Oh how your post resonated with me. I’m just not the woman I was. I’m a bit ahead of you, diagnosed September 2018, but the only thing I’ve not shared in your experience is the prolonged antibiotics and lymphodoema. I was lucky to be referred to the oncology rehabilitation physio and she made sure of it. But I feel I’ve aged by 20 years (and I was 67 at diagnosis!).
I feel like a walking, talking, breathing mass of side effects and the outrage, as far as I’m concerned, is the absence of holistic aftercare for cancer patients. We get the treatment, we’re passed on with the assurance that the symptoms we’re experiencing will ease off and that’s it - we’re in the hands of volunteers, often very experienced in their one field but no one with any medical overview. Unless you persist. I was treated in a regional centre of excellence and they only have the service for children, so heaven help anyone treated in their local hospital. Rant over.
My poor oncologist is trying to fathom out all my problems. It’s not the anastrozole - I’ve had two periods off it with no easing of symptoms. I say my poor oncologist but I speak to a different one every time. I do at last have one taking an overview, with referrals to every department except obstetrics as far as I can tell. But departments are unwilling to see people with something so vague when there are real emergencies to be dealt with in the current pandemic. So far I’ve been told by rheumatology that the chemo attacked my tendons (I was underweight during treatment and it hadn’t much tissue to choose from) and left me with sarcopoenia (muscle loss) which is causing the joint pain. Cure? Exercise. Hmmm.
So, you’re not alone. I too have experienced depression and I recognise there are some similarities. I do wonder if that’s not a factor in my fatigue, which can hit any time. If I can strip a bed, that’s it for the day. I have exercises from rheumatology, community physio and OT, all done over the phone which I can’t get my head round. But I can’t break through the fatigue to do the exercises - and how do I do my knee and thigh exercises when every bone in my feet hurts so much? So then it all turns inwards - I’m not doing enough to get myself stronger, I’m letting my husband down, I’m enjoying being the invalid. None of that’s true and I catch the thoughts before the damage is done but, quite frankly, post-treatment recovery is full-time work for me and I am awe-struck that you can hold down a job.
The fact is, we have to treat ourselves as we would treat others - with kindness and compassion. We aren’t like this on purpose. We all have our own unique physiology which will respond to treatments in our unique way. It’s not effing fair but it is what it is (ugh, sorry for that cliché). We will get through it and, vaccination allowing, we’ll soon be energised by being in fresh company and different scenery. Meantime, if you had a good breast-care nurse, then give her a call and talk about how you’re feeling. The emotional is as important as the physical, after all. If not, try the number above - the nurses are very reassuring - or ring Macmillan which has a broader overview. I find some of the classes offered online by Breast Cancer Haven really helpful, especially the EFT. Even if that doesn’t work, I’m in zoom company with other women laid low by breast cancer (none of the I-sailed-through-it brigade there). It’s comforting in a perverse way.
I hope you’ll get other responses. Reading between the lines, there are many of us here who feel abandoned to our fate (and our perplexed GPs). And sorry for focusing on myself so much. Take care but take some action? Jan x