Had a break, made some decisions.

Hi Everyone,

I’m sure by now you’re aware of how this first part works. I apologise for not blogging in a while and then I lead on to the craic.

So Kerry and I had a small break. She had her powerlifting meet at world championships. It didn’t go to plan sadly as she wasn’t able to be represented by her coach for a couple of reasons which meant Kerry had to do things like wrapping her knees all by herself. This consumes a lot of energy and sadly left her with next to nothing in the tank to go out and do bench press. She’d just set a new PB in her squad but didn’t have the time to send someone to lower her lift start on bench and by then it was too late and sadly caused her to crash out of the world championships.

Some very sad lessons learnt there but they won’t be repeated. She’ll come back much stronger next time and won’t repeat the same mistakes.

We had a week in Santorini, Greece. A very much needed holiday for Kerry. She’s been training for a solid year but what with the purchase of our house, our new car. It’s all been back burnered for so long she really needed the break. I’m lucky enough to have had a holiday this year already before I started treatment but I even asked for a 2 week pause on treatment so that I could actually enjoy the holiday myself.

We’re both very rested and enjoyed Santorini very much. It’s a very…’couples’ destination. Not really somewhere I’d take a family. We drank lots, we ate more and we soaked up the sun in our hot tub and then came back to a very mild UK on Monday of this week.

I’ve made the decision to carry on with treatment although I will be having treatment differently. This is to see if I can stand it a little more.
The new plan is to have treatment over a 3 week cycle, rather than the 2 week I currently did. This is in the long run 50% less chemotherapy and I will be adding in things like cannabis resin and turkey tail mushrooms to see if this can help me both tolerate the therapy and bolster it too.
I am going to try water-fasting right before chemotherapy and intermittent fasting on the other days. 16 hours fasting, 8 hours in the day I am able to eat.
There’s enough evidence out there to show some results so lets try this eh?

I’m going to see if I can make it up to two or three scans time and reassess it then. I have another scan in about a fortnight so, zero point in reassessing then. It’s too soon to see if it will make a difference.

I know a lot of you have been asking how I’ve been doing and the simple answer is….shite really.

I honestly feel like I’ve been battering my body for the last year, well…3 years really and to very little avail. I know that we’ve beaten the main tumour site but the problems come in these damn metastatic tumours.
They’re just so resistant to treatment. I go through all of this chemotherapy to hear the same results each time.

“Up to 10% growth” blah blah blah

Yes, that’s exactly what I heard from Dr Pedley when I was under his care privately. I’ve been with the Bobby Robson team for a long time now and I’m not really getting any results.
Under their guidelines, as long as the disease doesn’t progress more than 20% in a scan cycle then that’s classed as no progression of disease and they ‘green light’ me for another 3 months of treatment.

I did pull the short straw when I was given the highest dosage, on the highest frequency. My original thinking was that this was good. More chance of killing off the cancers, but the more I’ve been on the protocol. The more I understand that it’s just breaking me. We’ve had to turn down the dosage once. Now we’re turning down the frequency just so that I can tolerate it.

Begs the question though…

Would it still be 10% increases were I not to be on any treatment whatsoever?

When we came back from Greece, I met with the doctors and asked if I had to be on the G-CSF needles, I have a whole extra week of recovery now. I can recover by myself at home without fear of having low white and red blood cells.
I asked if I had to have the bloody steroids they pump me full of. The nurses took away the questions and they said, “You are going to have to speak to the doctors” but the issue is. All they ever do is give me these pre-recorded answered and the answer is always fucking… No!

So I wait. I am going to see Dr Greystoke again in a couple of weeks. I will hear from him what he says. I honestly feel like packing it all in.

Under Dr Pedley, at least I felt like I had a decision in my treatment. Under the Bobby Robson Unit’s care, I’m just a number, and if I don’t like it, I can come off the protocol.

Great… Thanks for that.

Anyways, that’s where I am at for now. Thought I’d let you all know.


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