Well hello everyone, about time I updated what's happening with me; been a while since I posted regularly. I've always kept eyes on here, I get email notifications of all activity, but this corner of the Macmillan Community runs absolutely brlliantly, thanks to Dani and Hazel ably supported by Chris and many others. I'm in regular contact with Dani also...very proud to call her a friend.
Anyway, without going into detail (we'd be here all day!), I had my first cancer eleven years ago, treated with neck dissection and seven weeks CRT, all clear five years later.
Then in 2020 (peak Covid) I was diagnosed again, salvage laryngectomy this time, a month in hospital and voicebox removed, so I've been without a voice since then....but content with life (after processing being widowed at sixty...another story), I always find the positives in any situation.
And now? Well here we go again. Probably two years ago I started getting a bit of throat pain, it came and went but eventually it came and stayed. I've had so many people search for the cause with all sorts of scans and studies, general anasthetic searches, all to no avail....still the pain came until I was on morphine and fentanyl patches...then last month my "lead" surgeon had a look under general..
When I went to get the outcome of the procedure, he told me before I even had the chance to sit down, "It's cancer" he said, incurable and terminal this time. But then he offered the possibility of immunotherapy to keep the terminal bit at arm's length for a while; subject to blood markers, which my blood aced!
So I've been funded (it's expensive stuff!) for two years of Pembrolizumab, which I know has been discussed on here a few times recently, and I start on Wednesday. Still terminally ill, which is quite a heavy badge to wear on occasion, but still looking for the good, and believing this adventure (life) is far from over.
People want to know "how long do they reckon?" but I have no idea because I've not asked and never will....I'll keep going until I stop....simple.
Anyone with experience of Pembro-thingy thoughts woul be much appreciated
Hope everyone is coping with whatever challenges they may have xx
Anyone with experience of Pembro-thingy thoughts woul be much appreciated
Hi Mike.
I’ll tag Crofterlad
I’m sure he won’t mind giving you a hand with the Pembro.
You know me. I’ll give you all the virtual hugs in the world.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
That's a really encouraging read Ans, link to your blog would be much appreciated.
Perhaps will stop my kids scouring my guitar collection armed with a calculator
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Early start today, have "new patient assessment" in oncology, which feels a bit strange, being a new patient after eleven years
Know what they mean though. It's in Cherrybrook, which is the chemo ward.....relatively new build and seriously luxurious
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
