SCT +100 Days
Sorry about the long period of radio silence. I have been touched by the number of messages I’ve received asking about my health and have decided it’s time for a full update.
It’s been a tough road but generally it’s good news. I completed 6 cycles of Chemotherapy in July without too much drama and then had a Stem Cell Transplant (SCT) in August. This is all pretty much in line with standard Multiple-Myeloma treatment in ‘non-Covid’ times so it’s good that my treatment has been relatively unaffected.
The SCT is an amazing procedure, please forgive the indulgence but I’m guessing if you’re reading this you might be interested to know more about it.
What exactly is an SCT?
They basically take out (Harvest) some stem cells (stem cells are a specific type of cell in the blood), clean them up to remove as much cancer as they can and stick them back in. Easy Peasy!
After the ‘Harvest,’ high dose chemotherapy is used to kill off all the remaining stem cells to clear the playing field for the cleaned up guys to return. This is the hard part. The procedure is done through drips and injections so you don’t get any decent scars but it is very arduous. You feel very poorly and are completely vulnerable to infection, everybody gets at least one! (Stem Cells are a key component in the bloods immune system so you basically have zero blood immune system for a few days.) Most people are in hospital for 2-3 weeks. I did well and was out in 2 which was a massive relief as I had the misfortune to do the worst bit during the hottest week since 1961 in an isolation room (Cell!) with faulty air conditioning.
I can’t really begin to explain how arduous the process was. I suspect it’s a bit like childbirth in that unless you’ve experienced it you can’t know what it’s like. The thing that struck me hardest was the absolute lack of pleasure. For about a week nothing felt good, even having a shower, which usually feels at least a little bit nice was an absolute chore. And then, on top of that you have the stress of worrying about the inevitable infection. When will it come? How serious will it be? In my case it came during a lunchtime so after about 20 minutes of lying in bed after having pressed the call button feeling my temperature creeping up and developing increasingly uncontrollable Rigors (shivering due to infection) I managed to crawl out of my cell and get the attention of a young registrar who was walking past. She simultaneously gave birth to a kitten and pulled the ‘Cardiac Call Alert’ which meant every doctor and nurse in the building sprinted to my room ( I think a couple actually ran past and beat me back!) and then an Italian possibly Spanish Basil Faultyesque doctor with a distinct ‘Manyana’ attitude strolled in shouting ‘CALM DOWN…. it’s just an infection. Will everybody please calm down’ I think he might have even said ‘Will everybody please calm the f*** down!!’ But, anyway, not long later and following a large dose of some rather good drugs I was feeling more normal. In fact I actually felt strangely reassured by the episode, I think the fact I felt back to normal so quickly and it gave the nurses something to chuckle about for the next 2 or 3 days helped.
I’d be lying if I said the process hadn’t left me with mental scars if not physical ones but fortunately nothing I can’t live with and hopefully some stuff that might make me tougher in the future. Certainly, I’m thankful for having had the procedure as it has almost certainly extended my life and like all good scars there are some stories to tell…. Like the affect the whole thing has had on my relationship with iced lollies! Please don’t eat them near me or ask me to explain too much… just writing these few words about them actually makes me feel sick.
Anyway, this was all done in early August and I’ve been home ever since except for a couple of hospital visits and a spur of the moment blast over to Skegness on a windy rainy day for a bag of chips. (The best chips of my life!!)
The situation Now
Currently, I’m spending my days pottering around the house. Currently my only symptoms are fatigue and some peripheral neuropathy (My feet are a bit sore due the chemo drugs which unfortunately is likely to be permanent) but nothing I can’t live with. On a daily basis I’m much stronger and on good days I might say almost normal, but some might disagree!
My cancer levels following the SCT are unfortunately not zero but they are low and we have every reason to hope they are stable. The game now is regular blood tests to watch and wait. Someday the cancer levels will rise again but we don’t know if that will be 6 months or 8 years from now and in the meantime I am on a minimal drugs regime. Obviously we’re hoping for the later and at that stage I’ll start more intensive treatment, but there’s no sense asking what that might be as the expectation is that technology will have moved on so it might be something new and fantastic. Let’s keep fingers crossed!
So with some trepidation I am starting to think that some normality might be on the horizon. Petra is back at work having finished maternity leave a few weeks ago. Lucy has started school which she loves and Bill is terrorising the staff at the local nursery. I am pottering around the house, I’ve learnt to cook and my DIY skills are coming on massively.
I love my work and I do miss it terribly. I am beginning to think about what my return to work might look like but it is too early to make any definite plans. That said it is clear that when I do go back I will be doing so with a focus on the bit I love which is helping patients, particularly patients with chronic pain or complex presentations who have not been able to get what they need elsewhere. This means I’m unlikely to be in my own clinic, somebody else can worry about the rent bill from now on! Please ‘Like’ and watch this page if you want future updates.
A bit of reflection
Obviously it’s been a tough year but I have a lot to be grateful for. First and foremost: my wife and my family. Petra has been amazing. To deal with the stress of having a poorly husband on top of sleepless nights with a new-born (Bill was born the day after I was diagnosed last November) and keeping a ‘wanna be busy’ 4 year old entertained is amazing and worthy of some sort of medal. But then to do all that within the isolating restrictions of Covid 19 is just another level. Petra you are amazing, there is no doubt, I am a seriously lucky guy to have you. Also, to be blunt there are plenty of people worse off than me so some ‘suck it up and get on with it,’ is also appropriate. Obviously there have been hard days and tears but those have been remarkably few and far between. I don’t think there has been one day where we haven’t all had at least one smile.
And there’s my children, Lucy and Bill. I feel blessed to celebrate the self-confirming bias of knowing my children are the most beautiful beasts in the world. I congratulate myself every day for the good fortune of knowing them. I definitely chose the love and smiles they bring to my life, with all it’s associated pain, over emptiness of never knowing them at all. It makes everything worthwhile.
Finally, I want to say a massive thank you to all those people who have been in touch to wish me and us well. I have been slow responding to many messages but I’m sure you appreciate, that whilst on limited energy resources, my focus has been soaking up the wonderful smiles and giggles that have been part of my life for the last year.
Thank you and love to you and everyone,
Please stay safe