Retreating from the world

Before breast cancer, I played sport, loved walking and enjoyed healthy food. I had a rough time during cancer treatment, especially from chemotherapy. I have mostly recovered physically, apart from lingering digestive disorders and peripheral neuropathy in my feet. I'm told I look well. But I really struggle to face the world again. I lie in bed looking through the window at the sun shining but don't really want to go out there. It's not depression - I've always had that and take antidepressants. It's not fear of having cancer again. I'm not suicidal. I do go out once or twice a week to have lunch or play bridge with friends, but want to spend the next day in bed. I try to walk a bit or go for a swim but only because I think I should, not because I want to. I can't articulate what the problem is. Two years on from surgery, friends assume I'm over it, but it's like the real me went away and I'm a doppelgänger having to act out that other person's life. Does this resonate with anyone else?

  • Hi,

    Yes what you've described does resonate. My wife had a brain haemorrhage in 2013 for which she had keyhole surgery and stereotactic radio surgery. She is now almost fully recovered and feels she should be glad to have survived. She now suffers from chronic fatigue with very similar symptoms to those you have described. The root cause hasn't really been diagnosed yet, but I do wonder whether it could be a form of PTSD. 

    Meanwhile, we live in the shadow of my cancer and the ever present anxiety that it will start growing again which gnaws away at my subconscious mind.

    I hope you find a way to get over this.

    Best wishes

    Dave

     

     

  • Dave, thanks for replying and sad to hear about your cancer. It's a bummer, eh? Strange that you mention PTSD, because that is exactly what has been rolling round my head. I have googled it and can't decide if I fit the profile, I don't have violent flashbacks, but I do feel a bit traumatised! I often think, "What just happened there?" So many incidents like collapsing in public, and going to a routine oncology appointment only to be hospitalised on the spot. My GP is clearly sceptical when I talk about wanting to stay in bed, and having concentration lapses. Like others, she clearly thinks I should be over it.

    Best wishes to you and your wife. S x

  • I hope you don't mind me saying this but it sounds to me like you should change your GP! I finished my treatment 2 years ago and am only just starting to feel a bit more 'normal'. I also suffered from depression before the cancer (I wonder whether this may have been part of the cause) and was taking anti depressants too. My GP increased the dose a few months ago because I was finding it hard to cope with trying to get back my life back. Since my treatment I have had counselling and 2 courses of CBT. I have also had lots of support from other places such as Maggies, Penny Brohn & a local breast cancer support group. I have attended courses through Maggie's and Macmillan which both helped enormously but the main thing that helped was when I stopped putting so much pressure on myself to get better and started concentrating on what I actually need right now. I am gradually improving but it's a slow process and I now accept that my life is never going to be the same as it was before the cancer. Don't feel pressured by people around you to get 'better'. People who have not experienced a cancer diagnosis can never know the massive impact it has on every part of your life, not just physically but emotionally too. Take all the help that is available to you. If you have a Maggies Centre near you I would definitely recommend you go there as they can offer all kinds of support. The Macmillan helpline is also really good, as well as providing practical information, they are also happy to just listen when you need to let off some steam. Good luck & always remember to be kind to yourself xx
  • I finished treatment about a year ago, and have never suffered depression in the past, but am now so low, no energy I'm really struggling to make sense of why this has come on so late after treatment. I'm reluctant to take antidepressants... any suggestions?
  • Hi Vainbear

    Yep I feel much the same a lot of the time, some days are better than others, I have lost contact with many people mostly from a failure to engage on my part. I often don't have the energy or desire to go out and socialise in the evening or go to a party or music concert. But occasionally I do. In the end the invitations tail off and the longer you leave it the harder it is to get back. Its also hard to get enthusiastic even about pastimes I enjoy. The symptoms all add up to depression but having suffered that pre cancer I know its not that. I discussed it with the oncologist, his suggestion was paradoxically, to gradually increase physical activity. I have to force myself to do this but I think there is some improvement, and once I actually get going I do enjoy the activity. Next day though I am often pooped and need a day to recover, I do though get out of bed each day at 6:00 as I think laying in doesn't do you any favours. Well you are not alone in how you feel I hope you can find you way forward. Kim

  • Hi, I am really sorry to hear how having breast cancer has affected you. I feel that I must be one of the lucky ones who has not obviously suffered as dramatically as you have done. I don't think you ever really get over it, but you just deal with having had cancer as best you can. I have always been a strong person and a believer in what ever life throws at me that I will get through it. I never in a million years ever imagined that cancer would be something I would ever get and other people got it but not me. The strange thing was I knew when I found a tiny lump exactly what it was and what the diagnosis was going to be. I was more worried about loosing my hair if I had to have chemotherapy than I was about having cancer. Pretty vain I know but I do love my hair and at least that was something that didn't happen as a result of having cancer. In saying this I am not making light of what is a terrible disease and having had a  mastectomy and implant it could have been a lot worse. I try not to dwell on what has happened and concentrate on the future because I'd like to think I still have one post cancer. I hope at some time you will have that opportunity and not because you're just going through the motions but because it is something you want to do

  • The very best advice I had was from my oncologist who told me to not let cancer own me. It's difficult because my life has changed dramatically. I can't manage a long walk without a day in bed afterwards. I have constant pain from radiotherapy damage to my ribs. I have tamoxifen side effects but cancer does not own me. Nor does it you.

  • Thanks for all your replies, everyone. It's strange because I feel it's not having had cancer that is holding me back, but having had chemotherapy. I didn't want it but had to have it in order to get Herceptin. I sailed through the surgery and radiotherapy but felt traumatised by the poisonous drugs running round my veins and scrambling my brain. It's still haunting me.
  • Just remind yourself that almost all drugs are poisonous in the right dosage - even aspirin and paracetamol :-)

  • I TOTALLY understand and relate to how you are feeling. I had breast cancer in 2007 and came through it all well... This year I was diagnosed with a new breast cancer and had another mastectomy in June... Along with going through all that, I lost my job and last week buried a very dear friend who lost her battle with cancer. I feel like a TOTALLY different person now. The depression is real, I don't like going out and suffer with anxiety when I am out. Everyone around were great helping me through this, but now seem to think I should be fine. I have always been a hard worker, people person etc... Now I just want to be alone. I have tried talking to my Oncologist, GP and breast care nurse about it. The GP just raised my dose of antidepressants. I also called Cancer Focus for counciling and was told they have a four month waiting list... I know all this has changed me and I am trying to figure out the new me, so I can be comfortable with myself!!!!