Been a few months since been on here. Just pondering my first follow-up appointment tomorrow. I suppose its made me contemplate life since the end of radiotherapy. What can I say? More tired, is it age or treatment? Im 53 btw.
Harder than I hoped to get through a 12 hour shift on critical care - on the other side in my day job lol. Have developed anxiety over potential nightshifts ( known to increase cancer risk, just when Im at a point of trying to reduce it as far as possible).
Do I mention insomnia before a shift because the last one was, short staffed, hard graft and spent from mid-day onwards with increasing neck/shoulder pain and the last 2 hours with aching legs?
Finally got to sleep around 2am, only to be woken up by rib pain at 4.15 (I looked at the clock) Cried at the pressure ( not the pain, wasn’t that bad, just enough to rouse me, I’m a light sleeper). So another 12 hour busy shift after after 3 3/4 hrs sleep ( I dozed again between 5- 6.30). Got through the next shift by being armed with lots to drink ( dehydration can cause back pain and 3 cups of coffee in a 12 hour shift, probably was not a good idea) ibuprofen (though wanted another after 3 hours, so I guess not fixed). Voiced my flagging tiredness to colleagues and tbf, they rallied round and helped. Hmm… I’ve only had radio, no need for chemo. I ditched the tamoxifen after 3 months, so its not that. I have noticed that when my breast starts doing more tigling & nerve shoots, a day of tiredness follows, like today.
This is life going forward I suppose, assessing the difference between treatment effects, ageing or recurrance. Im guessing its more likely the first two scenarios, but youre always going to wonder. Just as well I’m an optomist and not particularly anxious as a person.
Thought I’d put it out there how life on the other side of treatment can be. If I mention every ache I have at follow up, will they nod sympathetically, give advce on symtom control, or send me for a bone scan? - that in itself can induce anxiety of the type I’d rather was behind me.
Hope my lengthy post helps to resonate, thanks for reading x
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Good luck with your appointment today , I would tell them how you are feeling physically and mentally - you will probably find that they re-assure you that these things are part of the recovery from an experience that is physically and mentally extremely stressful . I think most people would find a 12 hour shift in critical care pretty exhausting even without the insomnia . I was 51 when diagnosed and returned to a very demanding public sector job I found it took me a long time to get back to anywhere near where I started from mentally in particular .Can you advocate for not working nightshifts in the near future as part of reasonable adjustments or is that not practical ?
All this treatment is taking its toll, be kind to yourself.
After a cancer diagnosis the disability discrimination act applies to you. Perhaps call Macmillan and talk it through - reasonable adjustments are needed for you. Your union should also be able to help. But Macmillan are definitely helpful and can advise.
Big hug
I want to thank you for giving us a realistic view of life post treatment.
I have had surgery and am about to start radiotherapy. The hospital team have been lovely but it’s routine for them- whereas for me, it’s new and unnerving to be faced with all the appointments and checks etc.
I returned to work post surgery and intended to work through radiotherapy but it’s happening over Christmas when I’m mostly on leave. Being back at work is hard! And I’m not sure how it will be in January when RT ends.
I am simultaneously worried and looking forward to treatment ending. Although 10 years of medication probably means it’s not really ending is it?
Thank you again for sharing your experience.
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Hi peppermint,
I admire your working through it. I had 19 lots of RT, wasn’t too bad untill I hit a wall in the last week and felt like I was getting to the end through gritted teeth - body physically tired then to add to the mental slowness that tamoxifen caused me, and insomnia. Also skin getting sore - under breast in the crease line where bra goes. Also very tender, itchy nipple, which doubled in size to the other one ( back to normal now)
Been feeling quite a few breast twinges (not painful as such) lately, and some tenderness in my ribs ( this is 4 months after RT) unexplained tiredness yesterday after gently walking the dog, beginning to recognise the occasional washed out day that seems to happen for no reason as it was my 3rd day in a row off work, so unrelated to that. I suspect the ongoing healing and inflammation comes in waves, then settles for a while in between, till the next time. Trouble is, you never know when its going to occur, luckily only got 1 shift this week as had already booked some annual leave before all this started (for last minute xmas shopping I end up doing every year lol).
Personally, the benefit of tamoxifen is only small, with also a reasonable chance of resistance to it, due to other receptors. So given the side effects I had, I decided it wasn’t worth it for me. I’d always recommend people give it a go though, and AI’s, especially if others get more benefit.
I had it for 3 months and stopped at the end of RT, so felt loads better ( took about 2 weeks for the hot flushes to stop) not had one since. Got my periods back though (yes, still pretty regular althogh 53 yrs). Late menopause is a big risk factor.
The follow-up was just a general chit chat about anxieties around work. She did advise trying union rep if my desire to not do nights is not fulfilled. Hopefully it wont come to that. Will see what turns up on the next rota, as had to change the last rota when it came out due to being put on nights - someone didnt get the memo. I’ll self refer to Occy health if it happens again and get it in writing ( though I have asked them to refer me if they need it in writing). Got given a leaflet about signs of reoccuance to look for -already ahead on that info. Asked about ways to access counselling - I think a one off session could be useful just to have an anonymous rant for a while might be nice.
Anyway, looking forward to what should be an excellent afternoon/night out on Saturday with, food, drink and a gig. Still taking opportunities to have fun.
Thanks for replying, hope your RT goes well and you get minimal side-effects, everyone is different, just got to roll with it x.
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Thanks for your reply- it’s really good to hear from someone who’s done that and got the t-shirt. The breezy attitude from hospital team has undermined my trust a little bit. “You’ll be fine, you’ll recover quickly, it’s only a lumpectomy (both breasts!), don’t worry about hormone therapy- you might not have side effects…”
I would rather hear the doom and gloom quite frankly!
Glad to hear you’ve built fun into your life- I will be booking some holidays (yes multiple!) after all this nonsense is done. Spent too much time waiting- time to get busy living!
Wishing you all the very best 
Hi @entropy
I hope your appointment has gone well and that you are feeling less anxious. I don’t have follow up appointments anymore but I do get stressed before my annual mammogram - which is next week. I’m not as stressed as last year but I’ve had discomfort in both breasts and my right axilla and upper arm for 2 weeks and I’m hoping it’s psychological . I’m also a Nurse and unfortunately in our job we are constantly reminded of cancer / illness and it’s effects . Like you I abandoned the hormone therapy after 5 months and that did cause me anxiety ( still does occasionally ) - I’ve been discharged by the Oncologist but the Breast Team have been supportive of my choice .
You have done really well to get back to your 12 hour shifts - forgive me if you have already done this but have you asked for reasonable adjustments ? You are entitled to these as cancer and it’s treatments come under the Disabilities Act . I was just a year older than you when I had to have these put in place following a retinal vein occlusion . I struggled for the first few weeks even on my return to work plan and had a lot of anxiety about something happening to my good eye. I no longer work nights - perhaps they could reduce the amount of nights that you do .
I was eventually able to take a retire and return - lower band less responsibility fewer hours and no admin on the computer so much less strain on my eyes. I know that not everyone is able to do this but now might be the time to think about your career and if you can continue as you are long term - though it does sound as though you have a supportive team . It may well still be early days for you yet though . I got post- radiotherapy fatigue and complications in the 3 to 4 months after radiotherapy but I have heard of people getting fatigue a few months down the line so you may still have it. I had a lot of tightness in my rib area which I underestimated when I increased my activity level and aggravated it - I’m wondering if your very physical job might be the cause of your rib pain and if you might benefit from some reasonable adjustments with this at least for a while to give your body a bit more time to recover .
Take care xx
Hi JoanneN,
Good to hear from a fellow nurse who understands how physical the job can get.
Done 5, 12 hour shifts so far split up over 2-3 weeks, so still early days. First couple ok until the ward got busier and short staffed from people being off sick - usual inevitable winter pressures.
I feel like I’ve got less energy and more twinges and sore ribs (new), than when I went on holiday at beginning of October - where I walked 20 000+ steps most days and swam in the sea/pool. Could be work, dark days, or munching my way through 2 medium-sized xmas puds with brandy sauce - ( in last 2 weeks) a weakness of mine this time of year. Not been to the gym last 2 weeks, whereas went a few times a week throughout treatment ( it was a good focus).
I usually have a healthy diet, but lapsed lately with a few treats. Started taking vit D this week and no more pud buying. Next step is to get myself back in the gym. There’s room for improvement, too much lazying about on my days off. A few strategies I can try before I throw in the towel and drop hours - which I will consider if I need to down the line. Have enrolled on the moving forward course - seems like a good enough reason to have to get a shift moved for ( gets me off 2 long days in a row in January, others are split till Feb).
Ive always noticed if I eat stodge, then I feel sluggish.
I will be taking steps and asserting my rights if theres an issue with not doing nights :-).
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…also, yes, you do wonder how much is psychological. Hope your mammogram goes well - and isnt too painful ( non are comfortable). X
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I know the dark days affect me though since I’ve been part time it’s easier to get out in the daylight . It does seem that my one shift this week coincides with the only sunny day in the week which is a bit annoying. I found the Moving Forwards course helpful for processing and by the time I had finished it I was in a much better place than when I started it. I take a Magnesium supplement and I’ve recently started Turmeric shots as well - my Ibuprofen intake has gone right down as a result . Turmeric is a bit controversial and has some interactions though . Good to hear that you’re prepared to fight your corner though I hope you won’t need to. Xx
