Moving Forward after diagnosis and treatment can be hard. People sometimes describe it as feeling like they are falling off the edge of a cliff. Now what? That’s why we developed our Moving Forward courses. And we are always looking for new resources and ideas.
Are you a little way past the end of your treatment now? What have you found helpful? Looking back, what advice would you give yourself?
We are adding some top tips to our Moving Forward information hub. And we would love to hear yours if you are happy to share below.
And if you haven’t attended a Moving Forward course, but would like to, you can find out more on our Moving Forward pages on the website.
I told myself right after finding the lump to keep a journal / diary so i could vent, get angry, get emotional on paper and help myself to not feel overwhelmed and reading things back would help me form questions, and eventually see how far I’d come
The biggest thing for me was the waiting at every point, it was excruciating at times so i usually hugged my family and dog a little tighter and also downloaded a meditation/ mindfulness free app called Smiling Mind
Yes the waiting was awful - at one point I thought it was just me who couldn’t cope with that - even felt guilty about it and when I finally spoke to the BCN service about it I got the feeling that they thought I was over reacting as well. I know now that everyone feels the same - if you could put something about this in your hub I think it would help. It’s not just the initial waiting for a diagnosis as we are waiting at all stages of treatment and sometimes it’s worse than others.
I got through by ;
Taking a day at a time
Doing things i loved and being happy in the moment - for me that was Yoga , cold water swimming and spending time walking on the beach being immersed in nature . These also helped my recovery though obviously I wasn’t able to swim for a while
Talking to true friends
Thinking about all the people who care about me and how lucky I am
As well as dealing with BC I was struggling with the loss of my Mum who died a few months before my diagnosis - which I can now see triggered a sort of PTSD . At one point I couldn’t even think about what had happened to me it was all about what had happened to her and I relived it all over again.
I would say to anyone who starts reliving an old trauma that no you aren’t losing - but get some help. I called our work counselling line twice.
When you go to appointments take a list of questions with you -/ tree diagram as one question may lead to several possible answers . Something that may not make sense to anyone else but you can follow easily . As questions are answered tick them off or cross them out - write new questions down if needed
The other advice I would give myself looking back is to be more patient re my recovery . I injured myself a couple of times trying to do things too soon - I kept thinking it’s only a lumpectomy it’s a minor op. I underestimated how tight I would be down my right side after radiotherapy as well.
It sounds daft but when my breast was a bit red sore and itchy after radiotherapy I put a lovely soft bamboo sock inside my bra which helped to absorb sweat , protect my skin against rubbing made me feel a bit cooler and stopped any temptation to scratch. Especially when I was half asleep first thing in the morning I would start to reach down to scratch but when my fingers found the sock instead it always stopped me.
Not sure if this is the kind of thing you are looking for but there it is
Hi JoanneN,
Sorry for the loss of your mum,its not easy and she would have been a true support.
Have to say i totally agree with everything you said.
I was in a haze all the way through diagnosis and treatment and then felt abandoned as the BC team moved on and just dropped me (they didn’t, thats how i felt)
I was very lucky to find a cancer rehab center close to were i live.
Ive started living again!
Yoga, stretching, MLD massage and most important for me was access to counselling. It really can help.
Close friends you can say anything to is a must.
As is looking for the joy in life.
I dont dwell on my diagnosis or my health.
I so agree that the waiting is excruciating! When I had the biopsy at the unexpected recall (when I thought I was fit and well and couldn’t understand what was going on) I was told that the results would be back in a week but the very nice surgeon I’d just met would be away then, so either wait another week or elect right now to go with another, unknown surgeon from another unknown hospital (I’m on the border of Wales and I had no idea where the Welsh names of places fired at me even were!) I chose the extra week to avoid the hassle. Then Xmas got in the way!! Then after a 3 week wait post surgery for pathology results, the nurse rang me and said some results weren’t back. I thought - Another week?? (dressings were due to be taken off at this 3 wk appointment and I had cording they were going to talk about) No - surgeon away again so another 2 week wait. It seemed like a physical blow! The nurse seemed surprised when I broke down, and told me don’t worry, it was everyone who was affected - she was ringing all the ladies who’d had surgery that day! Then I felt embarrassed - ashamed of making a fuss! Take your own dressings off in the shower, she said. That frightened me and tbh I felt in a mental whirlwind that I wasn’t familiar with or knew how to handle! I got through by walking with the dog and with an endlessly patient, empathetic friend. My husband is my rock, but is super practical and doesn’t do emotional freak-out like I felt like doing now and then!!!
Looking back, it feels like I was freaking over such relatively small waits - when you consider how lucky we are to get such good early diagnosis and relatively small waits compared to others. That’s probably how my nurses saw it. But at the time it really plays with your mind! The fear and the waiting! One lovely nurse at my biopsy warned me that the waiting is the worst thing about this process - she really meant it and it helped when I remembered her.
Yes it’s true all time is not equal - it plays really nasty tricks on you when you’re waiting then when you look back it doesn’t seem quite the same / so unreasonable although some people do seem to have waited too long .
My partner did his best but bless him he was trying not to show it but panicking inside .
Glad we are out the other side of it Geeps and sending love to everyone who is playing the waiting game.
@Geeps the waiting is awful! And as others have said, it can sometimes feel like you are alone in ‘not coping’. If anyone finds themselves in a similar position - don’t forget our Helpline 0808 800 6000 is always here to offer reassurance and advice.