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Living after cancer - struggling to cope

Iamstillhere
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Hi, I am new to the forum. 
I was diagnosed with HER2 positive breast cancer in 2017. I underwent chemo, single mastectomy and radiotherapy. Followed by Herceptin injections and Zolendronic Acid. I did not have my final Zolendronic Acid as I just could not take anymore. Everything they put in my body made me so Ill. I had some truly awful experiences along the way. I was misdiagnosed - told it was just an age thing, then properly diagnosed 6 months later at the hospital I wanted in the first place.

I was in hospital over Christmas as the chemo had made me so ill and I was treated appallingly.

I suffered terribly with anxiety and was put on Benzodiazepines, which I cannot now get off and can get no help to do so. I have tried all manner of therapies - all of which we have had to pay for privately and none of them have worked. I am currently having acupuncture - which is helping, but I am still struggling greatly. 
unfortunately, we do not have good mental health care in our area, especially for this type of mental trauma.

I feel the person I was did in fact die and I am left with this person I do not know or understand and feel I am a terrible burden on my family - my husband looks so haggard and it's all my fault.

I can't sleep more than 5 hours a night, so that's not helping me to cope. 

I am easily exhausted and cannot carry out daily duties - I used to look after home and children pretty much on my own because if my husbands job.Now my husband has to do his job and most of mine, I feel so useless.

I feel I have no role in the family anymore, plus we are at the stage where one of our children has left home and the other is looking to move to university next academic year. I feel like I am sliding down a muddy slope and cannot get a foothold. My body has let me down and I don't trust it not to do something else horrible. Every time I feel I am making a little progress, something else happens and it knocks me flat on my face again. Sometimes I feel it would have been better had I not survived. I think I fought for my family's sake more than my own, but now I think I am harming them more this way.

I cannot find joy, peace or motivation.

Well that was depressing wasn't it - sorry ladies - but now it is in print not just in my head. 
I know only I can change this, but everything I try just comes to nothing.

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    Hi [@Iamstillhere]‍ 

    I can relate to what you have written, although my cancer diagnoses was not as severe as yours, I had a lumpectomy and lymph node removal, I was offered Tamoxifen and radiotherapy both of which I turned down, I find it hard to explain to doctors and nurses and family that I just don't want it - I even regret having surgery as it made me feel so ill and I took a long time to recover from it, I am 6 months on from surgery and still struggling. I just said enough, I don't want to be poked and prodded anymore.Although I recently had 31 injections of botox in my head for my chronic migraines.....

    But my daughter who is 23 lives in the same county but not close enough to visit in these current times so I haven't been able to see her in months - before my diagnoses - so although we speak most days it is not the same. 

    I have found that my mood and motivation to do things is at an all time low, my sleep also horrendous. Some nights I fall asleep OK, go into a dream and then wake up with a start and find I have only been asleep for 20 minutes and then that's it, I can't go back to sleep and spend the rest of the night laying in the dark getting wound up.

    It's great that you have written all this down and although it is not going to help immediately, it might just stop it from spinning around in your head. I know family and friends do find it difficult to know what to say or how they should be and can't possibly understand unless they themselves have been through it, which of course you don't wish on them. But being on here there is no judgement and you can say how your feeling and know that this is not unusual to feel this way..

  • Offline in reply to Kay-D

    Hi

    Thank you for replying. I totally get that you said no to more treatment and good for you. During treatment you just feel like an item, another job to do rather than a very frightened real person. 
    I have to admit they got rid of the cancer - we hope, but that's it, they treat the cancer, not the person.

    I had lymph node removal too and have some lymphoedema. I did not have Tamoxifen but know people who have and they say the side effects are awful. You just have to make the right choice for you.

    I have read about Botox for migraines. I get them too, but I don't think I would be brave enough for Botox.

     

    My son is also 23 and he now lives with his girlfriend and we cannot meet up either. We don't know her at all as they met at Uni, she is not local and then lockdown meant we could not get to know each other. In fact THEY don't really know each other that well. So a very difficult time on top of everything else. Hopefully we will all be able to see our loved ones again soon, although I totally support keeping a distance so as to try to halt the spread of COVID.

    I also struggle with sleep. I wake far too early and usually with an horrendous nightmare. Of course that affects everything all day doesn't it. Partly I guess why our motivation is so low. The pandemic also has a huge role to play in this for everyone. I never thought I would lose motivation and be depressed.

    I have shied away from forums after I tried one (not this one) and found it really depressing and scary. So far, this one seems more supportive and 'chatty'. Hence, I have rambled on again.

    one last thing, i find acupuncture and meditation to be a little help - have you tried that at all, it could help. Sometimes you can get some of this on NHS, depending on where you live. I have to do privately and YouTube. Might be worth a go for sleep, motivation, anything really.

    I wish you well in whatever you do and let's hope the sleep gets better for both of us.

     

  • Offline in reply to Iamstillhere

    [@Iamstillhere]‍ 

    I am the same with forums, this is the only one I am on and have found it really nice.

    The Botox was my second round and I won't be having anymore - I have had Chronic Migraines for over 6 years and have been hospitalised with it when I could no longer speak a coherent sentence. I went down medication route and didn't want botox as the thought of needles going in my head which is already feeling like it is on fire was not my idea of fun, but as a last resort to try something I did, when I found out it was 31 of the little blighters that was a shock, so I have tried it and yes it hurts and has not yet shown me any real progress of helping so think I'll bang that on the head, I tried a daith piercing too.

    I haven't met my daughter's boyfriend either, with the first lockdown they did move in with each other temporarily but they are back to having their own places now, but it is so strange to not be able to meet up with her or to meet her boyfriend and all her serious partners have to not only meet me and pass the test but meet the Dog and pass the "Cooper" test.... he is a very sensitive border collie, if he doesn't like him - game over!

    I've never been very good at meditation and I was offered acupuncture at one point so possibly something to look into again.

    The mental health nurse I spoke to a few months ago suggested I take Phenergen to help me sleep, which has helped me a great deal, but I can only take it a couple of nights a week, so the nights I don't take it I get an hour to three hours a night, and yes the vivid nightmares are horrible, my doctor is now also involved and we are setting up a plan, as this has all happened and been going on for about 7 months.

    My worse time is at night, so not sleeping just makes they day drag on and give my brain more time to mull everything over. 

    I hope that you are able to find a way not to blame yourself for how your feeling or your husband.

    This isn't an easy process for anyone or our loved ones.

  • Offline in reply to Kay-D

    Hi Kay-D

     

    oooh the Botox sounds scary. Yes another solution would be good.

    My daughter has a Daith piercing for fashion. I tried the Shen Men for anxiety but it just wouldn't heal so I took it out. It did not work for the anxiety either.

    I had to giggle at the boyfriends having to pass the test with the dog. I would love to have a dog, but my husband does not want one.

    I must admit I found meditation hard at first. I got Headspace when they did a special offer and that helped me get into it. They also do a free trial still I believe. There is a lovely night time one called Rain Day Antiques - that helped me get off to sleep many times. Also, on YouTube Entrance I found good. Might be worth a go.

    My GP is very dismissive of my health concerns and puts everything down to anxiety - hope yours is better. It's so nice when someone just feels your concerns and feelings are worth something and you are not wrong to feel that way.

    Hope you can get some decent sleep soon, it will help you cope much better I am sure. Maybe a short nap in the day to just get some rest if possible. I am trialling that this week. ️

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