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How do I help my husband, what to expect?

Pipchick
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My husband is just over two weeks post op from bowel surgery of which was to remove a mass in his sigmoid colon, the operation didnt go to plan as it would seem the mass was larger than thought and had penerated the bowel wall to the uretha and blood vessels therefore, chemotherapy will be require to shrink the mass before another operation to remove it. My husband ended up with a stoma as the mass was blocking his colon and only returned home on Wednesday however, says he feels awful and sick, wont eat and hadnt changed his bag until I supervised last night. I dont want to be ringing the hospital every five mins about him but as I have to work and look after our 3 year old I am unsure what else I can do, should be looking out for. I am always positive around him but deep down I am worried sick, xray staging of the cancer pre op was T3N2M0, will have another scan in the next couple of weeks for staging before urology appointment on the 7th June to discuss chemo. Any help or advise much appreciated, 

  • Hi Pipchick, 

    I'm sorry to read of the complications that occurred during your husband's bowel surgery and that your husband is not feeling well since he's had the stoma fitted. We have another member on the forum - [@Taff]‍ - that has experience of living with a stoma and may be able to help with some tips and advice on what to look out for and now I've tagged him in this post he hopefully he'll pop by when he can to share his experience with you. I'm also including some information we have on our website about having a stoma and a link to a discussion on the forum about bowel cancer which still has quite a few members posting so you may be able to get some information there as well. 

    You're doing the right thing by contacting the hospital for help and advice but if you don't want to be contacting them too much maybe you could find out if there is any outside support available to you and your husband at this time?

    I hope this helps Pipchick and that things start to get a bit easier in the next few weeks.

    Kind regards, 

    Steph, Cancer Chat Moderator

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    Hi Pipchick,

    As Steph says, I have two stomas; a colostomy and a mucous fistula. Apart fro some minor practical issues which can be solved by experience, practise and sometimes surgery, mentally and emotionally, I've no problems at all.

    Practically, I'm always aware that I have the bags because there's various things to consider. If going out, I always want an empty bag to begin, preferably a fresh one. I have to keep some air in the bag because of pancaking but not too much, lest any extra might cause a blow-out. Basically, I must always be aware of how much output is in the bag and will often plan a time for a future change.

    Unusually, I have to change bags at least every day, sometimes two or three times but that's particular to me and the way I keep the parastomal skin healthy. And keeping that skin healthy is a priority and will save many problems. Some people though can get up to a week before needing to change.

    Anyway, without knowing what specific problems you may have, it's difficult to advise but feel free to ask anything and everything and I'll help where I can.

    Cancer wise, I'm in the enviable position of having cognitive impairment. I'm forced to live in the moment. It also means that I don't care about having cancer.

    I know that to some, that will be offensive but it's just the way my brain is, due mostly, I think, to the meds. But it's tremendously freeing in that I don't and can't ponder on things and have no anxiety about waiting for test results or wondering when my cancer will reactivate. And it will at some time.

    Safe to say then that I can confidently advise that living in the moment, being 'sufficient to the moment', is for winners and if possible, the way to proceed. Deal with what's in front of you now and that's enough. The next moment will be along soon enough.

    One practical thing you can do is 'get affairs in order'. Get it done soonest then forget about it. Another is sort out any benefits you may be entitled to; PIP and ESA for example.

    McMillan do a one off payment to help with things such as beds or special chairs and other such stuff, worth investigating. Otherwise, I've found them less than helpful.

    Hope something I've said can be of help.

     

    Best Regards

    Taff

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