• Notice regarding image hosts and attachments. See here.

Well this is a bit ******

dod

dod

Soldato
Joined
31 Oct 2002
Posts
4,474
Location
Inverness
I hope this isn’t considered a medical thread, but an experience. Maybe this can help me cope as well as anyone else. Maybe even encourage someone to take advantage of the system

I’m male, 61, pretty good health, keen cyclist. According to my garmin stats my VO2 max is in the top 1% for my age and gender with a fitness age of “an excellent 20 year old” , if you can believe that sort of programmes. In September I got through my bowel screening kit , happened to need a poo so went and did it there and then . Sent it off and didn’t think any more about it.

Few days later I get the letter back through and instead of no problem it says they want to see me for some tests.

Those tests basically consisted of a colonoscopy plus various bloods. Still wasn’t too concerned, loads of reasons for a positive result and I’m fit and healthy.

Night before the colonoscopy wasn’t great. A preparation called plenvu empties your bowel, vigorously. If you’ve ever heard billy Connolly’s sketch where he’s drinking foreign tap water that gives you an idea.

Colonoscopy done and you get an instant result. They found a polyp that was described as looking angry. No wonder really, just been exposed, poked and biopsied.

10 days later results are in, I’ve got an appointment with a consultant and as soon as I walk into the room I know it’s not good. You don’t need three people to give good news. He confirms it’s cancerous.

The rest of that day was a blur, met many different people and had a CT scan to see if there was anything else hiding. Abnormalities were found in liver and spleen so a MRI scan was arranged to check them out. Fortunately they were classified as small benign cysts. I don’t know how they do it but they do.

They now know what they’re doing so surgery it is, they don’t need chemo to control things prior to an op . I’m fairly lean so they decide I’m a good candidate for keyhole. And that’s what happened on Tuesday. Again prepped the night before and first on the table on the Tuesday morning. Anaesthetic via a cannula in the back of the hand but also some form of opiate injection into the spine between L3/4. The surgeon looks like a child although she says she’s on roughly her 100th procedure. Make that 101 now.

Everything goes well apart from hitting a vein which shouldn’t have been where she was putting in one of the tools and meant the op took about 7 hours instead of 5.

She took away about 40cm of bowel from the left as well as all the lymph glands and blood supply to that area. She then rejoined the two ends of the bowel so I don’t have a stoma. She’s confident she’s got everything but is going to recommend chemo, she thinks one of the lymph glands looks suspicious and expects pathology to confirm that.

Right now I feel like I’ve been kicked repeatedly by a horse. I’m getting a pretty decent mix of painkillers but I’m able to get out of bed and doing circuits of the ward. They said try to do one, every few hours. I’m way past that.

The physical side of this is manageable, I’m struggling with the mental. 8 weeks ago I was in rude health, now I’m a patient, and not a particularly good one.

Yesterday, the first day after the op was great. I guess my system was still full of meds. Today hasn’t been so good. I’ve been awake since 3am with abdominal cramps and currently relaxing due to a shot of liquid morphine. That stuff should be in boots :D

I am however grateful that I did that test early and this got caught fairly early. Bowel cancer is treatable and although I’m not out of the woods yet I’ve got about the best possible outcome I could have had at this stage. And all because of taking part in the screening. I suppose that’s the point of this. I’m not doing a poor me thread. If this encourages one person to take that test because they normally ignore it it will be worth it. If I hadn’t the surgeon says I’d have had three years.

The NHS has been awesome. I can’t fault the treatment I’ve had. I’ve also got BUPA but when I ran this past them they couldn’t get me through the system any quicker.
 
Sorry to hear you're going through this. My wife is as well and it isn't a fun experience. Everyone's journey is different so I'll not voice her journey here. I hope that whilst a lymph gland may look suspicious that the results come back as negative for you. It'll be down to a Multi Disciplinary Team to decide on your treatment going forward. So whilst chemo may be on your mind it's all unknown until the results are all in.

Is that the first FIT test you've ever done for bowel screening?
Not my first test, I’ve actually done them from 50. You’re right, there is a MDT that will make the decision but the surgeon is saying prepare for that eventuality. I’ll know formally on the 6th December
 
People bury their heads. They don't want bad news. It's silly, though, ignoring cancer is like sitting on rail tracks and ignoring the oncoming train.

It doesn't matter how much turmoil and pain OP suffered, it was insignificant to what would happen six months later had he not had the op.
Correct. This way I’ve got a realistic chance of a fairly normal life, albeit dominated by tests for the next couple of years.

Without the scan I’d be dead in three years.
 
Quick update for anyone who might be interested.

Today was my first day of chemo, I was bricking it before I went in. The reality wasn’t nearly as bad as I imagined. The process took about four hours in total.

There are eight cycles in total. Each cycle lasts three weeks, two with treatment and a rest week. The first four cycles are an infusion on day 1 followed by tablets for fourteen. The last four are tablet only.

Got steroids and anti sickness tablets to take for the next few days along with the treatment and just need to wait and see if there are any other side effects.

I’ve got fairly strong pins and needles in the arm they used to do the infusion, apparently this is common. It’s a bit uncomfortable but if that’s the worst I’ll cope fine with it :)

NHS again has been exceptional. Staff are amazing but you can see they’re working despite the environment. Some bits of the building are crumbling, one of the treatment rooms was leaking. It changes your perspective on what we should be spending our tax money on. It’s a service (NHS, not cancer specifically) we’ll all need at some time
 
Glad to hear your doing well, Have you got much hair to loose or won't it come to that?
I’m learning loads of stuff, the process is absolutely fascinating and I think the nurses are starting to think I need to shut up :cry:

All chemo is not the same apparently. What I’m getting is not likely to cause full hair loss, there might be some thinning but even that’s unusual. Probably just as well as I broke my head a few years ago and there’s lumps and dents from the bone grafts they did :rolleyes:
 
Last edited:
I missed your link in my previous thread, and I can't work out how to remove the M2 reference (derp). Chemo wasn't as bad as people said it would be, but it also utterly ****ing ruined me in ways that I couldn't quite get on top of. I don't know all the methods but I had to have a chemo pump for 2 days, and it was so in the way. It also changed my mood, seemed to make me short tempered, and everything became hard. I didn't experience hair loss either, until I did. 3 months of chemo and my hair survived, last two weeks I looked like a shaved badger. It wasn't my 'head' hair that seemed to bother people, the double looks were a lack of eye brows and stuff.

Anyway, I've missed your journey, and I'm going to read it in more depth now.
My chemo is reasonably straight forward.

Eight cycles of three weeks each. Day 1 is the infusion of oxaliplatin. Then 14 days of capecitabine tablets. Then a week off. Four cycles of that and then four of the tablets only. So, six months in total. A bit like you though they don't think it's spread beyond a few lymph glands which they removed and it's regarded as adjunctive, hopefully just mopping up anything that might have broken away

I get what you say about it not being as bad as you expect but the infusion is the worst for me. I'm left with very aggressive pins and needles for the first week or so but they gradually wear off over the three weeks. Cold really affects them and when I came out last time it was frosty. My whole face froze up, pins and needles on my nose and ears, I couldn't focus and breathing left me feeling like my throat was being closed off. They'd warned me that it could happen so I was able to deal with it but still a very weird experience.

I also relate to the moods etc. I'm trying to negotiate my way out of my business to retire just now (I now realise how short life really is) and it's not great, I'm easily triggered but also forget things, . Doesn't help that my business partner hasn't exactly been genuinely empathetic. C'est la vie.

Liking the decisions re the M2/3/4. I've always fancied a boxster or cayman so I might go down that route :) I'll wait until I've had my 6 month scans to give me reassurance/confidence that I'll get more than the summer out of it :p
 
Well, a quick update. I’m now 18 weeks into the 24 week programmme of chemo. It’s still not terrible but I get tired easily, it’s messing up my cardio system and recently I’ve been having issues with my feet and hands. The skin is drying up and I need to use a special moisturiser twice a day. Apparently the chemo can “pool” over time in the extremities, a cumulative effect apparently. Consultant is still happy with blood results though so he’s happy to approve the next cycle.

On a personal level I have now retired. Business is sold and cashed in, being out of that process has reduced stress levels more than I expected. I’ll take the next couple of months to hopefully be clear of this and then decide what, if anything, I want to do going forward. It’s been 6 weeks now and I’m struggling to establish a proper routine. I can’t see myself not doing anything but I’m not interested in a 9-5 full time. Might start something else up where I can control my input level.

Also decided life was too short so bought the car and loving it :rolleyes:
 
Quick update, my chemo is now finished, been a long six months but it is what it is.
Got a post treatment scan on 22nd which will hopefully confirm the treatment has been successful :)

Last couple of weeks have been pretty hard, the feet and hands have really reacted to the chemo. Hardly been able to walk for the last few days. To be fair when discussing with the oncologist she was considering reducing the dosage but I said to keep it as it was. Maybe pushed it slightly too far . Attached a quick hand picture for reference . Feet are the same except they’re also peeling which you really don’t want to see :cry:

Excuse the slippers, but they’re memory foam and really comfy

YtvuuSa.webp :o
 
Last edited:
Hope you bounce back and get back to being active again. How's it been since? Are you able to eat ok and "do your business" without issues?

Glad you spotted it so early. :)
Cheers, still able to do some work on the turbo trainer, strangely that doesn't seem to bother the feet, really weird. Fatigue was the biggest issue with that, espcially the few days after restarting the treatment cycles

As for the rest I was lucky, didn't need a stoma so everything works as it should although you don't get as much notice that you need to go as you used to. Diet is back to normal, the first few weeks you were restricted to low fibre stuff to minimise any possible complications. Biggest issue is having an excess of wind which for some reason is more difficult to control :p
 
Well, hopefully this will be my last update on this thread.

As mentioned earlier the chemo was finished in June and I had a post treatment scan on 22nd July. Good news was that that was clear but they still had a bit of concern over one of my blood marker scores. Apparently everyone has a tumour marker score of some kind and mine was higher than they would expect to see. The oncologists view was that it had run at the same level right through the treatment so it was probably just "my level" , like some folk have high blood pressure, so he wasn't that bothered about it.

He did however say that if I wanted to he could arrange a further scan called a PET scan which would be like a final check. Needless to say I took it. The PET scan is interesting. My limited understanding is that tumours feed on glucose and therefore leads to concentrations. By infusing me with some mildly radioactive compound which bonds to the glucose, then doing a scan for that they can identify if there are any other nasties lurking they weren't aware of.

Good news is that came back clear last Friday so I'm now officially in remission, cancer free, however you want to call it. I'll be under observation for a few years I suspect, initially bloods in 6 months with another colonoscopy in a years time.

NHS has been fantastic. From initial positive test to diagnosis and surgery was about two months. I feel very lucky at the moment and just enjoying life. You only get one shot at it so make the best of it.
 
That's great news Dod. Getting the all clear must be a massive relief for you. My wife had one of those PET scans, like you say, interesting stuff. Hope the road to feeling 100% doesn't take too long. My wife still gets numbness / tingles several months after stopping her treatment.
I’m getting there fairly quickly to be honest. The first month or so after chemo I was still tired and exercise tired me quickly. Now I’m back to the gym and on the bike again and it’s feeling better all the time.

Like your wife I’ve still got a bit of neuropathy going on. It’s the balls of my feet and toes which feel like there’s a pressure even though there’s not. Skin on soles of my feet still peels a bit as well but nothing like as bad as it was .

Hope your wife’s treatment has gone well.
 
Back
Top Bottom