Facing cancer alone

Thank you so much for your lovely comments and understanding.

I just wish the medical teams had been honest with me instead of treating me as a neurotic woman. Having a rare cancer diagnosis is scary but no one cared or had the decency to explain or answer my questions.

Xx

It’s horrible when you are not treated well.I was reduced to tears by a gp on the phone her exact words were “what’s all this rubbish about you having cancer” I asked her what scan she was looking at as I was cancer free on one but not the other.She was looking at the wrong scan and all I got was ‘oh yes you do have cancer ‘ no apology for being so rude.I should have complained about the appalling treatment I got from my health centre post op but I felt too ill.I really hope your new team and area are better and you get the support you deserve.Love Jane xx

Thank you Jane.

Gosh that is terrible and so sorry you have had a rough time too. I really do think some professionals shouldnt even be working if they can't even do the most obvious of things. 

I knew there was something wrong with my body months before I was diagnosed with rare cancer but they refused to listen to me

Xxx

I completely agree.We know our own bodies and if something is wrong we should be listened to.xx

Hi Pippa,

I'm sorry you're facing things alone. I sympathise as although I'm not completely alone, I often feel like I may as well be. I'm living with my Parents and my Mum has looked after me, she's the best Mum in the world, and I doubt I'd be here without her. I have no local friends though, a long distance partner who has distanced herself from me and I never see, and one other person I can speak to on the phone sometimes. So most the time I'm dealing with it alone. There's the odd family member or others around sometimes which helps a little when they're not too busy (which they usually are).

I'm aware of all the help available for cancer sufferers, I've been told about it many times and have looked into every option, but mostly it's too far away from me or they're activity groups that I wouldn't either be capable or interested in doing. I know MacMillan have options for phone help but my one attempt at that only made me feel worse. It was awkward and mostly completing a questionnaire. I find it hard on the phone at the best of times.

I've only just read today that MacMillan's private message service has ceased. I wrote to someone (in this thread!) regularly on that and was about to write to see if they were ok as I hadn't heard back for a while, and only then saw that you can't use that service any more. That's very frustrating, and no reason has been given that I've read about.

My only hope that I was told about a few days ago is somewhere local that have a group meeting every Thursday just for chats. It's finally somewhere close enough for me to get to, so I'll try and get the confidence to go there and maybe I'll meet some new friends. I feel so negative that I doubt anyone will want to know me, but if they're in the same position as me, maybe they won't be as cold as most people are.

I didn't mean to make this about me. Sorry. 

We need a place to share email addresses on here for those who want someone to connect with, now that we can't write to people privately here.

Geoff.

Hi BeefyMoo 

If I can try to set your mind at rest, the messaging facility on the community has not been ceased. It has been currently disabled due to a technical issue but the tech team are working on this. 

Community guidelines are the same in that we cannot share email addresses on the forum as this is a public space, but it is hoped that the community private messaging service will be re established soon.

Sarah xx

Thank you very much for that Sarah, I'm very pleased to hear it.

Geoff.

I know it’s a lifeline for many of us to be able to keep in touch privately so we are all hoping it will be up and running again soon.

Sarah xx

Hi Geoff,

Sounds like you are in a similar situation and sorry to hear about your life. I started to make way with my situation by joining a few cancer support groups, but found it too difficult to talk to others about my cancer diagnosis. I ended up being triggered which made me feel isolated again for a while.

I think we all need to do what is best for our own wellbeing, whether talking on the phone or chatting in a group. I also understand men find it harder to talk to others openly. 

For me, finding a couple of local community centre groups has helped me deal with the fact I might never work again due to pain and nerve damage. 

My life choices and views keep changing as my rare cancer diagnosis is uncertain. I love being on my own, but I miss having someone there for me who cares and offers support.

I guess it is because I am single and my kids are grown up. I do appreciate this support group as it does help .

x

Hi Pippa,

It's a shame you found the support groups didn't work out for you. I'm the opposite when it comes to talking about my cancer, even though I'm a man (not a typical one I guess!) as I really want to talk about my diagnosis. I feel a real need to, as it helps me cope with it and understand it.

I've struggled to accept what's happened to me and also, like you, my future is uncertain. Even though it's been over a year since I was diagnosed, part of me doesn't accept it and my brain can't compute it all, and emotionally it's made me a complete wreck some of the time. At least I'm doing a lot better than I was 6 months ago. I'm trying to stay active doing other things to help me not dwell on the negatives too much.

I've always been anxious about mixing with people so that's my main issue with going to groups. The other is embarrassing, related to medication side-effects that I've written about in other threads, so that stops me going out too. I do still go out though, I just have to pick the least "risky" days! So I could get to a group if the timings fitted in with what my body was doing.

Take care,
Geoff.