Life after cancer

[Whaambulance]

Hello, this is my first post, I don't know if it's in the right place, but I couldn't think where to put it. As the title says I am living as a lucky survivor of cancer, but I have found very little information available about how to deal with the after effects of treatment. All I hear and read is "it will take as long as it takes to feel better" and it's not helping me. My last surgery was almost a year ago and I still have pain, the chemo finished five months ago and the radiotherapy four and I'm still exhausted. Has anyone else taken this long or longer to bounce back? I keep seeing inspirational stories of people who run races or climb mountains months after treatment ends and I can't help feeling that I am not trying hard enough. But I'm so tired and sore. I would really appreciate it if anyone who has experience of this could take the time to share, so that I can gain perspective. Thank you

Please don't compare your recovery to anyone else's, I kept doing that after my breast cancer and I made myself thoroughly miserable! We are all individuals and will get there in our own time. I had pain and issues with my scar for far longer than I had been led to believe was "normal", in fact I still struggle some days even though I'm 18 months down the line
I remember feeling guilty and very anxious because a friend who was also recovering was training for a marathon, and I was as weak as a kitten! That was my lowest point and thankfully my GP talked some sense into me.
The psychological recovery is tough too and again I still have bad days but they are getting less and less. Be kind to yourself and talk to people, chat to your GP/ specialist nurse/ Macmillan helpline or just family and good friends. Find someone who understands and will listen.

Thank you missy, it helps to know that it's not just me feeling that way. I have good friends to talk with, but they can't really understand how I feel. I'm definitely doing better now, but some days are so much harder than others. I haven't been able to find many people willing to share how they have been effected by the life saving treatment they had for cancer, probably because we are all just so glad to have survived!

I finished chemo a year ago and radiotherapy 10 months ago. I really struggled with tiredness for ages and I still do. I find that now I can't have 2 late nights in a row (and by 'late' I mean after 10.30pm) or I'm completely wiped out. It takes me longer to shake off a cold or cough too.

I started seeing a psychologist in March as referred by my surgeon. I find this helps a great deal. I tried to join a support group but the one I found stopped running! It's hard. I find that now I feel much more vulnerable than I did when going through treatment. If I feel unwell now I automatically assume it's cancer. I'm pissed off about the long term side effects of treatment. I'm young - 34 - and find it difficult to talk to anyone my age about it. Even my husband thinks that the only problem now is 'a greater sense of mortality'. I struggle a lot with anxiety and have trouble sleeping.

Sorry, this has turned into a massive ramble! I just wanted to let you know you are not alone. Something I have found that helps is simply being kinder to myself - doing things purely for enjoyment (ie not feeling guilty for watching crap tv in the evenings rather than working on my laptop).

Thanks for responding Elmindarina, you have captured so many of my feelings and anxieties in your "ramble" ! I hadn't realised that there is a connection between cancer and the unsettling vulnerability I feel now. It's not just the health anxiety, I am so much more cautious now and feel like a lesser version of myself. It is good to know that I am not the only person struggling with the new reality, and justification for my shameful TV choices 😉

I often say that I don't recognise myself anymore and I would like the "old me" back. But I guess you can't turn the clock back and so I try to accept that things have changed and look for ways to make life more relaxing and also more fun. Exercise makes a big difference, especially yoga!

You're right missy, I miss who I was and know that it's never going to be like it used to be. I have been thinking about getting back to yoga, and am walking lots in an effort to get fitter so hopefully exercise will help me feel more like me again.

Hi guys, I've just joined Mumsnet myself too! I joined to ask questions on fertility after cancer, but saw your post and some of the comments about support groups for cancer survivors. There's not much out there so I'm forming an online platform - it'd be great if you want to get involved. Do a google for Mission Remission.
And if not helpful - feel free to tell me to bog off!! Laura xxx

The main charities run survivor courses. Also look at The Haven, as they offer support at any stage. I think everyone struggles in different ways - because cancer affects all ages and all kinds of people there is no simple answer. Just don't try to live up to others' expectations - and forget all that war/battle/fighting nonsense talk. If you need help, ask for it.

I did go to a Maggies centre for a while, it was very good, I did a stress reduction course, mindfulness and Nordic walking! But eventually I felt it was time to try and move on by myself - which was harder than I anticipated.

I had my treatment in 2011 so I'm a bit further down the road than you. I was shocked by how difficult it was to do the simplest things, and didn't feel I'd ever be well enough.

I started karate in 2012. I'm still not very good at it and quite often give up the running around the hall warmup, but it did give my overall fitness levels a bit of a boost. Everything else came very slowly. Walking my DD to school (20 mins walk) took about 2 years before I could do it comfortably.

I suffered from neuropathy in my toes and fingertips, and that took years to go. The worst side effect though has been my teeth. I have had to have so many big fillings, and extractions since the chemo. My gums are receeding now which doesn't help. But of course I'm supposed to feel grateful that I'm "cured". Like a pp said, every ache or pain I immediately worry it's come back, especially as no-one could tell me why I got it.

I really think it helps to talk to others who've been there. I was offered a survivor course at my local hospital, aimed at people with just my sort of cancer. I really enjoyed that. And every year DH and I go to a Patient Day in London where we go to talks and chat to other people.

I do find group meetings difficult .The few that I've been to have been dominated by one or two individuals playing top trumps with symptoms and experiences .
Maybe I've been unlucky .

Thank you all for responding, I am aware of the available resources provided by Maggies and other organisations, but I don't think I should be taking the place of someone who is more in need than me. I'm relieved to read the experience of others post cancer are like mine, the honestly is refreshing . Yes it is brilliant that we have survived, but the truth is that there are long term effects that nobody warns you about. Thanks again for your honesty in sharing, it's nice to know that others feel like I do.