Advice/support needed
Advice/support needed I just finished a conversation with my (ex) breast nurse and feel very upset and need some reassurance. 10 months have passed since my last radiotherapy and I am still very fatigued and have poor concentration and woolly thinking.
I had chemo as well as radio therapy afer 2 WLE’s and I know there is research in the US about the effects of chemo on teh brain.
Anyway, my breast nurse implied it was unusual to still have these symptoms so far down the line and that I must be suffering from depression. Well I am a bit low due to being so tired! I feel I was made to feel a bit of a freak and a nuisance. I know she must have more needy women to tend to but I can’t help how I feel.
I feel so isolated and alone and just want to hibernate and not see anyone (paradoxically) as conversations wear me out. Please anyone else still tired ages after treatment and having these hibernation cravings? My libido is zero and I have put on weight thru not having the energy to exercise as much as I used to. I can’t even go to a BC spport group as they are in the evenings and I don’t have the stamina to attend them!
Pls assure me I am not such a rare case. I’ve posted before but that nurse has made me feel awful.
You have had lots of treatments and I was told at the hospital that chemo can take a couple of years to get over.
I am also a hibernator, I am so unsociable now and cant be bothered to even answer the phone sometimes. Going out in the evenings is no longer an option and I am quite happy just being at home. I dont know how old you are but I was told that people over 50 take a lot longer to recover. I find that walking is the best exercise.
Your BC nurse sounds unhelpful, why dont you ring BCC helpline? Dont push yourself too hard, and I do hope you will feel better soon.
Rosamarie x
Thanks Thanks Rosamarie, you are very reassuring! Interesting that those over 50 take longer to recover, I had not heard that. How long are you out of treatment? I know what you mean about being unsociable, though I do enjoy it when I see friends, it’s making that initial effort! I like walking too, and am lucky to live in nice countryside. I sometimes go out on my own for a walk and hubbie at weekends if I have the energy!
Hi Sue Sorry you’re still having after-effects, but you’re definitely not the only one, whatever your bc nurse says. 7 years ago when I had radiotherapy (haven’t had chemo) a doctor friend of mine said that it can take up to a year to recover completely from that alone and you’ve had chemo on top as well as TWO ops.
This time I haven’t even had rads, yet 6 months after surgery I still get tired, though this is gradually improving. I certainly understand and sympathise about the hibernation cravings and have made my apologies for missing evening meetings quite often since I went back to work. I have to say that the lighter evenings are helping a bit, but I’m still quite a long way from being my old pre-op self.
Take care of yourself and don’t worry about what your bc nurse said. We’re all different and there’s no such thing as normal in an abnormal situation like ours.
Love
Kathy xxx
Hi SueBee
I was diagnosed in October 2004 and finished treatment of chemo and rads in July 2005 - so timing very similar to yourself.
Well SueBee , everything you say could be describing myself, especially the hibernation days.
I can go a couple of days when I think I am feeling much better, but then I get knocked back again and feel really weak again. I mentioned this to my Breast Care Nurse and she told me it was ‘early days yet’! Please don’t feel awful about that conversation - it sounds to be if the BC Nurse didn’t handle it very well.
You will get loads of support from everyone on this site. I am always amazed how caring members are. If you haven’t tried it yet there is another (quite fun site) where you will get loads of support too.
www.phpbbserver.com/breastcancer
Hope you do feel better soon and wishing you well,
deebee xxx
I know the feeling I can sympathise with how you are feeling. I too feel better when I make the effort to do things and to see people, but it is making the effort that is difficult. I actually met a friend for lunch today, I thought about ringing her earlier in the morning to put it off but decided to go, and was glad that I did. Although when I got back home I just wanted to get into bed and hide again!
It is true though that you may actually be slightly depressed. Do you have a sympathetic family doctor that you can talk this through with?
Lots of people on this forum have talked about how they feel isolated and abandoned after treatment, and the breast care nurse should have handled it better.
Take is easy and be kind to yourself.
Mollie
I know the feeling too Hi SueBee
I’m really sorry you didn’t get much support from your BC nurse. My timescale is similar to yours with mastectomy in Nov 04 followed by 6FEC and 5weeks rads. My ONC told me in Jan that even without the additional surgery I had in Aug 05 (tram flap recon) it can take years to get over the treatment. I think her telling me that may have been partly responsible for my subsequent depression along with worry about poor concentration and a brain that seems to full of cotton wool. I’m fifty and she did say that age is also a factor. It’s a bit of a chicken and egg situation really because I’m sure it was being so tired all of the time that contributed to my depression but it could be argued that the depression came first. It may be worth seeing your GP. Just remember you’re not alone
recovery after chemo Can take a long time. It was about six months before I began to feel on top of things after FEC, and 4 months after vinolrebine. And even now I have to be careful not to overextend myself. Am just beginning to be able to do things out in the garden and my poor muscles and tendons are telling me that no exercise for 6 months is not a good thing. I am still reluctant to go far or do things at night, unless within easy reach of home.
It does improve, even though it feels sometimes as if nothing will help. I reported lowness to my GP at one point and his reaction was that it was a slight depression and would be helped by 20 minutes brisk walk every day. May have been right, but finding the energy to take a walk was another matter.
However, it might be sensible to be tested for nutritional deficiencies or imbalances. Not something that GPs like to do, but can show up an easily remedied state. If you are not already supplementing, I suggest you have a look at Coenzyme Q10. There are interesting reports on it on the internet.
Best advice I can give is don’t worry about it - that just seems to make things more exhausting.
Thanks so much for all your reassurance.
My breast nurse rang back today as she was worried that I had got the wrong impression and that she didn’t care! She is quite sweet really.
A doctor in the US called Patricia Ganz has written some interesting articles on fatigue and BC survivors. Type her name into Google for further info.
I am still woolly headed and got up at 10.05 today with the postman (not literally!). Have the hygienist and Sainsbury’s to look forward to today - thrills!
Thanks to you all again and love to us all. We need it.
Sue XXX
I would just like to know? why, when I see the medics, do I feel as if I’m the only one feeling bad? Then I realise that so many of us here feel the same - if it weren’t for this site my ‘black hole days’ would seem unbearable.
Thanks, everyone - I’m relatively sane after all!
love, Judy
Yes Judy And you read reports of women running half marathons and going on long treks for charidee after they’ve just finished (or in some cases, during) chemo treatment! How on earth do they do it? Are they human? I have my doubts!
Yours grotfully today
Sue XX