My Virtual Prattling

MVP

Multiple Varieties of Positions?

Mixed Veg and Protein?

Massive Vermillion Pig?

Actually it’s Mytomycin, Vinblastine and Platinum – there; that made much more sense, didn’t it?! That’s the chemo I’m on this time: 3 in 1, mega-bitch of a doings! Well, not that bad – but then I would say that! It takes 8-12 hours (depending on efficiency of staff and if they think you have anything better to do than hang around hospitals, hooked up to a drip; mostly because of the platinum. Platinum can damage the kidneys so it can’t be allowed to rest there, consequently I start with the most enormous bag of hydration you have ever seen and, as if that wasn’t enough to get your kidneys to flush through, I get a couple of diuretics, too! After that, I’m up and down, to the loo, like whore’s knickers! After that I get a shot of steroid (Boo! Hiss!); a shot of the Mytomycin; and a shot of Ondansetron (anti-chucking up everywhere). Then it’s the Vinblastine – it’s derived from periwinkles, you know; how pretty! – and then the Cisplatin (the platinum bit). That one has to be over 4 hours, with a bag of something else. And then we finish with ANOTHER bag of hydration AND a jug of water, to drink!

For the first cycle, I got it all overnight, on the ward but it was such an horrendous experience I stamped my foot and refuse to be an in-patient, ever again. More of that when the formal complaint I made is resolved.

So for cycle 2 and today’s cycle (3), and all subsequent doses (a max of 6), I’m on the day unit, where staff are pleasant and supportive, of patients and each other, and the atmosphere is positive.

As things stand, in terms of drugs available, this is my last chemo option so the last treatment that can control the spread of the cancer. After this all we’ll be able to do is control the pain. Yesterday’s CT showed the chemo is reducing the breast mass and lymph glands; the liver was stable with some slight improvement in a couple of the lesions; and the tumour markers were, strangely, going up – but, even more strangely, this was seen as confirmation the treatment was working, just as tumour markers dropping does! Go figure. So the worst, worse case scenario isn’t happening. The next worst case scenario is that the cancer will start to progress as soon as the chemo stops. This would see my health declining and the final curtain starting to drop. How fast? Well, Mum went from well to dead in about 8 weeks. That’s the worse case scenario. Best case? The ultimate “best case” would be Miracle Cure, obviously! So best case, tempered with reality is: The disease remains stable for a period, after the end of chemo – other chemo’s have given me 6-8 months of stable disease – then slow progression before the disease even starts to impact on my health; then slow decline before Goodnight, Vienna. And, if I can string that out long enough, another chemo will become available. There is one, Halaven, that’s been released for use, looked very good in trials, and is now making its slow progress through approval by NICE so I think it’s not unreasonable to think I can stick around long enough to benefit from it. [Update: Saw in the news today Halaven is going to NICE next month. Let’s hope they approve it for use – it’s cost is comparative to other modern drugs and it’s efficacy greater so…..]

And then there are trials: When all other treatment options have been exhausted these become the bright hope and shining light for people in my position! I am very glad my consultant, the ever-lovely Dr Charlie, is involved in research so must be open to putting patients in trials. As a researcher he needs those patients and, as a patient, I need those drugs! There is no danger; by the time drugs are being trialled on patients they have already passed three levels of testing so it’s not like swigging from a bottle marked with a skull and crossbones and hoping for the best! In fact, even trials on people go through various levels; starting with a few people and ending with the big trials, which need a large sample group to give validity to the findings. And I think patients are put forward in reverse order, as it were; you start on an end-stage trial which they really already know will work and then work backwards down to the ones that worked in the lab and on animals and they know why!

My other reason for being willing to take part in trials is: I paid for it! Well, helped pay for it, with my Race for Life! My 10km was pleasantly uneventful: My hips started to ache a bit around 3 km but that passed as the bits of my quads and glutes I don’t use for cycling started to complain, at about 5km. But by then I was into my stride and had found someone to talk to so I just carried on strolling around LydiardPark. My friend Kathryn ran the 10km (the mad fool!) then walked back to find me and finished a second time – ok; she cut off the last corner to get me a restorative bacon bap – but she did an extra 5km walk, on top of her 10km run! She also directed her friends and family to my sponsor page and helped boost the coffers well over my £1,000 target. As of today, we have raised £1,245, plus GiftAid, and there are still some people who I know will be contributing so I am hoping to top out at £1,500. So I think that entitles me to expect Cancer Research UKto develop a treatment, if not a cure, for me by the end of summer! Actually, I think it’d probably pay for a research lab and staff for about 20 minutes! But I’m pretty chuffed with my achievement. The sponsor page stays open until, I think July, but why wait? If you haven’t done so already, hop on over to http://raceforlifesponsorme.org/ruthjames1310

It’s now tomorrow – I’m tired and constipated (TMI? Oops!) but otherwise fine. My Social Wanker didn’t turn up for our appointment but the woman that manages Direct Payments has found a new agency to do my 6 hours a week: Cleaning; “heavy” laundry ie sheets and towels; and food prep during chemo week so I don’t have to live off pierce and ping or reheated left-overs from last week. With an option to add in more as/when the disease progresses and I need more support.