11 July 2015 – Ticking Over (Cancer and Me 35)

It’s been two-and-a-half weeks since the treatment plan was agreed. It feels like months. I’ve been back at work full time, but the new project manager has not yet started so it’s been hectic getting back into things. Our holiday in Wales is coming up next Friday, only 6 days to go.

And I’m tired. Very tired sometimes… but sometimes not – I exerted myself a lot today, rising at 6am, writing, and then spent most of the day in physical labour, cutting back a couple of bushes, taking old bits of decking to the dump, tidying the garage, and so on. The issue seems to be feeling tired, rather than being tired, so I have to just get on with things. That’s easier if it’s physical work I have to do. Working at home, reading and reviewing project documents is more difficult, because I keep nodding off!

The doctor prescribed me some prednisolone and allopurinol last time I saw him. He said to start taking it if I felt I needed to, because it would reduce the swelling of the lymph nodes and reduce the discomfort. So I started taking those about 10 days ago, because I’d been getting by with taking ibuprofen and started thinking that the doctor had given me this prescription to help so I should start on this stuff.

I’d forgotten the side-effects of prednisolone, though! The dosage I’m on is much lower than when I used to have it as part of chemotherapy, so the side-effects are not as bad.  Back then (5 years ago and 3 years ago) I used to have 100mg per day for 5 consecutive days, then 16 days off before the next lot. Sleeplessness was one of the main side-effects I remember, along with feeling very emotional. For current purposes I started on 50mg per day for 7 days, then reducing to 25mg per day. I thought that was just going to be for 3 weeks in total, but I’ve since been told my the doctor to pick up some more and to keep taking them until I start treatment on 5^th August.

The side-effects are less, but I still find myself getting a little bit emotional and there are times that I can’t stop my hands from shaking. The shaky hands are just annoying and it makes me feel tense and frustrated that I can’t move properly. But when I say ‘emotional’ I mean that I sometimes feel like just bursting into tears for no reason, or on the other hand I feel like getting angry with people when I would normally be reasonably patient. Heidi has noticed a snappiness at times, which thankfully she puts down to the steroids.

I also had my bone marrow biopsy a few days ago. I think this must be the fourth one I’ve had. In 2010 my bone marrow was clear. In 2012 it wasn’t, so they did another one at the end of treatment to make sure it had cleared. So at the start of 2013 they did another one. And then now. Painful as ever, but it didn’t seem to take as long – done in about 20 minutes. I am so glad I decided to work at home after it had been done, as my back was aching and sore. It took a good couple of days to stop aching.

But overall it is weird – weirdly normal. We’re looking forward to our holiday, and I’m acting as if all this isn’t going to affect my ability to work. But all the time I have a nagging feeling that I’m supposed to be doing something to prepare for the fact that I won’t be able to work later this year. I don’t want to tell the kids that we’ll have to cancel pocket money, cancel drama lessons, piano lessons, goalkeeper coaching, horse riding, that we’ll have to cut down on meals out, takeaways and sweets/treats, that we may have to sell one of our cars. I don’t want to have to go back to CABA again to ask for help. And my biggest dread is going to ask for state benefits (because I know how little I’ll get). I would really love it if I suddenly came up with an idea that would keep earning me money that would keep us going with no cutbacks through the next year. At the moment I’m in denial. Until something happens (like chemo) it doesn’t feel real, so I don’t do anything about it.

Finally, for now, I came across a book, The Living End of Cancer, by Carla Rossi. It’s the ‘faith-based’ story of her experience with follicular lymphoma, having it for the first time in 2010. Aside from her helpful Biblical encouragements, several things struck me as I compared our experiences:

1. Things are different in (at least parts of) the USA, but not completely different:
   1. All Carla’s scans were PET scans. In the UK a PET scan is a bigger deal. I had one of those, but it felt special. Normally we make do with old-fashioned CT scans. My way of thinking about it is that a CT scan is like a black and white TV, whereas a PET scan is like HD 3D colour.
   2. Carla had a ‘port’ in her chest (a bit like a hickman line I guess) to receive R-CHOP chemotherapy. During her 5^th cycle of treatment they had to stop using that and use a PICC line instead. I had a cannula inserted for each cycle.
   3. Carla was told that doxorubicin couldn’t be delivered through a normal IV, so she had to take a pump home with her to have that infused over 48 hours. I had doxorubicin injected into my normal IV line, and there is no way I could see the NHS trusting patients with a pump full of a chemo drug at home!
2. Carla was hit a lot harder by her R-CHOP chemo than I was. The way she describes it seems a lot more unpleasant than I remember it being for me.
3. For Carla even battling with follicular lymphoma was a big battle. For me, now in my third battle I seem to have become a little hardened to it. In my mind now, it’s just follicular lymphoma, which is just an annoying major inconvenience rather than a life-threatening disease. It just happens to be labelled ‘cancer’. It’s not high-grade, life-threatening, non-Hodgkin’s lymphoma, like I had the first time (even though the treatment was the same!).

So I must be thankful, and not take for granted that things will always be as easy of straightforward as I’ve had things so far. I am also thankful, again, for the NHS, that I have expensive drugs provided for my treatment without having to fill forms, raise money, liquidate savings, appeal for fund raising.