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...
Hi..I am feeling like I am in a dream. I went for a colonoscopy last Friday after being referred by my gp due to a change in bowel movements. Although it was in the back.of my mind that it might be bad news it was still a shock to be told by the consultant that she had found cancer. Have been living in limbo since then carrying on with every day life and feeling totally normal.
I have a ct scan tomorrow so I'm hoping to find out soon the stage grade etc. Was just wondering what the wait will be and what will happen next. Probably should phone the colorectal nurse team but that would make it too real.then.
By the way I am 48 generally fit and healthy and a non smoker and light drinker. My family have been really supportive and lovely.
Hi Daisy May and a warm welcome to the board from me.
You sound like I did when I was diagnosed - shell-shocked but carrying on as if it were happening to someone else. The waiting for scans, results, meetings etc. is very stressful but things will feel a little once you have a plan in place. Once they’ve had a look at your scan they’ll advise you of a preliminary staging (your ‘official staging’ will be after the tumour has been removed) and a treatment plan. Depending on the size and position of the tumour, you may go straight to surgery or have chemoradiotherapy to shrink it.
Ive attached a link to a booklet which gives a bit of info about bowel cancer and treatment. It’s good to hear that you’re young and fit and healthy as it all aids recovery.
One thing I always advise is not to google. The information is out of date, misleading and downright scary in places. Stay on here and the Bowel Cancer uk site and ask anything you want - there is no question too daft or embarrassing.
Take care and let us know how your meetings go
Hi Daisy May, I found myself in this position about 6 weeks ago, I turned 40 in May and similar to you raced triathlon, non smoker and don’t drink a lot. We also have no family history of Bowel C.
For me the 2 weeks between diagnosis and waiting for the scan results was the worst part. The next steps were I went for a CT scan and MRI - then I went for an interior ultrasound and got my results 2 weeks after my colonoscopy.
if you feel normal that’s a positive - I had no major symptoms and my bloods even came back clear. It’s easy to say but do not Google anything!!! I was expecting them to say if I had it it would be a quick op and nothing else (most people I came across who had had Bowel C seemed to have this). But mine was low down so needed chemo radiotherapy first before an op.
Try to take each stage at a time, the word C puts the fear into everyone but often if it’s caught early the outlook is positive. My consultant said to me if you are going to get C, this is the one to get as it’s highly treatable.
Anyway good luck will be thinking of you
Hi Daisy May,
No none of it seems real at this point, even after the CT you won't know any more, the doctors take your case to the MDT where all the relevant specialists revue the results and decide the treatment plan, and then you'll get a letter to go to outpatients where you will be told what the staging is and how they intend to proceed.
I did all this a couple of months ago starting with an abnormal screening test. Don't be surprised if your emotions swing wildly especially in moments alone this is probably the worst moment of your life so far but it sounds like you have gotten onto the case quickly. Carry on as best you can because once you are told your first thought will be I want to be rid of this as soon as possible.
They grade the aggressiveness of the tumour usually when its removed and they do remove all tumours that are operable.
I have just finished this part and gotten my result and in my case they believe they have treated it surgically so I now go onto yearly scans and colonoscopies, so just a matter of recovering from the operation.
Hi Daisy May 090819
Welcome to the group. It does come as a bit of a shock, particularly if one is normally fit and healthy. The waiting is the tough part. You already have some good information on what will happen next (and I can't comment too much on that since my case was a little different; I was diagnosed in an emergency). My top tip would be to just take one thing at a time. And do call the colorectal nursing team if you feel you need information from them - they will become your valued travel companions on this journey.
All the best, and let us know what happens!
Firstly, I'm really sorry you find yourself on here, as wonderful as most people are on here I think we'd all prefer not to be on here. Much of what I say I've posted before, people must be really bored of reading it and it will repeat alot of the good advice offered by others. I was diagnosed the week before Xmas '17, there is no good time. You are in THE worst part by far in my opinion. Prior to going in DO NOT GOOGLE anything. I looked afterwards & found there's some very weird and not very wonderful stuff. If you have any questions, and you will do, ask the team who will care for you, or the support lines on here. Google is to be avoided at all costs, I looked after surgery. My favourite was a woman living on the California/Arizona border. She advised giving up all food completely and sitting outside for 8 hours a day to take in the 'nutrients sent by nature', clearly she had never wintered in Liverpool!
Keep a paper/pen handy & jot questions down as they ‘occur’ to you; you don’t have to ask them all. Make sure someone goes with you to all meeting armed with pen/paper - ask them to note down what is said - especially any letters/numbers referring to your diagnosis. There will be a colorectal nurse present, make sure you get their name, number & email address, they are incredibly useful people.
There are a couple of, I think, important things to consider. A cancer diagnosis means you are entitled to free prescriptions, if you don't have them already book an appointment with your GP to get the necessary form. Consider sleeping tablets. I’d never taken them in my life, but got some from my GP & took one on a couple of occasions. You will need to get some sleep. Try to keep busy on routine things - only an idiot would say don't worry, but I'm sure the reality will be better than you expect. You may find yourself getting irked by trivial things. I was diagnosed at Xmas - the radio kept telling me it was, ‘the most wonderful time of year’, I didn’t agree. Also I suddenly noticed the sheer amount of ‘cancer adverts’ one encounters on a daily basis, they suddenly seemed to be everywhere. I also got exasperated with the hand holding/head to one side type offering advice such as ‘be brave’ as if it was a conscious choice to get cancer.
Try to focus on things you do as a family. For my family it is football. I went back to Anfield a month to the day after surgery - recovery is that quick. The surgery was nowhere near as bad as I thought it would be, the most painful moment was when I persuaded my wife, a hardworking doctor, to take a break from looking after me and go with the rest of the family to see LFC Vs Spurs. Mo Salah scored a brilliant goal in injury time and I inadvisably tried to leap off the sofa in delight; BIG mistake, that hurt.
Hospitals are hot, the Royal Liverpool was at sauna level in January! This and the fact you will hardly eat anything at first meant drinks are really important. The g/f of one of my son's had a relation who had just had the same operation - she visited armed with frozen fruit drinks one day & a Costa to go go another; both wonderful. I had the op on a Wednesday and left hospital on the Saturday, three days later. You will be far more comfortable at home. Once home you are going to sleep, a great deal. It was a week before I went out of the house, but I was back to walking 10,000 steps a day within three weeks. I also took up running to raise funds for Cancer research, I absolutely detest running with a passion.
The period which you are enduring is by far the worst. Things DO get better. In January 18 my thoughts/worries were everywhere, but they soon returned to focusing only on how the Reds were doing. The waiting is awful but somehow it passes. Now I think in the future if 2018 is mentioned my first thoughts will not be about the diagnosis & surgery, instead they will be those fantastic nights when Liverpool rolled back the years and destroyed Man City & Roma in Europe. Since surgery we've also travelled widely including SE Asias, S. America & Antarctica and of course Madrid; so don't believe all the post-treatment horror stories.
The post-surgery time was for me far easier than the weeks before, I hated the pain killers so stopped taking them, and I am definitely at the 'wimp end' of any pain scale. Hope everything goes as well as possible - if there's anything I can help with feel free to ask.
Hi Daisy. I’m so sorry to hear this. This is exactly what happened for my partner last October. He was referred for a colonoscopy after bowel changes and the colonoscopy found a tumour within minutes. We half expected it but also nothing ever prepares your for being told you have cancer.
That was 10 months ago. Since then we (I always say we, even though it’s Steve’s cancer) have been through hell and back. But now, 10 months on and after months of treatment etc, he’s just had surgery and we can finally see the light at the end of the tunnel. I say it’s been months of hell but actually it’s just the waiting around that is hell. Sending you lots of love and If you want any advice just say xx
Steve is 56, he did smoke (but has stopped now) and hardly drank.
Thanks to everyone who has replied, your advice is very welcome.
You are not wrong that the waiting is the worst..its been just over 2 weeks, but it feels longer, since the diagnosis and in that time I've had a ct scan. I am now playing the waiting game and I keep wondering to myself if it was all in my imagination. I am going on with life as normal and my thoughts go from beleiving it will be just a simple operation to the worst case scenario. I just want to know now.
Yes this is the time that a good imagination is a curse, you play all the scenarios through your head. I know what you mean about it not being real if you don't have any serious symptoms it does feel surreal you go on with life as if nothing has changed. To be honest I don't think any bowel operation is 'simple' my mother believes I've has something like her lumpectomy. Its a real struggle for me to get her to understand that although I can get up and around I am missing two important parts of my bowel and at the moment food is a challenge mostly because she wants to feed me runner beans, tomatoes and cucumber because they are all growing in her garden and I want small amounts of protein like chicken and fish with very little else.
If you go through early mobilisation after the operation the thing you will struggle with most is that you think you just get back to normal but your body is saying 'Whoa major change things are different now'
Make sure you have questions for the surgeon or specialist nurse about the recovery because you may think you are up and running when you come out after their early mobilisation protocol but as I found out you're running on reserves and when you deplete those you feel rubbish.
Good luck with the consultation and everybody here will be crossing fingers for the best outcome.
Hi Dead meat
i am sorry I didn't realise you had had your operation either I missed that post or my head has been cabbages!
how are you doing? I know you were worried about recovery when you had demands placed on you from family
i hope you are recovering well and managing, I just read further on in this forum post, your mum is trying to get you to eat what is not good food for you at the moment, I do hope your can get your needs met, both on a nutrutional front and in all other aspects as well .
my best wishes to you x
Hi Daisy May
I think I have forgotten my manners, I responded to a post by dead meat, on this thread, and didn't even say hello to you and welcome to the group.
its a good group to belong too, lots of good support and advice, I'm sorry your here on it, like many others you found yourself here in a similar way.
i am not the patient but my husband is, he was diagnosed via national screening, no symptoms, fit and active, went to gym most days, cycles, swims, gardening so big big surprise......there is often a similar story from other members,
just want to wish you well going forward
I'm not doing too bad process, my mother just can't get her head around the fact that eat the things I did before. As I said she had an operation for breast cancer about 12 years ago and she can't see why my operation isn't just like that.
It's really about her lack of understanding after all she went to school, or rather didn't, during the war and at a time when girls left school at 14 to practice housecraft and be domestic servants before they were married. She has that mindset because for a lot of her life you got cancer, you died so the idea that you leave hospital six days after an operation says to her it wasn't serious.
I won't even go into laparoscopy which she imagines it to take little things out not half your bowel.
Nutrition wise I'm getting the hang of the white diet - white meat, fish and white everything else. Eating more small meals is counter intuitive for somebody who was fat once its like saying I want to be fat again! But the hardest part was avoiding my raspberry patch after I left hospital, I'm so much in the habit of just popping that slightly over ripe berry in my mouth while picking that I simply had to let my brother do the pick until I was confident I wouldn't be tempted, and then there are the beans and the tomatoes... my garden is just one big temptation!
Getting back to veges is going to be a long challenging process because over the years I've almost turned vegetarian which my mother thinks it is unnatural so sitting down to a mix of homegrown was so easy was something I did every day. Now I have to think about skin, pips, seeds, nuts and then decide how much I can have without upsetting the new plumbing. I know it needs to learn to do the things that it used to do but I really don't want to spend all night worshipping the porcelain.
Don't over think it, when my husband was diagnosed we went from CT on a Tuesday to MDT on the Thursday and an appointment arranged by phone for the Friday. He was admitted on the Monday and had his operation Tuesday morning but then he did have a mass so large that they couldn't complete the colonoscopy.
So people in that position who perhaps were kidding themselves that nothing was wrong or like my husband had a GP that insisted that it was stress even though he wasn't under any and wouldn't refer him have to be bumped up the queue as a matter of emergency.
My hospital even has a special unit put aside for 'walk-in' urgent bowel cases because here so many people are grossly obese - this is distribution city so everybody drives everywhere, the only walking space is the shopping mall!
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