I still struggle with wanting to entirely better sooner than is realistic, and with the fact that I'll never be quite as I was. Switching from the drama of 'surviving chemo' mode into a longer haul 'gradual improvement' mindset is tricky for those around me and for me too, in different ways.
I totally agree with you. We are all different but I have found being open created lots of support for myself both in and out of work. It sometimes makes me feel vulnerable but the support has been tremendous.
I finished chemo in September, and started goserelin and exemestane a few months later. This was a recurrence, in 2017 I'd worked part time during radiotherapy then started tamoxifen.
Working out what to share is hard, because it means talking about menopause and things that wouldn't normally come up. I figure it's easier if I can be open and treat it like talking about a broken leg or something less awkward and taboo.
m123- if you don’t me asking, how long have you been adapting, with benefit of a boss who has direct experience?
I think a lot of people struggle to understand unless they've seen someone go through it. In some ways I found people in their 80s easier to talk to than those in their 30s or 40s, as they've seen an awful lot in those additional decades.
My boss is not empathic at all, but his wife's had BC so he's able to understand a lot of what I'm going through, and how long it can take to recover from treatment and get used to any new meds. It makes such a difference.
A very good saying Wonky - spot on.
I hope you continue to move forward and process ….I feel I’ve suddenly taken a big stride and cancer is not so dominant but it’s still a part of me
Wise words and much appreciated. For me, it has been an AWFUL lot to ‘process’ and I’m not done doing that yet. But things are clicking into place, gradually. I think one thing I’ve worked out, is that it can’t be all about the cancer patients (us) adapting to life after treatment, there needs to be a willingness for work colleagues to adapt to us. Oddly, since I went back to work I have had two colleagues ring me with BC scares. One thankfully just a scare, the other unfortunately not so lucky. They both said they hadn’t truly appreciated how frightening it must have been for me. So, I guess empathy is a missing ingredient unless you are lucky enough to be managed by someone who has experienced cancer, first hand. I think the saying goes something like : “Don’t tell me how to walk, unless you’ve worn these same shoes”.
@m123 Your words are all so true ..... I‘m some way along the path but not there yet. I thought once my treatment was finished then that was that but realised that isn’t the case as the cancer thing accompanies you for a while.
Time is the great healer and I think it’s ok to give it time if you need it. I think only those who have been on the journey really understand just how it is.
It took me about 18 months to realise how 'full' my brain was after diagnosis and treatment. Apparently 90% of it was taken up with 'cancer cancer cancer', and it took time, and lots of talking and thinking it through, for that to clear. Being careful about travel and socialising makes it harder to get that distance from things, so be patient with yourself (even if your boss isn't). I hadn't realised how long full recovery takes, and that there are lots of ups and downs along the way.
You don't need to go into details, but you can just let people know that 'recovery takes time' - it's not like a telemovie where you're ok once you're through chemo.
that’s a good way of putting it, that your brain is full up. X
yes have spoken to Macmillan. Must actually try the lovely ladies (nurses) on here too. This ‘warrior’ culture is something some of us debated on here some time ago. Did The Aphrodite Club ever get traction?.
A wonky hug to you. X
Are you sure you're not wtill playing the super-warrior again so your boss has higher expectations that he should. You must be in constant pain after what you went through in radiotherapy and and that nerve pain isn’t going to go away. If your GP considers you have anxiety which impedes work, you’re not fit for work and probably not ready to explore viable work alternatives. Have you had a word with the Macmillan helpline (Option Work) who seem to have heard every experience going?
Sorry things still haven’t sorted themselves out. No one seems to warn us that this takes years and sometimes is inescapable. Thinking of you
Hi there, I’m currently feeling similar. I was diagnosed in Feb2020, 6mth horrid chemo, lumpectomy, MICAP reconstruction, radiotherapy and then 42wks of Kadcyla which ended 2 sessions early due to neuropathy.
I have worked through the majority of the time apart from a couple of weeks for the op. Looking back I’m surprised I did really as there were rough times.
However, now it seems to be ‘well done you, that’s all done’. But it’s not, still joint pain, neuropathy, not sleeping and Im struggling to concentrate at work 😥
Sorry to hear that Wonky.
I don’t really have any helpful advice other than it sounds like you need time. I rushed back to work and in hindsight realised i went back too early - found it quite stressful and just wasn’t able to cope in the way I would have pre BC. My brain was still too full of their stuff and often felt ‘full’.
Could you possibly work part time temporarily?
Regarding pain relief - have you thought about trying any complimentary therapies to see if they help - Akupunktur possibly?
Wishing you all the very best! Sorry not to be of much help.
Quick time- line. Diagnosed May 2019. Lumpectomy and rads. Back to work after 5 months. Hit me very hard but I felt (in retrospect) that I had to conform to the general perception that I was ‘through it’. Starting to feel normal again, then lockdown. Basically was coping less and less each week that went b. GP signed me off with “severe anxiety” three months ago.
Employer seems to be trying to understand, but the conversations are torture. Was perceived as a Breast Cancer ‘Warrior’ / hero etc (the hype has not helped me) when I was in truth shaken to the core by the diagnosis and the treatment. Plus I have nerve damage/pain for life because of what the treatment entailed.
Made my very best efforts to ‘be normal’ again, but unable to cope with levels of stress at work, I would have done pre-BC.
Employer seems to not know what to ‘do with me’ which is just adding to anxiety as no ‘reasonable adjustments’ in the frame, yet but I’m desperate to get them in place so I know what I’m going to be doing once I feel up to getting back to work. Vicious circle.
He went down route of ‘exploring’ the nerve pain - could my GP confirm it? Not exactly a helpful conversation for me and although GP has confirmed the site of tumour etc has led to this being something I just have to accept as part of the bargain, she said it is impossible to prove I am in pain on a daily basis. Conversations get weird thereafter, as regards pain relief as an option. My answer is NO as I’m not prepared to take pain relief on a daily basis for the rest of my career.
Although manager and I have got past this particular matter (I did offer to send a photo of what remains of ‘it’ in all it’s post op/rads glory with its lumps and bumps and contortion, he is now on the tack of do I have PTSD. Tbh I think I might have, I was petrified for a solid 6 months (hated hospitals from childhood).
Feel he simply has decided that it’s all just too much hassle, accommodating the ‘new me’ which consists of 1/3 the old me, 1/3 a woman in daily pain and discomfort and 1/3 a ‘basket case’.
It is a very weird situation to be in, given chances are very high that I am one of the lucky ones, yet the aftermath has taken an enormous toll on me.
Anyone experienced anything similar? Any and all advice would be appreciated. Wonky