What do we accept as normal after bc.
I am still suffering 12 mnths on from dx, i have severe joint pain, which is terrible in the night. Its almost like sciatica down both sides. If i sleep on my left side its in that bum cheek, hip, thigh, and knee, and the same if i lie on the right. If i lie on my back its down both sides. The only time it doesnt hurt, is on my tummy, but cant lie on that for too long as it hurts my reconstructed breast.
I am being treated atm for nerve pain, with pregabalin, but looking at the side effects it causes joint pain. So i feel like i cant win.
Also i am on tamoxifem, but my onc doesnt believe its anything to do with that. He says its more likely to be still side effects from the taxotere.
I just feel like i am never going to get back to normal again.
My gp says that i wont ever be back to normal, and i have to accept this, and try to make the best of it. I ts almost as if she things its all in my head. But I just wish i could put her in my body for a couple of nights.
I am very greatful for the rolls royce of treatment that i have had, and that i have have just had a clear scan. But what i am expected to class as normal, 50% of my former self, because thats what i am at the moment. If i have to suffer like this for 5 yrs, i dont think i can cope with it.
What % of their former self does everyone else think they are at now, after treatment?
Sharon x
Hi sharon I agree - what is normal? I to am 12 months on and have all sorts of aches pains, niggles etc etc which for me now are ‘normal’. I worry about every little twinge, headache, pain etc thinking its spread and I think about cancer every day. I take Arimidrex which makes my joints stiff and difficulty moving around particularly when I have been sitting or lying for a while. I also get very tierd very quickly and my energy levels are not what they were.
When I first started taking Arimidrex I had severe pain in my left thigh, a deep shooting bone type of pain that did keep me awake and I too thought I would not be able to cope with it. To be honest it gradually got less and less and now I don’t have any pain at all its almost as if my body has adjusted to it (its taken about 2/3 months) If you are not sleeping it must be very hard for you and I agree people don’t understand how dibilitating it is. Have you thought about getting some painkillers so at least you are able to sleep?
How much of my former self am I now? Well one year on and like you clear (ish) scans, (various scares) I would say around 70% of my normal self - I think thats probably as good at is gets to be honest. On the plus side I am alive and I am so grateful that I found my lump when I did and that the treatment I recieved has kept my cancer at bay - It may come back who knows? so I am trying to live for today and make the most of however long I have. x
Hi Sharon, I can sympathise with you wholeheartedly. Although I only finished chemo and rads in Dec I have had bad joint pain since starting the Tamoxifen in Jan. Apart from the night sweats, I do get a fairly good nights sleep,but during the day I find that just the simplest of tasks hurt and it’s getting me down.
Also been told it’s due to the chemo not the Tamoxifen,but I’m not convinced.They say that it can take up to 12mths before the joint pains ease off,but I can’t wait that long.
I had a very active life before BC and now can barely walk,never mind do any form of exercise. I used to love going to the gym 3 times a week and riding my bike,but since I have finished my treatment I’ve tried to go back to doing both and ended up in bed for the rest of the week.
I have put 3 stone on since being diagnosed and feel I will never look like my old self ever again. Some good news though. Went to see my GP (who is lovely) and he has referred me to a clinic where I will get to see a nutritionist and start to have physio next week. Hopefully this will help me get my walking legs back and get my life back on track.Lol
But at the moment as a % I only feel 30% normal.
Best Wishes Francesca xx
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Hi Sharon,
I finished chemo last September and Rads in November,am on Femera since then.
I still have intermittent nerve pain in hands and feet,and am very stiff and achy in joints on waking,gets better once moving but returns in evenings again and is worse when I am tired.
I still get periods of fatigue but these times are less frequent and severe.
I know I will never be as I was before diagnosis and treatment but keep reminding myself on the worse days that this legacy is better than breast cancer and all that would bring.
I am now walking more and swimming,things 3 months ago I could not have contemplated so its onwards and upwards…
best wishes and take care,
Traceyx
Just a thought Sharon have you tried Massage for those aches and pains it sounds like it could be what is known in short as your I.T. bands, this can cause dreadful pain when they are tight. Mine have become tight through not doing as much as i had and then doing a lot of walking. It might be worth checking it out as sometimes we blame it on cancer and there is a small chance it may not be.
I also find stretching helps.
like hotmomma, I wasn’t convinced that the joint pain was due to chemo (ECMF x 8), not tamoxifen. Sure enough, when I finished my 5 years of tamoxifen, my joint pain improved so much that I could face standing for several minutes at a time. In the meantime I found swimming and yoga helped alot - I looked pretty fit, lost some of the 3 stone that appeared during chemo and could walk for quite a distance on the flat.
Ten years on and I’m still getting better: as a percentage, I’d say 50% after 2 years, increasing slowly to about 70 or 80 now. My nurse told me not to compare with last week, or last month, but with last year to measure the improvement. I’m now working full time again, going to choir once a week and dragging myself to the pool maybe 3 times a week. (I largely ignored the advice from my male GP ‘don’t overdo it, only swim 5 or 6 times a week’)
Hi Sharon
I was dx with a nerve condition years b4 BC called Fibromyalgia. 1 of the drugs used is the 1 given to you. If you find there is no relief there are others you can try. I am on Arimadex and now get nerve and joint pain!!! The drug I am on helps with the nerve pain alot. Another drug may well help you. Its just a thought.
Barbara