General Discussion

Rachy1983

Difficult week

Hi everyone. I’ve had my worst week so far since my initial diagnosis on the 1st March. Had numerous meltdowns and lots of anger directed at people who don’t really deserve it. I have found that since all this started I’ve been worrying about hurting people’s feelings in my family and trying to include everyone. I Havnt told many people about my diagnosis as I really don’t want a pity party and I have this sense that the only thing I can control in all this is who knows. Silly, I know. The few friends I have told seem to find it hard which In itself is hard for me. Why is it so hard for friends to be , I don’t even know how I want them to be! Such a strange limbo I am in right now. Everyone else’s life’s go on and I’m stuck here, in the land of fear and dread.

I went to surgery school yesterday for prep for my op on Monday. Very useful, I’d definitely recommend if you ever get the offer. At the end a research nurse came in and asked me to do a research questionnaire on line. When I got in I started filling it out. Fairly basic questions, about your mental well being. I got to this question:

Please list in rank-order the three most important factors that you believe caused your bowel cancer. (Start sentence) The most important causes for me:-

What a question. Needless to say I missed it out. I have no idea what caused it! Any thoughts on that open for debate.

I’m heading for surgery on Monday and today has been a good day, I feel a lot brighter. Still terrified but coping. Looking forward to spending some quality time with my husband over the weekend and for maybe five minutes we’ll forget what is happening. Have a fabulous weekend everyone.

Sele2017

@Rachy1983, when you become sick is when you know who ate ur real friends and family! two of my family friends do not even call me and ask how I am doing, these are the people I expected to be there for me, sometime it can pass even up to 8 months without them calling or texting me. At the beginning I would call them but now I don’t bother, and I don’t tell them anything- I just say I am fine, there not worth it. The friends who I didn’t expect them to be here for me are the ones who will take me out etc. Good luck for Monday, wishing you all the best.❤️

1234annie

There are 2 types of friend:-
1)The ones that will do anything 4 you now and always and put their fears aside and are just there 4 u no matter what.
2)Those who you thought were your friend but have no clue what to say or do so do nothing. Maybe they think it's catching..... that's what I asked one of my "so called friends" 😄
I dumped all those in catagory 2, made lots of new friends though my cancer and also became close friends with people who were aquantances before who had been though cancer and knew what I was going though.
Don't be scared to reach out to the ones who have walked in these shit shoes too❤

Rachy1983

@Sele2017 what I find hard is how I’ve supported other people through situations. Not cancer but divorce, anxiety, depression and operations and those people have run away. I can’t help but feel that they want there problem to be the biggest so they move on to people who will listen. I don’t have the luxury of doing that, I have very few friends and those friends I had high expectations and right now I’m feeling like I’m a bit of a burden. I only said to my husband tonight to only update the people who ask about my surgery after it has happened. So hard!

Rachy1983

@1234annie well said hun. Shit shoes we are wearing but we aren’t alone! Thanks for that! What crazy thoughts and feelings I have at this moment. Other people really are the least of my worries but hey ho, it still gets to you. Had the added bonus today of finding out my holiday insurance for a holiday planned for 19th to hongkong cruise etc ISN’T likely to pay out! Gonna fight it but shit. I hadn’t advised them about my contraceptive implant being stuck in my arm and having to be surgically removed. The worst thing is I’d have given the holiday away, but I could only change one name when I asked. Gutted.

1234annie
Quote from @Rachy1983:
Thanks guys! Means a lot your all here! Other people are definitely the strange one in this situation. Not glad to hear that you’ve all had similar experiences with friends but weirdly reassuring. Not just me! The ones that matter are here that’s the main thing! Very true when they say the hard times show your true friends. A girl I job share with who I wasn’t particularly close to has been a great friend in all this so in dark times some people shine and she certainly has. So as for that question in the questionnaire. Any thought? I found it quite offensive.

I've spent a very long time agonising over 'what it was' but honestly I don't know. I was a bit of a wild teenager, my mum was an alcoholic so I prob drunk more than I should at an early age. I've read many books that links disease with gut bacteria but again veggie fitness fanatics still get cancer! Maybe I'm paying the price for my younger years??stress?? Who knows..... you can't change what's happened so it is a bit insulting to be asked what u thought it was. :x: :x:

Gypsy

@1234annie . Get it all out of your head. Nothing you have done has caused your cancer! Yes. it is good to lead a 'healthy life' and as you say, many do and did and still got cancer, me included. The links are tenuous and are trends, generally at population and not individual level. It is obviously good to try and reduce your risk by these things but you cannot prevent cancer as an individual- at least, that is what I believe (and have had science background and once worked in a research lab in cancer work). You know, one of the biggest risk factors for cancer including bowel cancer is aging and an immune system that gets less effective with age. Well, none of us can do anything about that. Most bowel cancer starts as a single mutation in a cell in a polyp that is not detected by the immune system and then proliferates as further cell division takes place. Not everyone gets polyps but quite a high percentage of people do- therefore they are already at greater risk in my book as one of those polyps can 'go wrong'. I specifically asked at one point, 'what can I do to prevent polyps from forming' and the answer was nothing. If you are going to get them you are going to get them and generally, as we all know, we don't even know that they are there unless something has gone wrong and one of them has become cancerous. Love Gypsyx

bettebette

I suppose that the purpose of the question is to try and get some idea of why people might get cancer (outside of the ‘accepted’ red flags) or what they think might have caused it to enable research, however it does seem particularly crass.
I asked a physician what he thought in my case and he said “inflammation” and “bad luck”, the inflammation argument doesn’t seem to hold water (there is recent discussion about those with hay fever/allergies being less likely to get colon cancer because of the immune system/white blood cells over reaction to everything; I have asthma and lots of allergies)
I don’t think it’s good for our mental health to ‘blame’ ourselves for something so debilitating; perhaps it would be worth at some point asking those who asked the question why it was included? Xxx @Rachy1983
@1234annie once again I agree with @Gypsy, I understand why you would think this through again and again, but unless there are useful answers it’s just another thing to add stress. Very best wishes to you :x::x::x:

Catt79

@Rachy1983 my oncologist told me I was just unlucky so I'm sticking with that :x::x:

Rachy1983

I suppose when I read the question I couldn’t help but think I’m 35 I havnt lived long enough in my eyes to have any probable causes. I have smoked socially, I drink too much, I like the odd take away. I have been on a constant diet like most women my age. I would say I live the life of a normal person my age. I don’t feel any of this would irreversible. I don’t have the luxury to say, I became T total when I was 40 and being diagnosed at 65. I’m typing as I’m thinking, I did have pre cancerous cells removed from my cervix a few years ago, I had hpv. Now could there a be a link here? I know there are lots of link between hpv and cancer. Very interesting.

jean

I wonder @Rachy1983. I had some precancerous cells removed on my cervix cos of hpv quite a while before a polyp went rogue but it was a slow growing cancer. Makes you think really. :x::x::x:

Rachy1983

@jean well that’s interesting. I’d actually forgot about mine until the doctor filled out my medical certificate for my holiday insurance and it was in my 5year history. I’ve not had an abnormal smear since, this was 4 years ago and who knows how long my little friend has been growing in my bowel. I know very little about it. I know hpv is a STD as such and I’m pleased they are vaccinating to prevent it.

Catt79

@Rachy1983 and @jean I too had precancerous cells removed from on my cervix (HPV) when I was 21, so 15 years before my initial diagnosis. I wonder if there could be a link? I had bleeding for TEN years prior to diagnosis (always told it was piles) so I probably started getting polyps a few years after the dodgy smear.

Jomo9

@Rachy1983 I would have had no idea what to put on the form either! Even the Surgeon said that I had no risk factors so think that I should have enjoyed life a little more! I’ve actually got a genetic consultation tomorrow so maybe that will provide the answers...

In regards to keeping the family updated my brother suggested setting up a WhatsApp group to give the main updates. I was a bit hesitant to start with but it has saved having the same conversation multiple times which can be stressful and annoying.

In regards to telling people I kept it to a few people to start with. I didn’t even let my family know what was happening until the treatment was confirmed. I made a decision to post updates on Facebook but tried to make them educational to raise bowel cancer awareness.

Peripheral friends have become close friends and vice-versa so guess friendships change when you are going through treatment. Guess that people don’t always know what to say or do. I’ve also made lovely new friends during this process at support groups and centres :x::x:

jean

It mayb something that the doctors could look at @Rachy1983. And look for any polyps in the bowel at the same time. Cos i’m Remembering now that I first had a polyp on my cervix which they removed and then the precancerous or C1 cells showed up a few years later. Could be another way it could be connected. Yes thank goodness for the vaccine now :x::x::x:

jean

And it happened to you @Catt79. 🤔 makes you think :x::x::x:

Rachy1983

@jean @Catt79 could be a coinscidence but definitely interesting. I do have cervical cancer in the family but not bowel cancer. I do wonder if there is a link. They say bowel cancer is very slow growing so it may have already been there at the same time. Mine was 4 years ago. I’m up to date with my smears and all has been fine since. Does make you think.

Rachy1983

@Jomo9 thanks for that. I tried to do an information train with the family but they still all rang me. We are a very close family which lovely but sometimes overbearing. I just don’t answer the phone when I don’t want to speak now. I’ve been very brave with that. I hope you get some answers with your genetic testing. All very interesting. The friends thing I’m coming to terms with. All be it hard but it is what it is. Not done the social media thing because I have 7 nieces and nephews and I’m being very careful not to scare them. The eldest is 15 (friends with three of them on Facebook and Instagram) and I’m super close with them all. With me having had this perianal abscess, the kids just think it’s that. They think I’m having surgery on that and that’s the way I’d like to keep it till they need to know. It has almost been a welcome excuse to tell them as I’d hate for it to effect them. I know they know something isn’t right but I’m hopeful for a full recovery. The word cancer can be terrifying for children.

Colin Oscar Pea

I told everybody who wanted to know about my situation but some people just don't know what to say. Don't be too harsh on your friends.

1234annie
Quote from @Rachy1983:
I suppose when I read the question I couldn’t help but think I’m 35 I havnt lived long enough in my eyes to have any probable causes. I have smoked socially, I drink too much, I like the odd take away. I have been on a constant diet like most women my age. I would say I live the life of a normal person my age. I don’t feel any of this would irreversible. I don’t have the luxury to say, I became T total when I was 40 and being diagnosed at 65. I’m typing as I’m thinking, I did have pre cancerous cells removed from my cervix a few years ago, I had hpv. Now could there a be a link here? I know there are lots of link between hpv and cancer. Very interesting.

All my smears are up to date, I've never had abnormal smear results. It's difficult not to look every aspect of your life. ❤ :x: :x: :x: