On 16 April, I was eleven months post-transplant. That’s almost a year! And what a celebration I’m going to have for my one-year anniversary, on 16 May! But for now, I’m quite content with quietly appreciating how well things are going, as is my consultant, whom I saw in clinic on Thursday that week. More on both these topics later.
After a six-week break, it all felt strangely alien, less comforting, less like ‘the community centre’ than usual. I saw a friend and one or two familiar faces, but it felt more like the kind of occasional hospital appointment that ‘normal’ people have from time to time, that you attend, see the clinician and leave promptly, to get on with your day – like a place you don’t belong and don’t wish to belong, unless you’re yearning to be a doctor, nurse or medical receptionist.
Going to regular clinic appointments has been a huge part of my life for over two years. As they are now decreasing in frequency, it feels strange, like I have to let go of something that however unwanted and unpleasant, was nonetheless a safe place, where I am amongst peers, people who understand, with whom I do not need to explain, a place where I belong and where very little is expected of me because I’m ill.
As another blogger, Helen writes:
“When you have cancer your life is changed for ever. At times it seems to spin out of your control. There are big question marks against all the things you thought were certain.
And yet there is one thing you can reply on. The regularity of your treatment. The chemo sessions and all the other associated appointments are comforting. Having a medical schedule gives your life shape and it gives you back some control.“
Three weeks ago, I took my first solo long-distance drive to West Wales (4-5 hours) since the transplant. I had been feeling quite anxious about it, as up till now, when I’ve travelled that far, a friend has shared the driving with me.
As I drove, with my choice of music playing loud enough to sing along, the roads clear, the winding pass to Aberystwyth absolutely gob-smackingly glorious, with the sun shining, the sunroof open, sunglasses on – yes, it was THAT sunny day! – I began to notice that I was okay.
I was doing something quite normal, without needing help or rest (or steroids!) .
Of course I was tired and needed a couple of Paracetamol once I arrived, but I did it… on my own! And who wouldn’t be tired and aching after driving 4-5 hours?
Great celebratory driving music!
While I was driving, I had a revelation – a minor epiphany. I realised that, for over two years, I have had an identity as an ill person. And I have been ill, so that’s not only hardly surprising, but it’s totally allowed. With that unbidden identity came some advantages, advantages that I am loath to give up. But now that I am beginning to feel well… perhaps it’s time to ditch the old identity? Perhaps it’s time to quit thinking of myself as an ill person? Perhaps it’s time to give up the sneaky advantages? To see myself differently? To take up life’s challenges with a slightly shifted perspective? So I decided to no longer think of myself as an ill person. It seemed like a radical, and slightly scary idea.
Whereas following the autologous transplant, I noticed improvements in my stamina, morale and general recovery on a week-by-week basis, over a fairly short period of time (around 3 months), recuperating from the allogeneic transplant has been much slower and longer, not to mention a bumpier and more anxious ride. At times it has felt like a permanent state, something that would never end – that I would always be in recovery.
To some degree I’d grown to accept it and I’d adapted to it. But although acceptance allows me to be okay with my current reality, adapting to it can be a way to retreat from the world and no longer reach for the things I want, maybe no longer even allow myself to want. Well, if you can’t have or do something, it’s better not to want it than to feel frustrated and disappointed.
So giving up my identity, my status, as an ill person feels like quite a daunting, psychological giant step. But, at this point, a realistic one… Although the recuperation process is not completely over yet, I definitely notice improvements, maybe not week-by-week, but certainly month-by-month. I look back at what I was able to do or how much rest I needed after doing things and I see that these days the doing is more and the resting is less.
Finally and slowly, I’m learning to trust the process, to trust that my energy is improving and will improve enough to have a good life, that my appetite for life is growing stronger and will continue to grow, that I am in remission and that there is a good chance of a long remission. I may have turned some invisible corner…
It’s a strange state to be in. When someone asks me how I am, or, something that happens ever more frequently these days, when someone tells me how well I look, I still find myself wanting to add on a protective get-out clause, a leftover from being ‘an ill person’, like “I’m ok… BUT I do still get very tired.” I am re-training myself to respond with a beaming smile and a hearty “Yes, I’m doing really well.”
No, I’m not exactly the same as I was, I’m not completely well as I knew myself three years ago. I do still suffer with fatigue, I do need to manage my energy and I can’t easily do certain chores without getting back pain, but I have friends with all sorts of pains and conditions that they manage, take tablets for and live with. They don’t constantly tell me exactly how their condition is unless it has flared up or they’ve had a crisis. And more importantly, they get on with life, within the restrictions of their health conditions. So what’s the difference?
Thinking of myself as a well person, or at least not an ill person makes a real difference to how I face life and how I spend my time. Successfully driving to Wales felt like a real challenge and was a gratifying eye-opener. Once I arrived, I applied my new-found sense of ability (as opposed to disability) to pull my weight and play a more active part in activities. Not using my illness, or fear as a reason not to do things. And not needing quite so much looking after, although that’s always nice from time to time… even if you’re not ill.
So while I didn’t do much washing up – that really hurts my back – I did manage to sweep the kitchen floor at the hostel. I wasn’t up to the disorienting hubbub of the large group, but I happily connected with friends in ones and twos. I didn’t go for any long walks or cycle rides, like some of my very active friends, but I did walk up the mount at Mwnt with some of them. Admittedly we took the path with a gentle incline. Enjoying the view from the top and seeing a porpoise was wonderful.
I wonder if the reason I felt so odd at clinic last week was due to my internal identity shift… Maybe I don’t belong there right now… at least not in the same way as I have done for the last two years…?
It’s only a vague sense just now and I feel reluctant to put it into words in public, in case I’m expected to run out into the world, take up full-time work, take up full responsibilities, give up the welfare benefits I receive, give up my blue badge, not to mention other support that I get because I’m ill. I also have a vague unease about tempting fate. But it’s a beginning and the very fact that I am able to willingly embrace no longer being an ill person, is probably a reliable sign that it may no longer be the case.