Home Sweet Home

This is a very overdue blog: you’ll be glad to know I am no longer incarcerated in Tooting and have been released back into the wild. I was discharged from hospital on Saturday 5th July, AKA Day +16 in terms of my transplant. Pretty good going, although also fairly typical from what I’ve read of other patients: I think my consultant gives the 4-week figure so that people aren’t disappointed! My escape was initially looking like Friday 4th, but ended up being delayed due to a Resurgence of Puking on the Thursday/Friday. It was then slightly delayed on the Saturday afternoon as I (for the second time only) needed a transfusion of platelets, and the first bag sent up were the Wrong Kind of Platelets (something like they were CMV Random and needed to be CMV negative…). This made me think of British Rail, and the wrong kind of leaves on the line…. So at around about 5pm I was finally in a car and seeing the wider world whizzing by for the first time in in two and a half weeks.

I spent the weekend being fed and looked after in the Viking Homestead chez Harald and Hildegard in Bucks. Then, after going back to Tooting for my Monday hospital check-up, I headed home to Battersea. After the non-stop intrusions of a hospital environment (vital and well-meant as they were), it was bliss to have my own personal space again.

As before, I’m not going to attempt to give a run-down of the medical side of things, side effects and so forth. Luckily there are much more diligent myeloma bloggers out there who have done a thorough job of that. But the overall trend is that I’m getting my energy back and slowly recovering as my immune system rebuilds itself. The first week was pretty tough, but since Saturday I’ve felt a bit more like myself and been able to get out of my flat a bit which helps.

It’s great to have the transplant behind me. I’ve realised recently that lots of people assume I’m still having treatment, so this blog is a good chance to clarify that my hospital stint was the end of it for now (and let’s hope for a good few years): it’s really just one massive blast of chemo (which I had on 18th June) and then about three months of getting over the massive chemical fallout. Think of me a bit like Chernobyl, or Fukushima…. The irony is that (as everyone tells me!) I look well, rather than like some sort of nuclear wasteland. Other than the baldness and a few kilograms of excess weight from the earlier steroids which is still mainly hanging around, I probably look pretty much ‘normal’. If we could see what is going on at cellular level, I guess it would look pretty different: a lot of damage and a lot of energy being expended by various bits of my immune system scurrying around trying to rebuild itself. Currently I take various supportive drugs: two anti-sickness which I’m gradually coming off, and one other which I’ll be able to stop once my platelets are up enough; then three more which I’ll keep taking for a year (antibiotic/ antifungal/ antiviral) which are to help prevent me coming down with anything nasty while my immune system isn’t great.

It’s very frustrating feeling so tired and indescribably ‘urgh’ much of the time. I was a bit sceptical that it could really take three months to recover, but I can see now how it might. I do have Good Days of feeling much more myself and relatively energetic, but they’re often followed by Wipe Out Days of barely feeling awake and unable to do anything at all. I’m also now well enough to be bored, which is, well, boring.

Still, it’s definitely worth it, and I just have to put up with it. As a family friend who is a doctor said to me when I was first diagnosed: there is a reason why patients are called patient. There is a lot of sitting around waiting: currently in my twice-weekly hospital check-ups, waiting for my bloods to be taken and for my doctorly chat; waiting for those to go down to once weekly and then once every two weeks; waiting for my hair to start growing back; waiting to be able to engage in normal life like a normal person doing normal things rather than missing out on it all while I scroll through daytime TV in a vain search for anything remotely tolerable; waiting to have the energy to read a book, which would be much more satisfying.

But each day down is another day closer: today is Day +27. Day +100 is a good benchmark for when I might be feeling pretty well over the worst of it. July is going to be relatively a write-off, but hopefully during August I’ll be able to enjoy some nice summer things (I’m especially looking forward to massive family get-togethers on both sides of my Viking clan, for a 60th, a 70th and a wedding) and September even more so. Then it’ll be time to wake up my brain with a return to work, and presumably invest in some nice dresses as I’m lucky enough to have been invited to three weddings and two hen dos in October! Definitely an incentive to be back on full form.

So there you have it! I’m not sure how much I’ll be blogging, as at this point when I do have any ‘oomph’ I’m more inclined to spend it doing other things; and as I mentioned I’m finding it all very boring, which doesn’t make for fascinating reading. I’ve long meant to write one about exercise, which even has a title, and will probably be quite motivating for me to write, so watch out in due course for ‘The Battle of the Bulge’!

Meanwhile, company definitely helps: particularly the rare breed of people who can be free during the day mid-week and hang out with me. Early evenings are sometimes feasible. I find it really tiring answering questions still, and am utterly bored of my own life and especially all things and thoughts medical, so as before my top tip is to avoid the traditional opening gambit of ‘How are you?’ and all the related questions about how I’m feeling, whether I’m tired and what that feels like, how often I go to hospital, what’s happening medically, when my hair will grow back, what I’ve done for the past few days etc. Ideally come and witter away at me about your own life. I know it’s normally polite to make things a bit more two-way, but honestly you can bin that rule for now. As another blogger has pointed out, the bar for entertainment is pretty low: you only have to be more interesting than (in my case) Homes Under the Hammer…! On a good day let’s combine it with a walk around the park, as I’m keen to get more active little by little. Short notice is also good: other than hospital appointments, I probably won’t plan things much more than a week at a time, but take it little by little.

Finally, thanks so much to everyone who wrote and texted and emailed, sent cards or magazines or anything else: every single contact really helped (and helps) to cheer me up, however big or small. I’m sorry that the aforementioned lack of ‘oomph’ means I can’t always acknowledge that directly, but hopefully a blanket blog ‘thank you’ goes a little way to making up for that. And as I haven’t updated you of my location, rest assured that things sent to Tooting and Beaconsfield do still wing their way to me!

Yours, (im)patiently recuperating,

H x