25 March 2015 – The End of Another Chapter (Cancer and Me 28)
Fast forward almost two years…
Today is both momentous and mundane. I’ve been spending a day in hospital every two months for the last two years, having Rituximab maintenance treatment. And today it’s the last one. Number 12. As I write I am sat in the chair waiting to be cannulised so that treatment can commence. As usual things are slow. I arrived for an appointment at 9:45am. I actually saw the doctor at 10:30am, and at 11am I am still waiting (patiently, as patients do) for some attention.
It’s momentous because it marks the end of another chapter – The end of two years of maintenance treatment. And therefore it marks the start of another chapter – Waiting for the next relapse.
It’s mundane because I’m in the Basing Unit at North Hampshire Hospital, just a few hundred yards from my house, for at least the twelfth time in two years. In the last five years I haven’t gone more than 3 months without having to come here. It’s a familiar place, with familiar people, and a familiar routine: See the doctor, book the next appointment, find out which chair I’m allocated to, sit down, wait, get cannulised, flush the drip, take paracetamol and anti-histamine pre-med, then get hooked up to Rituximab on the drip and sit there for 2-3 hours while it goes through, final flush, remove cannula, go home.
Some people are scared of blood tests. I can understand that if the trainee doctors are in practice mode! That can be painful. But the phlebotomists can take blood from you painlessly in their sleep! It’s really no big deal. I must have had more than 100 of those little pinpricks in the last five-and-a-bit years. Personally I used to hate being cannulised (that’s having a cannula inserted; and a cannula is the valve/tube that is inserted into a vein in order to deliver medication via a drip – by infusion). That needle is more than a little “sharp scratch”. Sorry, but it is! And if they don’t get the vein cleanly the first time, they have to inflict you again… and again, and again… until the tube allows fluid to flow freely. One time it took two nurses a total of eight attempts to get a cannula correctly inserted. I came home with several plasters on my hands! It used to play on my mind in the days before treatment. But I’ve noticed recently that even that fear has subsided.
The last few treatments have really been just a day booked off work and turning up at hospital. I let them get on with it, and don’t worry about it beforehand.
Well, that’s not quite true. There’s still that latent anxiety. I’m not sure why I get a little nervous of what the doctor’s going to tell me at the appointment every two months. The appointment is for me to update the doctor on how I feel, so he can spot anything to be concerned about. But if I feel fine, he’s going to tell me I’m fine! Blood test results are never usually abnormal without any feeling of abnormality.
But mundane or otherwise, today is at least a little bit momentous, or maybe just a milestone to note on the way past. The psychological effect of passing this milestone remains to be seen, but I’m already aware that my thoughts are turning to the uncertainties of the future.
Not being on maintenance treatment means I’m just waiting for the next relapse. Just waiting. Waiting and watching for symptoms. But when does a little niggle indicate a symptom? How do I tell the difference between the niggles of being in one’s mid-forties and genuine symptoms of lymphoma, especially since I have never really experienced the normal symptoms of lymphoma?
I have in my mind that if my first relapse was after two years, and Rituximab maintenance treatment extends remission on average by 50%, then that means I should have about another year until my next relapse. But I know deep down that I’m being far too precise. We’re talking about averages, and in relation to the human body. Rituximab may be more effective in my case, and just because it was two years last time doesn’t mean it is still developing at the same rate.
What I do know is that follicular lymphoma is rarely cured, and relapses are almost inevitable. It’s just a matter of time. People, interestingly, don’t like to acknowledge this when I tell them. “Think positive” is the response, or “you never know”. I’m sure people think I’m just being pessimistic when I say that whilst I’m fine at the moment, it is likely – almost certain – to come back. But I’m not being pessimistic. It’s just a fact. It is almost certain to relapse again. And when it does, my healthy stem cells are in storage waiting to be used in a transplant. And that will be a big deal when it happens.
Can I live practically in denial, as suggested? In some ways I can, but in other ways I shouldn’t. Really what’s required is a denial of uncertainties, but facing up to realities.
Let me try to explain. It is practically certain that I will relapse again. But the timing of that is uncertain. So I should be acting in a way that prepares for the relapse, but also in a way that excludes fear in the present.
Complete denial would imply living in a way that expects my current employment status and way of life to continue uninterrupted. But realistically that’s not the case. I am self-employed and at some point my work will have to be put on hold while I have more chemo and a stem cell transplant, meaning that I can predict that at some point I will have another 6 month period (maybe more) with no income. And I know that in those circumstances we will have to tighten our belts. So two things start to drive my attitude to work and time allocation (priorities). First, the need to pack as much good stuff in for the kids (nice holidays, sports, outings, Christmas presents, etc) while I have the money to do it; and at the same time save for the period when I can’t work. Second, because of that, there is a need to earn as much as I can while I still can. So I have a drive to increase my daily rates, and to work as many days as I can. That’s a recipe for stress, I know.
But it’s also not what you expect to hear from a cancer survivor. When you hear survivors talking about how having cancer changes your perspective, you naturally assume it means simply that you realise that some things are not as important in the grand scheme of things. You would expect that one of the non-important things would be money. But certainly in my case you’d be wrong. I see it as my responsibility to provide for my family, so I feel driven to make sure I can still do that even through my illnesses. And that makes money just as important for me as before.
It may well be something I have to address spiritually (because of the idolatry implied), but for now it’s probably enough just to point out that sometimes people’s response to having cancer, or having survived cancer, is not what you expect. So it’s best not to make any assumptions. But I suppose on the other hand it could be seen as another example of where cancer takes its toll eventually, even when you seem to have come through initially fairly steadily.
Anyway, be that as it may, practically speaking I have a post-treatment CT scan in 6 weeks time, with a Haematology follow up 3 weeks after that. I can predict what’s going to happen between those two dates, but I’ll leave that until the next instalment!