Hi Everyone, thanks for stopping by for a read.
I’ve loads to tell but I’ll make it a short blog as I went on treatment yesterday and I feel like death warmed up today.
Round 5 went okay I guess but I was telling my partner Kerry I felt utterly exhausted and it so much pain from not only the accumulative rounds of chemotherapy, but also from the soft tissue damage caused by the radiotherapy in 2020-2021 being aggravated from the chemotherapy. I told her that I felt like I really needed a break as I honestly didn’t think I could continue.
So after completing round 5, I would have a CT Scan and a consult before starting round 6. Upon seeing the doctors and nurses prior to the scan I let it all go and Dr Greystoke who is leading the study I am on decided to book me in for his clinic on the Friday following the scan (Which was on the Tuesday) to discuss the results.
Obvs, because he is leading the study, you don’t see him a lot. You tend to get the duty doctors. As it’s a research department, they’ve always got doctors in training in their final years and people on loan from other departments as they want to get some experience.
On the day of the scan we are to attend and as I explained above, Dr Greystoke wanted to speak to me before and after the scan.
The scan itself goes exactly how I remember NHS scans going previously.
A lot of waiting around, you attend on time through the fear of gods! but you always end up waiting around for ages.
I am not getting at the NHS but I am lucky enough to have medical insurance so I know how quick it is when you’re paying for it.
I can’t stop feeling like these are the days I need to be dropped off at the hospital.
I think we were in the hospital for about 4 hours and about 2 hours of that I was away from Kerry. It doesn’t stop her from working as she can work wherever there is an internet connection. It’s been like 3 years now and I am sure she’s used to it. She can’t like it but to just completely contradict my previous point. I need her there as it’s usually a time when someone wants to tell me something important and I need her there to take either take that in for me or to explain it to me afterwards.
Anyways, the scan goes ahead as normal, but slow and I go back to the Bobby Robson centre afterwards and find Kerry buried in MacBook working. The cannula in my arm got caught on one of the double doors in the hospital and is aggravating me. She asks if I am okay. I say yes and then I take a seat, grab my kindle and shove some music on and try to chill out a bit.
It’s not too long before Dr Greystoke collects us and takes us for a meeting.
It’s here when he tells me how awful I look and that he has had a preliminary look at my scan results and he would like to discuss them quickly and then have a proper chat with him on Friday’s clinic.
What we can see on the scans the usual about 10% growth in the size of 3 or so of the metastatic cancers but also signs of cavitation (Them dying from the inside) they would expand in girth if they’re dying from the inside, but they could also see a thickening of the walls in my bowel. Either the cancer returning or the walls reacting to the chemotherapy where my tumour used to be. He would like to have Dr Pedley and Dr Hashme the colorectal specialists have a look. He knew Dr Pedley may not be able to as he was on bereavement leave however Dr Hashme should be able to. He said he didn’t want to rule out asking for further radiotherapy to the site should I need it. I explained if that was the case when we would definitely need to pursue a bowel resection whether that be temporary or permanent as I could not go through the pain of that again. It’s not the actual radiotherapy that is the pain, it is the trying to use your bowel, which lets face it, you have to. Daily….Multiple times and because of the chemo, completely unannounced some times. So, I would rather that I had that done privately etc if that was the case.
This is the point where Dr Greystoke said he wasn’t sure if was needed and that he mentioned it as it could be a recommendation. The CT wasn’t clear and that the resident radiologists and colorectal oncologists hadn’t seen the images yet.
I said to him, would it be best for me to have an MRI or a PET CT Scan. I could ring Aviva my insurance company and have them budget them for me and I could have the scans within a week or two at the latest. Again, Dr Greystoke said he wasn’t sure yet he’d rather wait till clinic to discuss that.
I did tell him that obviously, this isn’t my first rodeo and I usually get very sore from prolonged chemotherapy in by bowel. Experience soft tissue damage/aggravation. Bleed. It’s most likely a horror story to hear about but has become part of my life. We discussed pain therapy and agreed to park the rest of this conversation for Friday.
Kerry and I went off for Bánh mì in Heaton and then chilled out for the rest of the day. We tried to talk about the scan results but thought it best to do that after Friday’s clinic.
Well, if I am honest, there wasn’t much more covered in Friday’s meeting with Dr Greystoke and his trainees. His opening gambit was to tell me that he thought that I should have an extra week’s rest before continuing on the protocol. He also thought that he needs to reduce the dosage and after speaking with the trust who are paying for it they thought it best too.
I am on the highest dosage and frequency. Kerry had asked if anyone else was experiencing it as bad as I, and they don’t have anyone to compare me to, others being on a lowered dose had not.
So I had asked if this should affect the medications efficacy and they assure me not which is good.
We then went to discuss a change in medication for my pain, I had been using paracetamol and then as and when I needed it, tramadol and for breakthrough pain, Oramorph.
Neither of the latter do I like to use as the side effects are awful. Sleepless nights, sweating, nightmares and becoming a walking zombie most of the time. I’d rather only use them when the pain gets too much.
Now if you know me, you’ll know. However if you don’t… Hi I’m Cam and looking at the wrong foods gives me heartburn. So aye, when it comes to anything anti inflammatory, I’m getting heartburn.
So I know for sure that I need to use something that is an anti inflammatory we have decided to use naproxen, I don’t want to use it unless I have pain and I am going to use it in conjunction with omeprazole which is a gastroesophageal reflux treatment that works for me. Again, I won’t be taking this unless I need to take it. I don’t want to go back to two years ago on 37 pills a day. So I will be taking it preventatively. From about days 7-11 or 12, usually two days after taking the G-CSF medication the pain from that kicks in. I don’t know when the pain in my bowel kicks in as that’s random. So we shall see.
We’ve talked about other opiates such as codeine but that causes constipation and we’re trying not to affect my bowel in anyway so less said about that the better.
Dr Hashme has not been able to review my bowel wall CT scans so we couldn’t discuss that further but really, it was go, go home. Relax and rest up. Come back in a week for blood tests and we will see if you’re ready then.
So during my little break, I was able to meet up with Dan and Eddie my two workmates I spent the most time with at work. We did a mini pub crawl from Tilley’s bar, to The Town Wall and then onto Mitch’s place Prohibition bar (Shameless plug for the latter, one of the best kept secrets in Newcastle, it’s a canny bar and you should all go visit) before bundling me into a taxi home via McDonald’s to grab a cheeseburger or 2.
Kerry reports that I came home, talked codshit for a few minutes, destroyed a cheeseburger and promptly passed out before she told my drunken idiot arse to go to bed.
As you can imagine, that was my first drink since David and my holiday to Thailand. I was a little delicate on the Sunday for sure. Then on the monday for… most of it.
I’ll never learn, nor do any of you expect me to.
Moving on to the rest of the week. I was fine and I tried to get as much R&R as I could. I had planned on doing a sneak into the office to see the rest of my colleagues on the Wednesday, but I woke that morning feeling absolutely awful and I had to cancel. I’ll plan to do it another Wednesday (It’s the only day my company go into the office as the rest is WFH) in the future so I will get round to it.
Head on to Friday of the week off, I’m due in Hospital again for blood tests. Helen did my tests and have me a butterfly needle for bloods which I didn’t feel. She got a Star sticker that day, that’s for sure. Kerry and I played videogames most of Saturday and Sunday. We got Dying Light 2 in the steam sale and have really been enjoying the Parkour/Zombie bashing. It’s a lot of an improvement on the original.
Monday was chemo, we were in Hospital what seemed to be an age but it was really waiting for the medication for some reason. The pharmacy in the hospital are a bit useless to be fair. We’ve had to come back for medication before. We had a meeting with the duty doctor who wanted to speak to me about the blood results. It would appear my testosterone levels have tanked. They’ve been in decline since being on chemo but now is time to do something about it. So now I am on a gel thing I have to rub on my shoulders. Make sure I stay away from Kerry or make sure not to get it on her as it could be seen as her cheating on a test if she’s picked at random by the A-BPU as they are a strict no performance enhancing drugs federation for Powerlifting.
I should actually speak about that now. She’s 2 weeks away. Less really, it’s like 11 days or something before she’s competing at Brit’s in Manchester couple of weekends from now. It’s mad she qualified for that on her first meet. I’m super proud of her and you all should go follow her Instagram if you want to know how she gets on. Due to the fact we’re in Manchester a week on Friday we can’t do blood tests then, I asked for them to move the days and it appears we have triggered them to make it a permanent change too. Looks like I’ll do bloods on a Tuesday and treatment on a Wednesday moving on. It works out better for both of us as it’s days when Kerry isn’t working out and doesn’t usually have meetings.
So I am still waiting for the drugs to kick in properly, I feel like they are already but it’s not too bad. I’ve got that ‘slightly out of focus’ thing I always get from Chemo where I don’t know if I should have my glasses on or not. I’ve certainly got the ever present metallic taste in my mouth and I wouldn’t throw myself down into a chair through fear of it hurting. So it’s coming… It’s coming.
Anyhoozer.
That’s all I got, as usual. Sorry for the delay in getting these out. It is really hard to motivate but I was having an extra week of R&R and I needed it.
Hit me up on signal messenger, email or whatsapp and facebook if you really must. I’d like to hear from you.
-Cam
An honest blog about a guy's journey through cancer and chemotherapy 