EXPLANATION: I wrote this blog back in November after 6 months of chemo. I was feeling pretty disheartened and never got round to publishing it. It took a few weeks to get my mojo back. Unfortunately the cancer also got its mojo back and an early scan in December showed progression. Which led to the drastic action detailed next in blog 10. I felt I needed to publish this one first as it was a missing chapter…
I’ve not had the energy or headspace to write much about what I’ve been doing to stay alive in the last year. I have spent about £17,000 of your money. And I promise I will eventually get round to telling you what I’m doing with it and my plans for the future. First though let me update you…
For the last 6 months I’ve been getting hammered by chemo every 2 weeks.
Its been difficult. There is a kaleidoscope of unpleasant side effects and just as I get my head back above water I get the next hit. Relentless. People tell me how well I am looking. Outwardly. Apologies for the full disclosure but my poor sore bum hole as the only visible representative of my bowels tells a different story. I am now very good friends with the anusol suppository.
But however unpleasant the chemo is it stops the cancer growing. Its even reduced it slightly. The pain and discomfort from the dozen or so tumours within my pelvis has gone. I have almost forgotten how I was popping painkillers and sitting on hot water bottles earlier in the year.
At the end of October my oncologist told me out of the blue that this was to be my last chemo this year.
My body needs a break she said. And I’ve done very well to get to where I am today, 2.5 years post diagnosis….
I wish she had given me some more notice because I feel very much unprepared for a break.
I’m now one week out of the chemo cycle and as much as I look forward to recovering I know that the cancer will be recovering too and it’s just a matter of time before it makes its presence felt again.
I’m trying not to be terrified of every ache and pain and sensation. And I’m trying to use this time wisely and plan my next move.
But I’m finding myself consumed by anxiety. Now the safety blanket of chemo has been whipped away I am feeling very mortal again. And my fear is sucking the motivation out of me. I’ve also got a great tiredness that is bequeathed to me from the chemo. To be honest I’d like to just stay in bed and hibernate.
But I don’t want to waste my precious time feeling sorry for myself and living in fear.
I also really want to see season 4 of stranger things. I’m finding strong parallels between cancer and the baddy, called the demogorgon. This is how the demogorgon is described on wiki:
‘His whip-like tail has the ability to drain the life energy right out of a living foe. His tentacles cause living creatures to rot away, as if by some sort of rapid leprosy.’
Uncanny. Plus it just keeps coming back no matter what is thrown at it.
I get my next CT scan in January and that will determine if I’m to go back onto chemo. In the meantime I’m trying to get a biopsy of the cancer to find out its most recent genetics.
I’m trying to figure out how best to get that sample genetically sequenced and/or send it to China where I am hoping to pursue an experimental therapy that makes a vaccine out of your own blood.
I’m also looking at a trial in America that amazingly hasn’t yet knocked me back even though I’ve told them about my second cancer.
And there is an interesting trial in Australia for colorectal cancer that hasn’t got back to me yet, probably because of my second cancer. I’m finding it really hard to chase everything up and really have to pull my finger out…
In the meantime I’m taking a massive arsenal of nutraceuticals, vitamins and drugs which all apparently have anti-cancerous benefits.
I’d like to believe that this protocol will keep the demogorgon behind me for a bit longer.
More on this in a future blog. Meanwhile I’m off to tend to my recovering bottom…
Claire you are terrific. I bow to your courage and endurance. Lots and lots of love and hugs to you
Xxxxxxxxx
Thanks for this Claire. Strangely enough I had said to Eamonn too, months ago, after series 2, that the horrible creature in stranger things was like cancer. We are obviously both geniuses of the metaphor. I love you xx
Hello Claire, I was reading your blog and noticed that you may be looking to get a biopsy sequenced. I happened to have a chat with a friend about this who works at the Glasgow precision sequencing consortium based at the Beatson campus. They have two websites with contact details on them. You may be able to have a chat with someone as to what I formation you need from the sequencing etc. The web pages are https://precisionsequencing.co.uk/
https://www.gla.ac.uk/research/beacons/precisionmedicine/stratifiedapproach/
https://www.polyomics.gla.ac.uk/contact.html
I hope this info is useful. Good luck with all your treatment
Wow thanks Helen, I will look into this xxx