Hi Everyone,
It’s been a couple of months since my last update, I’d just had my stoma installed and I was waiting to receive radiotherapy and starting the new drug ‘Regorafenib’
Well, since my last update, I’ve completed the radiotherapy but I haven’t started the Regorafenib protocol yet sadly.
I haven’t been well enough to do so.
I completed the final session of radiotherapy was on the 6th April, if I am honest, it really wasn’t too hard going compared to the original 28 sessions I had back in 2020. This radiotherapy was more targeted compared with 2020’s.
However, I completed it and a win is a win. I rang the bell and received my round of applause from the other patients and staff and I walked out of the hospital and went home for some well earnt rest.
I was forewarned by Dr Hashme that my chances of side effects/after effects were significantly higher than last time. I just don’t think I was prepared for this amount of pain.
Throughout my cancer journey I’ve been prescribed this and that for pain and I know what does and what does not work for me.
I think I’ve pretty much nailed the prescription for the pain killers that I find effective.
I know I’ve discussed this many times before that I don’t like being reliant on pain medication all of the time.
I feel you reduce the efficiency of the drugs when they’re used regularly.
I don’t like to feel so spaced out, I don’t like the way my sleep pattern is ruined by the drugs but I also know that there’s no point in suffering in silence so I will take the pills when I need them.
It was roughly a week or two after the final radiotherapy session (late April) when I realised I was in a bad place and I started taking the pain medication regularly.
The pain is located in my back end, which thanks to the stoma I don’t use anymore. I still get the feeling I need to go from the tumour in my bowel pressing on the nerves that provide that feeling. I still have to pass anything that misses the stoma and the mucus that everyone has that lubricates the poo down your bowel. I still need to clean the area and it’s very aggravated.
That and the tumour being/eating part of that bit of the bowel that tell you, “you have to go”.
This was the reason that Dr Hashme organised the radiotherapy and targeted that particular area to provide relief.
The more time went on the more I realised I could no longer sit down without pain, even with one of my coccyx cushions.
Then I couldn’t sit on the couch unless I was lying down on it or lying on my side.
Then it got to the point where I wasn’t leaving bed. Not because I didn’t want to, because I couldn’t. Laying on my side was the only relief from the pain.
I stopped eating as I’d lost all appetite.
I was pretty much sleeping/dozing during the day and I was up all night watching crap on TV or YouTube.
Something had to be done and I had Kerry and my family worried sick and I reached out to Dr Pedley for help. Though I had contacted him a week prior I was told he was on annual leave. I found out a week or so later, he wasn’t on holiday. He’d had his gallbladder removed.
He’s a trooper that man. He even replies to my cries for help when he’s not well himself.
When I had my call with Dr Pedley, I just broke down. I could barely explain myself through the tears but he understood right away.
I’d had a CT Scan about a week after my final radiotherapy session and Ian explained to me on the phonecall that there was evidence of progression in all known areas (lung, liver and bowel) and though expected, nothing new to report. He wanted to immediately contact Dr Hashme and Peter Coyne (who’d done my stoma) and see what could be done to help me. They’d want more comprehensive scans to be completed and Dr Pedley was suggesting to Mr Coyne that I may benefit from some ‘further investigation under anaesthesia’
I left him with that, and since then I’ve had an update call with Dr Hashme on Tuesday of this week. He apologised for all the discomfort I’ve had and he’d like to see the scan results but again, thinks I may benefit from further radiotherapy targeting a specific area in the future. He reaffirmed that radiotherapy effects can take months etc He’s going to check in with me in a week or two.
I got a call yesterday afternoon asking if I could attend a cancellation appointment today at Newcastle’s RVI for an MRI scan of the pelvis. I snapped that up and it went off without a hitch today
Next I guess I am waiting to hear back from Mr Coyne about any further investigation. The pain may be something that he can help with. However, I wait to find out.
I’ve been steadily losing weight over the last 6-9 months. I attribute this to no longer having to take steroids.
This is something I have repeatedly request not to be placed on, but it’d always fall on deaf ears.
“Well, it’s part of the protocol to have the steroid”, “You can’t have this chemo unless you’re on this steroid”
My weightloss had somewhat ‘accelerated’ in the last few months. Mostly down to me not eating really.
I am still eating but I don’t wish for much. My portions have dramatically decreased and for the better I should think.
I do live a very sedentary life, so even putting my vitals into one of those ‘Calculate your ideal RDA of calories’ calculators. It still wants me to have 2000 calories a day. Surely, can’t be right.
I weigh today 89.4 kgs. October 2022 I was 114 kgs
I feel so much better not carrying the excess weight, none of my clothes fit (SMH) but nothing a quick shopping trip couldn’t fix. Actually, saying that. My USUAL clothes don’t fit. All of the clothes I refused to throw out, now fit me. They’re just a few seasons out of style.
Not that I’ve had style in the last 10 and more years
So, in recap.
We’re waiting for the doctors and surgeons to digest today’s MRI scan and come back to me with a plan.
Physically, I’m on the mend ever so slowly. I’m not bedbound anymore but I certainly can’t walk great distances. though today I am sitting at my computer blogging. Something I didn’t think in the last few months I would be doing. Let’s see what they can do to improve my day to day. Perhaps there’s something going on I don’t know about that could help me. I await their say.
Psychologically, well…I’m not doing very well at all. This is something Dr Pedley and I discussed on our update call earlier in the week. I’ve always turned down any counselling/therapy. However, I think I’ve recognised that I’m not dealing with it as well as I think I am. Kerry and I have discussed this too. We may just go private on this one. Just to beat the queues etc
I think that Dr Pedley recognised I am at the very end of my tether and wants me seek help too.
That’s going to do for today. I hope you’re all well and as always. Reach out if you want to chat.
-C
An honest blog about a guy's journey through cancer and chemotherapy 