It’s the Hope that Kills You.

It seems an appropriate cliché to use four days before Crystal Palace take on Manchester United in the FA Cup Final.  It’s also apposite in describing the interminable wait for a scan result, particularly when there’s so much at stake.

It’s been a long time since I’ve updated the blog, largely because there’s not been an awful lot to report.  I’ve felt reasonably well, the blood counts have remained – until very recently – stubbornly low and each week has passed much like the last albeit with a slight improvement in how I’ve been feeling.  It’s never taken a scan or biopsy to tell me that that there’s a problem, I’ve always known and the results have merely confirmed it.

After an allograft precautionary PET CT scans are scheduled at three months intervals.  Given that you get a year’s worth of radiation in about an hour and a half this isn’t taken lightly and illustrates the need to monitor any chance of the Hodgkin’s returning.  My last scan was about three weeks ago and it was something of a shock to find out that it showed some enlarged nodes on the left hand side of my neck.  Now, that wasn’t necessarily confirmation that the cancer had returned, but the scan needed to go to a multi-disciplinary team meeting to be analysed alongside previous scans and my medical records.

I’d wandered into the consultation with my hat metaphorically on the side of my head, a song in my heart and a smile on my face.  I had had no symptoms or any inkling that a relapse had happened.  The only slight doubt that crept into mind was after the pre-consultaton weigh-in when it turned out that I’d somehow lost a couple of kilos in weight.  It was weight loss that had been a symptom at both my initial diagnosis and my first relapse.  Even so, to be told that there might be a problem with the scan was a bolt out of the blue.  The assault was complete, when already bent double from the news of the scan,the coup de grâce came with a knee to the face in the shape of an updated chimerism (percentage of my sister’s white cells in my bloodstream) score.

Now, the point of the last year or so’s worth of treatment has been two-fold: First, get rid of the cancer.  Second, make sure the graft of my sister’s cells is successful.  I’d been told a couple of months ago that the chimerism was 100%.  At that point I’d almost stopped thinking about chimerism as, in my mind, it was a case of ‘job done’.  So, when the consultant said that 100% was a rogue figure and that the score was actually 32% my day was complete.  I’m slightly surprised I wasn’t mugged on my way back to the car.

I was left with the prospect of a chimerism re-test which would take three weeks to turn round and a scan review which wouldn’t happen for another week.  I’m not a particularly patient patient at the best of times, but there was something familiar about the excruciating wait for news.  If the cancer returns there are a few more things we can try, but a relapse would hardly be ideal.  At this point my wife did what all sensible spouses would do and went on holiday to Venice with her family leaving me to nurse my neuroses.

The doctor called me on Thursday afternoon, but I missed her and it wasn’t until the Friday morning, nine days after the bruising consultation that I spoke to Lara (one of the technical nurses and an absolute star) who told me that the medical team were happy that the scan was clear.  To say I was extremely relieved is obviously an understatement, but in a sense it would have been a different kind of relief to know the cancer had returned.  I realise that sounds absurd,  but some news is better than no news and it’s that awful limbo of not knowing how the next few months or years are going to look that’s psychologically as difficult to cope with as the treatment itself.  I know there are people out there on ‘watch and wait’ and I don’t know how they deal with the endless uncertainty.  I take my hat off to them.

So, with a bit of luck and an improved chimerism score I can finally start thinking about a future.  I spent Monday afternoon with an occupational health practitioner to start discussions about a return to work plan and of course I have the FA Cup Final to look forward to at the weekend.  It says a lot about cancer and the twilight world you live in during recovery that the first day back at my desk as an accountant seems almost as exciting and tantalising a prospect as Palace playing at Wembley on Saturday.

As a quick postscript I’ve just taken a call from a consultant at the Churchill to say that the chimerism score is still only 35%, so next week we’ll be discussing a top-up from my sister.  I will still forge ahead with a back to work schedule and see how it goes….the plan is to give me a dose from sis and then, to quote the consultant directly, to ‘watch and wait’ before giving me some more!

 

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Me, my allograft and Steve McQueen

I don’t have much in common with the late, great Steve McQueen.  I’m hoping that my skirmish with cancer will have a more positive result, but then I have the advantage of another 30 years or so of research and some pretty clever treatments.  However, I was reminded this week of Virgil Hilts’ swift recapture in the Great Escape.  I was discharged from hospital on Monday afternoon after a month of incarceration only to be recaptured and imprisoned again less than 24 hours later.  Ok, I didn’t jump the perimeter fence of the hospital on a motorcycle, but you get the picture.  I’d spiked a temperature of 38 degrees, which is a bit of an occupational hazard when you’ve got a weak immune system, but it was frustrating none the less.  At 37.5 you’re told to call the triage team or the ward and a temperature of 38 generally means readmission and heavy duty antibiotics.

So, it was a case of same shit, different ward as they couldn’t fit me in on the permanently popular haematology ward.  So, I was an ‘outlier’ on the Blenheim head and neck ward for a few days.  I like the idea of being an ‘outlier’ it has a ring of cool about it which is totally at odds with the reality of doing word searches all day long, stressing about temperature spikes and watching old episodes of QI on Netflix.  Still, when the film of my life comes out I think I’m going to call it ‘The Outlier’.

The allograft (a stem cell transplant with a donor’s cells) itself was something of a curate’s egg.  Physically the experience couldn’t have been much better.  I was lucky.  I didn’t pick up any major infections along the way, I managed to maintain a reasonable appetite and didn’t suffer any of the more problematic issues I had with the autograft (a stem cell transplant with my cells) back in 2010.  My sister, who is my donor, produced more than enough stem cells to give us a really good shot at a successful engraftment and about 14 or 15 days after the transplant all was looking good.

And then the blood counts (White Cells and Neutrophils) which indicate how well the new immune system is being engrafted started to fall away.  One thing that you never want to hear your consultant say is, ‘I’m concerned’.  The doctors were flummoxed, the neutrophils dropped to zero and the white cells collapsed too.  The team were pretty honest in their appraisal that they were looking at something unusual and, at one point, there was a real possibility that the graft had failed and that we’d have to start from scratch and hope for the best.

At that point it felt just like the roof fell in.  All the things that I’d put to the bottom of my mind since being re-diagnosed bubbled, unwelcome, to the surface.  The shock of the relapse, the consequences, the emotional scars left by the autograft and the possibility I’d have to climb the allograft mountain again.  I won’t bore you with the details dear reader, but let’s say I ended up having a very useful session with a psychologist which ended with him saying, in a lilting Irish accent, “well, the good news is you’re not mad”.  That was comforting at least.  I wasn’t losing it, I was just subject to the kind of stresses I’d never had to encounter before, was getting cabin fever after 3 weeks in my cell, and obviously wasn’t feeling great after a load of chemo and a new immune system desperately trying to bed in.

And then the counts came back.  They gave me some hormone injections to boost the scores as well, but once the white cells, neutrophils and platelet numbers got some momentum they really started to move.  “That’s your sister”, my mum said, “she can sometimes be a bit slow to get going, but she gets there in the end”.

So, the net result is I’m sitting here now with a bit of acne – the immune system’s coming on so quickly I’m starting to get mild graft versus host disease, more of which anon.  That’s a good thing as it shows engraftment is taking place – you just don’t want too much of it, because it can be fatal.  With a bit of luck I’ll be home for a bit and my hospital visits will be restricted to the weekly appointments I’ll have in Oxford for the next few months.

It would be unfair of me to sign off without a word for some of the people who’ve helped me through the last few weeks.  The team in Oxford, as ever, was exceptional, not only in terms of medical efficiency, but also in terms of their compassion.  I can’t recommend them highly enough.  Then of course there are my parents and my wife (my rock, as usual) who slogged up and down to Oxford to see me when I wasn’t always in the jolliest of moods.  To my sister who didn’t bat an eyelid when I phoned to say that I might need a few more cells after having already gone over and above the call of duty – I’ll never be able to thank her enough.  To my in-laws and friends who’ve been there for me along the way – thank you it does make a difference.  Finally to former Crystal Palace legend Geoff Thomas, not just for his words of encouragement along the way, but for blazing a trail.  During the really dark times I thought of Geoff, his battle with leukaemia and everything he’s managed to achieve since.  For a fellow sufferer of blood cancer, the inspiration and hope that gives the rest of us is priceless.

And, ok, maybe I’ll never jump that fence on a motorcycle, but I have to say that walk to the car after being discharged on Friday evening was exhilarating enough and another step in the journey.  There is still a long way to go, but with the support I have around me, I know I’ll get there.