Forum Discussion
Long Term Side Effects
Hello All
Hardly ever on the site now, wow its changed!! Hope I'm doing this right. Going okay, had to look up my details to remember when I was diagnosed .... and realised they were wrong!!! 1st November 2013 the day they officially said the big C (knew before then but confirmed) so yes apart from doc visits I don't think of BC constantly anymore. So had lumpectomy +auxiliary clearance, 4 AC, 4 Docs/hercepton, 30 days rads, rest of hercepton.
Still have a lot of side effects - although my sister did say "you have aged all the way through, so might be normal" 53yrs at diog, now 57yrs old!!!
My ears still ache every now and then. My teeth / jaw ache every now and then. My joints / bones never returned to pre treatment, and when I hurt myself it takes so long to feel better, and I am a walking orchestra - my joints audibly click a lot. Quite amusing. Still get tired quite often (as in I have to nap), especially stressful times, and my brain can only handle 1 problem at a time, so annoying. My hands and feet never got over the nerve damage - particularly my feet. Not numb, just stiff and weird feeling. Unfortunately walking not enjoyable anymore. Can't quite explain it, can't do anything for long. Walking, sitting, standing. Feet get heavy, ache and am tripping a lot. Still got a redness on palms of hands - all the fleshy high spots. Looks weird bright red on the 4 fleshy bits under fingers, the fleshy bit under thumb and the fleshy bit on the other side. Seem to of developed mild allergies - eczema on hands sucks, still using Dermaveen soap, shampoo. Get so itchy if I don't, but haven't had the full blown rash on my face/neck for a while. Still can't use perfumes, scented lotions etc. Nails have finally lost that yellow I'm going to come off look. Developed a thyroid prob during chemo (not not caused by chemo they say!!!) but I'll say if I had it before it was very well hidden. But it also isn't too bad, pills keep it under control. Am still dry, have to drink a lot of water, once oily skin/hair is now dry. So the feet problem the worst of it - has impacted on my lifestyle.
My boob has still got the distinct red look - you can still see exactly what they irradiated!! Hard lump on the scar sites, numbness especially around the node incision site. Finally lost the leaning on flywire, dirty look!! A bit of pain in the boob still. Get uncomfortable under the boob on the front and back, about down to the waist - it happens most afternoons so have deducted it is also fluid build up. Some days I want that Bra on, some days I need to flop around.
So whinge, whinge, and yes sometimes I so long for the old me, but most the time I am glad to be alive.
Pam
Hardly ever on the site now, wow its changed!! Hope I'm doing this right. Going okay, had to look up my details to remember when I was diagnosed .... and realised they were wrong!!! 1st November 2013 the day they officially said the big C (knew before then but confirmed) so yes apart from doc visits I don't think of BC constantly anymore. So had lumpectomy +auxiliary clearance, 4 AC, 4 Docs/hercepton, 30 days rads, rest of hercepton.
Still have a lot of side effects - although my sister did say "you have aged all the way through, so might be normal" 53yrs at diog, now 57yrs old!!!
My ears still ache every now and then. My teeth / jaw ache every now and then. My joints / bones never returned to pre treatment, and when I hurt myself it takes so long to feel better, and I am a walking orchestra - my joints audibly click a lot. Quite amusing. Still get tired quite often (as in I have to nap), especially stressful times, and my brain can only handle 1 problem at a time, so annoying. My hands and feet never got over the nerve damage - particularly my feet. Not numb, just stiff and weird feeling. Unfortunately walking not enjoyable anymore. Can't quite explain it, can't do anything for long. Walking, sitting, standing. Feet get heavy, ache and am tripping a lot. Still got a redness on palms of hands - all the fleshy high spots. Looks weird bright red on the 4 fleshy bits under fingers, the fleshy bit under thumb and the fleshy bit on the other side. Seem to of developed mild allergies - eczema on hands sucks, still using Dermaveen soap, shampoo. Get so itchy if I don't, but haven't had the full blown rash on my face/neck for a while. Still can't use perfumes, scented lotions etc. Nails have finally lost that yellow I'm going to come off look. Developed a thyroid prob during chemo (not not caused by chemo they say!!!) but I'll say if I had it before it was very well hidden. But it also isn't too bad, pills keep it under control. Am still dry, have to drink a lot of water, once oily skin/hair is now dry. So the feet problem the worst of it - has impacted on my lifestyle.
My boob has still got the distinct red look - you can still see exactly what they irradiated!! Hard lump on the scar sites, numbness especially around the node incision site. Finally lost the leaning on flywire, dirty look!! A bit of pain in the boob still. Get uncomfortable under the boob on the front and back, about down to the waist - it happens most afternoons so have deducted it is also fluid build up. Some days I want that Bra on, some days I need to flop around.
So whinge, whinge, and yes sometimes I so long for the old me, but most the time I am glad to be alive.
Pam
11 Replies
- This site gently motivates us to be positive, if not for our own sakes, then for others. But the darker side is also an honest and legitimate response. I got terrified of ending up in a wheelchair at one point, it didn't happen and I will always bear that in mind. But I don't forget how I felt either. Take care, Alison.
- Thanks @Afraser. In my past life I was paid to be the devil's advocate; I'm the risk assessment queen and tend to actually look at the dark side. From a business prospective that's useful but it makes for grim viewing in my personal life.
After nearly a decade of advocacy I have a number of people I can talk to, I suppose the attraction here is the relative anonymity. Many of my friends and colleagues have died in the last couple of years which has made me fatalistic.
There is not much to done until I see what is left of my functionality after my treatment is finished. For now. Thank you for your support, I also appreciate your candor. Marg - Zoffiel
I hear you, I am so sorry and I understand that everyone has to have the control in their life that matters to them and not just to others. Is there anyone you can talk to on your own terms? We have all benefitted from your "tell it as it is " attitude, what can we do to help? - @Karenhappyquilter. I'm not sure it was worth it. 10 years ago I was able to work through AC, mastectomy and reconstruction. I was so conflicted about chemo this time. TC is a shit of a program and I have no confidence in it; I succumbed to pressure from family and friends and now know I have made a huge mistake.
My life as it is sucks. There is no way I can sell myself in an overcrowded job market when I can't walk because chemo crippled me. This disease will still kill me, now I will die in pain and poverty. - I finished the usual surgery, chemo and radiation last July. I am now on Tamoxifen. I get tired and have to rest every day, sometimes I have a nap. Can't stand for long. Or walk for long. Some lymphedema. Odd unexpected pains. Still get breathless at unexpected times. One boob red and smaller than the other one. Slightly shaky limbs even when I am resting or wake up after a night's sleep. I sleep badly but I was never that good at it. Quicker to anger. But yes, very glad to be alive! Good luck to everyone. Karen
- I've just finished treatment and have tingling toes on both feet continuously and also my fingers but not continuously and pain in feet, knees, bones, body when I stand up so I try to start walking around to try to loosen up. Don't know if an Osteopath or chiropractor will help. It is interesting it lasts for so many years. I have started the hormone treatment so it sounds like a combination of all the treatment. No one is whinging but sharing information is so helpful and supportive. Thank you as it is a continual lifetime journey isn't it. I'm 68 young. Kathyx
- It's a hard road this survivorship and adjusting to the new normal. I hope things still improve for you. Kath x
- @HIT
want to tell you my chemist allowed me to loan it for a week to see if I benefited from it first... so go into your local chemist and see if they do the same then if it works you can buy it .... - Thanks to you both
My feet are a pain, and I am always conscious of them. They feel weird all the time, I am moving them all the time, even when asleep according to hubby. But they were never numb, just stiff, heavy. I never got pins and needles, just the muscles seem to of seized. I can only sit, stand or walk for so long before I get uncomfortable. Why sitting I don't know - My feet get heavier and heavier and start to ache. I have to get up and walk, and after a while they get heavy and ache, so you stand still for a while, and they get heavy again, so you sit and they get heavy ... viscous circle. Drives me insane. I should go and see if they can do something but am petrified that they will take my drivers license. I can manage to drive for about 3/4 hr now before I have to stop, but life seems to be planned around my feet grrrrr
And oh boy whinging again. I will invest in the dawn frazer machine, and keep pushing myself, at least you have given me hope that it can improve. Pam - I too still have funny feet - 4 and a half years from diagnosis. I find walking helps though, standing for long periods of time is the real problem for me - I get real hobbit feet - they feel twice the size and furry! But at the speed of a glacier, feeling is returning. The ends of my toes joined the rest of me about 6 months ago! Good to have them back, it's remarkable that the nerves can still switch back on. At 71 I will only accept that some aches and pains are age related with great reluctance but no treatment caused my creaky knees!! Best wishes, recovery can take an awful long while but it's good that it can still happen.
