Hi Everyone, I am a little behind on me doing an update blog. I guess I have been hiding a little. I for sure had been feeling a lot better. I hadn’t really had too many side effects from last fortnight’s chemotherapy. The pain was there, the vomiting and other side effects were gone. I still had nausea and heartburn from hell but I was able to eat a lot more than usual. I could join Kerry in having what she was having for the evening meal.
NOT if it has chillies in it though, I find that on chemotherapy my skin thins terribly. That goes for the lining of my mouth too. Your common garden ‘red chilli’ that we’d put 2 or 3 in a fried rice normally, I couldn’t take the heat and pushed them onto Kerry’s plate. Other than that, it was okay I guess.
I’d watched a lot of TV, I played some video games when my eyes permitted, by that I mean that if I am playing something with super bright colours and sometimes if it’s a chasey type game. I get motion sickness and I won’t play at my normal skill level either so I tend to give them a wide berth.
I have just been disconnected from my penultimate chemotherapy session of this current cycle. I keep trying to think ‘one more to go, one more to go’ but that in itself is like The sword of Damocles hanging over my head.
Every chemo session is different, just because it’s the last treatment in a rung of them doesn’t for any second mean it’s going to be easier. I’ve learnt my lesson thinking that in the past.
During my disconnection with Lloyd’s homecare nurse Fi(ona) I was asked all the questions. How do you feel, any temperatures? how’s your pain? how’s your nausea? Sickness and Diarrhea? I answered fine to all of it.
I wake up this morning, after a night of crippling nausea and heartburn. Thankfully, they’ve calmed down a little and I was able to get my meds in me this morning, I managed to eat a margarita pizza last night with some mushrooms on it. I monstered it down, I even think I managed to eat it before Kerry which is a rare thing now, mind she did have dough balls too, thank the gods for Pizza Express home cooking, you can get an edible pizza and jazz it up yourself.
I don’t think it was that giving me the heartburn but I wouldn’t discount it really.
Sadly, I woke up this morning with pain in my back end, it’s what I have come to expect from being on chemotherapy. It takes a couple of days for it to start thinning my skin and any movement down there (which is going to happen multiple times a day) is going to disturb where my tumours were and cause me discomfort, then discomfort becomes pain.
So, I take my meds differently during my 14 day chemo cycle.
Days 1 and 2, when I have the lion share of the drugs pumped into me with the nurses there, when they connect me to the pump, I immediately start taking Omeprazole (which is a god-tier anti heartburn pill) preventatively.
I don’t know WHEN it’s going to kick in, but it IS going to kick in.
When it comes to pain, I start taking my tramadol from about day 2 or day 3 after connection. That’s when the pain kicks in but such is the beast with tramadol and it being an opiate, you can’t just stop taking it or you get the side effects from detoxing from them. So I will always be taking 2 in the morning and 2 in the evening. So what I do when I need them is the dose goes up to 2, 4 times a day when I need them.
I still have to take my Care Oncology Clinic medical study pills daily. That’s my:-
- Doxycycline (One month on, One month off)
I have just had my quarterly review with Dr Kuhan from the Care Oncology Clinic. He’s really happy with my progress and my bloods. Obviously he was concerned when my 3rd session of this chemotherapy cycle had to be postponed when my bloods all crashed. However I don’t think that I had blogged about this. When I get my blood test results. I email them to the Care Oncology Clinic and I email them to my other Oncology teams that are keeping an eye on me too. Namely the Christie in Manchester.
I had actually received emails from them telling me it was okay to continue with the medical study medication even though my bloods had crashed. They agreed that I should be given a week break and be retested till my neutrophils and white and red bloods were back to normal levels.
It’s kinda nice to know you’re having multiple people looking out for you know?
So I am ready for a bit of a decline, it’s how it works on these chemotherapy cycles. The first couple of days are hopefully not so bad, then we move into the next 6-7 days of as I say, decline. It’s where the chemo is doing it’s work. My blood levels tank a bit and I kind of know when it’s coming. I find stairs a chore. Even the small 2 steps down into my kitchen I have to brace against the walls and take them slowly. I find sitting down more of an effort. I need the sink to sit up from the toilet and things like that. I will become more and more reliant on the pain medication that I take and for some reason my vision always screws up. I cannot see clearly with or without my glasses on. I’ll end up not wearing my glasses at all. No point in straining my eyes with my glasses on was my thinking.
The only thing I wish I could ever deal with was this bloody metallic taste in my mouth. I get it from the second that they pump Folfiri – Folnic acid part of my chemo prescription into me on day one of chemotherapy. It doesn’t leave me until about day 10. I. have. tried. everything.
Sadly, I haven’t found anything that works. Some people suggest super strong flavoured foods to try and combat it. I sadly haven’t found that helpful. One friend recommends extra strong mints, I find the flavour and mint painful on my tongue so they’re out.
I tried a couple of cloudy lemonades, nope. They bring heartburn.
I know, it sounds like I am moaning but I can taste marmite on toast. It’s really my saviour. I was always a marmite kid. I can even manage toast when I am feeling the worst of my nausea, I have to eat. I need to take my medication and taking it on an empty stomach just doesn’t work.
A friend of mine recently said that they had read a paper on miracle fruit use with chemo patients. Some 50% of the patients had reported their sense of taste had stabilised whatever that means, and some 30% had reported their sense of taste had improved. 35% said they thought it was helpful.
So I am trying to source some for if I have to have chemotherapy again in the future. I don’t see them readily available in the UK. No Holland and Barrett, no amazon. So if I do have chemo again, I am going to do a search and see if I can get any improvement to my sense of taste.
I had tried them years ago, my old flatmate Shepy had got me to try them and taste vinegar. Such a very odd experience to taste sweet when trying them.
We can only try eh?
Today in the news today we all found that the American actor Chadwick Boseman known for his role as King T’Challa – The Black Panther from the Avengers films sadly lost his fight with colo-rectal cancer.
He had been privately fighting it since 2016, it had sadly progressed from stage III to stage IV in 2020.
He was such a trooper. He acted in multiple Avengers films (Civil War, Infinity War, Endgame) and the black Panther films during his treatment. Think of the shape he was in during this time? Right?
He then went on to act and produce 3 or 4 more films on top of all of that all whilst receiving chemotherapy and having countless surgeries.
He was only 43 years old.
Please, Please, PLEASE! stop thinking that Bowel/Colo-Rectal cancer is an old wo/man’s cancer.
It bloody well isn’t. It’s become more and more prevalent in younger generations.
I can constantly be a reminder to you all to get yourselves checked out. However, to piggyback on the loss of such a great American Black Actor such as Chadwick for extra exposure on this. I have no way of asking him, but I am sure as h*ck he would want to give a voice in this.
Any signs of trouble down there. Don’t wait…
Please don’t wait. It doesn’t go away. It doesn’t clear itself up…
If your doctor tells you “There’s nothing to be worried about” you have a right to be seen by another doctor. You have a right to be referred to a specialist.
Yes, it isn’t going to be a nice experience. I tell you this, it’s a better experience than chemotherapy ever will be.
I name no names, as I do not have their permission to post details, but I was recently contacted by one of my oldest friends.
They listened, they finally reached out to their doctor and got their referral.
For them, it was great news. Not cancer, but certainly something that could become a cancer if left to its own devices.
It means the world to me that my friend can now receive the treatment that they need to remove this and can stop this from becoming worse. I am super proud of my friend for taking these steps and not listening to the GP.
Well, for me. I have another round of chemotherapy in about 10 days time.
I then have two scans booked in 16th of September for an MRI and 21st of September for a CT scan.
We will be scanning my bowel and my lungs. However, it’s sensible that we check my liver, prostate too.
Knowing I have the scans coming has already kicked in the coined ‘Scan-Xiety’
It’s hard to go through the wait. Especially with such a gap between the two scans. (5 days) I will usually only have to wait approximately 2-3 days after the CT scan before I will have the results. For my private health insurance, I am truly grateful.
It’s near enough time to have a face to face meeting with Dr Pedley my oncologist. I will understand if he still prefers to hold them on the phone.
I have so much I want to ask him now. Things like, are we just leaving the old tumour site alone, are we looking at operations to remove whatever destroyed flesh or whatever has been left over there?
I never got round to asking the first time as I guess I was just so excited to hear I didn’t have a tumour there anymore.
The scan results are going to tell me predominantly, has the metastatic cancer in my lungs reduced at all, have by some sort of miracle they all gone (A guy can dream can’t he?) or have they continued to multiply.
It will also tell me if the cancer has decided to spread to a new location too. Liver, pancreas etc.
If I have reacted well to the chemotherapy and its reduced by 50% which was a tall order at the best of times. We can then talk about other treatments such as sabr.
If I haven’t and it’s only made a bit of difference, it could mean another 3 months of chemotherapy. Oh good gods I don’t want this to be the answer but I don’t have a choice in the matter.
If it’s turned up where, then we will just have to meet that head on and talk about it.
It’s just the not knowing that breaks you.
Sure you can be all doom and gloom about it. For the most part, you all know me as the eternal optimist.
I always try to look on the bright side.
However, since this cancer thing came along. I just don’t know what to think. I usually just wait. Not thinking and hope for good news. I didn’t know what to expect after the radiotherapy treatment.
I was in so much pain I just wanted it all to end. I was prepared to say to Dr Pedley that I didn’t have it in me to continue with that line of treatment.
As much as I hate chemotherapy. If it works then I will just have to take it on the chin you know?
All I know for now is, let this chemo end.
I miss prawns. I miss runny eggs, I miss mayonnaise.
Most of all, I miss my friends.
Mood: So at the moment, I am good, just the anxiety of the scans.
Pain: 3-4/10 but moving bowels 5-6/10
Appetite: I am eating. I just don’t want much as I can’t taste it.