Today is Day 68 after my stem cell transplant. I had all sorts of good intentions about writing a blog around Day 40 (Forty Days and Forty Nights)… missed that… then Day 50… missed that… and indeed Day 60. Time flies when you’re having fun – and I have been, I’m glad to report. I’ve come on leaps and bounds since I last wrote – to the extent that in many ways I’m back to normal, and am surprised when other people are surprised by that. So it is well past time to write that blog, and bring the picture up to date a little. Besides, it’s raining in London. The sky is unrelentingly grey. After a glorious few months of record-breaking heat (by British standards at least!) and lovely sunshine, the weather forecast this week looked like this:
So it’s a good day to stay indoors and write. Except that, I’m rather smug to report, I’ve just been out in the park with my personal trainer, wearing my brand new luridly pink trainers and Team Viking t-shirt and various other new items of sportswear courtesy of the Fit FUNd I wrote about after my birthday. I don’t think any of the exercises I did put me in contention for the next Olympics, but bearing in mind I could barely walk around my flat less than two months ago it’s all pretty seminal in my terms. I also always find that I feel much better afterwards in mood and energy levels. Alongside the garish gear my first major Fit FUNd investment is in a 4-week block of two sessions per week with PK the trainer, along with a commitment on my side to do another cardio session a week, and give up booze, white carbs and sugar. I’m interested to see the end result! And here to brighten up a grey London evening are my new and old trainers: sports footwear seems to have got a lot brighter in the last 8 years…
If that all sounds a little too Fit and not quite enough FUN, then rest assured that there’s plenty of generously given dosh left for that too. I’m particularly keen on doing some sort of spa break in due course, but will save that till I’m actually allowed to wallow in a jacuzzi again. Swimming is sadly banned for me at the moment by my hospital. I’ve come across other myeloma patients able to swim at this stage post-transplant, so I did try asking twice, in the hope of a different answer. Having got a very clear ‘No, ask us again after three months’ I’ve decided not to disobey orders. The problem seems to be all the nasty bacteria one might find when hanging out in a pool of warm water alongside the Great Unwashed of Clapham Common. I can kind of see their point, when you think about it like that. Although all my full blood count levels are normal, there are more subtle elements of the immune system that aren’t up to speed yet when you start digging around a bit deeper. I don’t have enough lymphocytes. I have no idea what lymphocytes are, but tend to trust my doctors and their vastly superior knowledge which seems to have done pretty well for me so far.
Having said that, I did swim twice in the sea in Cornwall a week ago! (I decided not to ask the doctors about that, in case they said no. Surely the sea is much colder and Cornish people much cleaner? In any case, I survived). Aside from that lovely mini-break, other highlights since my last post have included catching up with extended family at my cousin’s wedding, my uncle’s 70th and (very sadly) my Grandma’s funeral last week. I can’t even begin to do justice to describing the 91 years of Verona the Great and the influence she had on her Viking tribe of 5 children, 12 grand-children, 18 great-grandchildren and counting. Suffice to say that, as with my Grandpa on my mum’s side, she is gone but not forgotten: both are inspirations to me and all of us descendants for dealing with all sorts of situations in life – whether it’s to grit your teeth and get through tough times (like they both had to) or to say ‘Bubbles to that!’ and have a laugh about it all.
On the cultural side of life, I’ve enjoyed a fantastic Prom on Friday and some great films at the open air cinema in front of Battersea Power Station. I’m still fairly hit and miss about evening events (my energy levels are fine at times but there’s still a limit to how much I can do in one day or week and the inevitable slumps in between busier times, all a little unpredictable) but starting with the ones where you’re sitting down seems to be a good call! The Mindless TV: Good Books ratio has also been improving: I think when I last wrote I hadn’t even been able to start reading but have now finished my third book and started my fourth, which again feels like quite a milestone in the context. (The Secret History/ A Confederacy of Dunces/ Capital by John Lanchester/ Stoner – for anyone interested!)
On the medical side, I’m now down to hospital check-in visits every two weeks, and suspect that will be down to four weeks after I go tomorrow as there isn’t really anything to report. Things are returning to the ‘new normal’ of the past two years. In particular, now that my bone marrow is less battered I’ve re-started my Zometa infusion which I have once a month on a 15-minute drip; this is something which helps deal with the bone damage myeloma can cause. Normally your bone is constantly remodelling itself, with osteoblasts building it and osteoclasts destroying it. With myeloma, the balance is messed up so that more bone is being destroyed (hence the bone lesions, fractures etc common in myeloma patients). So, even while in remission, most myeloma patients will be on some sort of bisphosponate (Zometa or Pamidronate or similar) to deal with previous damage or help prevent new damage. There also seems to be evidence that these help extend overall survival, so it’s generally A Good Thing – although annoying of course to have to go to hospital as often as monthly even when you’re otherwise free from treatment. My hospital used to use Pamidronate which took 90 minutes to infuse, plus a flush, which meant a couple of hours every month feeling like a cancer patient: so Zometa is a definite improvement being quicker. While I’m there each month I give blood and urine samples for my ongoing monitoring, and every two months I see my consultant. That’s the routine I’ll be returning to in around 6 weeks or so, after one more bone marrow biopsy and the transplant team handing me back to my usual consultant.
I’ve been signed off as unfit work till October 15th (three months after transplant seems to be the rule of thumb) and although I may go back a week or two earlier, I’m resisting any urge to go back during September – and yes, honestly, there is an urge to resist! In some ways it’s quite hard having no routine and structure, a succession of free days, not very much energy to do all the things you’d like to do and a horrible cancer to think about. So psychologically it’s actually appealing at those times when I’m feeling more myself just to hop back into the rat race with a phased return to work – plus of course the irrational guilty conscience thinking when I’m feeling good: ‘I could probably do some work if I tried right this minute, doesn’t that mean I’m skiving?’. On the other hand, I do realise that although I’m feeling ‘better’ this is very much a relative concept, and work is stressful and tiring in ways that I’m forgetting right now. As with any case of the flu it’s all too easy to go back to work that bit too early and find you’re not as ready as you thought you were – and you’re not doing anyone any favours by showing up and flaking out. Hence my month of focusing on building my strength back up – and the helpfulness of the training sessions also as adding some structure midweek.
So, seen from a certain point of view the (to me slightly hilarious) upshot of all that – and the key point to convey in this blog for those I’m out of touch with – is that I’m no longer in Invalid Mode and for the next 4 weeks am very much in Lady Who Lunches Mode: whiling away my hours with a bit of shopping on the King’s Road in between sessions with my personal trainer, trying to catch perhaps a couple of plays, concerts, exhibitions, actually managing to read my book for book group on time. I guess I should make the most of it while I can! After all, I bloody well deserve it.
Anyone who wants to join me is more than welcome… Fun stuff at weekends and some evenings is definitely included in that.
Yours, leaping and bounding,
Helga the Great x