A few people suggested I start a blog after I was diagnosed. Mostly because it's a good way to vent and it means you can look back and see how far you've come and how things have improved. I Agree that writing your thoughts down is an excellent way to vent frustrations without moaning to loved ones, it's also a good way of putting order into your thoughts to help you think clearly when you're head seems to have too much flying around in it all at once!
However, I didn't see the point in a blog as I felt it was a personal thing to do and no one else need be concerned with it. Instead I bought a lovely little leather bound notebook and i've been keeping my notes in there.
Since then, I've realised why a blog is a good idea. Whilst searching for hope on the internet I came across a few blogs of people who have been battling synovial sarcomas. The positive attitude and courage in some of these people when facing what they have to face has inspired me and lifted my spirits so many times now. I always thought my story was a bit too doom and gloom to bring to anyone's attention as most people are looking for success stories. I feel now that with all the twists and turns, my story is worth telling as it might give others hope and strength to stay strong and carry on when the outlook is bleak!
I've just started what I think is the final stage of my treatment, hence the 'better late than never'.. So I shall summarise the whole escapade and see how it pans out.
Tuesday 17 March 2015
And update I wrote and forgot to post a few months ago whilst incarcerated.
Well…
So Its not as clean cut as I first thought. I had a PET scan and it shows some hot spots further up my chest wall and in a lymph node in a rather risky position beside my heart (one I’d imagine Mr Kirk wouldn’t want to touch) This stuff cant be seen on a CT scan yet though, so must be small.
So change of plans and i’m having chemo, Mr Kirk (THEE best cardio thoracic surgeon in the country and possibly WORLD) is keeping quiet until he see’s how the chemo works I think. And its working great from what I can feel. the lump was pretty large, not sure the dimensions by the time i started chemo but the bit that i can feel is at least half the size. So hopefully its working on the other parts too.
The spread is strange though. Its not from my (known) positive margin area, its just the same cancer quite close to where is was before….
Anyway, I had to cancel my trip to Montreal to start chemo and thought i would squeeze in a last minute holiday for Robin before chemo has me by the balls. So we booked three days in Disneyland Paris. Probably not the brightest idea but since my first chemo was fine last time I thought it would be the same again. So a week after chemo (just when my blood counts would start getting low) we went to Disneyland. It was AMAZING (for Robin) he had the time of his life and totally made us proud as parents by just being the coolest wee laid back kid ever. Even when we tried to come home early and had to spend 8 hours in the airport he just breezed through it keeping himself entertained. We left early because i became quite unwell. I couldn't make it out the third day so davy took him on a couple of his favourite rides and then we left.
I had to go straight from the airport to A&E (my cancer hospital doesn't take admissions at the weekend) and i’ve been kept in to get intravenous antibiotics. I feel a bit better but am still going from soaking with sweat to shivering.. not sure which one i prefer. I’ve only been in 18 hours though so i’m sure i’m on the mend. Should be in for a few days. Missing my Gucci cancer hospital.. the local hospital it a bit of a dive and you can tell the staff here aren’t as worried about infection and everything being super sterile (i guess they’re not as used to dealing with neutropenic patients)
So, I shall be spending the foreseeable future lying low and washing my hands as much as possible. Hope I haven’t put my oncologist off giving me chemo as it worked so well.
Over and Out
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