For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
Hello every one!!! just thought I would tell you all a little bit of my story so far. I didn't know this page was even here and I have been looking all over the internet for chat groups with other people in my position.
I was diagnosed with bowel cancer on the 11th of April (my sons 6th birthday), I went to a&e on Tuesday the 8th of April with trapped wind and constipation ( NO OTHER SIGNS ). I has an emergency colonoscopy early hours Wednesday and had to stay in hospital. on the 11th 2 surgeon's and colorectal nurse came in my room and told me unofficially that there was a mass and they said it was cancer.
I had my surgery on the 10th of may. They found 3 masses and as a direct result of that I have ended up with a stoma. ITS NOT AS BAD AS I THOUGHT IT WOULD BE...…
i now wait on the 24th to find out chemo start dates. I will be having in my own town and then at Christie's as I need a type that my town cant provide.
I'm a 35 year old mum of two amazing boys who have and married to an amazing husband. I will never except nothing but a clear outcome. I will fight with gloves on or off but I will get there.
A big welcome to the forum . So glad you found us . You sound as though you are doing very well indeed despite a difficult situation .
Everyone here is very helpful so feel free to ask any questions .
Take care ,
Wow that must have been one hell of a shock but I’m loving your attitude! You sound to be recovering well from the surgery and it’s good to hear that the tumour is now in the bin. Do you know what chemo you’ll be having? I think Christie’s is one of the best hospitals in the country for cancer treatment so you will be in good hands.
Glad that you sound to be coping with the stoma - Ian aka The BODACH is the resident expert over on the Ileostomy, Colostomy support page and he’s full of top tips and advice if you’ve any issues.
So a big welcome to the board from me and feel free to ask anything - do not google! - there is nothing too daft or embarrassing
im just doing days, I've done today and tomorrow I will see how that goes.
i dont over think things and if I can help it I DONT GOOGLE LOL.
I know I'm in the best care and I know all will be done to help me get over it. I don't understand lots but I also don't ask a million questions. Going to Christie's is worrying a little. Do you know anything about Heat treated chemotherapy as that's what I've been told I will be having there after chemo in my own hospital. I did google the heat treated one and sort of regretting I did. But in genral i am ok, I'm positive, I'm getting over surgery well after a few hick ups when I was in hospital. To be honest I'm missing going to work and doing things I cant do at the moment but I know it will come soon enough.
i will know start dates on the 24th when I see the oncologist, I was told I will be having 'standard' chemo first at my own hospital ( I mean standard as i don't know which type yet )
At Christie's I've been told it will be heat treated chemo that will straight in my belly. I've googled it.... I wont again lol
stoma is fine. I'm copying well even with a few near misses lol x
You are quite right to take it one day at a time and focus on your well-being . My mum only ever addressed the next step in the process and what was required to get her to that next step . If you click on my username you will see she has faced up to quite a lot and living a very good life in spite of a difficult situation .
Did they mention Hipec therapy to you ?It’s heated chemo into the abdomen. I think Christie’s does carry it out . They are a centre of excellence and will take good care of you . You have to watch with Dr Google as a lot of the articles are retrospective and do not reflect the current achievements coming through . A rear view mirror if you like but that is the nature of oncology as it’s often taken over five year slots . My mum preferred to play it forward . More is it a good plan and how skilled are you ? She never googled anything . Of course I did and ended up here . Ha .
A lot of people do work through chemo .
take care ,
Wanted to say hello....your story sounds a tad similar to mine!
I got ill the day after my sons 6th birthday in March! Turned out to be sepsis....found to be caused by a tumour perforation my colon! I had no bowel cancer symptoms either.
Anyway had my surgery and have had 1 FOLFOX chemo treatment 2 weeks ago (wasnt so bad....although it has definitely upset the wee bit of bowel I had left lol) so far. Was supposed to get it every 2 weeks but my blood levels are too low to get it tomorrow....so next week it is.
I returned to work last week just doing 10 hours a week. But feel better for it....nice to have some normality!
Love your positive attitude!! I am the same....defo Vs up to cancer
Good luck with your treatment!
Hi and my welcome to the online community and I am pleased to hear that you have come to terms with your stoma and are getting ready to start your chemo sessions. I like your attitude in looking for nothing less than a clear outcome and I hope everything works out to plan.
Accepting your stoma makes managing the rest of your life a lot easier.
I'd like to invite you to join us over in the Ileostomy, colostomy and stoma support group and introduce yourself to the other members.
If you need help with any aspect of your stoma management give me a shout in either group and I'll do what I can to help you whether it be pouches and their problems, products that you might need, clothing, food and diet, clothing and support garments and I've even been known to answer questions on the personal things in life with having a stoma that you never thought you'd ask a stranger but I'm here to give you help support and advice on any topic you need to ask about.
The door to the online community is always open no need to knock just come on in and ask away.
If you need help or need to discuss anything about having chemo then the friendly members of the Chemotherapy group are waiting to hear from you and you can join them by clicking on the green text above which open up a new page where you can join the group by clicking on, would you believe. Join this group then you're all set to start a discussion or add to an existing thread.
You can help the other members to get to know you by cutting and pasting your post above into your profile simply by going to your home page clicking on edit my profile and pasting your journey above in your profile box and pressing the save button, it really does help others to know how to respond to you.
They call me the Bodach and I'm here to help you at any time you need to ask something no matter how small and trivial you might think it is, if you're thinking it ask it we'll give you the answer and your problem will be solved and you can move on.
Keep in touch
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Living with incurable cancer - incurable patients only / End of Life
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The BODACH is LIVING WITH A ST● MA
Its scary how much life can change in a heart beat.
I was told they was sending me home that night but they was just going to give me an xray, after that I knew something was wrong as it was ct scan and then mri and colonoscopy.... never in my wildest dreams did I think it was that.
I've not told my two boys age 6 and 9 in a few weeks. if I can help it I don't think they will know till of adult age, they would never understand and I know my oldest will deffo google things and be mortified at what it brings up. I know I am some times lol.
I am looking forward to the meeting on the 24th even tho looking forward to it might be the wrong word. I would just like to know what they have to say as I had to have pet scan last week so I know the results of that will dictate what chemo I will be having. I don't understand types of chemo at all. so im sure I will come away with a better understanding of what its al about.
yes I miss normal. things like I love my garden and this year is a mess. it annoys me when I look at it because its never been like that. its sounds like daft stuff but its normal stuff.
my house is very clean and tidy tho haha.
All the best. Be positive.
Welcome to the forum. I was interested to read your story as your symptoms sounded similar to mine (the trapped wind caused me severe pain). No bleeding, although in hindsight I did notice a few weeks prior that my stool were pencil-thin; the relevance of that did not occur to me until after the diagnosis.
May I ask if you had any other GP / A&E visits before 8 April? I started off with calling 111 due to the severe pain, who advised me to seek medical attention urgently. Off to an UCC where the nurse basically suggested I had IBS and told me to go away (not in so many words, mind). 2 x GP, 1 x A&E because I was in agony that day, and then finally the GP again with everyone telling me that I was simply constipated. Finally A&E at another hospital where I was diagnosed with a blockage caused by the tumour.
I am currently busy with a complaint against the first A&E department that I visited, and had just heard that they consider it completely appropriate for me to be diagnosed with constipation that night (that after I had no or almost no result from five days of laxatives, five days of suppositories and then finally the enema administered at the hospital). Obviously I am not going to leave it at that, so interested in hearing other people's stories particularly in the younger age group where many doctors consider us "too young to have bowel cancer".
In the end, despite the hell I went through before the diagnosis, I was fortunate in that the cancer did not spread so I don't need chemo. That is where most of everyone else on the forum are the true warriors, because you will be fighting a battle I will (hopefully) never know.
All the best, and let us know how you get on.
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