This is the very first forum post! Welcome! :)
Thanks for creating this forum! Have you shared it around anywhere ? DO you want me to share it with my BC group? xxx
Sorry, got to stop using that font at random :)
The forum is brand new, so haven't shared it anywhere yet. It would be great if you could share it with anyone who might want to get involved? And the platform generally of course!
Hi! I'm so glad this site exists, I have found resources for cancer survivors are hard to find. It feels wrong to post alongside people who are still being treated or have a terminal diagnosis, like gloating that I made it to the other side and I'm still complaining. Thanks for creating mission remission xx
Thanks - that's so nice to hear you've found it helpful!
We still haven't shared the forum more widely yet, but if you know anyone who might want to get involved, please pass the site on :)
Just saying Hi (yes I'm a Man) but I won't hold it against anyone :)
I've started writing a little history and where I am now and how I cope and will publish soon.
Mutual support has made a lot of difference to me as I hope you'll understand.
Best wishes to everyone John
I'm new here, had my diagnosis and treatment in the space of 10 days.....which probably explains why I am writing this now.
I am slowly getting back to as much a normal life as anyone, and my greatest inspiration has without doubt been my wife who is Indonesian and a doctor as well, it was because of her pushing me to go get bloods, stool, scans & colonoscopy that I was diagnosed very early.
Happy to talk in any detail to anyone about my "journey"
Hi just joined after reading the piece in the Daily Mail.
I am nearly 6 years in after a diagnosis of ovarian cancer so consider myself very lucky!
I am 70 now and where 6 years ago I was fit happy and optimistic about life and looked a lot younger than my 64 years, following surgery and 6 months of Chemo I very much sruggle every day.
I spoke to my Onocologist and said what happens now you have discharged me. She said we are aware of the lack of support for those in remission but at present we cannot offer that help!
Seeing this website reminded me of her words so I will send her this link so that she can finally say “ try this website it is there to help and share with those like yourself”
Hi all, literally just found this site...bit of a night owl these days. Almost two years since curative surgery for bowel cancer, like Graham Indo, (Hi Graham) all over very quickly for me. GP cos it wasn't normal for me, sigmoidoscopy then colonoscopy within days, surgery within 2 weeks, diagnosis stage 1 ten days later. I was still coming to terms with "I need to operate" when my surgeon said " see you in 12 months".
Constantly being told how lucky I am...they should try a high anterior resection of the bowel, followed by a large haematoma leading to nasty incisional hernia which in turn required surgery a year later. But I don't have cancer. I know that friends, relatives , even much loved and loving ones, don't want to talk about it so I don't. But I think about it in the dark.
Hi Mumsiep .......You were doing great until you got to the bit ....."try a high anterior resection of the bowel, followed by a large hematoma ......" sounds scary stuff......I feel so lucky really really lucky, but you know what, lucky ???? really ???? I had a right colectomy, surgeon took 1.05 m (yes 1.05m) of my bowel and now my toilet habits are akin to playing Russian roulette :-).
I completely understand where you are coming from, I really do, but when I read stories about these poor people who are at stage 4 before diagnosis have chemo & or radiotherapy, then I kind of feel like a fraud for saying I had cancer....do you follow?? I'm sure you do.
How is life for you now? toilet habits getting any better? how about your "smells" when you have to let one go ......see I said I would talk about anything....my wife now wont sit on the same sofa as me hahaaahha bless her.
Please let me know how you are getting on with bowel habits, I really do want to know. anybody please tell me your story too, it really is good to talk....I met a 75 year old guy the other day who happened to be my first ever encounter with a fellow bowel cancer sufferer....I was introduced to him, then when I found out what we had in common, I hugged him and cried...... it was a special moment, he was 15 years post surgery Mr Koko
Good morning Graham...not sure it's morning in Indonesia but not to worry! I share your feelings of being a fraud...my daughter runs a cancer charity here in the South Lakes area of Cumbria so I've met many cancer patients and their families ( always someone far worse off than you) people who are or have experienced the full range of cancer treatments. Apart from surgery, I have needed no treatment and do realise how fortunate I am. It's the psychological effects of the diagnosis that have most impact though and they are not diminished by not needing chemo etc.
As to effects...I work hard to control my errant bowel, if I don't it just doesn't work and that is horrible. Wind...oh yes, lots of it. We have two dogs so I blame them, my lovely family know it's me but go along with my deception! Supermarkets and shops though are a different matter, only way to deal with that is to casually look around with a wrinkled nose and a "goodness me, who was that" sort of expression. Flying...pressure changes on take off cause the gas in the gut to expand, once pressure sorted gas has to go somewhere 😳 . I too talk to everyone I meet, tell them the signs and symptoms, I'm an unashamed bowel bore. My mantra...don't be a fool, check your stool.
Hope to continue speaking to you and others in the future.
Good afternoon from Jakarta (shhhh we are on the way to Bali for the weekend)
Thanks for your reply, I need a dog 🐶 for sure. It was so funny yesterday I was at the immigration office here, amongst less desirables (not Indonesians) and I thought shall I ?? It’s nice to share right.... can’t think why they moved away 😂😂.
I also go through periods of feeling low and down, I really shouldn’t as I have all I need in life, great wife daughters grandkids the lot, but I suppose that’s par for the course right? Maybe it’s my mid life crises kicking in or I really need to see my family.
Well today has been a dodgy tum n bum day and no source can be identified which is really annoying . Maybe I should eat something really spicy 🌶 and see how that works😂 have a great weekend and keep holding them in or letting go as you see fit 😂😂 bye for now #happyweekendinbali
Hello I'm Lou,
I'm 36 with a beautiful 16 year old daughter and a 13 year old son and the most amazing partner.
I finished Chemo 5 months ago for stage 2 bowel cancer and had major surgery to remove half my bowels and a couple of Lymph nodes that it spread to.
I now feel like I've been dropped into the middle of the ocean and told to get on with everything as normal 😕, I don't think after having such a large tumor removed I will ever be back to me , granted I've not ever been normal but that would be boring I think lol.
Its very nice to read other people's views on the affects after and know that I'm not just going mad.
Hi Lou and welcome to that place called "the new normal".
I'm still trying to work out what that means to me ( 2 years on from diagnosis and curative surgery). I do everything I have always done, go to all the same places and look the same...2 years older though! I suppose my new normal is the tiger that comes in the night or when I'm alone and quiet, that feeling of panic if I have a cough or a twinge of pain somewhere, the fear that it will come back. My new normal is also my guilt that I survived without the need for all the treatment that others have to go through, the guilt about not being terminally ill. My new normal is being in a crowd and wondering who has cancer. To everyone else I am no different, just a bit of a bowel bore. Friends and family tell me how lucky I am.
Normal, whether old or new is what you make it. Cancer taught me never to take anything for granted ever again, it taught me that being argumentative or unkind takes far more effort than letting things go. I believe I like the post cancer me better than the busy, ambitious, assertive me that I was before. Apart from that insidious tiger in the background, life isn't half bad...and I will shut that tiger up eventually, probably bore him to death.
Rest and relax, enjoy what sounds like a lovely family, you certainly deserve to. X
Hello lou l don't think there is ever a normal after cancer. My problem is that just 18 months after cancer everybody around seems to have forgotten how it affected me. I don't want to be wrapped in cotton wool but it would be nice for people to ask how l am occasionally it is a taboo subject.Any cancer survivor never ever forgets what they went through. Regards Linda x
Just read Snooz.... 's posting, and know exactly how you feel. I am still alive, as my oncologist reminded me when I asked for help with handling long-term side effects, but there needs to be an acnowledgement that some of us (Macmillan says it's 20%) have horrible side effects. One is made to feel one is complaining when I try to get exercise to prevent any more falls after spending 3 months in hospital beds because of osteoporosis as a result of drugs. Neuropathy has only just been acknowledged as a side effect, yet this has been known about in the States for years. Can we exchange info about what others have discovered, from Australia to USA, and stop thinking the NHS will help us - because it doesn't seem to know how.
Claire: I was sat feeling upset that everyone I met today seems to expect me to back to the old me now treatment has finished and ‘you look so well’ comments. Reading through this amazing site has reassured me I am doing Ok and I will take it at my own pace.
Claire take it as your body and mind needs there is no limit on how long it will take any of us to feel as we would like. It's been five months since my chemo finished and people are assuming I'm straight back to the old me, but not only has my body changed but the way I feel about things, yes the comment's "oh you look so well now" or I've actually had people staring at me up and down looking for a bag on my side😔, I now look straight at them and say "oh are you looking for my bag, well i was very lucky that I have not got one" . I am finding people can be rude and heartless in what they say or the way in which they put it. Keep your chin up Claire and if you would like to talk I'm here 😉, nothing worse than feeling alone.
Mumsiep we do the same things but somehow it just feels different when doing it, I sometimes wonder have they missed anything as It took them over 11 years to believe how much pain I was in and how poorly I was, but on a positive I now look on the bright side of most everything 😀 and feel so much better when I do. I think we the people on this site should all meet up and have a good chinwag and lots of tea.
LindaH I totally agree with you people do forget all to easy as it was not them that went through it physically or mentally. I have family members that didn't even come visit me and still haven't so I chose now not to be with people like that, stick with happy smiley people that do care and ask you how you are, So how are you? Have you been up to much lately?
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