It should come as no surprise to hear that the 4 week break from chemo and trips to the hospital was punctuated by, (go on, have a guess) a stay in the hospital. This time Lady Luck turned her back on me (again) and I picked up a chest infection. There is a curve ball being thrown into the mix at every step of this rather convoluted journey but I’m getting to the stage now where it is no longer a surprise; I’m simply resigned to what feels like a never ending set of challenges to overcome.
On the plus side, I now can’t walk through the corridors of the Countess without someone saying hello; which is all well and good but I’d rather get that reaction in my local boozer. Gives you an insight into where I have been hanging out of late!
Its been 6 months since treatment started which is nuts. Looking for positives, if the stem cell treatment works then we are well over half way through the process now. As I am constantly reminded, you cannot give any credence to other peoples experiences of myeloma because each case is unique; what works for 1 person may not work for another. But getting to a stage where stem cell can be lined up was always a key marker of progress so regardless of how well it may or may not turn out, I look at all we have been through as water now under the bridge which has prepared me for what I hope will be the last leg (for now) of this cycle. Certainly when it rears its ugly head again, at least I will know what is coming and be better prepared to deal with it.
This disease, as I imagine so many others do, takes so much from you. Your time, energy, freedom to do what you want. (sounds like having kids!) Over such a long period of time, it chips away and often you don’t notice how much of a change has taken place until you find yourself reflecting on what has happened at 2 in the morning on a hospital bed.
I look terrible and have adjusted to constantly feeling under the weather.
I’ve lost 1.5 stone since this began having done no exercise in half a year. Hair loss, which shouldn’t be a big deal, is actually quite emasculating. Coupled with the deterioration of physique, these 2 changes alone visually hit home what has happened and remind me every day of where I was and where I am now. At least I know that with a bit of work in 2018, I can do something about these.
And I cannot make decisions for toffee. My brain has clearly been underused for too long and bombarded with drugs because I just don’t have the focus or energy required to make an educated consideration or plan. In my head I want to set out some grand ideas for 2018 but when I try to tie down my ideas, I quickly tire of the choices to be made and lose focus. Not like me at all and again, something I need to turn around if I am to avoid becoming a daytime tv junkie whose sole purpose is to watch soap operas and drink tea.
I’d really like to feel normal again. Not have a cough and cold that hangs around for weeks, not tired and not tied to visits to the hospital every week. I know it will come in time but half a year feeling rough is more than enough thanks.
I was about to wrap this up but literally 10 minutes ago, I was hit with a coughing fit and the next thing I know I’m lying on the floor with a sore head. Seems I passed out and fell off the bed! Timely example of how ridiculous life has become; I’ve never passed out before. Cue nurses running lots of tests etc…
So, next destination on my whistle stop tour of NHS facilities is the Royal in Liverpool for the back op on the 17th. Fingers crossed that goes well and another milestone can be chalked off the list.
I am trying not to wish days away for obvious reasons but I’ll be glad to see the back of 2017.
2018 has to be a better year.