He says he'd rather die than endure a colostomy.

My husband's tumour has responded brilliantly to the oral chemo and the radiotherapy, we viewed the 'before and after' scans showing a huge tumour then no visible tumour. Yesterday the surgeon explained in graphic detail what is going to happen next: The remains of the tumour and a degree of healthy tissue will be surgically removed along with the lymph glands in that proximity. they will use keyhole procedures. There is a small margin of rectum that could be rejoined to give him normality eventually, having a reversable Ileostomy for a few months. If during the procedure they find it too difficult to rejoin or it doesn't heal properly then he must have a permenant colostomy. Philip says he would rather die than end up with a permenant bag. He says he would lose any confidence, he'd lose all his dignity, he says he wouldn't feel up to going out of the house and he wouldn't want to work in peoples kitchens and bathrooms any more. He says I would not fancy him any more. The surgeon did say that the radiation will carry on working but they have no evidence that shows the long term results because they are still learning about these new combinations of attacks on cancer cells. We didn't ask if Phil could forgo the surgery, I'm wondering if you can share any thoughts.

Parents
  • Hi there , should the worst happen and your husband ends up with a permanent colostomy, there is a possibility that he could use the irrigation method to manage it. I use the method very successfully and only need to wear a bag the size a a large sticking plaster - i can swim etc with no sign of the bag. I irrigate every 2 days and it takes me about 40mins in total. If you want more info send me a message or ask your husbands stoma nurse. Good luck with everything


    stef xx

  • Thanks for your reply.

    I think he's contemplating saying no to surgical intervention, he slept badly last night. He says it's not fear it's the wish not to lose normal bowel function. His tumour was growing for up to two years and was huge at the start now it's not detectable. The consultant surgeon said the radiation could carry on working, however it's early days with this combination of treatment so there's no data yet and no comparisons I suppose because surgery has so far interrupted things for all those prescribed it. Nobody can say what will happen if he doesn't have the debris and a margin of healthy bowel removed, it could be that it's all dead and will never pose a threat. The scans all show no other hot spots, no sign of spread to anywhere. Maybe it's a benign malignancy, one with no strength to regrow even if what's left are a few cells that have been filtered into his lymph glands.

    So far his cancer has not made him feel unwell, he did suffer the constipating effects of an increasing obstruction. The proposed surgery is complicated and will involve up to 8 hours of anaesthesia, of lying still. There are risks of leakage and infections, stuff he knows will make him unwell. What to do for the best, I dont know.

  • I have him all tucked up in his own comfy familiar bed, his sigh of pleasure and relief was huge. I shall make sure he rests and doesn't try to run before he can walk, we dont want him having to go back in! I have to give him a small injection every night for three weeks but long ago I was a psychiatric nurse so I can do it. I think it's to do with his digestive system but I haven't read the info. The chyle has stopped. On our way home we called in to our cafe, our children were chuffed to see him up and about and some of our regulars were there and wished him well. He ate a slice of cheese on toast and drank a latte then ate a slice of chocolate cheesecake, he looks as if he'll sleep for a week!

  • Hi,

    We may not have spoken for a while but I have been following your story. I can feel the relief in your voice just to have your husband home where he belongs. Well done to both of you and I hope all goes well and I hope you husband makes a full recovery.

    Best wishes, kind regards Brian

  • WONDERFUL NEWS!!!

    You will be one very happy little bunny I am sure.  I can imagine you standing in your bedroom doorway just gazing on your man, with a sign of happiness.  In our topsy-turvy world, it doesn't take much for us to be happiness-filled eh???

    Lorraine

  • Too true Lorraine! Thank you Brian. x

  • Wonderful news - tell hime to take it easy absolutly NO LIFTING a hernia is the last thing he wants especially if he wants to irrigate later

    love stef x

  • Stef I'd like to email you but it says your address is private? x

  • Hi ya you've got to do it by sending a PM is that what you tried ? - I would put it on here but i've been told you shouldn't because of odd bods getting on the site and using it for other things , have another go and let me know if it doesn't work on  the private messaging and i'll contact the moderators to see what they can do - once you get on the PM I can send you my personal e mail

    xxx

  • tried to send you a privatte message but youre not set up the moderators will do this for you

    xxx

  • Hi Swedes

    I will set up private messaging for you now. You can read some tips on how to use it here.

    Best wishes

    Jane

  • Hi just wondered if you could remember which horse forum it was just found out i will need opperation to remove cancer from my bowel ,but have five horses .Thanks Gail

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