As always, I just want to say thanks for reaching out, thanks for prompting me to post an update, but mostly thank you for all your concern.
In truth…I guess I’ve just been hiding, I haven’t truly had a lot to say because I’ve had 6 months of zero treatment.
How am I feeling?
I mean…I guess I feel…healthy?
Most probably the best I have in years but I’m not. but I have been slowly feeling worse and worse, it’s kind of like I feel that things are going south you know?
I really can’t describe what it feels like to be sick and knowing you should be on treatment but you’re not.
It’s soul destroying. I feel like things aren’t the same as they were at the back end of the year. This hurts again or I have an unexplained lump which yes. I have brought to doctors attention but I’ve just been waiting for scans or because of COVID, to see anyone.
I guess it’s like I know that I feel well enough to get back to it. It’s like you know that you’re too unwell to do X activity but you feel well enough to go for this big long walk but you get half (if I am lucky) way through but then remember that I’m sick. Then *BAM* it hits you that you’re not as well as you thought you were. Then your brain goes right back to treatment. You can’t ever drop this niggle at the back of your mind.
So I guess if you’re reading my blog for the first time, we should probably do a catch up.
I’m Cam, I have stage IV bowel cancer, I’ve been fighting the fight for 3 years in July and I’m doing well in some eyes. We’ve managed to beat the cancer in my abdomen (Bowel, walls, surrounding tissues and lymphs) but we are still fighting the metastatic cancer in my lungs.
I just completed 9 months of chemotherapy under Dr Pedley’s care and sadly, we have had to say that the treatment was no longer being successful. I am now under the care of Dr Greystoke in the Bobby Robson centre for cancer care in the Freeman Hospital in Newcastle Upon Tyne. Now Dr Greystoke deals in medical trials. Something my own medical insurance doesn’t cover but the NHS does. Albeit nowhere near at the same pace as private care but there ya go.
I’ve been accepted onto a irinotecan based trial at the Bobby Robson centre. This was the original drug I was on when I first started fighting. That was part of the 5FU protocol, however this will be just the irinotecan part of original concoction of drugs.
Similarly it is intravenously delivered over an hour but that’s it. I don’t have other drugs drip fed over 36 hours.
In total, I’m going to be in hospital about 3 times a week, then a week off – if it works, rinse repeat for as long as it works. Even if that’s for the rest of my life. By that I mean a longer stabilised life or if it means it doesn’t work at all. This is pretty much the last line of defence we have lest there be another trial that could help me fight it.
Now I am under the NHS I am less in control of my care. I could request a specific chemotherapy under Dr Pedley again but what if I do 6 months of that and it not be effective, yeah…do you want to make that decision? I don’t think I do anymore.
Well, I’ve had blood tests this week, I have to go to Hospital on Friday for more and they’re going to have a crack at fixing my port. It’s not broken per se but it isn’t working correctly.
It’ll take all the liquids you put into it but it’s always been a bit of a dick for giving blood. It’s been in my chest for coming up 3 years now and it’s ALWAYS been a pain for giving blood. I thought that the nurses from Healthcare at Home/Sciencesis had fixed it as they would flush it 2 or 3 times and then it would give blood but it’s not been playing properly for about 6 months now.
Certain trusts and hospital departments have different regulations to others when they can use a port. For example, one department will use it so long as it flushes first. However some other trusts will flat out refuse to give you treatment via the port unless they can draw X amount of blood from it first.
Herein lies the problem.
So we have a few ways to fight this, I’ve just had a CT scan and they’re going to be able to check the images and see if there is something more sinister going on with it but it’s more than likely that we will end up using some sort of antithrombotic drug (think warfarin) to help dissolve a blockage in my port.
Now, more than likely because I never do anything by halves. It’s because when Dr Frank <insert name here> installed the port he used a longer line than normal. I’ve constantly had medical professionals complain about my port line being long. Even when I had to have it fixed last time by the chap in the Nuffield private hospital a year or so ago. That’s done with angiography to help show the blocked blood cells.
You know what I think?
Just fix the fucking port and stop jabbing me with needles. If you know me, you’ll know I am no friend of needles. I absolutely hate them, if you’re on treatment you do not get used to them like people suggest. Do you shite. You may learn to tolerate them but I get just as many haematoma, bruises and I look like an addict. It’s worse when you’re on chemo as the bruising takes forever to go away, by the time it does, they’re coming at you with another needle for next sessions tests.
I know, I know, moan, piss, moan.
Look at it this way though, I had a port installed for a reason. Although recently I did say, if it needs to be replaced, I’d be up for that too.
What’s my craic?
Last you heard, Kerry and I had got over COVID-19 at Christmas and we were just waiting for treatment. I honestly didn’t have much to blog about so I decided not to. It’s little more than that…
…that and Thailand 2022
Due to COVID-19 David my bestie had to cancel his New Years trip to Thailand, although testing negative repeatedly after his isolation. When he went for his PCR test before flying. He came back as positive and it scuppered his plans and he had to delay the holiday.
He came up with the harebrained idea of bringing me with him. It made sense that this could be my last chance to go on holiday. I’m as healthy as I can be for now. This really was a finite window of opportunity. The way things would work out, I could have a day in London, a 2 week holiday in Thailand and then a day and a half in London. Go back to Newcastle, hug the dog, hold onto Kerry for dear might and then start on treatment the day afterwards.
Everything was going well with the planning. I pulled some money out of my savings and had my passport ready. I did the buying ‘disposable holiday t-shirts’ (read: Plain T-shirts) on Amazon instead of Primark. I then started the most soul destroying job I’ve ever done in my life.
Calling insurance companies. So you know you read about insurance companies that will even insure cancer patients.
starting with my bank, I then called 22 specialist companies and I got 22 refusals out of 23. I did finally get an offer but it was £3500 for the premium and it would only cover repatriation. As you may have worked out, that was more than the entire cost of the holiday…for both of us.
So yeah, I was a firm No on that one. We weighed up our choices and we (by this I mean Kerry did) researched a lot (whilst I cried a lot) and came to the conclusion that, I again would draw out further savings and keep the cost of an emergency flight on the day money in my current account waiting. If I were to have an accident of any kind. I would just get back to the UK where my insurance does work. Under no circumstances turn up to an airport in a wheelchair or crutches as this could or would cause the airline to request a doctor’s note of some sort. Although Thai healthcare is really good, in case of an emergency I would have to say “No insurance, state hospital”
Well, listen: It didn’t go wrong. I didn’t need any of the above and I have £3500 and that insurance company can get in the fucking sea.
The day before the trip as I was packing, I was thinking a lot about what ifs…but I tell you what puts more terror into your heart than all of that.
The 24 hours before your flight PCR test. I got the train to London and I think I had 2 masks on and I sat for 2.75 hours with my arms folded not touching anything other than my phone.
I swear, it’s worse than the sword of damocles hanging over your head. I had already said to David, should I test positive, go without me. He’s already had the rug pulled out from under him once for this holiday. I couldn’t do that to him.
Good news was that step one of proving we didn’t come from plague island with the lurgy was proven.
The flight to Dubai went off without a hitch, a short walk, 2 trips to the bathroom and 27 cigarettes for David later and we were Thailand bound. David never checks a suitcase, he can’t be arsed with the whole baggage reclaim bit. He convinced me to do the same. I swear, I’ll never check a suitcase again. I managed to pack a weeks worth of clothing and anything I needed into a backpack and I will say it was utterly SOLID and heavy. Yeah bollocks to large half empty suitcases. Although I will say he has a suitcase but a small one that fits in overhead.
We land in Bangkok and are immediately hit with a wall of heat. I thought I’d prepared myself but I had not. Our hotel included a transfer to the hotel (Via our last PCR test) and an hour later we reached our destination. Immediately burned my travelling clothes. Changed into shorts and a t-shirt and remembered, we had to wait for our PCR test results, but I showered again opened a book and a few short hours later we got a call in the evening. Tests are negative, you’re free to go out drinking.
Okay the next bit is a blur it went something like this:-
- Big Buddha
- Sang Som and Coke
- 187 games of pool (David actually let me win a couple)
- Floating Market
- Monkey Beach
- Swimming in the sea
- Thai food, so much glorious thai food
- PRAWNS – So many delicious prawns
- Moped taxis and the baht bus’
- Jackpot and Connect 4
- Drinking out of a coconut
- The Elephant Sanctuary
Not in that order, not in that small abundance either.
I had an amazing holiday, thank you to David for taking me and looking after me. Thank you to Kerry for allowing me to go and looking after the furry dickhead.
I feel rested, it’s the first time Kerry and I have ever been apart for longer than a few days to a week in our 15 years together. I needed this more than I will ever admit. I am ready to get back on treatment.
What’s the plans then?
So the plans are to get back on it. However a few spanners have been thrown.
Kerry had been hitting the research again, we’d devised a plan of what we were going to do but the medical trial owners have asked that no supplements be taken in conjunction with the trial. I had asked this originally as I had found that with the 5FU protocol that I found the chemo much easier to deal with when I was taking cannabis resin. I will say that Dr Greystoke had said that once I was established on the trial that he cannot control what I take in, and suggested perhaps a few months into the trial. I know he’s not telling me I can. However, reading between the lines he is not telling me I will be removed from the trial if I do.
So, we had planned to combine the use of curcumin, reishi and turkey tail mushroom extract as there is evidence that cultures that use a lot of tumeric in their diet develop a lot less bowel cancers. The same can be said for the use of the mushroom extracts. Now, I know that the cannabis resin will show up easily on blood tests. However, I eat spicy-full middle-eastern and southeast asian diet and speaking of diet, I have slowly been phasing milk and butter out of my diet over the last few months. I drink my coffee black without sugar now-a-days too. A lot of that came from eating a caloric deficit to shed some kilos.
I am not going vegan or plant based, I still plan to have fish, chicken and turkey but there’s wealth of information out there to show that eating red meat is like feeding bowel cancers. The same can be said for dairy. However, I plan to limit my intake of red meat to once in a blue moon. David spending the last two weeks with me can attest to my lack of eating red meat already. I only had steak once on holiday and ate chicken and fish the rest of the time.
So Cam and Kerry’s ‘Cancer Adjunct Protocol’ as we’re calling it is mainly common sense. Eat more cruciferous vegetables, berries and eat a sensible ratio of carbs, fats and proteins. Supplement with X,Y and Z etc
Kerry would rather that I fall back to a food substitute when I am too nauseous to eat. However this is still as yet untested. I struggle with textures at the heights of chemotherapy and I am able to pallet little less than plain toast.
However, I am willing to give it a go.
The laughable point to this is that there is supporting evidence to everything we have decided to do, but yet the NHS’ advice is to eat whatever you want as long as it’s calories. It’s a shame as many countries in Europe are making this part of their advice, the same can be said for exercise too. I’ve never been recommended to exercise by UK doctors, whether that be private or NHS.
So there’s way more to our adjunct protocol that I am not going into but suffice to say as I have already mentioned, it’s mainly common sense and easily, oh so easily missed. There is also new things to the research that are showing rave results such as fasting that we are considering. So there we go, that’s what the plans are. I am back into hospital tomorrow for blood tests and to see if we can get my port working again.
There’s so much more to tell you all, like I wrote this blog a week and a bit ago, I have two drafts but I’ve just been procrastinating too much to publish it so I thought I’d just fire this one out and move all of the stuff unsaid into the next blog about the first treatment and the new car.
Thanks for reading.