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Post-treatment Tired and can't afford to be
Hi there,
I am a 60 year old who has had a pretty-easy, early-invasive BC journey: Small, ER+, PR+, HER-; Lumpectomy with clear margins; 2 lymph nodes taken but uninvolved; Axillar seroma drained; 15 fractions of RT; Maybe some early lymphodema in breast, Letrozole from diagnosis through RT but then told I would not benefit much from it (0.6% benefit in reduced recurrence rates) and discontinued it due to side effects.
I am 4 months post-surgery and 6 weeks post-RT, and have been off Letrazole for a month or more. I am back at clerical work (work from home) full-time now, after working back up gradually, and I am stuffed!
I can barely get out of bed in the morning, and if I can stay upright in my seat and keep my brain focussed, by the end of the day I am completely useless. Rad Onc says the fatigue should not be RT related at this point.
Now I feel like I should be able to just "snap out of it" but that's totally beyond me and I just want to cry and sleep.
(For transparency, I should maybe admit (& remember for my own benefit) that since my initial biopsy my husband and I have organised a son's engagement party, done a road trip and purchased a home 1500 km away, organised renovations and done 2 more trips to keep tabs on the works, watched 2nd son sworn in as a cop, and seen no. 1 son marry. Maybe that's part of the fatigue ...along with the panic over working full-time, decluttering/downsizing, packing and moving in 3 months.) Maybe my problem is actually a dose of insanity...? 🤪
Can anyone with a similar, "straightforward" BC journey share whether their "normal" returned and how long it took?
Thanks for "listening".
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You're only 6 weeks post radiation - you will for sure still be feeling post-radiation fatigue. That rad onc is talking nonsense honestly
Thank you all so much for sharing your experiences, kind words and hope! It all helps, and knowing that there is a caring community here probably helps the most! Best wishes to you all.
Hi LP020406
I was 68 when I started seeing a counsellor for what turned out to be about six sessions over ten weeks. I wasn't exhausted - but as a previously almost never sick person, I wasn't sure what changes, if any, lymphoedema, an arrythmia and peripheral neuropathy (all manageable) were required in my life. At no time did the excellent woman I was seeing use the term 'insanity' - but she most certainly did not use normal either. I'm (belatedly!) not a fan of 'getting back to normal' - mainly because we only live forwards. Cancer has happened and even with a brilliant recovery, you are no longer exactly the same person. You are a bit older, maybe wiser, almost certainly tougher, and far less surprised by what can just 'happen'. My counsellor was a little more specific - she didn't think there was anything 'normal' about my 'normal' life. Long hours, public events which were lots of fun and also riddled with potential dramas, political environments, see-sawing priorities, lots of 'after hours' time commitments. Quiet weekends? Sometimes, but she nailed me on 'were they really relaxed or was I just recovering sufficiently to start again on Monday?' I enjoyed what I was doing, I enjoyed being the sort of person who could do it, I didn't take almost any time off during treatment, I handled surgery and chemo well. Her prescriptions were simple - at least 20 minutes in the fresh air, doing nothing, daily. Learn to delegate - if that means that the person you have delegated the task to is slower, or even slightly less efficient, see it all as their learning process! Prioritise time for yourself - that is not free time, it's committed time. Stop congratulating yourself for managing tumultuous times, think more about whether you really need them or not. At no time did she mention mortality - I am sure she knew I would get to that in time, which I did. My Jane Eyre principle - 'I will keep in good health and not die' - stood me in good stead for seven decades but it's not perfect! Thinking about time perhaps being finite a bit earlier than I did might have been useful, but better late than never. So start with coffee in the garden and breathing. Delegate. Keep moving forward. Visualise a 'normal' where you can build energy not just expend it (that one took me quite some time!). If you like reading, read. If you like listening to music, do that and nothing else for half an hour, regularly. You'll find a new normal and it may even be better than the old one. Best wishes.
No need to stop! I've never believed that stress causes cancer (although certainly not good for you in general terms) but stopping what you enjoy doesn't do you much good either. Small steps. I could do the 20 minutes in the garden straight away. I had staff to delegate to and most of them (not all!) were pleased to have more control. Those who weren't learned fairly quickly that I was abandoning the old habit, when things didn't go so well, of saying "Oh, give it to me, I'll do it!'. I was happy to advise but it would have to be done again. Efficiency increased. I was over a year after diagnosis, no longer in active treatment, when I was offered a new job - 'Thank you, but I couldn't possibly....' had already left my mouth when I realised that I could. Three conditions - my new boss needed to know my age, my cancer history and that I wanted a four day week. The answers were 'Don't care', 'Don't care' and 'Yes'. Four day weeks are common now, and with a bit of organising and retaining my preference for working till about 7pm on workdays (blissful peace to get on with stuff in an empty office between five and seven!), just as much got done. But a three day weekend was a revelation. The 'battler' terminology lends itself to seeing cancer as an endless struggle against the enemy - and some if it is a struggle. But holding one's ground, and still caring about your body and what it can still do, is important too. Good luck.
You have been busy in such a short time not a medical comment but now maybe your mind and body that you have finished treatment and parties and moving (similar to getting sick in holidays because we take our foot off the pedal)
Kind thoughts for you (i am day 1 post op and appreciate everything that lovely people share that gives hope 💕💕💕)
LP020406 You've achieved a lot in a short space of time! :) No wonder you're exhausted!
But in all seriousness.. we all recover in different ways.
I was still fatigued 6 weeks after radiation and medical people were telling me my tiredness could be due to the radiation, that I was still healing. I would get through the work day but then I would crash.
Have you had any blood tests after radiation? I had a blood test and found my iron storage had completely and utterly tanked. There's various bits of research suggesting that can happen with radiation. 6 months after radiation my iron storage was still struggling so I'm now taking iron every day (rather than every second) hoping that when I get it checked again next month it will be better.
8 months after radiation I'm still sleeping at least an hour more than I did before radiation though that might now be due to the medication.
I'm still waiting for "normal" to return but overall I have much more energy than I did in the first few months after radiation.
I've got quite good at prioritising - some things don't need to be done at all and others can definitely wait :)
