A time for giving?

It’s Christmas!

I know I’ve left it a bit late to ask for Christmas presents this year, and the chances are I’m not getting you anything, but I’m going to inflict with my wish list anyway – BECAUSE IT’S CHRISTMAS! And, of course, as any John Lewis advert devotee will remember from a few years ago, the joy is in the giving, so I’m probably doing you a favour. Right? Just don’t give me any more bugs, please, after the metapneumovirus (not as cool as it sounds) that’s been challenging my immune system this winter…

I’ve been given so much (not least the stem cells necessary to build a new, functioning immune system to keep the leukaemia away), but some of my greatest joy over the past couple of years has come from opportunities to give something back. Of course, there’s only so much I can do as an individual with a job and around 400 Twitter followers, and a mixture of a wonderful crazy wife who keeps me very busy and occasional fatigue means I never manage to do nearly as much as I could, and should. But when I know I’ve done something I know could potentially help someone else going through the sort of experience I’ve faced, it feels very right.

So perhaps you’d like to help me through a Christmas gift this year?

1. 

   This is how I’ll feel if you sponsor me…

   Give a donation to sponsor me on the 2016 Great Escape Hengistbury Hike to raise money for Shine Cancer Support
   It’s not just me, actually, and that’s what makes it even more special. Shine supports young adults who have / have had cancer, not least through getting us together and enabling us to share experiences, learn how to deal with our changed circumstances, inspire each other and celebrate life together. That’s what we’ll be doing at the Great Escape for a few days in January, and on the final day we’ll be pulling together to get every Escapee from the start to the finish of the Hengistbury Hike. Please sponsor me: quite simply, the more money we raise, the more young people facing the uncertainties and challenges of a cancer diagnosis Shine will be able to support.
   GIVE to Shine this Christmas!

2. Give blood to support any number of people in need, almost certainly helping to save lives
   I lost count of the number of blood transfusions I had during my treatment. Donated blood can help so many people in so many ways, and it could help you – so have you signed up as a donor? These are some ways your blood could be used, as NHS Blood and Transplant explains:
   • red blood cells – used to treat some types of anaemia and replace blood lost as the result of an accident
   • platelets – used to treat problems with bone marrow, such as leukaemia and people with blood clotting disorders
   • plasma – used to treat conditions where abnormal clotting causes bleeding, such as liver disease, and where large volumes of blood have been lost

   Blood donors can also sign up to the NHS’s British Bone Marrow Registry; an alternative if you don’t meet the criteria for Anthony Nolan or Delete Blood Cancer. But hopefully you’ve already signed up to potentially save a life as a stem cell donor…

That would be more than enough for me this year. Thank you!

Have a happy, happy Christmas!

Day +14 (and +13): Selective memory

A memorable photo of tulips outside St George’s, by my father

While browsing a forum for stem cell transplant patients, I was fascinated to read about one woman who has absolutely no memory of her transplant or the days before and after the procedure. She was looking for reassurance that there was nothing untoward in her lack of memory, particularly given the detailed stories being recounted by other transplant patients. It turned out that she wasn’t the only one, though – others seem to have blocked out at least some parts of the experience.

Today I was talking to my uncle, who was fondly reminiscing about the buzz and camaraderie of his high-level legal work in Singapore, having moved back to to the UK and taken on a gentler workload from his new base in Somerset. He was aware, however, that in looking back at that time, his memories tend towards the good moments while ignoring the drawbacks of what was a highly pressurised, time-consuming and often draining role. I believe I’m the same when I recall my previous time in hospital; it’s easy to look at my first battle against leukaemia as quite a fun and interesting adventure, while forgetting the painful moments, difficult procedures and various setbacks.

The human mind, it seems, is often very good at providing a rose-tinted view of the past. Perhaps this is to protect us: to remember the tougher parts of our history would be to relive them, and this is likely to be far from cheering or encouraging. On the other hand – as my uncle said – the grass is always greener on the other side: when going through a low patch, events from our past can seem glorious, even when in reality they were never as perfect as we remember. The passing of time rubs out a lot of the tricky moments that perhaps we do not want to remember, which is perhaps why you sometimes hear people longing for a better, bygone era that never really existed.

And so to the present. I wonder which memories of my stem cell transplant will burn brightest as time goes by. The toughest time so far this time around has probably been during the MARALL trial, but I’m already remembering it more fondly as the treatment that got me into remission. The crucial days immediately after my transplant have provided few defining moments to pin in my mental scrapbook – but of course Day Zero will always burn brightly in the memory.

Days +13 and +14
It’s partly the sheer uneventfulness of Day +13 that explains why for the first day after my transplant, I failed to post on my blog. There really wasn’t much to report on the medical front, and I was feeling a bit too tired to conjure up anything more creative. The only real news was that my neutrophils were down to 0.6, so I had another shot of G-CSF, although that is probably most interesting in relation to today’s news.

SUPER-KAPOW!

For today my neutrophils shot up to a remarkable 6.6 – I don’t remember reaching such heights at any point since they have been recorded. I’ve always been pretty sensitive to G-CSF, but I like to think that such a leap is only partly due to the growth hormone, and partly the result of strengthening production by my flashy new bone marrow. Apparently it’s quite normal that they fluctuate before settling, so I’m sure there’ll be a lot more ups and downs to come.

I also had my ‘chimerism’ tested for the first time today. We won’t get the results until a few days’ time, but when we do we’ll know what percentage of my cells have been produced by the new bone marrow and what percentage come from any of ‘my’ residual bone marrow. However, this, too, is expected to fluctuate a fair bit: apparently the first test usually shows up as 100% donor cells, before dropping to about 80%, only reaching a true figure (hopefully 100%) when it settles later on.

Otherwise, I’ve been a bit more sleepy but still enjoyed a lot of family company today. I’m a bit sniffly still, so I’m not sure how well the Tamiflu has dealt with my influenza, but doctors seem relatively unconcerned. Counts (including liver function, critically) are looking good, so I may get to go home sooner than expected. As always, though, I won’t believe it until it happens, and in the meantime I’m quite comfortable here in Bed 6.

The days are shooting by, though – tomorrow I’ll be halfway towards Day +30: the first milestone!

Relative hair loss with uncle Philip and Fred

This is Hardcore

A bagful of blood helps the medicine go down

Well, they said it was going to be intensive, and they definitely weren’t joking. I’ve not managed to blog for a few days because the chemo really wiped out my energy levels. The good news is that I was given some blood last night and am receiving some more now, boosting my haemoglobin and therefore energy! Hurrah!

The third chemo drug (Ida-rubicin) was started as planned on Sunday. Coming through the tubes, it looks like Lucozade, but that’s where the similarities end. It’s been the Cytarabine that’s felt like the biggest burden, though; not only does it run over four hours, but it also makes me feel as though my body is really having to work hard when it’s coming in. No surprise really, given that the chemo is attacking my body! Having said that, it felt like less of a strain last night.

To add to the fun, I’m now on the full range of anti-emetics, anti-fungals, anti-everything else, as well as Pentamadine (breathed in once a week, I think) to protect my lungs. But oh no, that was never going to be enough for me, so I spiked a temperature (it’s been up pretty regularly over these few days), leading to serious antibiotics (the doctor said they call it Domestos), the taking of blood cultures and a few doses of good old Paracetamol.

So the past few days have been… heavy. I haven’t necessarily been feeling too bad, but I’ve just been so tired. I spent most of yesterday in bed – some might say that for me it must have been heaven, but to be honest it’s just frustrating. The next most annoying side effect has been that I’ve had more than my fair share of diarrhoea: it’s not very nice to start off with, of course, but it’s even more annoying when I have to drag my IV trolley all the way around the bed to the bathroom, then back again, only to then realise I need to go and do it all again shortly afterwards… At least I get some exercise, I suppose.

Enjoying the pre-Pentamadine nebuliser

The good news, of course is that today is Day 6, the final day of the protocol, so I’ll be getting my last G-CSF and chemo for this round. They will still of course be working their devastating magic inside me for a while, but it will be a relief not to be plugged into them for so long.

Thank you for all the cards and messages; it’s particularly wonderful to wake up to a pile of envelopes in the morning and exciting to work my way through them. Thank you, too, to all my lovely visitors over the weekend. Hopefully my energy levels will stay up long enough for more blogging; in the meantime I might try to teach Mariacristina and my siblings (Harriet arrived from Malaysia yesterday!) how to use WordPress so they can keep people updated even if I’m too tired.