14/01/2022 – Bobby Robson Centre for cancer care – Weight and Health – COVID-19

Hi Everyone,

It’s January which marks my third year into this cancer ‘journey’ and if you’re new. We know that my two previous chemotherapy treatments have *not* really produced the results we had wanted. That’s both Folfuri and Folfox, 3 months of the former and 6 months of the latter.

Well, it’s not great news. It’s like we had come to the end of the road of the effective treatment after two years (They were lockdown years so they actually count as 2 each) but that’s by the by.
I know that Dr Pedley really only had palliative pill-form chemo left for me to try and I wasn’t really interested in taking a med that really only has the potential to extend my life by a few weeks or a month at most. I need to beat this thing.

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Today I was asked to come into the Bobby Robson centre for cancer care @ The Freeman hospital in Newcastle. I met a young doctor on the team who discussed with me what I could expect from the trials and which trial they had in mind for me.
We discussed my previous treatments and what the plans would be for me. How long the trials would run, how often I would need to attend and how many scans I would need. It could even mean you’re in hospital a couple times a week. I would be rescanned via CT about every 6 weeks which would be a 50% increase to what I would be used to.
They had a drug in mind for me, it would be similar to Folfox but administered orally rather than by infusion. However, due to the neuropathy I am already experiencing. The doctors needed to confer as to whether I would be okay on the drug and they came back and said that the planned drug would *not* be suitable for me.

ARSE!

I was then introduced to Dr Greystone who informed me that there were actually another couple of other possibilities I could go on. (one was) A similar drug to 5FU which was the original chemotherapy I was on. I have discussed with them if I would be able to use the cannabis resin I had originally used and they said they would talk to the pharma-company issuing it and find out if I could take them together. This helped with nausea, pain and I was even able to eat on the resin.
They are going to have to come back to me with that.
So all in all, I felt good about the meeting. I did go to pieces in the meeting discussing timescales and remaining lifespan and recapping my journey so far, but I did have ‘my stoic’ with me and Kerry took control whilst I regained my composure. I think I am going to need to wait to hear from the Bobby Robson centre before I speak with Dr Pedley and make any more decisions but I still feel good about it. Sounds like progress.

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You may know that Kerry and I both caught COVID-19 omicron variant. Well that was fun!
Basically we were housebound from about 27th right through till a week into January. It wasn’t too bad, a very bad cold and a chesty cough that still isn’t completely gone now. Nowt to complain about really, we stayed in, played games and enjoyed the time together. Yay!!! Christmaaaaaas

but…

What we were left with was nausea. God awful nausea. If I’m honest, Kerry still has it a little, me not so much. I still can’t do 2 square meals in a day, but I am getting calories in me.
Kerry has a lot of competitions coming up this year. She has strongwoman and powerlifting comp/meets and we had decided to make some changes so I can help. (see, I’m helping)

So this nausea was great for helping but it’s not sustainable to be losing weight this quickly. I was gunning for 500g a week but I’ll take what I can get. At this time, I have lost 4 cm from the waist and a total of 4.1 kg since 01/01/22 Oh I should also mention that I have also discussed with the Dr’s at the Bobby Robson centre. I won’t be on the steroids I have been previously so this shouldn’t be an issue in the future. I know I needed to be on them. However, they’re an absolute shitshow and can make you pile weight on EVEN with a calorie controlled diet.

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Anyways, this was a lot to process all at once for me. I think i’m gonna go away and have a think about it. I can’t do anything till I hear back from them really. Happy New year from Me, Kerry and Rupert.