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.

  • Philip wasn't allowed home yesterday, he has developed a rare condition following the interferrence of his lymph glands, it's called 'Chyle', it's a fluid that comes out of wound sites, it scared and upset him because it was pouring out onto the floor at one point. They've put a bag over to catch it. It has slowed down and will hopefully stop. The quack wasn't able to tell us in an understandable way what it is why it is and how long it will go on for but he cant come home whilst it's happening. He had to have another scan which showed nothing of note. His dangly bits became very swollen too but have gone down as the fluid has leaked. According to the doctor the lab report shows the removed tumour had cancer in it so did one of the nine lymph glands they took out, I guess they're not allowed to fib so the operation was the right call. Phil cried at last! He confessed that he knew exactly how serious it was the moment they put the camera up him way back in March and he's been wearing a brave face keeping his fear to himself. To make his worse night even more awful the old boy in the opposite bed died and Phil overheard his final words which were "I'm in terrible agony" How about that for an aid to restful sleep! On a lighter note I walked with him to the loo where he showed me how he changes his bag and cleans up. I was so impressed with the easy way he managed it. The bag is in the wrong place for his waist band at the moment, hopefully once all the swelling has subsided it will be more comfortable.

  • Sorry to hear things aren't going too well at the moment. Try to keep as positive as you can for your hubby. We are here on the forum to support you

    take care

    hugs and good vibes

    stef x

  • Oh crickey, what mixed news that was.  The lymph gland fluid thing sounds gross and completely unexpected eh?  I don't think any amount of research would have shown that as a potential New Normal.  The right call indeed - this is a fearsome enemy and you and Phil have done right to take it on head-first.  Our men and their brave faces eh???  I think it's great that he showed you handling the bag - to me it would have been a bit worrying if he was furtive - to me it kind of shows he's dealing with it as a sort of normal body function already.  You two are doing really well it seems to me.  Give each other a hug and a pat on the back

    Lorraine 

  • Sorry to hear things aren't going too well at the moment. Try to keep as positive as you can for your hubby. We are here on the forum to support you

    take care

    hugs and good vibes

    stef x

  • You are indeed a force of good on here! I log on and read your messages and it makes me feel better. It's good for Phil that I have you to turn to. Thank you xxx

  • Hi,

    Sorry to hear about that unusual and unexpected complication.  Lets hope the medical team get on top of it as quickly as Philip started dealing with the colostomy.  It seems by showing you how he handles it he really wanted to reassure you that he's determined to adjust and get better.  take care of yourselves, Expat

  • I plugged an ipod in at night and went to sleep with it masking the sounds of the ward. It was the only way I could get any sleep. Although I had to be woken up frequently because I had an epidural and they had to test me for any loss of feeling.

    Home will be bliss. Hope he gets discharged soon.

  • 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

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