bowel cancer

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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

  • Hello 

    it certainly sounds like a long road to diagnosis for you. 

    if you click on most profile names you can read of others experiences and treatment. 
    the fact finding at the start and the waiting for a treatment plan is always the hardest part. They cannot really give exact answers only the facts as they find them out in histology reports. Sometimes those can take a bit of dissecting and the Drs don’t always have the time to go in depth. Make sure you get copies of such reports they will contain the most definitive answers and you should have a colorectal nurse who might help you decipher certain terminology. 
    Have they  staged your cancer yet ? 

    some people have nodules or lesions on their lungs from previous chest infections etc, they told me I had one and when they looked at my CT results from 10yrs ago it was there then and still unchanged. It might be something, it might not.  
    if your cancer hasn’t spread chemo will be a mop up hopefully for you. If they do find evidence of spread they will give you a different form of chemo. 

    try to make a list of Q before you go to see the specialist — keep them specific rather than vague and ask what is your staging. It sounds like you are T4 for depth of invasion but that’s not your Stage

    were nodes involved? If so how many ?  Is there cardiovascular invasion? Omentum involvement ? 

    any evidence of TIL ( tumour infiltrating leukocytes) ? … they are the good guys …. 

    hoping for  the best outcome for you on Thursday 

    Parky. 

  • hello

    thankyou for reply, ive not heard of any of those fancy words youve used and i dont know what they mean. lol

    i was told that "we dont tend to stage anymore" which i thought was odd, only it had gone through 4 layers of the bowel, 21 nodes around the area were taken and all tested clear.

    i was told it hadnt gone to the liver and not into my lymph nodes.

    nodes were showing on a lung but you may be right, i have chest infections every year without fail and have done for many years.

    only difference is last few yrs ive struggled to breath properly every now and again and cough, its like i cant breath enough air in, if i try to breath to deaply i just cough, a few days a week on average. sometimes a bit of pain on my left side.

    my wife and i both have our own notepads with questions to ask.

    i do have a colorectal nurse who has explained things really well about whats happened so far.

    see what they say next week.

  • Clear liver and nodes is a very positive  start ! 

  • Hi Christine58

    It sounds as if you’ve had an ordeal to get where you are and thankfully now you will get any treatment that’s needed. Do you know what operation you had? There’ll be someone here that’s been through the same

    Writing a list of questions to ask is a really great idea. It’s a lot to process when you’re having a consultation. My consultant talked for nearly half an hour in simple layman’s terms stopping and asking if I was okay. As he was explaining it in my head I was tick tick then when he said if I had any questions I replied you’ve answered them all. Not all are as good at communicating as him 

    Take care 

    Ann
     ‍Art

  • 21 nodes all clear is bloody brilliant tbh, nodes = lymph nodes these are designed to catch infection in the body, and shitty things like cancer, the tonsils for example are nodes, during surgery nodes are taken close to the tumour to see if it has started to spread. The lung things tend to be called nodules and are incredibly common, 1/2 of all people who have ever smoked will have them and can be caused by infection or exposure to chemicals as well...At the minute, based on the info youve given , Id say you are one lucky bugger!

  • ps so lucky that im tempted tp ask you to pick my numbers for tuesdays euro millions!!

  • dom1969  
    thank you. Did you read my bio? 

    I don’t think it’s from smoking as last year I was clear however I had Covid July this year and the cough that goes with it. The nodule showed up at my yearly scan this September

    I’ve got CT booked end of this month but I’ve been in A&E this week with a  blockage so I’m keeping my fingers crossed I’m okay  Home at the moment with beige food  There could be all kinds of reasons but Cancer is the bottom of my list  probably Ileus or a small hard stool.
    I’ve never talked so much about Poop before 

    I do feel lucky that FIT  picked me up and I have a wonderful team 

    Take care  

    Ann
     ‍Art

  • Whoop!! my reply was aimed at @Christine58 , apologies im awful at this tech stuff! 

  • No problem. We have the same then. Think it was my mistake. Looking back it was Christine58 I should have replied to 

    I’m off the boil this weekend. 
    Have a good weekend all. The weathers been good today hope it’s the same with you 

    Ann
     ‍Art

  • arh im getting nodes and nodules mixed up. it was nodules on the lung that they were concerned with,  in fact my consultant said he didnt like it at all.

    i shall be seeing a chemo consultant on thursday for what i asume will be a discusion for a treatment plan. 

    ive had my blood tests done prior to the meeting and lab results im told have confirmed im a suitable candidate to recieve chemo, i didnt realise that not everybody could have chemo, something to do with the make up of cells as to if chemo would be effective.

    it all seems so complicated this cancer stuff.