A strange thing happened this weekend.
I decided that I was going to write a blog about the post-treatment recovery process, and how the ‘good days’ that people see are often balanced out by the ‘less good days’ that can more easily be hidden.
But before I hit the keyboard I found that my online buddy and fellow warrior Fi Munro had rattled out an excellent blog about her own, understandable frustrations of looking ‘better’ whilst certainly not always feeling it. Great minds etc.
There’s a lot of what Fi writes that rings true with me, but there’s also a lot that’s different – after all we may be civil servants with cancer but there’s a world of difference in what we’ve been through and what we continue to face. Cancer, with its dozens of mutations, is a bastard like that.
But the overall gist if Fi’s column is very much in line with the blog I was drafting in my head.
That whilst the treatment is to all intents and purposes over (I’m still on some longer term drugs), the recovery is a long and tiring process – physically and mentally – and can’t be judged by ‘looks’ alone.
That’s been a particular challenge for me, given that I was bald going into treatment and that my weight hasn’t visibly fluctuated too much during the last eight months, apart from my three weeks in hospital for my Stem Cell transplant where few people saw me.
I really don’t look all that different – at least I don’t think I do. Certainly not compared to many of the other brave warriors I’ve met in and out of hospital over the past nine months.
So I don’t actually mind the “you’re looking well” comments (I know I’d do the same myself, it’s a kind of natural reaction), but I just ask people to understand that looks are skin deep and that there’s a lot – like the graceful swan – going on under the surface.
Like Fi says in her blog, we’ve brought a lot of this upon ourselves. Posting happy social media pics of a relatively active lifestyle. Cracking online jokes. Being positive in the face of continued adversity.
But these ‘highs’ are almost always followed by periods that are ‘less high’ (I’m trying to avoid saying ‘lows’…).
For me, it’s fatigue and muscle ache, often coupled with headaches, and issues like sore throats and being thirsty a lot more than usual.
I’m still very much in the phase of needing either a long-ish lie, or an afternoon nap – sometimes both! It’s like having a baby in the house again. I need a lie down after having a shower or bath. The stairs can still leave me out of puff.
And my muscles – jeez they ache. Even short walks leave my calves throbbing. My hamstrings and groin muscles are as tight as piano strings. My neck often feels like it’s been supporting a head of Easter Island statue proportions. And my jaw thinks I’ve been trying for an Olympic boxing medal.
If I sit or lie down for any period of time, I have to stand up in stages. It’s pitiful (as are the groans, oohs and aahs…).
I still need to put a lot of focus on pacing myself. Planning my day and my week. Putting quiet days after busier ones. Building in some ‘me time’.
I find it a bit hard to accept that the recovery process can take so long. I’m told that I won’t get back to any semblance of normality for at least six months after treatment (i.e. Nov/Dec). But no-one can define ‘normality’ for me.
Immediately before diagnosis I was as fit as I’d been for years (apart from the broken collarbone…). I was putting in lots of hard cycling miles. I’d lost the best part of three stones in less than a year.
I’m pretty sure I won’t be back to that level. I expect I’ll just be back to ‘base camp’ – where I was before I started more intensive exercise and dieting. Something to look forward to!
It’s also a reminder of just how brutal a cancer treatment regime can be.
Apart from some general tiredness, a small lymph gland lump and some persistent, bloody diarrhoea (sorry…), I had no idea that I was suffering from cancer at the time of diagnosis. I wasn’t in a ‘bad way’.
Since then it’s been the treatment, not the cancer itself, that has dragged me down so much. But you can’t deny that it’s been worth it!
So in many ways, the recovery process can be just as difficult to deal with as the treatment.
During the treatment I was reasonably clear on what would be happening and when; what would be my ‘good weeks’ and what would be my ‘bad’ ones.
It was also easier for other people to appreciate the consequences of what I was going through. I could talk about the cocktails of drugs; the hospital appointments; the side-effects; the various blood count numbers.
Now? It’s easy to sound like I’m just on a prolonged period of annual leave, or have entered semi-retirement. Long lies; walks with the dog; family days out; the odd beer or two. Like I say, accentuating the good stuff whilst masking the days of pain, tiredness, grumpiness (yes, I know you are surprised!), lethargy.
But it really is all just all one part of a very big process that will hopefully see me remain in remission for as long as possible and get back to (and beyond?) normal into 2017.
Right, time for a wee lie down and muscle rub…