12 June 2015 – Not Good News (Cancer and Me 31)

Only two and a half months ago I was wondering how I would know whether the lymphoma was back. I needn’t have worried. Somehow something led to an investigation, and then a CT scan showed it up.

But the news I received two days ago with the results of the biopsy was as much a shock as finding out it’s back in the first place. They are pretty certain that this is high-grade lymphoma. (When I say “pretty certain” it’s because apparently the pathologists have not fully completed their tests and prepared their report, but “from what they can see” when they discussed me at the MDT – the weekly cross-discipline forum – they are 90% sure it’s high grade.) This will hopefully be confirmed soon.

This is not good news. For one thing it’s unusual. The majority of high-grade lymphomas are apparently cured in the first round, using R-CHOP chemo and rituximab. And therefore, for another thing, it needs stronger treatment the next time round. And even then the prognosis is not as good.

From what I understand, with a high-grade non-Hodgkin’s lymphoma for the first time the chances of beating it (correct me if I’m wrong) are high. With relapsed high-grade NHL the chances of beating it completely are lower.

So I’m facing either R-DHAP or R-ICE chemo followed by stem cell transplant. There isn’t much difference between the two regimens, although from what I can tell R-DHAP is slightly more palatable for the patient (although that’s all relative!).

But they still haven’t confirmed what’s happening next, and we’ve now got to get through the weekend. They said they wanted to start next Wednesday (5 days time), but it seems a bit rushed to get things done (getting a PICC line in, doing a bone marrow biopsy, and things like lung function test and echocardiogram) so they’re saying it doesn’t really matter if it’s the week after as my symptoms are not serious at the moment.

So this has thrown me a bit. The chemo is much stronger and more intensive than anything I’ve had before. It’s delivered over the course of 3-4 days, during which I have to stay in hospital. There’s a high risk of ‘complications’, by which they mean I might get infections that I can’t fight off without time in hospital. That means having to be extra careful – even more careful than the last times I went through chemo – about cleanliness, diet and hygiene. I will basically be housebound and unable to have visitors. And if I get the slightest temperature or ‘flu like symptoms, or swelling or ill feeling, I have to get to hospital straight away, without waiting until morning or waiting to see if it clears up, etc. This is serious stuff.

The reality of that hit hardest when we asked today if they thought I’d be able to go on holiday to Wales with the family in 5 weeks time. They (the haematology nurse and doctor) said they strongly advised against that. There’s only two places they’re happy for me to be during this treatment – home and hospital. And when I’m at home I have to be accompanied most of the time, so that if I should develop a fever I can get to hospital very quickly. While I’m at home we live 5 minutes from the hospital – we’re basically next door to the car park! In Wales we might be half an hour from a hospital, and it would be a place we wouldn’t know where to go and they wouldn’t know my treatment or my illness or anything. And apparently when infections arise minutes really do count.

So I have to stay at home with my mum and dad while the rest of the family go on holiday, and the kids and Heidi have to try and enjoy it and make the most of it while hating the fact that I’m at home feeling rubbish.

And as far as work is concerned, I can’t be in the office once I start treatment. But apparently I can do some work from home if I feel up to it. Given that I want to keep earning, that’s something that I’ve agreed with my boss/client that I will try. It has to be on the basis that I’ll see how it goes, but I think I should at least try that.

But it still means stepping back from the project that I’m involved in. I’ve been managing the Finance workstream in a big integration programme for the last two years, and we still have at least 6 months to go. Attention has turned in the last 3 months to the phases that I’m managing. I’ve delivered two phases and I have (I should say ‘had’) another 5 elements to deliver by the end of the year. I can’t manage projects realistically if I’m not on site and I can’t reliably get to meetings and workshops and conference calls. But what I can do is contribute my brain when it’s needed. It’s what I’m most valued for there anyway – my ability to critique, think laterally, see connections and dependencies, spot inconsistencies. So the (very raw) idea is that someone else will slot in to project manage and represent Finance, and I will slip into the background in a more consultative role. We’ll see if that works.