hello all.
where to start, my story i guess.
i hadnt felt myself in the last few years or so, tired weak depressed, lack of energy and so on.
but couldnt put my finger on why i felt this way, i had a small holding which i reluctantly sold and bought a less demanding property.
one week after moving in i became unwell like id not experienced before, very bad stomach pains, fevers, total weakness and a lot of throwing up.
it was sujested and thought id picked up food poisening so i tried to sit it out and get over it.
well i didnt get over it, i could only manage drinks, food just came back up, sleeping was whenever and if i could get it, pain came in big waves across the lower stomach and no amount of pain killers worked until my gp gave me a morphine based med, that helped but didnt last long enough.
this went on for 6 weeks, it was sujested i go to A&E a couple of times but if i didnt eat but had drinks i could reduce my pains to just a bad stomach ache and i really didnt want to go to A&E for tummy ache.
i must say this did cause problems at home as i wasnt contributing and frustrated my wife hugely but i felt so bad i didnt really care, there wasnt anything i could do about it.
it became so bad i could hardly stand and throwing up jst happened without warning. my wife nagged me and took me to A&E, long story short after a xray i was told i had constipation and to take laxatives with paracetomol, i nearly flipped at the consultant, constipation my ar*e.
i jst went home in dispare. i was sick for another 2 weeks when i had a phone call from a radioligist who had taken another look at my xray and said i needed to contact my gp.
i contacted my gp and was told to attend A&E as soon as possible with a letter in hand from gp. off i went with my wife.
after waiting for a good few hrs a doctor came to see us and apologised many many times saying i shouldnt have been waiting for so long given my condition, i was in a bit of trouble at this time.
i had a ct scan and was told the results would take hrs, it was around 2am at this point, i told my wife to go home, but very shortly afterwards i was called into a room with a very happy smiley faced lady who said she was a emergency consultant who had looked at my ct results.
now remember i wasnt feeling to well, very tired and i told my wife to go home, this happy smiley faced lady then said to me out the blue i had bowel cancer and they were going to remove in theatre.
i had to ask her to repeat what she said again and with the same happy smiley face she told me again. i wasnt allowed to go anywhere at this point, i did call my wife and tell her what had been said, she didnt believe me and caused me to doubt what id been told, i was so tired i couldnt be acurate in what i heard.
anyways i had a bed up on a ward within the hr, some descent pain relief which was welcomed and i fell asleep. i was awoken by nurses who took me to a room along with my wife and they then explained my problem and what was going to be done in surgery.
this was on friday morning, they drew diagrams to explain, we both were still in shock and couldnt take it all in. i was told id be going to surgery shortly, i was prepped just after 9am but it was not to be, i was nil by mouth as i was now going on sat morning, sat morning came and went as did sunday.
on monday blood tests were done and i was going to surgery, nope didnt happen, my kidneys wernt performing properly and i wasnt fit for surgery.
it wasnt till wednesday did i go for surgery, i went at 9am and awoke late afternoon, jesus christ it hurt when i awoke, i couldnt move, tubes everywhere, i didnt know what to expect but i wasnt expecting that nor had i been told what to expect.
a consultant came to see me the next day and said half my bowel was removed and indeed the part of the bowel that was removed had cancer and it had gone off for tests in the lab.
i was told 3 months to recover, spent a week in hostpital and then home, i was too weak to get up and down the stairs so once upstairs i stayed there as i needed the bathroom more time than i care to remember.
anyways usual stuff that im sure youve all been through, injections, pain, tiredness, cant eat properly and everything that goes with having half your bowel out.
didnt like my scar when i first saw it, that knocked me for a bit. weeks passed, everyday getting better, staples taken out, could eat again, didnt need the bathroom as much and i thought everything was going to be fine.
appointment for clinic, saw my consultant who wasnt happy with the condition of the cancer removed and that they had also seen something in my left lung, i had to wait for the tests to come back.
test results came back and confirmed the cancer had gone through all four layers of my bowel and that it could have spread and this is the concern with my lung, wouldnt confirm if it was or wasnt cancer, i have found that no amount of questions through the whole process would they give a definative answer to anything i asked.
im told chemo is now required and that my genetic make up makes me suitable for chemo.
i go to see the consultant next thursday, i dont know what to expect and this worries me hugely, wife thinks the chemo is jst a mopping up procedure to make sure its all gone, my mind isnt allowing me to think that and that maybe there are other issues to expect after all i cant get a straight answer out of anyone.
so thats me up to date, i should add im male and 54 yrs old. i would welcome other peoples stories and any advice you may have. we have 2 boys of 5 yrs and 11yrs old, my wife is 49 and im left thinking this is all a bit to early in life to be having this isnt it ?.
sorry for boring the pants off you lol
the operation i had was to remove half my bowel from my right side which included the secum, appendix and the first half the bowel. i dont know what they called it, i was told but i cant remember. what i do remember being told was that the right side to be removed was uncomon compared to the left side.
Wow. That’s a lot of work. I looked it up is it a Right Hemicolectomy?
There will be others that have had the same op. I had a lower anterior resection with an Ileostomy.
You have a great attitude just go for whatever they offer you. Thats what I decided let them do their work Just look after yourself
Take care
Ann
I think you will find you had an extended right hemicolectomy. Same as me. It is easier to do the join from ileum to colon ( small tube fits into large tube) if Cecum, appendix etc are removed and stoma’s less frequent outcome
right sided cancers are notoriously harder to find/ diagnose due to few symptoms and usually found later therefore with higher staging number .. they tend to spread to liver first due to location ( from my understanding ). You might want to ask about if they found any vascular invasion ( IMVI or EMVI)
As we have said b4 if you got to T4 without node involvement you are very very fortunate.
Fingers crossed nodules are a red herring. !!
excuse my ignorance but what does vascular invasion mean ? imvi emvi.
ive only had one ct scan at the begining of this journey and my next scan is 1st dec.
my slight worry is that the second scan may show a different outcome.
theres a lot of waiting around with this cancer lark.
if you had the same procedure as myself can i ask your story and where you are now ?
cheers
ive just read your introduction.
if ive read that right its been over nrly a ten yr span.
how did you get all of that information ?
im told im having chemo and its important to start it as soon as possible my cholorectural nurse said.
it has been pretty quick from recieving results back to determine if i would be a candidate for chemo to a appointment for a treatment plan 10 days.
when you had your chemo what effects did you have, what could or couldnt you do with your life ?
ive got this idea in my head that i have a chemo treatment, go home and have a iffy couple of days due to effect of chemo, vunerable to infections day 4 to 7 due to low imune and then feal better until next round of chemo.
i dont supose its going to be anything like that is it lol.
how are you doing now ?
im able to walk about for a good amount of time if i pace myself, i have noticed my pace of walking is much slower than it used to be and thats not for the want of trying, legs feel very heavy. my patience is very short on some days, bowel movements tend to be directly after ive eaten so i dont eat if i go out, still tired and exhaust easily, i find im taking a napp in the afternoons, still, cant quite stay awake a full day yet but im 8 weeks in, i dont know quite what to expect, wife thinks im jst being lazy but its more than that, i feel complete lack of energy, early days i guess.
cheers
I am great now thnx
My breast cancer was 9.5yrs ago 2013
bowel cancer was October 2021 … went back to work 2 weeks after op … bowels 1-2x a day about 7am
Breast and bowel both unrelated
5FU chemo was fine. Worked 25-30hrs a week slight nausea but very manageable played golf etc etc .. my white blood cells never dropped to low levels with 5FU
they may give you capox or FOLFOX. Big boys stuff .. I had hardcore chemo (TC) for my breast cancer when you reach WBC nadir etc … so I’ve done both
IMVI = intra mural vascular invasion = OK ish
EMVI = extra mural vascular invasion = risk factor
both the above degrees of invasion into blood vessels
how on earth did you manage to go back to work after 2 weeks. i was still in great pain at 6 weeks, i still at 8 weeks on cannot roll over in bed at night, i can lay on my back but when i need to roll onto my side its a reasonable ordeal, its certainly one that i awake in order to be able to do and then spend ages trying to get off to sleep again.
i cant imagine swinging a golf club, ive jst done a little flat pack furniture today which has left me shaking and tired, i wonder why the difference in ability between you and i ?
my gran many yrs ago ( 37 yrs) passed away from lung cancer, my mother was so effected by it that she made it her mission to become a consultant for cancer, she would come home many nights crying and my father did everything to help her in every way, she retired 4yrs ago only for my dad to be told he had cancer, we lost him last december and its been a big struggle this yr without him, on the face of it she manages it well but deep down i think she is a wreck, then in september this yr im told i have cancer too, im her only son and it knocked her sideways, i dont know how much one person can take, she lost her mother inbetween time too.
how have you managed to cope, you have been through the mill i have to say ?
you dont have to reply, probably rude of me to ask
cheers
We all heal differently and our operations may have the same title but some may be very invasive.
Did you have open surgery?
I had my bowel lifted out and the cancer pulled out by hand. Surgeon told me six months. I thought no way I was wrong. All of my organs were sore plus the incision was from one side to the other I couldn’t lift either as I could have a hernia
I was very delicate
A family friend had same op apparently but robotic She made me look like a whimp But had none of the bruising and scars I had
I felt inadequate at the time
Don’t worry about the speed of your recovery It takes time to heal. Please don’t push yourself too hard. Lots of naps and good food. A little exercise is really great too
Take care
Ann
i had open surgery. ive a verticle scar from just above my groin upto inline with my man boobs. i was horified to see it go straight through my belly button, it freeked me out for a bit of time.most frustrating for me is looking down at my scar and its wonky, i like things to be straight so it anoys me no end lol
roboticly, i thought that what the americans did.
i did have bruising after a few days but not bad. seeing the staples made me feel uneasy
you shouldnt feel inadaquate, bit unfair of them.
what did you mean by " told six months, thought no way, how wrong was i" ?.
i dont rember feeling any organ pain as such, jst pain where my scar is, it does still hurt when i try to get out of bed or sit up or get up off the sofa, i guess it will get better over time.
when i mentioned it to my consultant he said it was early days and could take up to a year, i was shocked when he said that as previously i was told 3 months so when you said back to work in 2 weeks and playing golf i nearly fell off my chair lol, i must be the wimp.
cheers
Hello Christine58
Sor sorry to read your story! My husband is currently fighting advanced bowel cancer. We got the news last Thursday at his oncology appointment that after getting his operation to remove a 4-year-old tumour (since 2018 and not showing symptoms only to surface at the end of 2020 and therefore lying dormant and hadn't spread) in January this year and getting it all only for it to resurface in May this year and recently going through 4 cycles of maximum dose CAPOX that a recent CT scan has shown that he has had a spread to his pelvis and slight showing in his lung. We are absolutely devastated because he has been through so much and for the fact not once did we think the b****rd would come back and thought we were done and dusted. He had to come off his chemo for two weeks because his 4th chemo cycle knocked him for 6 and the oncologist thought he wasn't fit to carry on at this point because he has fluid retention in his legs and so has given him water tablets to take (which are fierce!) to get rid of the fluid and for the fact his kidney function is showing as being slightly reduced not much the oncologist said but enough for him not to start him on another form of chemo or other treatment. All his past tests on this chemo have come up normal blood tests, kidney and liver function. They upped his dose at the beginning of cycle 3 because he had been tolerating it so well and he went through that no problem then mid cycle 4 he began to feel really ill and we think this may have been the spread surfacing but don't know. He was doing so well getting his mobility back etc and now this has just set him right back. So, we see the oncologist again a week this coming Thursday to find out if he's able for more chemo or some other form of treatment. I wish you well
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