Moving on from bowel cancer

You can find lots of useful information about life beyond bowel cancer on our website, including our Living well booklet.

Amanda Sandham

12 months on ...

Today it is exactly a year since I had a low anterior resection with stoma. I'm currently in a kind of limbo as I'm waiting to hear when my stoma reversal will take place. I had all the checks and a pre operative examination at the end of the summer then nothing happened. I was warned that COVID has caused a huge backlog of operations and I haven't pushed for a date because the thought of another Christmas in hospital was too much. Last Tuesday I went for my 12 month scan and haven't slept much since as I await the results. Again, I haven't hassled for information as so close to Christmas I don't want any bad news. My physical health appears to be pretty good at this stage; I can do most of what I could before my operation, my stoma behaves most of the time and the lower section of my bowel appears to be working as I pass mucus, wind and small amounts of poo. Mental health is another issue. I am know among friends and family as being the worst patient ever as I hate even to have a cold. The biggest hurdle has been the lack of sleep which in turn sends my brain into overdrive during the small hours. I worry about everything- going back in hospital, being out of action again after the reversal, a recurrence of the cancer... I know that it's unhelpful but can't seem to stop. On the surface I'm fine, everyone comments on how well I look and how well I've copied so far. I wonder if the long term effects of my diagnosis will eventually fade and I will ever feel free from the worry or if this is just my new reality and I will have to learn to live with it.

Lirio345

You are doing brilliantly @Amanda Sandham, but everything you describe about your emotions, anxiety and lack of sleep will ring true for so many people. There is another post about similar feelings and includes some links that may be useful for you. I wish you well, but be kind yourself and give yourself time to heal from this trauma of a cancer diagnosis, Kim :x::x:

community.bowelcanceruk.org.uk/forum/22399-hello-everyone

stevejl

Hi @Amanda Sandham I was very healthy or so I thought before my diagnosis & reading your post a lot of the mental side I recognise in both myself & other people I talk to either on here or who have experience of other cancers.
I think I will always worry to some degree as I had this tumour growing inside my bowel but I was in my own mind healthy so if it grew before why not again & I think that is purely natural.Only when BC is eradicated completely will I not worry .
I had a very interesting conversation around this with my daughter on Saturday as she works in the world of drug & medical research as my oncologist had invited me to take part in the Aspirin medical trial for the next 5 years (unfortunately I am lactose intolerant so ruled out of the trial by the NHS)So we had the chat around who would have thought that Aspirin may kill cancer cells so only 5 years to wait for the results on that & her ex-professor is still pursing his cure where he develops a drug that builds a chemical wall around cancer cells like a prison that they cannot escape from and divide so cannot grow or spread.She spent two years assisting with this research so is hopeful he will get there.
my daughters partner's mother has breast cancer & he has gone to pieces mentally over it & sleep patterns were completely disrupted which then has a knock on effect on my daughter.
He now receives counselling which is helping him to adjust & understand the way his emotions are tied in to his mothers breast cancer diagnosis.
I had a bit of a mental breakdown yesterday as following cycle 3 finishing in the weeks break 90% of my side effects went & I felt really great but yesterday I had to then prepare myself for my 4th & final infusion which meant that within a few hours I was going to be back in pain with all the side effects I no longer had & it was trying together my head around the fact that all your life you are given medicine by doctors & your mother in my case, to make you better not worse & chemo does not always do that in the short term as fighting cancer is more of a long term goal which is very hard to understand some times I think.
I have sleepless nights to as my mind often goes in to overdrive particularly when a new pain appears but usually it is wind & everyone is telling me how well I look to as it seems to be instinctive as I have been guilty of the same comment myself pre-diagnosis.
I hope everything goes well with your scan results & you get your stoma reversal at the earliest opportunity.
Take care
Sending love & hugs
:x::x::x::x::x:

Liz Blakelands

@Amanda Sandham Hi I went through something the same, when you have had the op and the chemo, it is, I think, only natural that as you come up for air you start to worry about the future. For the past year you have been dealing with the treatment, now the treatment has stopped your mind has time to consider what has happened and how is it going to influence how you see things. And now you know a whole lot more about bowel cancer.

Believe me it does get better. My worst time for waking in the early hours was towards the end of the chemo. After a few months I remembered what a friend of mine (who had had cancer) told me when I was first diagnosed 'don't let fear of tomorrow ruin today'. I hadn't understood when he said it but I do now.

As I got fitter I exercised more and this helps with sleeping and whenever you find your mind drifting to 'what if worries' force yourself to stop, concentrate on something else.

I also accept that bowel cancer has changed me physically and my outlook on life. I was never someone to put things off but I certainly don't now. I never thought I would be seriously ill, things like that didn't't happen to me, but it did. It made me realise that no-one knows what is going to happen in the future (covid has really proved that) it is just I have become more aware of that than others.

For a lot of my family and some friends it is all done and sorted. I don't think it ever is, I old confidence of living to be a fit and healthy 90 year old has taken a knock, but no-one knows what the future holds - you just have today - enjoy it.

Hope you get a day for the reversal in the New Year,
Big hugs :x::x:

Wegwe

@Amanda Sandham are you getting any help with the mental side of things? My GP suggested that I talk to someone, and although I wasn’t sure that was really necessary, I decided to at least try it. For me, it does help to talk to a professional. In some ways it’s easier then talking to friends, family and even my husband, and he gives practical advice I find helpful. I tried an online course, too. That wasn’t for me, but perhaps it’s something that would work for you. Right now I’m reading a book about post-cancer anxiety; that suits me better than the online thing.

Stella 2020

Hi @Amanda Sandham , I found anxiety is worst when I just finished treatment, it does get better as time goes on and you feel more confident about the future. It is very easy to let your thoughts run away with worries and get yourself into a state. I found it useful to recognise that thoughts are just thoughts 💭 nothing more than that. It is an inner dialogue and story you are telling yourself. If you can stand back a bit and so you become the audience of this ‘play’ and try to notice as the same time real things surround you. Such as try to name 5 sounds, things you can actually see etc.. Try to bring you back to reality rather than live in the centre of the ‘play’. It takes some practice, but I found this is helpful and stop me wasting my time in unhelpful thoughts.
:x::x:

Worried_Jay

Hi @Amanda Sandham i could have written this myself, I feel exactly the same as yourself I’m just 3 months behind you with regards to surgery. I’m also in limbo with a reversal, I don’t believe my Rectovaginal fistula has healed spontaneously as they d hoped so it will mean further surgery 😢 I’m also coping much better then I thought I would with my Ileostomy it just becomes second nature, it helps that I have a good routine with it and can eat well. So physically I’m ok, well apart painful kidney stones and and the fistula lol but Emotionally is a different story, it’s a year since I first visited my Doctor with my symptoms so it’s a bit overwhelming. I’m tearing most days when I should be enjoying Christmas etc. :x::x:

Amanda Sandham

Thank you all for your kind words and reassurance :x: it really does make a difference knowing that it's not just me. This morning I phoned my consultant's secretary asking for any scan results. Unfortunately the information is not yet 'on the system'. I have requested that someone phones me as soon as the results are known so that I don't have to wait until a letter is sent out. Presumably there will be no update until after Christmas now. Hey ho! I'll try to shove the anxiety to the back of my mind for the next couple of weeks :x: