Hi all, it's been a while and there has been the most amazing progress that I have not dared to believe possible but my mum has had surgery!!! It was the most dramatic of weeks thus far when we went for her normal appointment with her consultant prior to chemo cycle #4 and he was concerned as he could see that the ascites was still there so ordered an urgent CT scan. He also told us at the same time that the surgeon had just told him the date for which she was booked for surgery. Chemo #4 was cancelled, the CT scan confirmed that chemo had only been partially successfully where some sites had responded to chemo (hence a reduced CA125) but some sites had not at all (hence the continued ascites) and with the mixed response to chemo came mixed emotions. We were extremely happy to hear about surgery but also scared for what would come.
The surgery was 9 hours long and the surgeon absolutely fantastic. I am so grateful to him for saving my mum's life and in turn, mine aswell. She is doing so well for having had ultra radical debulking surgery. In the end, other than the laparoscopy, she had a full hysterectomy, removal of the omentum, peritoneum, liver moved, diaphragm scraped, bowel restructure and does now have a permanent stoma. She is due to be discharged on Sunday and I do feel like this has been the biggest test so far but I was wondering if anyone had any good tips for discharge especially in terms of the stoma.
I am glad your Mum has come through the surgery it was a long one for you both. I can only suggest loose clothes and shoes or sandals she can slip on easily. No doubt the hospital stoma nurse is available before discharge for advice. Perhaps you can contact district nurse on Monday to have her monitor dressings etc. Most of all there is an advisor you can ring on the Ovacome helpline. I wish your Mum the very best and take it in baby steps. Every day she will feel a little better
CancerCarer, There are many different types of stoma bags, both one piece and two piece, with resealable closing or without closing. It would help your mom to have the kind with a velcro closing that you can EMPTY and easily reseal! These are sold in US by ColoPlast and originate from Hungary. Two part bags (gasket plus bag) can EXPLODE when the bag becomes detached from the "gasket" if bag becomes too heavy or filled with gas. After 7 months of stoma wear and trying at least 8 different kinds, I discovered that the ones that "snap on, snap off" LEAK odor and sometimes stool. The point of failure is where the gasket "snaps on, snaps off". The one piece type had NO ODOR AT ALL and allowed me to function socially are the "ColoPlast SenSura one piece ostomy pouch" with roll-up resealable closing. With the proper bags and proper fit, your mum will be fine. Feel free to ask any questions, this is a common part of OC that people, sometimes, are reluctant to share. I'm happy to save your mother worry and discomfort by sharing what I know.
Thanks Tesla. An expert in Stoma-wear it seems! We are still finding our way with the stoma, it is still a foreign object to us. She has the one piece bag with the velcor closing at the moment but is likely to change to the closed bag after a couple of months. We are still having to cut the size of the bag to fit the stoma at the moment which we find 'a bit of a faff'. Any tips there?
Hi , I can't give you advice on the stoma as I did not need one, but I won't to send my heart felt best wishes to you both , When your mum is home it will take a while for her to recover, from the surgery she must be kind to herself and just take it slowly. Then on the path to good health..Lorraine xx
Thanks for your kind words Lorraine. She is taking it slowly but she was talking about a holiday yesterday which is a great turn around as she was very much huse bound with ascites before the surgery.
Its amazing what our bodies can endure isn't it ?... I was speaking to another lady last week at the Penny Brohn centre, with what seems the identical journey that your mum has / is going through..
The amazing side of this is that her journey started 15 years ago !!!
Once mum is better and depending on how she feels about it, it may be worth her attending a couple of sessions?
I had a stoma for the past year and personally I have taken to it really well.. obviously the first few weeks were daunting, but after that it just comes as second nature ..
Hi Jackie, my mum is 70 and enjoyed a 9 hour operation, the bodies are amazing and so is the strength that she holds. Wow! 15 years ago. That's great news and news of this is so few and far between. My mum was actually discharged on Saturday, early, since she was recovering so well!
This is great news for you both. Sorry I can't help with the stoma. My bowel has been saved for the time being. I think there's plenty of people out there though so you should get loads of help.
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