Friday 7 December 2012

Change is the only constant

Rewinding back to a week ago, I went into hospital to find out the results of my latest PET scan, and, after waiting for an hour or so, the doctor called me in for the consultation.  The doctor started by suggesting that we had a look at the latest PET scan, but, after fiddling with the computer for thirty seconds (at the most) whilst mentioning that the computer has been a bit unreliable recently, the doctor decided to abandon that idea, and just summarise it for me instead.  Whilst I was listening, I couldn't help but smile at the thought that as I'm waiting to find out the results about whether the antibody treatment is working or not, and consequently whether I'm still on-track for a potential cure or we're about to discuss how much longer I have left to live, we're essentially sat trying to load-up what to me isn't much more than a pretty picture, courtesy of a mobile PET scanner!  This really just helped to reinforce a comment that I often make to colleagues etc about designing anything: We're all superficial really - Whether it's great or dire, people will like it a lot more if it's pretty!

So, what were the results, I hear you say?  Well, putting aside the lack of pretty pictures, they were good.  The antibody treatment is working well enough for me to proceed with the Allogeneic (from a donor) Stem Cell Transplant, as the mass has shrunk a little further, but more importantly is much less active.  There are still some areas on the PET scan where the activity is above what would be considered normal, hence I've not had a complete response to the antibody treatment, but the partial response has been good enough; As you may remember, I had previously been told that they were looking for the PET scan to be negative (look normal), but it seems slightly positive is fine too, as it doesn't seem to affect the outcome, and further doses of the antibody treatment, whilst I wait for an available slot for the Allogeneic Stem Cell Transplant, may improve my response.  So, your (but evidently not Starbucks') taxes were put to some use after all.  I did talk to the doctor for a bit afterwards, just to clarify a few things that I was curious about, and to joke that it was especially important to be nice to me/helpful this week, as all of the doctors' consultations were being reviewed by their patients, but ultimately proceeding with the next stage of treatment was the important point, which meant going back to Leeds, after the weekend, to discuss the plans in more detail.

After the weekend passed, and a failed attempt to find a Burger King on the way to the hospital in Leeds, all that was left was getting bled, weighed, measured and swabbed (again!), before talking to the doctor about the Allogeneic Stem Cell Transplant.  The consultation didn't really go as I expected though, as, after I asked a few follow-up questions based on the previous consultation and provided some further medical history, I was informed that Leeds didn't have an available slot until the end of February, and that would have really meant putting my treatment back further than the doctors felt comfortable with, so I was asked whether I'd consider going somewhere else instead, e.g. Sheffield or Nottingham.  For me, it didn't really matter all that much, as whether it was Leeds, Sheffield, Nottingham or somewhere else, I'd only do the journey there and back once; On the other hand, for visitors, Sheffield was the preferred option, as it was closer, but Nottingham was fine too, if that proved necessary.  The doctor said the location of the after-care could be decided later on, be that at Leeds, Sheffield, or shared between Sheffield and my local hospital.  So, I left the hospital in Leeds with the plan of having the treatment in Sheffield, if they can fit me in, or Nottingham, if not.

Note: One of my follow-up questions did highlight that whilst the Allogeneic Stem Cell Transplant does fail under the pressure or result in rejection in about one in ten cases, my assumption that it was then essentially game over at that point was incorrect, as it seems top-ups of the donor's immune system (Donor Lymphocyte Infusions or DLIs) or increasing the drugs that prevent rejection (immunosuppressants), respectively, is the next step.  Another follow-up question, about whether my predicted two-year survival rate of the treatment was any different now, highlighted that for some reason the results of my latest heart scan and lung function test hadn't made it to the doctor in Leeds, hence there wasn't much that could be said.  It is bizarre that with all of the technology available these days that hospitals don't have better systems in place, e.g. ones that enable the sharing of patient data irrespective of the medical professionals' location, but working in the software development industry myself I'm no longer surprised by the out-of-date processes that organisations have in place.

Whilst waiting to find out where I would be having the treatment, I was unfortunate enough to pick-up some kind of bug, which meant spending way too much time on the toilet for a couple of days, as I literally flushed away a few kilograms; Diarrhea is definitely not fun.  For the first day or so, I was also pretty drained of energy, had stomach ache, and had a headache, but after that it was really just gradually decreasing visits to the toilet.  It was a pain in the ass, if you'll forgive the pun, but not that bad really.  I did check with the hospital what they wanted me to do, but they just said don't eat, drink plenty, and avoid taking imodium, as if it's some kind of bug rather than a side effect of the antibody treatment, which seemed likely given it was quickly getting better, then it's best to just let your body get it out of your system.  The hospital did also say that it would be best to delay my next antibody treatment if I was still symptomatic when the treatment day came around, as it wouldn't be a good idea for me to go to the hospital, because I'd just help to spread the bug.

As it turned-out, I'd been fine for about half a day when, today, it was time to go for my next antibody treatment, so I went, but it proved to be a wasted journey in the end, as my neutrophils were once again too low, which meant I was prescribed some injections for boosting my immune system, with the plan to try again straight after the weekend.  However, that wasn't going to work, as the hospital were already too busy then, so it was pushed back a couple more days.  I did find out that having the Allogeneic Stem Cell Transplant in Sheffield was looking likely though, as the hospital there had requested my medical history etc, so I would likely hear from them shortly.  It wasn't long after I got home that I received a call from the hospital in Sheffield asking me to attend an appointment on Tuesday, where we would discuss the plans in more detail, and although they didn't seem to want to say they were committed to me having my treatment there in January I can't really see why else they would ask me to come along, unless they thought I enjoy trips to hospitals around the country.

I guess that brings us to the title of this post, as one thing that is certainly clear from the treatment of my Hodgkin's Lymphoma is that, just as in other aspects of life, plans change; Those changes can range from just minor diversions to complete changes of direction, but the destination is still the same: the best outcome, as perceived at the time, which for my run-ins with Hodgkin's Lymphoma is still a cure.  This last week or so has by no means been an exception to that rule, as some of the pieces of the puzzle have certainly moved around a bit, but the plan is largely the same.  Change is a funny thing really, as it's often resisted (and even feared), but it's the one constant you can rely upon, and, whether you like it or not, your options really boil down to embracing it or being left behind.

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