some description for the better part of 2 hours already. Cutting up my lunch - a jacket potato - proves impossible and I manage to distract DH's attention from his iPad game for long enough to get him to do it for me.
Aha, the main course. Which arrives in a clear plastic box sealed with bright yellow tape that says "TOXIC" and carries pictures of skulls and crossbones. Nothing like making it obvious that this is kill or cure. The nurse doesn't seem to see the joke though. Maybe if you do this all the time you don't find it surreal any more. The first 30 minutes are ok, nothing happens. Then my arm starts to tingle. Then I have pins and needles in my whole hand, reaching up my arm and I decide that this probably isn't just me sitting awkwardly. The nurse brings a warm pad wrapped in a high tech cover (pillowcase) to go over my arm, which helps a bit. Other than that there is nothing to do but sit and wait for the poison to go in, which it does over the next 2 hours.
For dessert, there is a final flush of glucose. The drip rate is too high and my vein is throbbing, so the nurse turns it down - it just means it takes longer. All done by 3.30; having arrived at 10 am and we leave with an enormous pharmacy bag containing the tablet chemo and more stuff to manage side effects. The steroids, apparently, should not be taken after 5 pm because they make you hyper. The pill-popping timetable is too complicated for me to get my head round.
The autumn sunshine is extra bright as we leave, and I have that slightly disorientated feeling that you get when you leave the cinema in daylight, as if somehow the day should be all done because my one task has been done. The next obvious side effect hits - the slightest touch of cold feels like ice. Air, water, door handles, taps, everything. First stop is the bike shop for some gloves, and I find a thin woolly pair with a little grip to them that will at least let me hold a steering wheel properly once I'm back in the driving seat.
DH and I arrive, book in and are shown to the room, which is a fairly bog standard hospital room except for the crucifix in the corner - this hospital's roots are in the Catholic church and I don't, despite being a Christian, feel all that comforted. It feels a bit sinister, like there's a lack of hope in the room, a black splinter in the pale blue paintwork. I know I should feel quite the contrary.
We wait for a bit, and nothing happens. So I toddle off to the loo, wanting, how can I put this, a bit of time to perform the necessary function. At which point the consultant arrives, and has left again before I can rearrange myself to come out and see her. Then I don't dare move in case she comes back, despite the fact that not going to the loo will doubtless make the constipation situation worse, not better. She does eventually come back with the Macmillan nurse in tow and explains again what will happen today, getting my signature on the consent form we realised yesterday I hadn't signed.
And we wait for a bit longer, so I go off to the loo again. Which is when the nurse comes in. Back to the chair to wait...
Cannula in, the first drip up is straight saline to keep the vein and port open until they're ready. Then a pack of glucose - 10 mins. Then a pack of magnesium and calcium goes in over the course of the next hour to combat the peripheral neuropathy that's one of the major side effects of the Oxaliplatin. After that, a syringe of steroids and a syringe full of anti-sickness drugs before the main event. By this point I've been wired up to a drip of some description for the better part of 2 hours already. Cutting up my lunch - a jacket potato - proves impossible and I manage to distract DH's attention from his iPad game for long enough to get him to do it for me.
Aha, the main course. Which arrives in a clear plastic box sealed with bright yellow tape that says "TOXIC" and carries pictures of skulls and crossbones. Nothing like making it obvious that this is kill or cure. The nurse doesn't seem to see the joke though. Maybe if you do this all the time you don't find it surreal any more. The first 30 minutes are ok, nothing happens. Then my arm starts to tingle. Then I have pins and needles in my whole hand, reaching up my arm and I decide that this probably isn't just me sitting awkwardly. The nurse brings a warm pad wrapped in a high tech cover (pillowcase) to go over my arm, which helps a bit. Other than that there is nothing to do but sit and wait for the poison to go in, which it does over the next 2 hours.
For dessert, there is a final flush of glucose. The drip rate is too high and my vein is throbbing, so the nurse turns it down - it just means it takes longer. All done by 3.30; having arrived at 10 am and we leave with an enormous pharmacy bag containing the tablet chemo and more stuff to manage side effects. The steroids, apparently, should not be taken after 5 pm because they make you hyper. The pill-popping timetable is too complicated for me to get my head round.
The autumn sunshine is extra bright as we leave, and I have that slightly disorientated feeling that you get when you leave the cinema in daylight, as if somehow the day should be all done because my one task has been done. The next obvious side effect hits - the slightest touch of cold feels like ice. Air, water, door handles, taps, everything. First stop is the bike shop for some gloves, and I find a thin woolly pair with a little grip to them that will at least let me hold a steering wheel properly once I'm back in the driving seat.
Sometimes you don't have the words
The morning of the first day of chemo I take DD to school. She's unusually clingy and won't stay in the class line because she says the boys are making fun of her (this is my daughter we're talking about so normally she wouldn't take any rubbish). I squat down to her level to try and find out what's wrong, so as the classes move in to the school we are both little people in a forest of adult legs. But she won't be drawn on it until I mention the word "hospital". I was trying not to lead her, but I hit the nail on the head and can only watch as her face crumples and she clings to me like she's drowning, incoherently sobbing into my coat.
I'm not supposed to, but I lift her up and cuddle her until all the rest of her class have gone in. Then I find her teacher and hand her over, explaining through my own tears what's happening. The poor woman - every time I've met her she's had to cope with a family drama. Yet another reason not to take up teaching...
As I leave I bump into a former neighbour who offers a shoulder to cry on. She is, as always, offering to do anything we might need but this is the best thing she can do for me right now.
When I phone the school office later, the secretary says all is well in DD's class. When I get home from hospital, DD is ecstatic to see me. Turns out she didn't realise I was coming home today and she thought I was staying in hospital. Another lesson learnt.
I'm not supposed to, but I lift her up and cuddle her until all the rest of her class have gone in. Then I find her teacher and hand her over, explaining through my own tears what's happening. The poor woman - every time I've met her she's had to cope with a family drama. Yet another reason not to take up teaching...
As I leave I bump into a former neighbour who offers a shoulder to cry on. She is, as always, offering to do anything we might need but this is the best thing she can do for me right now.
When I phone the school office later, the secretary says all is well in DD's class. When I get home from hospital, DD is ecstatic to see me. Turns out she didn't realise I was coming home today and she thought I was staying in hospital. Another lesson learnt.
Thursday 4 October 2012
Snap!
My Mum and Dad are babysitting so we can go out. Mum arrives bearing a parcel from Macmillan, containing all the booklets they sent her after she had a chat with their support helpline. I have my bundle of Macmillan leaflets courtesy of the nurse at today's consultation. Mum and I play Snap with the leaflets on our kitchen counter. We have only one in common, about chemotherapy as a treatment. Clearly there is a lot of reading to do - the pile is, in total, about 7 inches thick and covers everything from the medical side about the cancer and the treatment to the side effects of treatment and a number of support issues in between. Nutrition, telling your children, alternative remedies - they're all covered. I think having these as reference will be useful and I wish I'd had them at first diagnosis. Maybe not all of them as that might be too much, but the ones about the cancer itself and telling the children would have been useful.
Pre-assessment
It's Wednesday and it is back to hospital to see the Macmillan nurse. She has a large pile of booklets on her desk, including my hospital record which is a centimetre thick.
Today's appointment is actually not clinical - the only clinical activity is taking my height and weight so that my dosage can be calculated. Rather there is a lot of talking, explaining exactly what will happen and going over the side effects and what I should do about them. She is very focused on how much of last week's consultation I have understood, and gives me the opportunity to ask questions. She is also very helpful on management of side effects, offering strong suggestions such as using a mouthwash to prevent ulcers and bringing a scarf to sessions because the cold air can make you feel like your throat is closing up. The main potential side effects seem to be: neuropathy - pins and needles - in the hands and feet, hair thinning (she suggests I cut my shoulder length hair to lessen the weight so it breaks less), constipation (from the anti-sickness drugs), diahorrea (from the chemo drugs), mouth ulcers, increased sensitivity to cold, dry hands and feet, brittle nails and fatigue. I'm sure there's a couple in there that I have forgotten. There's a booklet, a bit like the maternity notes you get given here to carry around with you, that comes with a grid listing the side effects and grading their severity from white, which means call us to discuss managing it, then green, amber and red. If you're in the amber or red zone you're in trouble. Side effects apart there is help for everything if we need it - financial advice, emotional support, day-to-day practicalities. We're very lucky we don't need it right now, but it's comforting to know it's there if we do.
What I had assumed was that as week 3 is rest week, this would be my best week for going out and doing stuff. Apparently not - 7 to 10 days post chemo is when the body is at its lowest so the immune system is most compromised and the fatigue is worst. However, as I've already decided to get on with things, make arrangements and then break them if it's all too much, this won't really make a difference.
DH and I leave feeling a lot better informed. He has asked once or twice if I'm scared. Actually, I'm not. This needs doing, so let's just get on with it shall we?
Wednesday night DH and I go out for pre-chemo dinner. This involves rare steak, seafood, soft boiled eggs and a sampling of DH's cheese course so I can have my last taste of blue cheese. Looking at that list it doesn't sound very appetising but it really was! We talk about nice things to do post chemo and all sorts of non-cancer related things, and I leave the restaurant feeling almost normal. I just hope they don't check my alcohol levels in the morning bloods!
Today's appointment is actually not clinical - the only clinical activity is taking my height and weight so that my dosage can be calculated. Rather there is a lot of talking, explaining exactly what will happen and going over the side effects and what I should do about them. She is very focused on how much of last week's consultation I have understood, and gives me the opportunity to ask questions. She is also very helpful on management of side effects, offering strong suggestions such as using a mouthwash to prevent ulcers and bringing a scarf to sessions because the cold air can make you feel like your throat is closing up. The main potential side effects seem to be: neuropathy - pins and needles - in the hands and feet, hair thinning (she suggests I cut my shoulder length hair to lessen the weight so it breaks less), constipation (from the anti-sickness drugs), diahorrea (from the chemo drugs), mouth ulcers, increased sensitivity to cold, dry hands and feet, brittle nails and fatigue. I'm sure there's a couple in there that I have forgotten. There's a booklet, a bit like the maternity notes you get given here to carry around with you, that comes with a grid listing the side effects and grading their severity from white, which means call us to discuss managing it, then green, amber and red. If you're in the amber or red zone you're in trouble. Side effects apart there is help for everything if we need it - financial advice, emotional support, day-to-day practicalities. We're very lucky we don't need it right now, but it's comforting to know it's there if we do.
What I had assumed was that as week 3 is rest week, this would be my best week for going out and doing stuff. Apparently not - 7 to 10 days post chemo is when the body is at its lowest so the immune system is most compromised and the fatigue is worst. However, as I've already decided to get on with things, make arrangements and then break them if it's all too much, this won't really make a difference.
DH and I leave feeling a lot better informed. He has asked once or twice if I'm scared. Actually, I'm not. This needs doing, so let's just get on with it shall we?
Wednesday night DH and I go out for pre-chemo dinner. This involves rare steak, seafood, soft boiled eggs and a sampling of DH's cheese course so I can have my last taste of blue cheese. Looking at that list it doesn't sound very appetising but it really was! We talk about nice things to do post chemo and all sorts of non-cancer related things, and I leave the restaurant feeling almost normal. I just hope they don't check my alcohol levels in the morning bloods!
Sometimes you need the real expert
The ovary jab turns out to be a drug called Zoladex. I work this out the day before by googling (in breach of all my self imposed rules) "ovary suppressant" and trying to ignore the results of searches that say anything too scary. However the side effects detailed on the reliable sites look scary enough: hot flushes, mood swings, weight gain, vaginal dryness - mini-menopause, in effect. It is the weight gain that bothers me most as, whilst I always like to think that my figure has nothing to do with my self-confidence, I reckon I'm in pretty good shape for my age and history and if I'm honest that's important to me. Given I can't even run 100 yards right now, so exercise is out for another couple of weeks, I feel like I haven't got a chance here.
My Internet research also doesn't show much to support the chemical consultant's position about preserving ovarian function. There are only two pieces of research that mention it in relation to cancer generally. Both are from the US, one is positive and the other negative. Otherwise it is referred to in relation to breast and prostate cancer treatment, where it is used specifically to manage hormone issues. I leave a message for my Macmillan nurse (note for overseas readers: Macmillan is the UK's main cancer support charity and their nurses give practical, informed support of whatever form is needed to cancer patients and their families) to try and talk to her about it but she doesn't call back in time so I have to work this one out on my own. Take the risk that the chemo triggers premature menopause or take the drugs? In the end I opt for going for it. I know the chemical consultant is more up to speed with treatments than I am and whilst the effects will be unpleasant in the short term, long term it may help.
I have an appointment with the GP to have the jab. She wanders off to go and collect it from the surgery's stock and comes back with the nurse and a large-ish syringe. After giving me a telling off for still having my dressing on (to protect the incision site from rubbing - this is apparently not good and I need to take the dressing off now), the nurse talks me and the GP through the procedure. The jab goes into my stomach near my tummy button and into the fat layer. The needle is larger than an ordinary hypodermic and it's a bit painful, but it is over in seconds and both the nurse and the GP are very sympathetic. It turns out that the GP has only administered this jab twice before and the nurse has done it hundreds of times. I'm grateful she left it to the expert.
My Internet research also doesn't show much to support the chemical consultant's position about preserving ovarian function. There are only two pieces of research that mention it in relation to cancer generally. Both are from the US, one is positive and the other negative. Otherwise it is referred to in relation to breast and prostate cancer treatment, where it is used specifically to manage hormone issues. I leave a message for my Macmillan nurse (note for overseas readers: Macmillan is the UK's main cancer support charity and their nurses give practical, informed support of whatever form is needed to cancer patients and their families) to try and talk to her about it but she doesn't call back in time so I have to work this one out on my own. Take the risk that the chemo triggers premature menopause or take the drugs? In the end I opt for going for it. I know the chemical consultant is more up to speed with treatments than I am and whilst the effects will be unpleasant in the short term, long term it may help.
I have an appointment with the GP to have the jab. She wanders off to go and collect it from the surgery's stock and comes back with the nurse and a large-ish syringe. After giving me a telling off for still having my dressing on (to protect the incision site from rubbing - this is apparently not good and I need to take the dressing off now), the nurse talks me and the GP through the procedure. The jab goes into my stomach near my tummy button and into the fat layer. The needle is larger than an ordinary hypodermic and it's a bit painful, but it is over in seconds and both the nurse and the GP are very sympathetic. It turns out that the GP has only administered this jab twice before and the nurse has done it hundreds of times. I'm grateful she left it to the expert.
Sunday 30 September 2012
And finally some good news
Chemical consultant's secretary calls on Friday. She has faxed the details of the ovary jab to the surgery - thankfully, because I had forgotten what it was called, making life really difficult for the receptionist as she had no idea what she was trying to help me with (I should say at this point that doctors' receptionists, at least at this practice, are marvellous when you need them to be. Like when you are trying to arrange an appointment to get a drug you can't remember the name of that has to be done in a two day window so you can start chemo, and they have to try and help). She (chemical consultant's secretary) also has my cancer marker blood test results. They are normal so chemo can start. This is the best set of test results we have had from a consultant for a while. DH and I were starting to think that they could only ever be bad news.
Slowing down
The old saying that work expands to fill the time available is completely true for me. It's just that normally, with a minimum of an 11 hour working day (including commute), my time available is minimal so I live in perpetual fear that if I stop for a moment, the whole pack of cards will come down. But now I have nothing to do except focus on getting better, so a) this should be a relief and b) the things I do have to do should all be getting done, right?
What do I have to do? No work emails, but lots of messages from friends and people I haven't seen for ages, particularly thanks to Facebook where I am being very open about my condition and consequently getting lots of contact from old school/university friends, work colleagues, sports club friends and ante natal club (real and virtual) friends. Lots of texts. Bunches of the most glorious flowers. Cupcakes in abundance (my children are ecstatic, my dentist less so). A fabulous recovery pack from a bunch of friends I see all too rarely but which includes biscuits, nail varnish, word puzzles and some lovely bath products. I almost don't know where to start with getting back to everyone and thanking them. Then there's the diary management: lots of people want to come and see me, which is fab. But the uncertainty about the chemo is making this bit difficult as I have no idea what state I'll be in at any given point. The only practical way to deal with this one is to carry on as normal and hope that people don't mind if I flake out. Medical appointments also complicate this one, as for a change I don't think I can be choosy about times and so many appointments seem to be needed. I'm gutted to have to turn down lunch next week with an old, close friend who is having a similar period of down time for medical reasons and who is clearly finding it hard, because I've got lengthy medical appointments every day except Monday. There's all the admin that goes with being ill, of chasing down appointments (the ovary stopper jab took half a day and 5 phone calls to organise), getting authorisation from the insurance company, keeping work up to date on progress. Finally there is organising the support network and finding them all something to do - recovery is so good that there isn't much I can't do but I do still need people to help when I get tired.
Clearly I need a secretary. How lucky am I to have this problem though - finding myself busy because so many people want to help? How people get through this without this kind of support network I don't know and I'm pleased I don't have to find out.
What do I have to do? No work emails, but lots of messages from friends and people I haven't seen for ages, particularly thanks to Facebook where I am being very open about my condition and consequently getting lots of contact from old school/university friends, work colleagues, sports club friends and ante natal club (real and virtual) friends. Lots of texts. Bunches of the most glorious flowers. Cupcakes in abundance (my children are ecstatic, my dentist less so). A fabulous recovery pack from a bunch of friends I see all too rarely but which includes biscuits, nail varnish, word puzzles and some lovely bath products. I almost don't know where to start with getting back to everyone and thanking them. Then there's the diary management: lots of people want to come and see me, which is fab. But the uncertainty about the chemo is making this bit difficult as I have no idea what state I'll be in at any given point. The only practical way to deal with this one is to carry on as normal and hope that people don't mind if I flake out. Medical appointments also complicate this one, as for a change I don't think I can be choosy about times and so many appointments seem to be needed. I'm gutted to have to turn down lunch next week with an old, close friend who is having a similar period of down time for medical reasons and who is clearly finding it hard, because I've got lengthy medical appointments every day except Monday. There's all the admin that goes with being ill, of chasing down appointments (the ovary stopper jab took half a day and 5 phone calls to organise), getting authorisation from the insurance company, keeping work up to date on progress. Finally there is organising the support network and finding them all something to do - recovery is so good that there isn't much I can't do but I do still need people to help when I get tired.
Clearly I need a secretary. How lucky am I to have this problem though - finding myself busy because so many people want to help? How people get through this without this kind of support network I don't know and I'm pleased I don't have to find out.
Friday 28 September 2012
Step 2: chemo
First meeting with the oncologist yesterday. What a job that must be - all day every day dealing with the fall out from cancer diagnoses. I wonder if it makes you hard, just to cope with it all?
Despite warnings, my oncologist is not the stern, hard dragon I was expecting. She fires a huge amount of information at us very quickly, in a matter-of-fact fashion, but her opening line is "You must feel like you're on a roller coaster". She clearly understands.
The business end: staging wise, this is Dukes C. Not the worst, but not the best either. It is entirely possible that the cancer cells that are still in my body will not cause any further problems but medicine at the moment can't tell you which will and which won't, hence the chemo as a belt and braces exercise. She, too, wants me to see a geneticist to look at the family risk, but that's for later. Right now the regime will be a three week cycle of a two hour drip of Oxaliplatin then two weeks' of Capecitabine tablets, with the third week off. Repeat seven times. Side effects wise, I shouldn't lose my hair but it might thin. They will give me lots of anti-emetics for the nausea. Bowel function will be affected but which way is impossible to say. I may lose my appetite. I may be very tired. I may get pins and needles in my hands and feet. I may feel woozy, particularly on drip day. But otherwise life carries on as normal - I can drink, work, drive (except when feeling woozy), have sex and eat what I want.
A couple of things did surprise me. Sex requires condoms as bodily fluids can carry traces of the chemo drugs and so I could pass them to DH. Also she didn't mention compromised immunity, I did. Apparently, I just have to be sensible. In fairness, she is very sensible, pointing out that I have two small children and therefore can't live in a clean bubble; but if I suddenly feel unwell or get a temperature I should call the hospital immediately. Food wise, the things that could cause a problem for anyone who's immuno-compromised should be avoided.
The final surprise related to fertility. I'd assumed that it wasn't an issue as we always intended to stop at two children, so we gigglingly answered, "No!" when asked if we were planning more. But what I hadn't known is that chemo can trigger premature menopause and the likelihood of this is reduced if my ovaries are shut down for the duration of the chemo. So early next week I need a particular jab to start this process. I'm not clear what the side effects of this might be but it rather sounds like I'll be joining the hot flush set for a bit.
We are only with her for 15 minutes or so, then the specialist nurse takes over. More blood is taken, and I'm booked in for the pre-admission appointment on Wednesday as well as the first chemo session on Thursday.
My primary sensation is one of relief as we wander the shops afterward, looking for outfits for a friend's wedding next Saturday. I'm tempted to ask if we can delay for a week so I can go to the wedding unchemicalled, but DH quickly squashes that one. It's my text hugging friend anyway, so she will definitely understand if I'm flakey on the day. I'm not missing it though, not for the world!
Once home I try and take in the Macmillan leaflets on the side effects, but I can't. Physically and emotionally I am done in. It seems I wasn't as on top of the emotional turmoil caused by the wait as I thought I was.
Despite warnings, my oncologist is not the stern, hard dragon I was expecting. She fires a huge amount of information at us very quickly, in a matter-of-fact fashion, but her opening line is "You must feel like you're on a roller coaster". She clearly understands.
The business end: staging wise, this is Dukes C. Not the worst, but not the best either. It is entirely possible that the cancer cells that are still in my body will not cause any further problems but medicine at the moment can't tell you which will and which won't, hence the chemo as a belt and braces exercise. She, too, wants me to see a geneticist to look at the family risk, but that's for later. Right now the regime will be a three week cycle of a two hour drip of Oxaliplatin then two weeks' of Capecitabine tablets, with the third week off. Repeat seven times. Side effects wise, I shouldn't lose my hair but it might thin. They will give me lots of anti-emetics for the nausea. Bowel function will be affected but which way is impossible to say. I may lose my appetite. I may be very tired. I may get pins and needles in my hands and feet. I may feel woozy, particularly on drip day. But otherwise life carries on as normal - I can drink, work, drive (except when feeling woozy), have sex and eat what I want.
A couple of things did surprise me. Sex requires condoms as bodily fluids can carry traces of the chemo drugs and so I could pass them to DH. Also she didn't mention compromised immunity, I did. Apparently, I just have to be sensible. In fairness, she is very sensible, pointing out that I have two small children and therefore can't live in a clean bubble; but if I suddenly feel unwell or get a temperature I should call the hospital immediately. Food wise, the things that could cause a problem for anyone who's immuno-compromised should be avoided.
The final surprise related to fertility. I'd assumed that it wasn't an issue as we always intended to stop at two children, so we gigglingly answered, "No!" when asked if we were planning more. But what I hadn't known is that chemo can trigger premature menopause and the likelihood of this is reduced if my ovaries are shut down for the duration of the chemo. So early next week I need a particular jab to start this process. I'm not clear what the side effects of this might be but it rather sounds like I'll be joining the hot flush set for a bit.
We are only with her for 15 minutes or so, then the specialist nurse takes over. More blood is taken, and I'm booked in for the pre-admission appointment on Wednesday as well as the first chemo session on Thursday.
My primary sensation is one of relief as we wander the shops afterward, looking for outfits for a friend's wedding next Saturday. I'm tempted to ask if we can delay for a week so I can go to the wedding unchemicalled, but DH quickly squashes that one. It's my text hugging friend anyway, so she will definitely understand if I'm flakey on the day. I'm not missing it though, not for the world!
Once home I try and take in the Macmillan leaflets on the side effects, but I can't. Physically and emotionally I am done in. It seems I wasn't as on top of the emotional turmoil caused by the wait as I thought I was.
Wednesday 26 September 2012
The Waiting Game
Now I've caught up with myself, really. "Out of Sequence" and "One Step at a Time" take us to where I am now. There has been an awful lot of sitting around, sometimes accompanied by tea drinking and sometimes not, sometimes accompanied by cake and sometimes not. More people have been told. The house is full of the most beautiful flowers, from my closest friends, my oldest friends, family and my work. DH's work phone him often, and send a gift basket containing, amongst other things, emergency chocolate. Lots of people come to see me: one brother travels hundreds of miles to be with us for four hours, a glorious four hours where my parents, both brothers, my husband and my children are all together in our garden, racing around playing football and on the trampoline. And as the days go on, I'm less tired and able to do more. By the end of week two at home, I can do the school run, much to DD's delight. My in-laws leave after the end of week one, to be replaced by my parents, then in week three DH goes back to work, TN is back and parental support is down to visits to help with bath time and meals on wheels.
Everyone is waiting, waiting for the oncologist appointment which is this Thursday (27 September). When I spoke to her (very efficient, slightly scary) secretary, there was nothing earlier. And until then I can do nothing but sit and wait. There is nothing to tell anyone, no action to take, no steps forward.
Thankfully parental support also includes the increasingly vital exercise of Getting Me Out of the House. I am getting more and more narky at my invalid state, mostly because I have nothing to do but wait. Given my life usually moves at 100 mph and I would usually give my eye teeth for a sit down, with a cup of tea and a good book, you'd think I would be enjoying the time off but no, there's no pleasing me. The day I realise how serious this is is the day I'm pottering about being annoyed that I can't go to the wool shop for wool for my next project (I've taken up knitting to keep me occupied). I have officially gotten old and need to get out.
Mum offers me a day out. It is to the Early Early Christmas Fair at Tidworth House, in aid of ABF - the Soldiers' Charity. I'm not sure this is an improvement in my aged state, but I've jumped at the chance!
Everyone is waiting, waiting for the oncologist appointment which is this Thursday (27 September). When I spoke to her (very efficient, slightly scary) secretary, there was nothing earlier. And until then I can do nothing but sit and wait. There is nothing to tell anyone, no action to take, no steps forward.
Thankfully parental support also includes the increasingly vital exercise of Getting Me Out of the House. I am getting more and more narky at my invalid state, mostly because I have nothing to do but wait. Given my life usually moves at 100 mph and I would usually give my eye teeth for a sit down, with a cup of tea and a good book, you'd think I would be enjoying the time off but no, there's no pleasing me. The day I realise how serious this is is the day I'm pottering about being annoyed that I can't go to the wool shop for wool for my next project (I've taken up knitting to keep me occupied). I have officially gotten old and need to get out.
Mum offers me a day out. It is to the Early Early Christmas Fair at Tidworth House, in aid of ABF - the Soldiers' Charity. I'm not sure this is an improvement in my aged state, but I've jumped at the chance!
Back to the NHS
Up until I got home, I've been Outside the NHS. Now I'm back, my care reverts back too. As an aside, I have no issue with using the bits of both systems I need. Using the private scheme my employer gives me means one less person using NHS resources. Yes I'm paying to get seen quicker, but that makes the queue shorter for others who can't pay. But I also pay a large amount of tax every year and as far as I'm concerned that means I can use the NHS too. I'm entitled to stuff all else out of the State and I do try and cause the NHS as little trouble as I can.
The interface between NHS and private blows my mind though. I have no idea how it works and as my previous experience of asking the NHS to cope was of exercising my right to choose a birth hospital and even that, within the NHS, was a nightmare of multiple forms, transfers between teams and, most irritatingly, denial of responsibility for care (not my problem, you want [insert non-available team here] or, I don't know what you need to do now), I figure I had better work out how two parallel, supposedly symbiotic systems work together.
That's a bit of a rant, apologies. Whilst I do think the NHS is an overly bureaucratic system that is not always designed in the best interests of its patients or its staff, I do nonetheless think it is a wonderful thing that the UK has a healthcare system free at the point of use and we are very privileged to have it.
Anyway, Wednesday's task is a quick trip to the GP who referred me to say hello, I'm back and now what? She's been on holiday and is catching up with my case when she calls me in, and she's surprised by the turn of events. She's surprised because, after the diahorrea episode that triggered this all off, my bowel habits were returning to normal, leaving the only obvious symptom as blood in my stools. Once she's got over that bit, she deals with all our questions: who changes the dressing if it's needed (the practice nurse), who provides new dressings (the NHS - here, have a chit that exempts you from prescription charges for 5 years), will anyone come to see me at home?
DH asks the last question. Her answer is, "If you are physically unable get to the surgery, call an ambulance. You have just been through a massive insult to your body and you will need urgent medical attention."
I leave with a mental picture of the plumbing consultant shouting, "Fuck off!" at my insides.
The interface between NHS and private blows my mind though. I have no idea how it works and as my previous experience of asking the NHS to cope was of exercising my right to choose a birth hospital and even that, within the NHS, was a nightmare of multiple forms, transfers between teams and, most irritatingly, denial of responsibility for care (not my problem, you want [insert non-available team here] or, I don't know what you need to do now), I figure I had better work out how two parallel, supposedly symbiotic systems work together.
That's a bit of a rant, apologies. Whilst I do think the NHS is an overly bureaucratic system that is not always designed in the best interests of its patients or its staff, I do nonetheless think it is a wonderful thing that the UK has a healthcare system free at the point of use and we are very privileged to have it.
Anyway, Wednesday's task is a quick trip to the GP who referred me to say hello, I'm back and now what? She's been on holiday and is catching up with my case when she calls me in, and she's surprised by the turn of events. She's surprised because, after the diahorrea episode that triggered this all off, my bowel habits were returning to normal, leaving the only obvious symptom as blood in my stools. Once she's got over that bit, she deals with all our questions: who changes the dressing if it's needed (the practice nurse), who provides new dressings (the NHS - here, have a chit that exempts you from prescription charges for 5 years), will anyone come to see me at home?
DH asks the last question. Her answer is, "If you are physically unable get to the surgery, call an ambulance. You have just been through a massive insult to your body and you will need urgent medical attention."
I leave with a mental picture of the plumbing consultant shouting, "Fuck off!" at my insides.
Tuesday 25 September 2012
Bowel surgery vs pregnancy
1) For the former you get a spinal block without asking; for the latter people try everything to discourage it (1 point to bowel surgery - controversial, and I don't really wish I'd had epidurals during labour, but not being able to feel anything would have been marvellous at times).
2) After the former you can't drive for 6 weeks; same after the latter if you have a C-section (no score draw - this is a rubbish result either way).
3) After the former, you can't sleep on your side; same during the latter (score draw; using a pillow to prop up the stitches/bump works well).
4) For the former you get encouraged to stay in hospital; for the latter they kick you out ASAP (1 point to bowel surgery - I understand why they kick you out, but really everyone could do with a few days lying in).
5) During the latter, you get repeatedly kicked in various places around your abdomen and get vicious heartburn. After the former, the air they pump in feels like both of these (1 point for pregnancy here, having these inflicted by a baby is preferable to being inflated like a balloon).
6) After the former, your first poo is very scary. Same after the latter. No comment.
So 3:2 to bowel surgery, it seems. Surely some mistake?
2) After the former you can't drive for 6 weeks; same after the latter if you have a C-section (no score draw - this is a rubbish result either way).
3) After the former, you can't sleep on your side; same during the latter (score draw; using a pillow to prop up the stitches/bump works well).
4) For the former you get encouraged to stay in hospital; for the latter they kick you out ASAP (1 point to bowel surgery - I understand why they kick you out, but really everyone could do with a few days lying in).
5) During the latter, you get repeatedly kicked in various places around your abdomen and get vicious heartburn. After the former, the air they pump in feels like both of these (1 point for pregnancy here, having these inflicted by a baby is preferable to being inflated like a balloon).
6) After the former, your first poo is very scary. Same after the latter. No comment.
So 3:2 to bowel surgery, it seems. Surely some mistake?
Home
Having achieved the qualification standard for hospital release, I can go home. This does take until late afternoon - no issues with beds and turfing out patients here and Monday seems to be a busy day for admissions. The weekend was very quiet and only half a dozen of the rooms were occupied, mostly by very elderly patients which increased my feeling that I didn't belong here any more. Keeping DH calm whilst we wait for the discharge nurse is tricky as he just wants to go. But eventually we are released into the outside world and the longest walk I've taken for nearly a week.
Despite DH's best efforts, every braking or cornering manoeuvre pulls the seatbelt into my stomach and I jump about 3 feet in the air. Then he apologises. The route home takes in three large roundabouts and some winding back road. There is a great deal of jumping and apologising.
By 8 pm I am shattered. Everyone - my parents, my in-laws, my children - are at home and pleased to see me. It quickly becomes too much and I slink off to bed. Tuesday I am still wiped out and spend most of the day in bed and furious with myself because I haven't done anything and yet I'm exhausted. I might be home but there's clearly a long way to go.
Despite DH's best efforts, every braking or cornering manoeuvre pulls the seatbelt into my stomach and I jump about 3 feet in the air. Then he apologises. The route home takes in three large roundabouts and some winding back road. There is a great deal of jumping and apologising.
By 8 pm I am shattered. Everyone - my parents, my in-laws, my children - are at home and pleased to see me. It quickly becomes too much and I slink off to bed. Tuesday I am still wiped out and spend most of the day in bed and furious with myself because I haven't done anything and yet I'm exhausted. I might be home but there's clearly a long way to go.
Sunday 23 September 2012
Progress
To my amazement, by Sunday I'm getting ready to go home. Most machines were unplugged on Saturday, just in time for the children coming in to visit (not that they cared by the time I played my trump card and showed them I could get Cbeebies on the tv in my room - anything to stop a highly inquisitive two year old with a talent for pushing buttons (literally and figuratively) from playing with the remote control on the bed, and also to distract DD who is getting distressed by the cannula in my left hand). Getting Out of Bed, Going For A Walk and even Climbing Stairs were achieved without incident. I even take a shower for the first time, and it is the best shower ever.
The plumbing consultant came in on Saturday morning and his colleague comes on Sunday. He was in theatre for part of my operation and it strikes me as strange to meet someone who is better acquainted with my bowels than he is with me. Both have one achievement in mind: before I can go home, I have to have a poo.
Food is now going in, in small amounts. Air is growling around my belly and I am, ahem, passing wind, which is apparently a sign that the join is working properly and the bowel is moving in the right direction. Apparently when it's touched the bowel can stop moving completely which is, according to a nurse, not a good thing. But, apart from wind and some large lumps of blood that stink to high heaven, nothing else is forthcoming.
This is worse than having toddlers around. Now everyone feels entitled to ask about my bowel habits, particularly DH who is now texting for updates. I promise to tell him the moment anything happens, if he will just stop asking!
The plumbing consultant came in on Saturday morning and his colleague comes on Sunday. He was in theatre for part of my operation and it strikes me as strange to meet someone who is better acquainted with my bowels than he is with me. Both have one achievement in mind: before I can go home, I have to have a poo.
Food is now going in, in small amounts. Air is growling around my belly and I am, ahem, passing wind, which is apparently a sign that the join is working properly and the bowel is moving in the right direction. Apparently when it's touched the bowel can stop moving completely which is, according to a nurse, not a good thing. But, apart from wind and some large lumps of blood that stink to high heaven, nothing else is forthcoming.
This is worse than having toddlers around. Now everyone feels entitled to ask about my bowel habits, particularly DH who is now texting for updates. I promise to tell him the moment anything happens, if he will just stop asking!
Hospital
Most of Thursday and Friday are a blur. My parents visit on the Thursday; my poor Dad, fresh off a plane from Pakistan, makes a beeline for my bedside as soon as I am round. DH comes back Friday morning but I inadvertently give myself two shots of morphine and stop making any sense at all for a while. I can understand how people get addicted to this stuff - it makes you float away, although I don't get any of the nice dreams that others I know have had.
Friday's big events are Getting Out of Bed and Eating Food. A small army comes to execute the first: the physio and two nurses. It takes an age to unplug me from the various devices. We are talking about a distance of less than a metre from the bed to the chair, something that 48 hours ago did not present a significant challenge. Well now it might as well be Mount Everest, and I even have the oxygen supply. Sit up - ok. Stand up - yup. And sit down again quick before I fall down. The picture in my eyes is breaking up like a satellite signal in a thunderstorm and it takes 5 minutes before normal service is resumed. Back to bed then.
A nurse persuades me that the second is a good idea although the idea of putting anything in a digestive system that's just been redesigned is a bit scary. Leek and potato soup - that should be ok; there doesn't seem to be curry on the menu so no need to rise to any serious challenge. I can barely eat half of it before my stomach is full. No solid food in four days seems to mean my stomach has shrunk to the size of a walnut, but it's a start.
I Skype home. DS is not bothered, but I have to remove the oxygen tube before DD is comfortable speaking to me.
Sleeping is difficult and seems to be the result of morphine/exhaustion rather than in accordance with any pattern. This is not helped by the pain in my shoulders which is, I'm told, the reflection of trapped wind in the bowel cavity as the surgeon pumps air in to get a better look during the procedure. Nor can I lie on my side which is my usual sleeping position, as it feels alarmingly like the wound will split. And there's still the regular obs to be done; Saturday night sees a lovely nurse who seems to get that I need cleaning up without asking so when she comes to check on me she makes sure to clean me up too, which makes me feel more human. For some reason I don't want to read books and watch tv so I go for my iPod. Sometimes having a preference for rock and metal is not a good thing, but I do have a small stash of folk music and the soothing tones of The Unthanks seem to help me drift off.
Friday's big events are Getting Out of Bed and Eating Food. A small army comes to execute the first: the physio and two nurses. It takes an age to unplug me from the various devices. We are talking about a distance of less than a metre from the bed to the chair, something that 48 hours ago did not present a significant challenge. Well now it might as well be Mount Everest, and I even have the oxygen supply. Sit up - ok. Stand up - yup. And sit down again quick before I fall down. The picture in my eyes is breaking up like a satellite signal in a thunderstorm and it takes 5 minutes before normal service is resumed. Back to bed then.
A nurse persuades me that the second is a good idea although the idea of putting anything in a digestive system that's just been redesigned is a bit scary. Leek and potato soup - that should be ok; there doesn't seem to be curry on the menu so no need to rise to any serious challenge. I can barely eat half of it before my stomach is full. No solid food in four days seems to mean my stomach has shrunk to the size of a walnut, but it's a start.
I Skype home. DS is not bothered, but I have to remove the oxygen tube before DD is comfortable speaking to me.
Sleeping is difficult and seems to be the result of morphine/exhaustion rather than in accordance with any pattern. This is not helped by the pain in my shoulders which is, I'm told, the reflection of trapped wind in the bowel cavity as the surgeon pumps air in to get a better look during the procedure. Nor can I lie on my side which is my usual sleeping position, as it feels alarmingly like the wound will split. And there's still the regular obs to be done; Saturday night sees a lovely nurse who seems to get that I need cleaning up without asking so when she comes to check on me she makes sure to clean me up too, which makes me feel more human. For some reason I don't want to read books and watch tv so I go for my iPod. Sometimes having a preference for rock and metal is not a good thing, but I do have a small stash of folk music and the soothing tones of The Unthanks seem to help me drift off.
Friday 21 September 2012
In recovery
Stop shouting! Can't you see I'm trying to sleep here? The nurse running the recovery room is working at full volume. It's bad enough that the automatic blood pressure cuff keeps doing its thing, but I really wish she'd stop shouting. Enough of my brain works to register that the recovery room is filling up very quickly, so she's probably a bit stressed, but also enough of my brain works to register that all discussions are being carried out as if the patients are wholly unconscious which, of course, in a recovery room we're not.
I'm aware of being back in my room, of DH being there, of the plumbing consultant being there. "How much did you take out?", I ask. "A foot", comes the reply. "I thought this was a bowel operation", I retort, before losing consciousness again.
A nurse tells me what's going on. There's a catheter, which doesn't really bother me at all, and a saline drip into my left hand to get my fluid levels back up. There's a morphine PCA machine into the same cannula - opiates on tap, I bet there's a few people who would wish for those; and Paracetamol infusion too. My calves are sporting the latest in compression boots, deflating and inflating alternately to prevent DVT, and there's a tube feeding oxygen into both nostrils as well as the automatic blood pressure cuff on my right arm. In short, I am tethered to all four corners of the bed. I am also desperately thirsty but have to ask someone for even a sip of water. This is ok when DH is there, but when he goes I have to ring for a nurse and surely they have better things to do than give me water?
It takes until 6 pm until I'm fully conscious. The operation has taken 4 hours and is a great success: a good anastemosis (join) between the two pieces of bowel and, mercifully, no stoma.
But the after effects are horrible. The laxative is still working, so there is still brown water moving out of my bowel but now it's mixed with post op blood and I can neither stop it nor do anything about it. There's nothing to soak it up but my gown and my bed; I try and explain but no-one seems to understand that I'm not bothered that it's happening but I am bothered that I'm lying in it. I'm also aware that my period is due any minute and I can't feel anything properly so I don't know for sure what's going on. By 9 pm I am sweating and hot and feel horribly sick, but there's no vomit bowl in reach and I can't move. I ring for a nurse - the only action I can take - but no- one comes quickly enough to spare me vomiting all over myself. By the time someone comes, which feels like ages but is probably only a couple of minutes, I have given in to the embarrassment and disgust of lying in a tethered heap of my own shit and blood and vomit and cry and cry and cry. Properly feeling sorry for myself crying. Finally, gentle nurses come and clean me up, change my gown and my bed as dignified a manner as possible, give me anti-emetics and calm me down.
The night passes in a whirl of activity: more vomit, more cleaning up, more observations. It's a wonder anyone gets any sleep at all in hospital, it's not the most restful place. By the early hours I'm still vomiting and the possibility of a naso-gastric tube is being discussed (apparently this helps, not sure how). Thankfully 6 am is the final hurrah, and I can get some sleep at last.
I'm aware of being back in my room, of DH being there, of the plumbing consultant being there. "How much did you take out?", I ask. "A foot", comes the reply. "I thought this was a bowel operation", I retort, before losing consciousness again.
A nurse tells me what's going on. There's a catheter, which doesn't really bother me at all, and a saline drip into my left hand to get my fluid levels back up. There's a morphine PCA machine into the same cannula - opiates on tap, I bet there's a few people who would wish for those; and Paracetamol infusion too. My calves are sporting the latest in compression boots, deflating and inflating alternately to prevent DVT, and there's a tube feeding oxygen into both nostrils as well as the automatic blood pressure cuff on my right arm. In short, I am tethered to all four corners of the bed. I am also desperately thirsty but have to ask someone for even a sip of water. This is ok when DH is there, but when he goes I have to ring for a nurse and surely they have better things to do than give me water?
It takes until 6 pm until I'm fully conscious. The operation has taken 4 hours and is a great success: a good anastemosis (join) between the two pieces of bowel and, mercifully, no stoma.
But the after effects are horrible. The laxative is still working, so there is still brown water moving out of my bowel but now it's mixed with post op blood and I can neither stop it nor do anything about it. There's nothing to soak it up but my gown and my bed; I try and explain but no-one seems to understand that I'm not bothered that it's happening but I am bothered that I'm lying in it. I'm also aware that my period is due any minute and I can't feel anything properly so I don't know for sure what's going on. By 9 pm I am sweating and hot and feel horribly sick, but there's no vomit bowl in reach and I can't move. I ring for a nurse - the only action I can take - but no- one comes quickly enough to spare me vomiting all over myself. By the time someone comes, which feels like ages but is probably only a couple of minutes, I have given in to the embarrassment and disgust of lying in a tethered heap of my own shit and blood and vomit and cry and cry and cry. Properly feeling sorry for myself crying. Finally, gentle nurses come and clean me up, change my gown and my bed as dignified a manner as possible, give me anti-emetics and calm me down.
The night passes in a whirl of activity: more vomit, more cleaning up, more observations. It's a wonder anyone gets any sleep at all in hospital, it's not the most restful place. By the early hours I'm still vomiting and the possibility of a naso-gastric tube is being discussed (apparently this helps, not sure how). Thankfully 6 am is the final hurrah, and I can get some sleep at last.
Call the plumber!
Thursday 6 September. Surgery day has arrived and I don't mind admitting I feel wretched. Sheer terror of the surgery is compounded by a) not having eaten anything since Monday night, b) not having drunk anything since midnight last night, c) having to take the laxative again yesterday so I'm leaking brown water again, and d) not having slept. I'm curled in on myself, physically and mentally, because I am desperate not to cry.
TN is in early so DH and I can leave on time at 6.30 am. Just before we go we wake the children so I can say goodbye. We did think about not waking them (at the moment, mostly, they sleep until about 7) but I can't bear not to.
The hospital is quiet, the car park empty, and we are led up to the ward almost instantly. My room is right outside the nurses' station as it is a high dependency bed, but is otherwise unexceptional. The nurse admits me and remembers me from the colonoscopy. The anaesthetist appears, looking remarkably like he has only just got out of bed, with his jacket collar up - I'm aching to turn it down for him but remind myself that he is about to be in charge not only of my consciousness but also of my pain relief, so I behave. His bedside manner needs work though as he rattles off what will be done at top speed, as if he's learnt it for a poetry test at school. There's nothing poetic about what he's going to do: spinal block plus GA. I pushed out two babies without an epidural and NOW they want me to have one? The consultant is next, and it's not until he asks me how I'm feeling that I admit how scared I am. But his visit is a brief courtesy one and I shan't see him again until it's over.
8 am and DH walks down the corridor to theatre with me. This time (unlike the colonoscopy) I have brought a dressing gown so my backside isn't showing to the world and I'm not scampering to theatre, crablike, trying to hold the back of my gown closed. The theatre team are lovely - an Eastern European nurse who gives me her tips on childrearing, though she has no children herself, and an agency nurse who clearly has the most amazing set of dreadlocks underneath his cap. The anaesthetist is much better here in his own domain, sympathetic to my fears about getting the cannula in after Wednesday's experience. He does it easily and painlessly and I want to hug him. Anti-biotics go in, then I'm sat upright and curled up over a pillow for the spinal block. First a local, to stop me jumping away when the main event occurs, then the block itself, and within minutes I can't lift my legs. The worst bit actually is the cold spray used to clean the site, which really does make me jump and he uses it again to prove that all feeling is gone below the block site.
All the while we're chatting, the four of us, and the inevitable question comes up, "What do you do?". Now I try not to admit this at the moment, as I work for a bank and they're not exactly top of the popularity stakes just now. But I cough up the information anyway, to groans from the theatre team. So when they ask who I work for I refuse to say - I want to wake up from this operation!
Then I know nothing more.
Life insurance
Wednesday night, DH and I go through all the paperwork. Where's the will, where are the life insurance policies etc. DH knows none of this as his idea of filing is a large pile of paper whereas mine involves files, labels and order (control freak, moi?). I certainly don't waste the opportunity to point out that he is at a disadvantage here, although he has managed to regain access to the joint account all by himself, which dismays me a bit. Anyway, we find everything and, as a kind of National Lottery bonus ball, find a critical illness policy we took out ten years ago tucked away as well. It doesn't cover cancer in situ, which is what we think this is, but it's an unexpected find, like a fiver in your clean jeans.
That finished, DH stands up, stretches and announces, "Now we've sorted out the life insurance policies, I'm off to clean my gun."
Well, it made me laugh.
That finished, DH stands up, stretches and announces, "Now we've sorted out the life insurance policies, I'm off to clean my gun."
Well, it made me laugh.
Wednesday 19 September 2012
The big metal doughnut
And it's Wednesday, so it's CT scan day. This is provided by the NHS, so DH and I are in the sprawling outpatients' department of the large NHS hospital on the same site as my private one. My pre-op fast, of clear liquids only (no jelly this time), started on Monday night and I've been instructed not to drink anything before the scan. Consequently, despite the warm September sunshine, I am freezing cold and wearing a huge jumper.
We have an early appointment so the Radiology department is largely deserted when we arrive. The radiologist gives me a large measuring jug with a litre of water in it and tells me to drink all of that over the next 15 minutes; I'm so thirsty that I have to stop myself gulping it down.
The scanner room is icy cold - to keep the equipment at the right temperature - and I have to take off my jumper because it has metal eyes for the drawstrings. The scanner itself is a doughnut, not a tube, so no issues for the claustrophobic, and the radiologist explains that she will put something into my veins that gives a better picture. This apparently has side effects that can include feeling very warm (I'd be grateful for that at this point), a metallic taste in my mouth and making me feel like I've wet myself! When she asks about my allergies I give the medicine ones and am slightly surprised to learn that she isn't interested in these but in the common or garden atopic ones of hay fever, horses, dogs - apparently if you have these allergies it is more likely that you will react to the stuff.
So I lie down on the bed and she goes to put the cannula in. Now I am very proud of my veins. At blood donations I am complimented on them and how easy they are to find and cannulate. Always an odd thing to say, I thought. But right now, with no food in me, no water and in the freezing cold room, they give up and the cannulation hurts. Really hurts. Finally she finds the vein, rigs me up and leaves me lying on the bed with my arms above my head.
The machine starts with a mechanised voice asking me to hold my breath. The doughnut moves over me and I'm instructed to breathe out again. A couple more sweeps and the radiologist then announces that she's putting the stuff in my veins. Thank goodness she warned me because all of the effects she warned me about actually happened - very very weird! A few more sweeps and it's all done. The actual scan has taken about 5 minutes but the prep about 40 minutes. I'm so grateful to be able to put a jumper on. The radiologist assures me the report will be with my consultant this afternoon, in time for the op tomorrow.
DH and I go to the hospital cafe for something normal to do, as at least I can have a hot, sweet black coffee. He is concerned that I am being confronted with breakfast service of sausages, bacon, eggs etc, but I insist (and it doesn't seem to bother me). Whilst there we bump into one of our old neighbours who has arrived for some physio and we manage to talk for 7 minutes or so before I tell him why we are there. He is clearly upset and we part with the longest of hugs, and I feel guilty for not being upset. Because it's still not happening to me.
We have an early appointment so the Radiology department is largely deserted when we arrive. The radiologist gives me a large measuring jug with a litre of water in it and tells me to drink all of that over the next 15 minutes; I'm so thirsty that I have to stop myself gulping it down.
The scanner room is icy cold - to keep the equipment at the right temperature - and I have to take off my jumper because it has metal eyes for the drawstrings. The scanner itself is a doughnut, not a tube, so no issues for the claustrophobic, and the radiologist explains that she will put something into my veins that gives a better picture. This apparently has side effects that can include feeling very warm (I'd be grateful for that at this point), a metallic taste in my mouth and making me feel like I've wet myself! When she asks about my allergies I give the medicine ones and am slightly surprised to learn that she isn't interested in these but in the common or garden atopic ones of hay fever, horses, dogs - apparently if you have these allergies it is more likely that you will react to the stuff.
So I lie down on the bed and she goes to put the cannula in. Now I am very proud of my veins. At blood donations I am complimented on them and how easy they are to find and cannulate. Always an odd thing to say, I thought. But right now, with no food in me, no water and in the freezing cold room, they give up and the cannulation hurts. Really hurts. Finally she finds the vein, rigs me up and leaves me lying on the bed with my arms above my head.
The machine starts with a mechanised voice asking me to hold my breath. The doughnut moves over me and I'm instructed to breathe out again. A couple more sweeps and the radiologist then announces that she's putting the stuff in my veins. Thank goodness she warned me because all of the effects she warned me about actually happened - very very weird! A few more sweeps and it's all done. The actual scan has taken about 5 minutes but the prep about 40 minutes. I'm so grateful to be able to put a jumper on. The radiologist assures me the report will be with my consultant this afternoon, in time for the op tomorrow.
DH and I go to the hospital cafe for something normal to do, as at least I can have a hot, sweet black coffee. He is concerned that I am being confronted with breakfast service of sausages, bacon, eggs etc, but I insist (and it doesn't seem to bother me). Whilst there we bump into one of our old neighbours who has arrived for some physio and we manage to talk for 7 minutes or so before I tell him why we are there. He is clearly upset and we part with the longest of hugs, and I feel guilty for not being upset. Because it's still not happening to me.
Monday 17 September 2012
Denial
Looking back over the past few posts, I sound completely emotionally uninvolved. And I was (still am, a bit). This just wasn't happening. I didn't have cancer and this was all some huge fuss about nothing. I felt fit and well.
This is apparently completely normal. Perhaps it's a coping mechanism. From diagnosis on, I focused on the next step, the next thing to do.
This is apparently completely normal. Perhaps it's a coping mechanism. From diagnosis on, I focused on the next step, the next thing to do.
Two sides of the story
I have a friend whose husband went through this last year; DD has a playdate with her eldest on my only appointment free day before the op, so I invite myself along to get the inside track.
Very rudely, I am late as I am trying to finish a piece of work that I don't have to finish, but I want to finish, as some kind of normality and also to avoid dumping it on colleagues and/or someone not doing it the way I want it done. TN is looking after the children in the garden whilst my friend - let's call her Q - and I talk. It's the first time I've really spoken to her about it and it all comes pouring out: how little support she got, how horrendous the stoma and the bags were, how they nearly got landed with an enormous bill for her DH's chemo because the insurance company wouldn't pay out. And she picked all of this up, dealt with it all, ran around after her DH and two children, to the extent that she made herself seriously ill. There is one comedy point: apparently if you drink Bovril, it makes what comes out of the stoma turn blood red - there was an urgent call to the hospital that night before they worked out what was going on. Bless her, she is clearly concerned that she is scaring me, but I still haven't connected this with me and am more distressed at how horrendous it has been for her. She does give me the confidence that we're doing the right thing in being open with the children, as they were with theirs and our DDs are very similar in age and personality, so that's reassuring.
We finish the conversation sat on the sofas in her sitting room, watching the girls and a friend perform Cinderella. We keep getting told off for talking during the performance. Nothing like children for keeping you grounded!
Very rudely, I am late as I am trying to finish a piece of work that I don't have to finish, but I want to finish, as some kind of normality and also to avoid dumping it on colleagues and/or someone not doing it the way I want it done. TN is looking after the children in the garden whilst my friend - let's call her Q - and I talk. It's the first time I've really spoken to her about it and it all comes pouring out: how little support she got, how horrendous the stoma and the bags were, how they nearly got landed with an enormous bill for her DH's chemo because the insurance company wouldn't pay out. And she picked all of this up, dealt with it all, ran around after her DH and two children, to the extent that she made herself seriously ill. There is one comedy point: apparently if you drink Bovril, it makes what comes out of the stoma turn blood red - there was an urgent call to the hospital that night before they worked out what was going on. Bless her, she is clearly concerned that she is scaring me, but I still haven't connected this with me and am more distressed at how horrendous it has been for her. She does give me the confidence that we're doing the right thing in being open with the children, as they were with theirs and our DDs are very similar in age and personality, so that's reassuring.
We finish the conversation sat on the sofas in her sitting room, watching the girls and a friend perform Cinderella. We keep getting told off for talking during the performance. Nothing like children for keeping you grounded!
Pre-op mayhem
First appointment on Monday is the pre-admission nurse, for bloods, urine, blood pressure, body mass index and collecting all the thousands of pieces of data the hospital needs. They have all this from the colonoscopy, but they need it again and more for in patient procedures. The nurse is marvellous and answers all our questions about what will happen at the hospital pre and post-op. it's a surprise to me to learn that post-op I will have a High Depency bed because my nursing needs will be high. That hadn't occurred to me. There will be saline drips, IV pain relief, a catheter and compression boots to prevent DVT. All I'm focused on is what we tell DD and where the balance is going to be struck by letting her visit and yet not have to deal with all the kit. Despite this, both DH and I leave feeling that we are better prepared and that we have been given lots of time.
Stoma nurse next, when we can track her down in the maze of the adjacent NHS hospital. It does surprise me that anyone chooses to specialise in this area, but I'm grateful that they do although in this case I'm hoping to avoid their services. An ileostomy might be needed to allow the anastomosis (bowel join) to heal, so she's prepping me for the worst case scenario. She is relentlessly positive that it is all very straightforward, simply a matter of popping bags on and off this tiny protrusion of bowel, or easy emptying of bag contents. Intellectually I get that this is nonsense, of course it's not going to be simple, but I'm not really listening because I don't believe it's going to happen. Nor does she, given what the consultant has said to her, so her heart's not in it either and she spares me the practice pack. She does give me a desperately over-optimistic magazine sized publication showing lots of happy smiling people with ileostomies. All the people pictured are grey haired, which doesn't help me connect with the idea at all. The most useful thing from the appointment is that I see her copies of the consultant's letters to my GP so learn exactly where the polyps are and what he's done (small one in the transverse colon, removed; large one in the sigmoid bowel, hot biopsied, containing moderately differentiated adenocarcinoma cells). Interestingly he also comments that my thyroid count is low - maybe my eternal exhaustion isn't just down to two children and a full time job. GP hasn't picked this up yet, so I add it to the list. Probably not no. 1 priority right now...
Stoma nurse next, when we can track her down in the maze of the adjacent NHS hospital. It does surprise me that anyone chooses to specialise in this area, but I'm grateful that they do although in this case I'm hoping to avoid their services. An ileostomy might be needed to allow the anastomosis (bowel join) to heal, so she's prepping me for the worst case scenario. She is relentlessly positive that it is all very straightforward, simply a matter of popping bags on and off this tiny protrusion of bowel, or easy emptying of bag contents. Intellectually I get that this is nonsense, of course it's not going to be simple, but I'm not really listening because I don't believe it's going to happen. Nor does she, given what the consultant has said to her, so her heart's not in it either and she spares me the practice pack. She does give me a desperately over-optimistic magazine sized publication showing lots of happy smiling people with ileostomies. All the people pictured are grey haired, which doesn't help me connect with the idea at all. The most useful thing from the appointment is that I see her copies of the consultant's letters to my GP so learn exactly where the polyps are and what he's done (small one in the transverse colon, removed; large one in the sigmoid bowel, hot biopsied, containing moderately differentiated adenocarcinoma cells). Interestingly he also comments that my thyroid count is low - maybe my eternal exhaustion isn't just down to two children and a full time job. GP hasn't picked this up yet, so I add it to the list. Probably not no. 1 priority right now...
Sunday 16 September 2012
Things you should never have to deal with with your children: 1) bury them; 2) tell them you have cancer
Saturday is also the day I have to tell my children. DS won't really get it, although he will understand that Mummy's not around for a bit, and I don't see any point in not explaining why. I don't know how much DD will understand - she's bright, but hasn't been close to anyone whilst they've been in hospital before.
We all sit in bed having pre-breakfast drinks, as is normal if we have a weekend day that allows a late start, and use the family cuddle time to explain what's happening. No tears, no drama, just very simply that Mummy has something growing in the tube that makes your poo that shouldn't be there, that she needs to go to the hospital to have it cut out and that the doctor will make it better, but that Mummy will be in hospital for a few days. Daddy and TN (The Nanny) will be around just as usual, and when TN goes on holiday, grandparents will be around.
DS asks, "Is Mummy going to hospital?", and goes back to playing with his cars when he gets an affirmative answer. DD goes quiet - not a good sign (she thinks that if she stops responding to people when there's trouble, it will go away). DH pushes the point, asking if she understands, and gets stonewalled. Eventually I intervene - she is clearly affected by the news and I don't see any point in pushing it further. We give her lots of reassurance about who will be around and making Mummy better, but it's Octonauts (UK children's TV programme) on the iPad that finally changes her mood.
She doesn't mention it again until she and I are walking back from the supermarket the following day. Outside the supermarket are some people collecting for the local hospice and DD asks what a hospice is. I explain that it's where people who need lots of medical help go so that they and their families can have a rest. I don't mention the dying bit, despite normally having a policy of being open and honest with her (thankfully we haven't had any, "Where do babies come from?" questions. Yet.), because I don't want to go down that thought trail and anyway I don't have cancer really. And I'm certainly not going to die from it. She follows up with a host of questions about what's happening to me: will it hurt? (yes, but the doctors will give me medicine to help), what's it called? (cancer), can I come and see you in hospital? (yes). I tell her that it's nothing she's done and she can't catch it because it's not germs that make this happen - that these are things that worry children is something I have picked up from the Macmillan website during my wee small hours web crawling. She puts her small hand in mine and we walk home together, talking about the new school term that's about to start.
We all sit in bed having pre-breakfast drinks, as is normal if we have a weekend day that allows a late start, and use the family cuddle time to explain what's happening. No tears, no drama, just very simply that Mummy has something growing in the tube that makes your poo that shouldn't be there, that she needs to go to the hospital to have it cut out and that the doctor will make it better, but that Mummy will be in hospital for a few days. Daddy and TN (The Nanny) will be around just as usual, and when TN goes on holiday, grandparents will be around.
DS asks, "Is Mummy going to hospital?", and goes back to playing with his cars when he gets an affirmative answer. DD goes quiet - not a good sign (she thinks that if she stops responding to people when there's trouble, it will go away). DH pushes the point, asking if she understands, and gets stonewalled. Eventually I intervene - she is clearly affected by the news and I don't see any point in pushing it further. We give her lots of reassurance about who will be around and making Mummy better, but it's Octonauts (UK children's TV programme) on the iPad that finally changes her mood.
She doesn't mention it again until she and I are walking back from the supermarket the following day. Outside the supermarket are some people collecting for the local hospice and DD asks what a hospice is. I explain that it's where people who need lots of medical help go so that they and their families can have a rest. I don't mention the dying bit, despite normally having a policy of being open and honest with her (thankfully we haven't had any, "Where do babies come from?" questions. Yet.), because I don't want to go down that thought trail and anyway I don't have cancer really. And I'm certainly not going to die from it. She follows up with a host of questions about what's happening to me: will it hurt? (yes, but the doctors will give me medicine to help), what's it called? (cancer), can I come and see you in hospital? (yes). I tell her that it's nothing she's done and she can't catch it because it's not germs that make this happen - that these are things that worry children is something I have picked up from the Macmillan website during my wee small hours web crawling. She puts her small hand in mine and we walk home together, talking about the new school term that's about to start.
Saturday 15 September 2012
The whirlwind begins
To put this in the correct place in the narrative, we are at Friday 31 August and this comes directly after "Telling People".
Friday is a work day and I attempt to conduct it normally. Normal apart from the conversations about me having cancer and needing at least 6 weeks off work, that is. I admit the actual condition to some people and not to others, for no reason other than I find it hard to deal with the reaction I get: pity, tears, shock. And as I'm in denial anyway, it feels like a colossal fuss about nothing. It's just a few cells, surely this is OTT? The veneer cracks only when I speak to my consultant's secretary to book the procedure and she indicates that next Thursday might not be possible. I'd pinned my hopes on that and the possibility of a change in plans is more than I can cope with today. But she (God bless her, from the position of being on a day off and out and about in a nearby cathedral city) shifts things around so next Thursday is once again possible AND she has all the extra pre-op appointments organised. There need to be pre-op assessments, a chat with the stoma nurse in case I need an ileostomy bag and a CT scan to look for secondary tumours. The calls to fix the first two come in whilst I'm having my legs and bikini line waxed - seems like ridiculous vanity but who knows when the chance will come again?
My boss's boss is hugely sympathetic and says all the right things about taking time and not worrying about the job, but it doesn't assuage my guilt that their expensive and relatively recent hire is deserting them at a rather important time. I know no-one else thinks like that, but I do. So I stay late and put together a hand over note detailing everything I'm working on, who could take over and what needs doing. I cycle to and from my mainline train station, just as usual. This may be going to be a reason for things, but it is not going to be an excuse and besides, I don't know when I'm going to get on my bike again.
For the same reason I go running on Saturday, before my Mum comes round for lunch. We have asked her over, conscious that she would never insist on coming round but probably needs a hug as much as I do.
Friday is a work day and I attempt to conduct it normally. Normal apart from the conversations about me having cancer and needing at least 6 weeks off work, that is. I admit the actual condition to some people and not to others, for no reason other than I find it hard to deal with the reaction I get: pity, tears, shock. And as I'm in denial anyway, it feels like a colossal fuss about nothing. It's just a few cells, surely this is OTT? The veneer cracks only when I speak to my consultant's secretary to book the procedure and she indicates that next Thursday might not be possible. I'd pinned my hopes on that and the possibility of a change in plans is more than I can cope with today. But she (God bless her, from the position of being on a day off and out and about in a nearby cathedral city) shifts things around so next Thursday is once again possible AND she has all the extra pre-op appointments organised. There need to be pre-op assessments, a chat with the stoma nurse in case I need an ileostomy bag and a CT scan to look for secondary tumours. The calls to fix the first two come in whilst I'm having my legs and bikini line waxed - seems like ridiculous vanity but who knows when the chance will come again?
My boss's boss is hugely sympathetic and says all the right things about taking time and not worrying about the job, but it doesn't assuage my guilt that their expensive and relatively recent hire is deserting them at a rather important time. I know no-one else thinks like that, but I do. So I stay late and put together a hand over note detailing everything I'm working on, who could take over and what needs doing. I cycle to and from my mainline train station, just as usual. This may be going to be a reason for things, but it is not going to be an excuse and besides, I don't know when I'm going to get on my bike again.
For the same reason I go running on Saturday, before my Mum comes round for lunch. We have asked her over, conscious that she would never insist on coming round but probably needs a hug as much as I do.
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