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.

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...

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.

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.

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.

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.

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...

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.

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.

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.

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.