I’ve been thinking back to my last few posts. Why do I feel a bit bad for sharing positive updates?
I’m horribly conscious as I write this that some people won’t be having a good day today, won’t be getting encouraging results. Over the last 6 years Husband has had results which have been tough to hear, surprises which have frankly been soul-crushing.
The splenectomy gave him a fraction of the remission that the doctors had hoped for (but it can work brilliantly for others). The first round of chemo (RCVP) gave him an 18-month break from the need for treatment but it wasn’t the remission that we or the doctors had hoped for – perhaps because the Waldenstrom’s arrived on top of the indolent SMZL. We were literally packing up the car to go on holiday when the hospital called to say that the doctor wanted to see Husband the following day (see here for post). We had no idea what to expect but Husband was told that he needed a new course of chemo (see here for post). That felt like a punch to the stomach and left us both a bit winded and stunned but we didn’t have time to think – we just had to prepare for him to start chemo, try to clean the house and get food that he could eat. But that course of chemo (Bendamustine and Rituximab) has given him nearly 2½ years of precious stability, without needing treatment. He’s been fortunate and it’s worked so much better than he’d hoped.
I share this in the hope that it may provide hope for someone else – blood results can change direction in the way that we hope for as well as in the way that we fear. But I really don’t want to insult anyone with what the awesome Kate Bowler calls ‘toxic positivity’. This is a cancer and it is horrid. Everyone will have bad days – very bad days. It is hard to bear. But many people living with cancer also have days which can be surprisingly good. When we were first given Husband’s diagnosis it felt like a death sentence. Almost 6 years on he has a good life. We are unlikely to have the retirement we’d hoped for but right now things are good and 6 years ago we wouldn’t have dreamt that he could feel so well at this point.
We couldn’t have dreamt of a world where we could ‘accept’ the cancer either but we have learned to live with it. I say ‘we’, which may sound terribly presumptuous. I do not have cancer. I live alongside it rather than with it but my life is inevitably impacted by my husband’s cancer – my life has to work around it.
I love to plan things, to try to be organised. Cancer rather gets in the way of that. I might as well write in huge letters all over my calendars ‘subject to cancer’ / ‘if cancer allows’. I have had to get used to planning in 3-month periods. This isn’t an easy thing to do. Our culture seems to expect us all to be able to sign up to things in 6 months or even a year’s time. I can’t do that. All I can do is pencil things in with the cancer proviso hanging over us. But how amazingly good it feels to be able to plan things at the moment. We have lost people close to us in the last couple of years who have been diagnosed with different cancers – diagnosed after Husband, leaving profound spaces in their family homes after their deaths.
Sometimes Husband almost feels a bit guilty that he was diagnosed 6 years ago and while he is not cured, he feels good. He admits that he forgets how ill he was at times. He tends to focus on the positive, on the things he can control and not dwell on what he can’t. When he was in his ill phases he was pale and grey and weak, he seemed to shrink and age significantly. But now he feels and looks strong and can be as active as he wants. It’s an amazing thing.
I hate the fact that anyone has to live with cancer. You can’t necessarily get rid of it but you can shut it away sometimes. Husband is able to have a life – a different one to the one he’d expected – but a good one. He is good at living his life. I will be the one feeling sick and quiet when he next has worrying results. I don’t want to be a hypocrite by pretending otherwise. We know that at some point we’ll get disappointing news. But when that happens I will have a strong coffee, pray, hug the dog, walk the stress out and get on with it. Husband will probably carry on gardening.