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!



One thought on “It’s the Hope that Kills You.

  1. Hi Andy what an up and down ride you’re having. I hope you can begin to put weight on and start feeling better again! It seems there’s so much waiting after appointments.
    Enjoy the football match and no doubt some wine x


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