The new plan
My Allograft 2018/19 – 3. Friday 14th December 2018
By Andy Burrows, 14 December 2018
“How are you feeling,” we asked all our kids several times on Tuesday evening, trying to make sure they were digesting the change of plan ok.
“I’m just confused,” was the response from our youngest, who is about to turn sixteen!
“Join the club,” was the thought going through my mind!
I guess it didn’t fully hit me, and I didn’t really have chance to process things properly, until yesterday afternoon. Wednesday was busy – I can’t even remember why now!
Yesterday we walked the dogs after the school run and then Heidi went off to her part time job in the farm shop at 1pm. And that’s when the silence hit me.
Everyone was out of the house. After being flat out busy for more than two weeks with things to do, either at hospital or at home, to prepare for the stem cell transplant and being away from home for six weeks, suddenlyI was faced with two hours of peace and quiet.
I’m an introvert, and that kind of peace and quiet is what I need to process big things mentally and re-energise.
Yesterday, it hit me. What do I do with this time? And yet, as I’ve written before, I’m normally someone is obsessive about being productive. I have a ‘to do’ list that means I know exactly how I’m going to spend time.
Yesterday was different. I had no motivation for the ‘to do’ list when Heidi went out the door to work. I sat and stared at the Christmas tree with it’s mesmerising lights twinkling in the corner… for two hours.
I was contemplating how to adjust, in the sense that the latest change of plan re-emphasises the magnitude of the impact of this fourth cancer battle on my life and career. By the time I will feel I’m in a position to feel “back to normal”, normal will have changed. I was contemplating the comments of kind people who say that my new vocation should be writing – I’m flattered, but I haven’t got a clue what I’d write about or how I’d make it pay enough… but it’s an attractive thought.
The plan for the diversion
And then I had to pop round the corner to Basingstoke hospital to see the haematology doctor and nurse specialist.
(This is – to give you a picture – the position I’ve got to now. Gone are the days when I would get letters from the hospital with appointments, referrals, appointment reminders, etc. Now I get called on my mobile by consultants and nurses to chat about things. I know most of the staff on the unit at Basingstoke hospital really well – the receptionists don’t need to ask my name and date of birth to book me in. They just say, “hi Andy, go in the waiting room and I’ll let ‘so-and-so’ know you’re here…”. Hospital is now like my second home!)
And we sat and chatted about the plan for the next six weeks. And I took some comfort from the fact that they seemed to be formulating a pretty clear plan to make it six weeks, and not a vague plan that could spillover two or three months if we weren’t careful.
So, I start my next lot of chemo next Monday (17thDecember). It’s a different drug combination again – good old Rituximab, plus Gemcitabine and Oxaliplatin. Similar strength and impact to the R-ICE I just finished, but it’ll only take half a day to infuse.
There’ll, God willing, be another cycle on New Year’s Eve.Then a PET CT scan around 14th Jan, and then back to the stem cell transplant towards the end of January provided everything has gone well.
I’ve been warned about a couple of particular side effects, which I’ll tell you about as I go through them. But essentially, I’ve got to get my mentality back into having low blood counts, needing blood/platelet transfusions, and being at high risk of infection. Back to the “clean” diet, boiling my water, avoiding mixing with people, refusing visitors, etc.
But on the plus side, I will be at home for Christmas (unless I come down with an infection that puts me in hospital).
The overall positive
Overall, this change of plan is not a setback. It’s just an extra bit to get to the same place… although I guess you could be pedantic and point out that’s the same thing!!
What I mean is – and this is the message the transplant consultant really wanted to get across to us – this delay and additional treatment is all about maximising the benefit of the stem cell transplant. The transplant is still going ahead, and the odds haven’t changed. We just have todo some extra things to get me in the right position to go into it.
It’s a bit like delaying a NASA mission to make sure everything is prepared perfectly for success. Or perhaps, to stick with my favoured analogy, making sure everything is meticulously prepared and in good shape for an Everest ascent. Definitely worth doing when this is something you’re only likely to do once in a lifetime.
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Becoming a stem cell donor
By the way, if you want to find out more about being a stem cell donor, here are a few links (UK-based mainly):
(Stem cell and bone marrow donors are amazingly kind people who offer to sacrifice their time and endure some mild discomfort to help save the lives of people like me who have a type of blood cancer – lymphoma or leukaemia.)
The possibility of being home for Christmas is great news. Don’t get an infection first! Keep the updates coming as and when you can.