March 2015
Hi, My 61 year old friend recently underwent emergency surgery for bowel cancer. The results are good. She has a Stoma and tests indicate that the cancer was removed. She has been offered chemo to 'mop up' any rogue cells. It will be 6 month of treatment then she can look at a stoma reversal.
She is unsure whether to have the treatment or rely regular checks.
I don't know much about bowel cancer. I had tongue cancer - it was surgically removed, no treatment. Despite PET Scan and regular monthly checks, I found a lump in my neck 6 months later and had to have a radical neck dissection then radiotherapy.
So, given my experience, I want to tell her to have the treatment - but I know I know her cancer is different and she has to make the decision for herself.
At the moment all I have said is that she could get a second opinion and that what ever she decides she has to feel comfortable with it. I can't decide for her.
Any advice or personal accounts would be welcome.
Thanks
CJF
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May 2013
Hi Amelia Jane,
Yes, a crappy question but maybe one that people ask to show that they are listening to you and trying to hear what you're saying - I like to think that anyway. I guess I agree with Julie - "shared not extracted."
What upset me were those who just said,"it will be ok - everything will turn fine" - I felt that they weren't listening and were a bit dismissive of my illness and what the treatment entailed. Maybe they were putting on a brave face but that was not the support I needed.
CJF
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April 2013
Hi G,
Welcome to this site. I am not a regular contributor but I know that when I do 'drop in' I find people who are experiencing similar things and heaps of support.
I hope you and boyfriend find out what's going on asap. It's all pretty disturbing but once you know what you're dealing with at least you can work out the next step.
CJF
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August 2012
Hi Rita,
Your friend is lucky to have you. The best thing you can do is just be there.
In terms of food, when I was feeling really sick, i seemed to tolerate banana on toast. Weird but it worked. Also silken tofu - japanese style, and miso soup - there was a Japanese shop opposite the hospital. My friend also gave me a vegetable soup base/stock from the health food store which was full of vitamins and tasted great - a little salty but I liked that. I also tried to eat simple foods - vegetables etc that did not put a strain on my body.
Sustegen is also a good option - full of essential fats and vitamins. Small bits of food often is best.
Stay strong and know that we are thinking of you and your friend.
CJF
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May 2012
I am participating in the project too. I received and returned the saliva kit a few months ago. I haven't heard anything back but assumed that 1. my saliva was not usable ( I have very thick and sparse saliva) and 2. I had had a re-ocurrance of cancer so thought maybe my sample was no longer usable. I did communicate my cancer status and received acknowledgement so maybe the test just take along time.
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February 2012
Just got the results back from my melanoma removal - all gone...cut out...no spread. I feel relieved but have been here twice before - tongue and then neck. Surely It's over now.
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February 2012
Hi Leesa,
I've just caught up with your messages so am not sure of your cancer and previous surgeries but this is my experience.
I had 7 1/2 weeks radiotherapy to my neck after tongue cancer and neck cancer. My throat became very raw but as the tongue and subsequent neck surgery had left everything numb, the pain was not too bad. I had all of the anaesthetic medicines etc and still managed to eat enough to avoid a PEG. I ate tofu and other solid soft foods but really soft foods were to hard to swallow.
My neck became very red, sore and it peeled and bled. The oncologist was fantastic and gave me cream - they all seem to have their own preferred cream. I also used the juice of the aloevera plant on my neck after I finished treatment and drank aloevera juice. The worst side effects were feeling sick - I eventually asked for medication, and the tiredness. It lasted a long time - I feel like i lost a year.
5 years later the tongue and neck cancer has not reappeared. Recently I had to have a tooth removed and underwent 6 weeks of Hyperbaric Therapy to promote healing and avoid ostoesradionecrocis - basically dead bone caused by radiotherapy - ie the jaw. The treatment seems to have been successful but there have been a couple of unwanted side effects. I may not have developed osteoradionecorosis without the therapy, but there were a number of patients under going treatment with me who did have terrible trouble with their jaws. Radiotherapy can certainly affect your jaw and teeth. I went to a dental pathologist prior to the radiotherapy who prescribed gels and mousses to strengthen my teeth before radiation. I have only lost one tooth so one gap is not too bad, although combined with a '3/4' tongue, eating is still difficult. Hopefully i won't loose any more teeth.
You are faced with a difficult decisions - and not many options. We all need to do what is right for ourselves so I guess my advice is get all the information and expert advice you can so your decision is the best one for you.
thinking of you
CJF
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