February 2016

February, boy has it been a turbulent one, on the health front.

For the past couple of bleary months, I’d been expecting my treatment plan to fail. I was looking at a last chance saloon with Vedolizumab as soon as I started it way back in October, but to have it official fail on February 5th was abit of a shock. It meant I had to kick my butt into gear and get something else sorted. Which had to be something I had yet to try, something outside the realms of conventional medical therapy. I should have known it would mean experimental drugs or even trials. And of course, surgery.

Luckily, my consultant was organised enough to find me a second opinion on medical treatment and even get me a surgical consult in January; so I could get all the information I could and make an informed choice in a timely manner. But even at these appointments, I wasn’t given all the information I *needed* and I still have to go back to both – it’s like being drip fed when all I wanted was the grand, dramatic rush of it all so I could get sorted, so I could get better. That’s understandable right?

So I’ve been to another hospital to see a specialist gastroenterologist and I’ve seen a surgeon at my own hospital and it all came down to needing some more tests. This is a scope so we know the details of how much rectal involvement I have with my disease as it stands; determining if surgery is the best path to take at this moment in time. That is happening in a weeks’ time. That feels like it’s been in the “to do” pile for so much longer than 4 weeks. I’ve got that to look forward to. And I really am, because as much as it is a pain in the arse – metaphorical and physically – I want to get moving forward with things.

Last week I decided on having surgery, regardless of the outcome of this scope. I need to get back to a normal life and I am willing to ‘compromise’ and have a major abdominal surgery to achieve this. By no way is this an easy decision to make nor was it made lightly; it has taken a lot of sleepless nights, and I’m sure there are many more nights like that yet to come. The big unknown is the need for an end ileostomy. That is the big life changing part; surgery will be temporary pain and the scars will fade in time but a permanent bag will not go away. I will have to make it my friend and accept it. And I know how much it took to accept my disease in the early stages, let alone all the changes that have happened since being diagnosed almost 5 years ago.

In the mist of all these positive decisions, one big thing ‘helped’ me formulate and focus my thoughts; I lost my job.

I was gutted at the time. I was also angry, shocked, confused and let down by it all. But it does seem like a blessing in disguise. I just hope I have made the right decisions in the wake of it. Being unemployed and without money and some sort of focus in my daily life – except writing on this platform – is hard. It’s knocked me about abit and I know returning to work will be hard but I need to think of the strength I need to gather to get through everything else that is going to happen this year.

I don’t feel brave yet. I know I haven’t even gotten started with this whole adventure of surgery – and yes, that is what I am going to be calling it because I am determined to not become negative about this situation; a big surgery could quite easily get me down and upset and reflective on how crappy my life is or will be – but I do feel I am going to need to dig deep and find some resourcefulness. The same resourcefulness I had when I lived abroad, when I stayed in hospital for weeks on end, when I left home for university, for all those new and scary tests and experiences I had to undertake on my own… it somehow feels like my whole journey has been leading to this. And I need to gather strength and energy.

Maybe just being here and wanting to share my feelings, my story is bravery in itself. Maybe that is strength too; continuing on when it could be so easy to just… give in to feeling bleak. I’m not sure. Its certainly something to think about in the coming months.

 

So what have I got to look forward to?

  • Scope on the 8th March – three days of preparation beforehand, including my Moviprep schedule, then lovely drugs and hopefully some results on what surgery I need. That’ll be a couple of my steps of “Operation: Colon Removal” ticked off!
  • Results from said scope; they will no doubt take biopsies and everything.
  • A mini break with the boyfriend the weekend after.
  • Hopefully returning to work; in what role, I’m unsure of but I hope to be doing something by the time next month ends.
  • Maybe a second surgical consult? But thinking here is that maybe it’ll be April due to Easter falling early and upcoming Junior Doctor strikes.

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