Sunday, 30 December 2012


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?

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.

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.

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.

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!

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!).