Hi all - wondering if anyone feels similar and any tips to re-energise?
Back story - diagnosed in Jan 21 with IDC hormone positive, HER negative + lymph node involvement (having already had DCIS and mastectomy same side 4 years previously) so spent last year having 4 mths of chemo, surgery, radiotherapy and been on Zoladex, Letrozole and Abemaciclib plus bone infusions since September.
I work full time and have 4 primary school aged kids, so a busy life (but I do have help at home). And I seemed to be able to power on through the chemo and surgery but since the end of radiotherapy and summertime, coinciding with all the medication, I’ve felt very flat, very tired, very meh. I go to bed by 9.30 most nights, asleep by 10/10.30 but often awake due to needing the loo in the night. I’m usually a runner but I’ve struggled to get back into it. I’ve still been doing other exercise like strength work, cycling to work and walking but think I need to get more active again (the cold spell not helping with that!) And feeling like I don’t really care about work - yet I’ve got quite a demanding job.
I assume the main cause is the medication + medical menopause / loss of hormones plus delayed fatigue from all the treatments.
Has anyone else felt like this and any tips to get my mojo back?!
Thanks in advance x
Hi, I'm sorry to read this, but I feel the same as you. I've noticed it more this month (I don't know if this awful January has something to do with it). Although my treatment plan is is much the same as your most recent one, my life is not as busy as yours. Im not sure if my medication is a cause of of it though. More likely (well for me anyway) its a consequence of the reshuffling of elements of my life since my diagnosis. For example, I recently returned to work, but on a part-time basis. I could not work full time anymore. However, this hasnt worked at all. I do the job, and there are no complaints about me, but I have absolutely no interest in the job anymore. Its time to go. One reason for this is that I have to sit through meetings that have no purpose, except as a moan fest. We all know that there sure are more important things than doing that!! I really wish that I had gone to a convalescence home for a month, overlooking the sea. A place where I could reflect and adjust, fully rest and get properly emotionally and mentally better. Instead, and like the rest of us, I returned to 'normal life' expecting that things would pick up where I had left them pre-diagnosis. But I'm not the same person anymore, and need to stop fitting my square shaped self into what is now a round shaped hole. I have bought myself a pretty notepad and as it happened, planned tonight to think about what square shaped plans and lifestyle might suit me now. I think I am going to get rid of things that arent working anymore, and slowly introduce things that will work for me, and for the person that I am now.
Sorry to be so deep, and I guess that this likely wont resonate with you ... but certainly, yes, I do feel it. xx
I could have written most of this myself. I feel the same a lot of the time. I was also a runner - not far or fast, but regularly and enjoyed it, and I have struggled over the Autumn and Winter to get into it.
I'm the same with work - I have a demanding job, but just not that bothered about it now, though I am working and fulfilling my obligations.
I felt on quite a high when I finished treatment - it felt so good to regain energy after chemo and to be through the main treatment.
But then I plateaued, and I found my mood swings got worse.
I have done a few things that have really helped - acupuncture helped me get rid of a lot of the lingering anxiety. And then a couple of months ago, I couldn't stand the low motivation, low concentration levels and big mood swings any longer and got help. I'm now on a low dose anti-depressant and I feel so much better. My mood swings have all but gone and I just feel a bit more normal. It is also making me sleep so much better, which then filters into everything else. I had been an insomniac since diagnosis and treatment.
I am still pretty fatigued and concentration can ebb and flow but like you, a medical menopause is not much fun. I am on exemestane too so it is even worse than menopause as I have less oestrogen in my body than if I was menopausal (you are probably the same). That is such a huge shock to the system.
I work from home full time now and don't intend going back as I find it allows me to keep my energy levels up enough to work and do other things that I enjoy.
But I still need the odd sleep at lunchtime and I often have to really force myself up and out to do the things I enjoy outside. I need to pace myself these days too. I used to go from one thing to another all day but I find that tough now.
You are not alone!
I feel like everyone here has written my story…especially about not caring about work. I’m completely going through the motions there and planning how I can retire early. For me, the whole experience has been about realising how little time I spent doing what I wanted and too much time working. Despite the treatment, I actually enjoyed being away from work.
Some things that are helping me;
Definitely recommend Acupuncture, for me I’m certain it’s reduced joint stiffness and aches from Letrozole. Also not suffering any hot flushes. I was given a gift voucher for reflexology at Christmas which I’ve yet to use, but from previous experience a while ago now, it generally improved my overall feeling of well-being.
Running with friends more as a social thing - with coffee afterwards - has helped me keep going. We meet ridiculously early three mornings a week, watch the sunrise, run round a lovely trail/lake area and feel great for it afterwards. Appreciate that might be tricky with young children though maybe a weekend thing.That’s been on hold this week as I’m not going out in -6 even with thermals and I don’t want to slip over!
Skipping (don’t laugh) - have rediscovered how doing a few minutes skipping at various points in the day, energises me. I do work at home though so fairly easy to fit in.
Yoga/Pilates - try to do an evening session of each once a week. Really helps how I move and sleep.
Getting involved with extra curricular activities at work - like our well-being initiatives and employee led networks. We get time off out of our working day to do this and it just breaks the week up with time away from the moan fest meetings - yes, we have those too, think every job involves some degree of those and I just don’t have the patience anymore…
Appreciate we’re probably at different stages of life and hope that you don’t think all of the above are completely impractical. But most of all I hope you find something that helps you xx
It’s been a breath of fresh air reading these replies. Thank you everyone. On the back of my ‘notepad session’ (see above) one of the things that I decided to do was to convert my now unused office into a welcoming and pretty sewing room. That’s a square shaped idea that I am looking forward to fitting my square shaped self into. An elderly friends wife died a couple of years ago, and when he found out that I can use a sewing machine, he gave her machine to me, with her sewing box, only last week. It’s a lovely light machine - more than enough for me. This morning I have spent some time emptying drawers full of unused work papers and paraphernalia, and my son has helped me take it to the recycling / charity shop. I’ll do some more tomorrow and the weekend and that has given me a focus for the next few days.
Tonight, I am going to go through my workload hours, and see how I can stay in the role for two more years (2.5 days a week) before retiring fully (I’m 61). I have been asked to get involved with an initiative with people outside of my normal team (they are lovely people) and that will be a change for me. We are given work hours for this - usually we are removed from meetings or some kind of admin role to do it. Thank you @NBI for reminding me of the benefits of doing this and to look at the job from a different angle.
I too walk briskly, everyday, and I admit that I have got out of the habit of walking early in the morning. I really like doingthis, and it does improve my mood. I think the recent very wet weather / snow / ice got me out of the early morning habit, and I will start that again from tomorrow.
Looking forward to reading more replies and ideas. Xx
Thank you all for replying. It definitely helps to know I’m not the only one! Am looking into acupuncture and reflexology - a friend has also suggested shiatsu massage worked for her.
I think I need to try and regularly schedule things like runs or a yoga class so I commit and get back into the rhythm on them. And try and find some joy at work somehow!?!
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