I was diagnosed in November 2018 and had a lumpectomy followed by radiotherapy. I am now on tamoxifen and prostap injections. I went back to work full time in April 2020 but finding that I am increasingly struggling with tiredness, joint pain and brain fog. I’have just been signed off and have approached my employers about an occupational therapy assessment and possible reduction in hours.Has anyone else been in a similar position and can offer any advice?
Thank-you in advance.
This may not help at all, but I worked throughout treatment (chemo, lumpectomy, radiotherapy) and I think it really helped to keep my brain going! I had a few days off after each chemo cycle and again after the lumpectomy but other than that, I worked full time from home - sometimes 9/10 hour days. This is probably the opposite to what you want to hear but i think there is something in the 'use it or lose it' thinking when it comes to your brain.
Having said all that, other things that I think help: I run or walk every day plus do other things that I love to do so keep active. I find that really helps with tiredness (I finished chemo in January and had my operation in Feb and rads in April). A bedtime routine helps with getting enough rest. I go to bed and get up at the same time every day so my body knows when to sleep. I find that helps with the constant waking from night sweats. They were really tough at first (medical menopause) but have eased and I'm better able to cope - like not panicking and getting back to sleep.
I also take supplements that I think help - magnesium, calcium, vitamin D (with vit K), glucosamine and sage tablets for the hot flashes, as recommended by my BCN.
I am still working from home full time with no intention of going back to an office any time soon due to covid cases still so high. Even before cancer diagnosis, I realised how much travelling to work tired me out when I was able to work from home full time. If you have a job where you can work from home, then that would definitely help with tiredness. I know not everyone is as fortunate as me with that.
I worked through the first four cycles of chemo - it probably should have been three as the fourth was really difficult. In hindsight it did affect my ability to properly rest and recover in between treatments, but I wasn’t ready to give up working.
My doctor was happy to write a note for reduced hours and my workplace were happy to accommodate that. I think if you have a conversation with your work then your GP will be happy to write a letter to support your request?
I’m working a day a week only at the moment as I recover from chemo and surgeries and I do wonder how much I will be able to work even once all the treatment is done.
I hope you can find something that works for you
Thankyou. I do think it’s the travelling to work which tips me over. I have 45 min drive each way on a good day. Totally agree I want to keep active both physically and mentally. Maybe a change in direction is the answer
I don't know what you do, but are you able to work from home? Even some of the time? That could be a way of reducing the travel.
I was diagnosed in October 2019, mastectomy in Jan 2020 followed by 6 x chemo and 4 weeks of radio. I'm on Letrozole now. Went back to work in November 2020 on a very slow phased return (this was put back a month due to covid diagnosis in early october - but I still think, in hindsight, that this was far too early).
I work in a school and the head changed whilst I was off. I also am struggling with tiredness, joint pain and brain fog and Its been a really hard to feel that I'm able to do my job (I'm a School Business Manager in a primary school - so its full on!!). As I have now been back a year, any "support" has now ended as the expectation is that I should be doing my whole role - but its so hard, I'm completely overwhelmed and my GP has just signed my off for 3 weeks. I really had to fight to get any support when I came back and I feel tired of fighting; their lack of empathy has just made it worse. It has really affected my confidence in my ability.
I really don't know what to do - I have worked there for 17 years - do I just hand my notice in (but that just feels like I'm cutting my nose off to spight my face!). I'm looking for other jobs but whatever I do, my income will be effected.
I'm sorry, I don't have many answers but feel like we are in a similar position.
Hi, so sorry to hear you are not getting the empathy and support you need. Firstly I would say please do not resign. Have you talked to the Macmillan work support service, this could be a good place to understand your rights. https://www.macmillan.org.uk/get-involved/campaigns/your-rights-at-work
And have you talked to your HR team? I am not sure how this works in a school. But there should be someone to help you.
hope this helps, most importantly, hope you start to feel better in yourself x
Hi Sarah. Thankyou for your reply. I totally agree with Irish Girl. I’ve spoken to Macmillan and they were amazing. Following their advice I’ve asked for an occupational health assessment at work. I’ve also been in touch with my Union who advise the same.
I teach in a primary school and understand how full on it is. I have lost count of the number of times I’ve been told I’ve beaten it. I know this comes from a good place but unless you have walked in someone else’s shoes you don’t understand. I totally agree with the confidence..it’s horrible.
Please do contact Macmillan, I can’t praise them enough
Not sure if you are a Union member? If you are, get on to them and ask for help.
I used to work in the NHS and I know of several people who hadn't been members and who joined Unison online due to issues that they were experiencing in the workplace [after the issues started to become a problem for them]. In education there might be a more obvious union. I just had a look and it says they are for anyone in the Public Services. Having a rep speak for you can depersonalise things for you, so that it isn't you yourself who has to ask for amendments to working practices/workload or to work from home sometimes as a 'reasonable adjustment'.
All the best
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