I’m On Fire

I thought I might try and bang one out while I can, despite battling with a keyboard that has been bathed in orange juice (with bits !). In a way it’s slowed me down which is good because I don’t usually look at what I’m typing, nor the fact that my hand has been skimming over the touch pad and the cursor is never where I expect it to be. That may explain why you might often see an odd piece of text randomly inserted into the text of my blog. It also shows I hardly ever proof read.

I’ll say this quickly, I’m reasonably well. I’ve had to revert to self inflicted diarrhoea, but it’s better than the alternative of constant constipation and the resulting pain from it. My weight has rocketed, that concerns me for the first time. I had to go into town to buy new trousers, I don’t have any that fit me any more, can’t do the waistline up. I’m so bloated I feel like a Mr. Men man. Can you be a Mr. Men Man? Which one would you be. I think I would have to be Mr. Tickle, that’s the one I remember to always end up reading to the kids. Anyway, waistlines, I’m sure it’s worse for men. Anyone who has a stoma knows how important it’s position is, you have to take this into account when buying trousers (or pants as they say oop ‘ere). It’s worse with Jeans. I can hear the crowd of women stoma patients running towards me in anger…of course it’s no worse for men, just different. Anyway, I seem to have achieved an acceptable balance with pain relief and it’s associated side effects. Apart from the dexamethasone (steroids) making me eat like a horse and preventing me sleeping, pain is under control.

Having no treatment for the cancer itself any more make me a little more conscious that the tumours are likely to be growing. Yes I’ve been feeling the side effects of some of this (pain), I can now definitely feel the main growth on my liver without any prodding. It’s just there, stuck in the middle of my chest. It’s not painful, tender if it’s pressed that’s all, but it’s there. I had been hopeful of being included on a drugs trial. That’s not going to happen. The blood clot I had in my liver, and the need to inject myself with blood thinning drugs prevents me for inclusion. From a selfish point of view I’m not that bothered, it was a blind placebo trial which meant I would only have a 50% chance of getting the drug in the first in place, but I’d have been happy to take part. That was what is known as a Phase II trial. Having spoken to the research nurse the other day, she will now get together with all other parties concerned and look at the possibility of being included on a Phase I trial.

( http://www.cancerresearchuk.org/about-cancer/trials/types-of-trials/phase-1-2-3-and-4-trials )

I have every confidence that my research team wouldn’t put me through if they didn’t think there was the chance of a benefit to me. I’m not even sure I would want to proceed, even if there was a chance of shrinking the tumours. Having been so ill with side effects from my last regime, I wouldn’t want to go through the same again for just few extra weeks. Quality not quantity. It’s not even certain I’ll be well enough or suitable for a phase I trial, but at the moment it’s the only chance I have of any further treatment. Cancer isn’t just chemo/cure. Choice is good, but choice can be complex and complicated too. 

I’ve been thinking of acts I never got to see at Glastonbury, there are hundreds of course, but I mean acts I might have wanted to see, or opted not to do so. Blur will always go down as one I missed, but there aren’t many. I wasn’t busting a gut to see Bono, Primal Scream was always going to be the better option. One I didn’t see on the pyramid stage was Bruce Springsteen. I don’t know what else I was watching, and I’m not going to check as it might make me slightly more disappointed. I’m not his biggest fan, but a great admirer. I’ve seen him live before and he’s more than value for money, I’m sure he’d play all night if he could. Anyway, it’s good enough excuse to include a video from Brucie in my blog. I love this song, hope you enjoy it too.   


The first photograph, I’ve no idea where it was taken, probably about 15 years ago, and shows Lewis surrounded by girls.014_11 Look at the smile on his face. Alana is on the far left in pink. The second, just a couple of years ago. What makes me happSeaFronty is to see them happy together, and if I could wish for anything after I am gone is that they maintain a close and loving relationship. They do both love each other very much, and I want them to know they will be there for each other whenever they are needed.



This entry was posted in Be Clear On Cancer, Be Loud Be Clear, Beating Bowel Cancer, Blur, Bono, Bowel Cancer, Bowel Cancer UK, Bruce Springsteen, Cancer, Cancer Research UK, chemotherapy, Colorectal Cancer, Constipation, Deep Vein Thrombosis, Dexamethasone, Drug trials, Festivals, Glastonbury, Glastonbury Festival, Goring-by-Sea, Health, Liver, Macmillan Nurses, Manchester, Metastatic Bowel Cancer, Music, Never2Young, Oldham, OxyNorm, Palliative Care, Pleural Tumour, Portal Vein thrombosis, Pyramid Stage, Saddleworth, Springhead, Stage 4 cancer, Steroids, Terminal Cancer, The Christie, U2 and tagged , , , , , , , , , , , , , . Bookmark the permalink.

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