Mini Ups and Downs (SCT Day +47) – 24 January 2016 (Cancer and Me 67)

24th January 2016 1 By Andy Burrows

I’ve been home from hospital a month now. Considering what I went through, so I’m told, my recovery is going pretty well. But sometimes it doesn’t feel that way, probably because I’m impatient.

For instance, one of my targets was to get to the point where I could stop being careful who I see and where I go because of the risk of infection. I thought that would be around the beginning of February. But I saw the consultant in Southampton a couple of weeks ago, and he said that my blood counts are so good and trending in the right direction that he is completely relaxed. He told me I could do whatever I felt up to, just don’t get close to people who are clearly ill. Diet-wise, I can also stop boiling the drinking water and go back to normal, just avoid pate and soft cheeses for another couple of months.

So I went to church on Sunday 17th, which was the first time since November last year.

On the other hand, my target of building up my levels of exercise is taking longer to progress towards. I have walked the dogs a bit more, but I’ve avoided the exercise bike and more strenuous things like sit-ups and press-ups. That’s because I still get quite breathless, and a little lightheaded when I stand up. So I don’t want to overdo things.

I’ve also now succumbed to the cold (the sniffy and sneezy kind of cold) that has been trying to get me for the last couple of weeks. That happened yesterday and has really knocked the energy out of me.

So two steps forward, two steps back.

The consultant did say that recovery doesn’t go in a straight line. He said some days will be better than others. That is true. And it means you can’t perceive any improvement if you compare day to day, or even week to week, progress. I know I’m much better than I was a month ago, and I know my experience of the stem cell transplant has been at the better end of the spectrum. Apart from that, it’s difficult to plot a trajectory. That said, because I’ve done so well so far, the doctor said he was confident I’d been ready to go back to work, at least part time, much earlier than the six months I’d been told to expect.

The trouble is, doctors seem to only think in terms of permanent employment with big organisations. So he talked about the doctors working with the ‘occupational health’ team at my employer to come up with a phased plan to get back into work. He was talking so quickly at that point that I didn’t have chance to interject that I am self-employed so I don’t really have the choice to phase myself back into work. In my line of work, I’m either not working or working full-time. Part-time assignments don’t come up very often. And it would be pointless to try to go for a new job before I’m absolutely sure that I can physically cope.

So putting myself ‘out there’ for work is not even on my horizon yet – not until I’m exercising comfortably, I don’t need an afternoon nap every day, and my hair is growing back properly (which, incidentally, it’s not at all).

So I was discharged from the care of the specialist lymphoma team in Southampton to the care of my old familiar team of haematologists in Basingstoke. And I have two kinds of pills to take for the next six months:

  • Aciclovir – this is to prevent shingles. Apparently, the chemo can make patients very susceptible to shingles, and I may even come down with it after the end of the 6-month course of pills.
  • Co-trimoxizole (Septrin) – this is to prevent a particularly nasty type of chest infection (he did tell me the name of it, but I’ve forgotten) which can be fatal. The doctor said that he’d never known anyone get that infection if they’ve taken the pills for the whole 6 months, but it is a danger if I don’t. I guess I’ll take the pills then!! It’s a weird dose – one pill on a Monday, Wednesday and Friday!

As far as things go medically, I have an appointment at Basingstoke hospital next Wednesday, and I expect to have a PET CT scan mid-March. That’s all. Apart from that it’s just a case of looking after myself and taking things a day at a time until I’m confident I can cope with normality (whatever that is!).