Choose Your Own Adventure

I mentioned that I will have treatment options, and choices to make. I’ve already had a discussion at my own hospital about what they advise. This gives me a choice between treatments A and B, and I have some leaflets to read about likely side effects. On Wednesday I’m due to go to another hospital and get a second opinion: partly for peace of mind, but also in case there’s some sort of trial available there or other ‘pull’ factor which makes it worth moving. I’m very happy with my current hospital so there is no ‘push’ factor.

Some considerations I’ll factor into the balance are practical: one is more central and closer to my office, but then again it doesn’t have a car park which could be problematic at a later stage when I won’t be using public transport. A central location also conjures up the idea that when I’m in an inpatient I might get more visitors – before I remember that when I’m an inpatient I’ll be in an isolation ward and not really up to visitors. Besides, Viking hordes can handle the Northern line to Tooting, surely?

Some are more emotional: I’d think long and hard before walking away from the familiar and trusted faces at my current hospital who know me by name and vice versa. Would it be exciting or de-stabilising to start a new phase in a new shiny building? Would I miss the corridors I’ve walked a zillion times in the last 19 months if I left them, or find it depressing and retrograde to be there so often all over again? Etc.

On the medical side, to avoid going into complicated biology lessons just yet, I will give you two more metaphors.

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The first is culinary: this time around, I’ll be having a starter and a main course. Last time, I just had a starter, as I was on a trial which meant that if you got on particularly well with the starter you could delay the main course to first relapse.

My current hospital are giving me a choice between two starters (VTD and RCD), but the main course is fixed (high-dose chemo with a stem-cell transplant… sounds very Heston Blumenthal). It’s highly likely that any doctor I ask will also recommend I take the main course this time around. I’ll go into more on that later but basically it’s F-ing hardcore and deeply unpleasant. Luckily I know people who’ve done it, even twice over, and are back enjoying life.

During the starter I should be able to keep working to a reasonable extent, and keep enjoying doing nice things with you all, although with all sorts of peaks and troughs within that due to side effects. I’ve no idea if this phase will last 2 months or 8 months, but likely somewhere in the middle. After a short 6-week pause (for some sorbet – or rather various tests and admin) I then proceed to the main, which involves around 3-4 weeks in hospital and then probably another 3 months or so fully off work, feeling exceedingly awful but progressively less so.

Then I guess it’ll be time for pudding… Maybe a big fat holiday.

Anyway, I promised you a second metaphor and I really ought to be in bed by now so here we go. This one is literary (just about – although I don’t think it would make the cut for Book Group which is what I’ve been at this evening after work).

Picture below. Anyone else remember these books? For me, it brings back memories of kneeling by the shelves on the prickly carpet in the children’s section of Beaconsfield library and getting out my quota of six books a week which I’d usually devoured within a day or two.

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That’s what this feels like. Currently in myeloma medicine there are a particular set of treatments, or chapters. You can take them in different orders. Sometimes you’ll find yourself chilling on the sunny beach of ‘the New Normal’ for a while with just the odd bad dream of past and future chapters; in the next moment you may be facing crocodile-infested swamps. There are all sorts of possible feedback loops and deja-vu features. You can have the same or similar treatment twice and find yourself back where you were two chapters ago. People you know who are reading the same book may have a totally different experience in a different order or at much slower or much faster speeds. This time last year, some of my ‘classmates’ – i.e. people I know who started reading the myeloma adventure book at the same time as I did – were having a grim time in chapter 2 (SCT) while I was happily launching into chapter 3 (drug-free remission). Now I’m in Chapter 4 (first relapse) before them, but then I’ll be back to Chapter 2 and hopefully another long sojourn in Chapter 3. Yet other classmates had a hideous time in Chapter 1, and so were diverted through multiple other treatment chapters, but are now in Chapter 3 too. And so on. New chapters are constantly being added too, for a good book has many twists and turns and there are numerous new myeloma drugs in the pipeline.

To some extent, being (even with good advice) responsible for making my own treatment choice each time does at times feel a little bit like this:

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Then again, I’ve seen myself and other myeloma Vikings get to a stage of being more phlegmatic: in spite of the amazing research which is going on apace, this is just a time in medical history when nobody really has a clue. That may not sound that comforting, but in a funny sort of way it is. There are plenty of treatments out there which work to some extent, so medically my arsenal is well stocked, and much of my powder is dry. 2014 will be a very medicalised year for me, but with the starter-plus-main combo the aim for me is to get a longer remission second time around. 2015 and beyond will be full of pudding.

Yours, mixing metaphors beyond any point of salvage and past her bedtime,

Helga x