Hi all, bit of an odd one this, but post op am doing a lot of processing and mulling. One of the things I have struggled with is feeling somehow to blame for my colon cancer. I remember hearing Adele Roberts say she broke down when her consultant said 'it's not your fault'. This really resonated.
As with so many of us this hit me out the blue, been a vegetarian for over 30 yrs, am 53, keep fit. My sister's partner is a vegan and was asking what changes I am going to make to my lifestyle now. It just makes me feel like have failed massively on top of everything else. Even though I know it's not as simple as this equals that.
It's hard enough sometimes isn't it?!
Love to all xx
Hi Arial88 Sounds like your sisters partner is not very tactful or maybe they meant it from the angle of appreciating a ‘second chance’ at life? I also wondered if it was ‘my fault’. I used to take a ham salad to work everyday (processed meat?) or too much drinking (nights out in Halifax) but when I asked the lovely Jo Dent about it she said ‘it’s just the luck of the draw to be honest’. A healthy lifestyle is obviously beneficial in general but it certainly doesn't guarantee not getting cancer.
It’s quite normal to ponder about what’s happened - the build up to diagnosis and then treatment can be a whirlwind of a time then you have your op - its done and time to recover and think about what you’ve just been through.
Recovery can be a funny time. I had chemo after my op and when that finished and Jo gave me a goodbye hug, I left the hospital and felt quite despondent. I should’ve been cartwheeling down the road (although maybe not a good idea as I still had my stoma at that point!) but I felt a bit lost and a bit uneasy that I wouldn’t be going to the hospital weekly and being checked out - it was like my comfort blanket had been taken away? It’s all a mixture of emotions isn’t it but you do what’s right for you when it’s right for you?
Ive attached a link to a paper that a lot of people have found helpful and often refer back to if they’re having a wobble so hope it helps?
Hope you’re recovering well or home even?
Take care
Karen x
Hi Kareno62 thanks for such a lovely reply. You are right, it's a whirlwind of emotions. I am doing good, came home on Thursday so recovering well, taking it slow, adjusting to food again, keeping it bland currently! Thank you for the link to the paper. I am not sure if I will need chemo yet but I totally get that feeling of being cut loose after so much has happened. I am hoping the bowel nurse rings me next week.
I am grateful my sister is doing a great job of advocating for me. Her partner I think does believe you can totally avoid getting cancer, which we know is nonsense. You can absolutely do all you can to keep healthy but I saw my husband, 57, very fit, get non hodgkins lymphoma so I know it strikes all people. I guess believing you have control staves off anxiety. My sister did say partner commented it may have happened as I eat crisps every now and then . He doesn't touch anything processed, again I do my best!
Anyway, I hope you are doing well yourself.
Xx
Hi Arial88
We used to have a great guy on here who happened to also be a cancer biology lecturer. When this question came up he would kindly say it’s just unfortunately more to do with a dna problem something to do with P53 !
I don’t claim to know anything about this but it did make me realise lots of things about our health are within our control and lots outwith our control . My mum was very fit and healthy . The big benefit to that was her ability to take treatments and surgery for so long . Even her liver surgeon got excited to see how healthy her liver was .
You are doing great with this . It’s not easy . Sometimes people get stuck trying to communicate.
Take special care ,
Court
Helpline Number 0808 808 0000
Hi Arial88 Kareno62 court I just wanted to say thank you for sharing your feelings around blame, I had surgery and chemo that finished in August last year for a T3N1 diagnosis, I am now at the surveillance stage and I too struggle with a sense of blame.
I was only 37 at diagnosis combined with a lot of media coverage over the last year about early onset bowel cancer on the rise in young people, with the blame predominantly being put on our food, has hugely contributed to the blame I put on myself. The truth is we have a strong history of bowel cancer in my family, but I can’t help but feel regret about previous food choices and equally not being aware of my own level of risk. These feelings are definitely more noticeable for me around scan times when I find all emotions are particularly heightened.
I’ve always had a great bmi, never smoked and very rarely had a drink. Due to my age I was referred into genetics counselling where I’ve been told my young daughter is also now considered high risk. I was told not to be so hard on myself and that there are lots of contributing factors that go into cancer. However, I do give my self a hard time, and I’m am now even more conscious about the food my daughter is eating too.
I have received counselling through Macmilan & Bupa, and more recently been referred into the cancer psychology service through my nurse at hospital. This has been really helpful, to be listened to by an expert in cancer specific psychology has been really valuable.
I’ve learnt a huge amount about myself over the last year, I didn’t realise how much I need control in my life and could never have imagined what it’s like to deal with uncertainty until my own diagnosis. I am fortunate to be so well supported by incredible family & friends but (possibly) due to my age there are times I’ve felt very isolated in my own thoughts, it is reassuring to read your words - to know that I’m not totally neurotic.
At the beginning of my diagnosis my surgeon said to me - ‘physically you’ll recover very quickly from this’ (I think due to age/fitness level) ‘but the rest’ he said ‘is all up here’ - as he tapped his head.
It’s only now I can reflect back that I really grasp what he meant. The mental impact of cancer cannot be underestimated, even when surgery/chemo has finished.
xx
Hi Fleur.2 thanks for sharing your experience, it's good to know others have these feelings. Like you I rarely drink, don't smoke, bmi good, active, also no meat, yet here I am. My nan had bowel cancer but at 68 so no real genetic link. I am T3 too, waiting to see if any lymph nodes involved.
You absolutely aren't neurotic. This is massive and we learn so much about ourselves. I have health anxiety and in a way was waiting for my turn, particularly after my husband had cancer. I too like to control things, what a lesson this is dealing with the unknown. I am so pleased to hear you have had counselling, the psychological scars aren't so easily healed. It's very early days for me but overwhelm and tears are so much more common now than when I was diagnosed.
I can imagine it's really tough knowing your daughter is at elevated risk, but what a good thing you know. She will be monitored and aware.
Don't ever feel isolated, always happy to chat. Wishing you all the best with your continued recovery xx
Great conversation. Thanks to everyone for sharing. I too feel guilty like I made poor choices.
But the truth is that there are plenty of people making much worse choices for long periods of time who are not getting sick.
Does food contribute? Almost certainly. Genetics contribute. Environmental factors contribute. But no one knows why one person gets it and another doesn't. It is out of our control. We can improve our odds by making better choices but that's no guarantee.
I'm a control freak and this has been super difficult for me to accept. But my cancer is not my fault just as your cancer is not your fault.
Hello I’m feeling the same. I have a really high BMI, smoked when I was younger and used to enjoy a drink in my younger years. And I’m inactive, more so since surgery and chemo. I can’t help but to think I’ve caused my cancer and now I feel stuck in a rut as I desperately want to be healthier but with current energy levels I feel like I’m failing everyday and then convince my self that the cancer will come back because I’m not helping myself. It’s a horrible feeling.
You've got to start changing your self-talk.
Remember you are doing the best you can and the cancer is not your fault. You got unlucky. Many people did everything you did and worse and they don't have cancer.
The self blame thoughts will come on their own. Tell them they are wrong.
Thank you so much for your lovely reply, - I hope the wait for your full pathology results is not too long and you get called for your appointment asap. I find all the waiting very stressful!
I remember reading in some post op literature that I was given on discharge from the hospital that it’s really common to get emotional once you’re home. I certainly felt such a mixture of emotions - relieved that the operation was over while wondering what was next.
The paper that Kareno62 has linked is so spot on, the way he has articulated these feelings of uncertainty is incredible, I strongly relate to it all.
xx
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