Hi
I am about 15 months from having radiotherapy and doing any, but I’m finding days where I feel happy send me into a spiral of feeling very down, I am loving my life and scared it
may all come crashing down again. It’s like I’m scared to live my life.
I have booked the fear of recurrence online this week but just wondered if anyone else feels this way.
Hugs to all
Can completely relate!!!
I still have radiotherapy to go but having always been so positive and really not an anxious person but feel I’ve had such bad luck recently this is it.
I am the same, love my family, job, holidays etc and just dread anything else going wrong.
I am good about speaking about my feelings but I think it is also good to know I’m not alone and others feel the same.
Be really interested to know how you get on with course.
Hello @stillsmiling2025 and @chillout365
I hope you are both doing OK today.
I can very much relate to how you are feeling about life and what has happened with your diagnosis and its impact on you
I lost my dad unexpectedly when I was 13, so I thought (very naively) being diagnosed with breast cancer couldn’t possibly be “as bad” as that experience and I wouldn’t need any support or help to get me through and beyond
I’ve now learned (and perversely I’m grateful for learning through my breast cancer experience) that it is absolutely OK to ask for help, that support in whatever form: be it through an organised group or just chatting with others who have been through a similar experience online or in person is invaluable.
The cancer support services be it BCN Maggie’s MacMillan are always available to anyone affected by cancer so please don’t be afraid to contact them at anytime
I really hope the course proves useful
Sending you both lots of love
AM xxx
Hi , I understand . I’m similar timeline to you .
I don’t think it helps because I have side effects from Anastrazole , which I try to manage with exercise and lifestyle .
Not finding the GP particularly helpful TBH.
I did have some counselling , not MacMillan as it was a trainee therapist I saw and I didn’t feel I got anything out of it . The counsellor showed me that 1. We will never be the same person we were pre diagnosis but we can enjoy life again .
2. Make space for ourselves . Accept that our energy and capacity is less than “normal “ people .
Have you been on Moving Forward? I hadn’t seen the Recurrence workshop .
Let us know how you get on x
It’s not a workshop but the zoom conference this week on BCN.
Xx
Hi. Is it possible to give a link to the zoom conference on recurrence please? I can’t find it and it sounds just what I need ahead of meeting with my oncologist for the first time. Thanks
If you go into life after breast cancer, it’s under speaker live, you have to register and get sent an id code for the event.
Xx
Thank you, I keep thinking about going to the Southampton maggies centre but never actually make it there, coming up with one excuse after another.
I moved house twice last year as well so I am new to the area I now live in, haven’t really got to know anybody here so nobody to talk things through with really.
Xx
Thank you for your reply.
I have moved house and now live in a different area to where my treatment was, haven’t really got anybody local
to talk with, just my husband & dogs.
It’s not a recurrence course but an online session Tuesday night on zoom. You have to register and then you get sent an ID code for that evening.
The worse part of radiotherapy for me was laying on the table and being left on my own whilst the machine did its thing, it made me feel so sad and alone.
Hope your doing ok
Xx
Hello again @chillout365
I can absolutely promise you won’t regret walking through the door of a Maggie’s centre.
My experience was stumbling in and collapsing in a heap of tears, and the kindness I was met with was so wonderful
I know how easy it can be to talk ourselves out of doing things but when we actually pluck up the courage to do something wonder why it took us so long.
Trust me when I say your breast cancer diagnosis and treatment has already forced you do more frightening things!
Good luck
AM xxx
Hi there, your feelings sound pretty normal to me. We don’t come out unscathed but we can enjoy life again. I think the BCN moving forward course might be good for you. I found it very helpful.
There might be local support groups in your new area if you ask.
Hi thank you for your reply
I did the moving forward course but I felt I hadn’t been through as much as the others as I didn’t have chemo and
It was online. I’m finding it very hard to move forward.
I think I need to see people face to face and see if that helps.
Hope your doing okay
Xx
Yes I did it face to face which, I think, is a very different experience. And I didn’t have chemo, for which I am hugely thankful, but that doesn’t undermine what you have been through. People on my course were all different, with different experiences and there was no hierarchy of trauma. Perhaps you could try again on a face to face one? Good luck x
Hi @gabrielle1 - here is the link to our Speakers Live session that others have mentioned: Coping with uncertainty with Dr Marta Correia | Breast Cancer Now I hope you find it useful. Once you have registered for Speakers Live you will get regular updates, and you can also watch the recording if that’s easier, Tracey
I know what you mean - I have sometimes felt a bit of imposter syndrome when talking to other women about BC because I didn’t have a mastectomy or chemo but it’s still important to acknowledge that you have been through something as well.
I totally know what you mean. And am also a very positive/love my life/god at being content person normally. But now find I am discombobulated and can’t relax into either happy or down feelings. It’s almost like I am being vigilant of my feelings and not just relaxing into life. If I have a rubbish day where I’m tired and don’t get anything done I beat myself up about not ‘living life to the fullest’. I’m really struggling with not managing to eat brilliantly or do exercise post cancer. Am beating myself up about that but nothing seems to kick start me into taking action even though I know it’s the biggest ingredient to preventing a recurrence! Basically im all over the place. But the people around me, who have been amazing, just see me as ok now. I did do chemo and hair is now coming through thick and fast which is wonderful, but it is almost as if I no longer have the visual aid to remind people that I am still in the thick of it - I start 15 rounds of radiotherapy on 24th. Kind of feel lost and alone at the same time as feeling jubilant and grateful! Very confusing. I intend to do the courses on offer in person when I’m through the radiotherapy. I don’t find online stuff helpful at all. I just switch off and don’t relate to the other women if it’s through a screen! I very much relate to the lady who said she felt lost and alone in radiotherapy machine room. I felt like that just during the ct planning scan! So I need to get a hold of myself for the 15 sessions of radiotherapy coming up. I feel like everyone has switched off a bit and I have felt the ‘chat’ around radiotherapy is very reductive. Like it’s nothing and we should just get on with it. But for me it feels huge as it has the potential to mess with my new fake boobs. Anyway, I drifted off topic, basically yes I feel exactly the same. Down after every up feeling.
I hope your radiotherapy goes well for you. I had five sessions and found it a very sad lonely experience, it didn’t help that when I had my ct scanning plan something was seen on one of my kidneys, I then had to have a full ct scan with contrast dye on the second day of my radiotherapy, so I was at one hospital in the morning and then another hospital in a different city in the afternoon. So for the rest of my radiotherapy I was waiting for my results of my scan and was very anxious.
This came back as a cyst but I didn’t get the results until I’d had my last radio session.
Sending hugs
God that must have been terrifying! No wonder you felt like you did. The trouble is that now we are ‘in the system’ it’s like they spot extra things! I ended up having a head MRI because I get migraines and now I’ve ended up seeing an Endocronologist because my pituitary gland is domed which is something to do with thyroid function. They also said it’s probably nothing and just normal for a post menopausal woman (I’m 52). Today I spent the morning in the hospital having a cortisol test as my levels are low and that’s linked to thyroid stuff I think. It feels like an endless MOT! I am kind of assuming it’s just them being extra vigilant whilst they’ve got me. Which I am obviously grateful for. But it’s also another thing to feel anxious about, and another thing stopping me from beginning to move on from it all.
I know what you mean @JoanneN. If it helps I kind of feel the same but in an opposite way. I had 8 rounds of chemo and double mastectomy and am about to do 15 rounds of radiotherapy. I often feel that I am making women feel I am trumping them and that they can’t moan at me. They always qualify what they say with something along the lines of ‘well, of course it’s nothing like you’ve been through’. I hate that! It’s just horrifying for all of us, whatever treatment plan we’ve gone through. I never want to lesson someone else’s journey.