Loss of identity

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Since diagnosis at the end of 2023 (literally just before Christmas) I’ve had a mastectomy and am currently half way through chemo with radiotherapy and further treatment to come. I’ve been ofF work and stopped volunteering since the end of January. In recent weeks I’ve started to feel lost and lacking any identity other than being a cancer patient as all I do is attend medical appointments I just want to feel like me again rather than watching everyone else get on with their lives around me, has anyone else felt like this? What did you do to get over this? I still do day to day activities and run my children around, but as is one who was very busy with work etc it’s not enough.

  • Hello  

    Sorry to hear that you feel this way.  I see you haven't had a reply to your post as yet, hence me replying.

    I didn't need chemo. so my life wasn't 'stopped' like yours has, as I just needed radiotherapy and tablets - but yes, I can totally understand what you mean - life seems to revolve around medical appointment after medical appointment, doesn't it?  

    I wonder as you've mentioned it specifically, whether you could get in touch with the group you volunteer for and ask them if there is something that you can do on a very ad-hoc basis.  This way, you may regain a little bit of your identity? 

    Clearly you don't want to go back to work before you can, because if you did some work from home, this counts as returning to work and will affect all sorts (I know some employers count the number of times you are off work - so if you were in and out, this would look worse on the record, than being off for a substantial period of time - plus you don't want to add any pressure to your life with work - especially if you are on paid sick leave).

    Sorry I can't add more, but hopefully someone else will be able to pop on and offer some support.

    Kindest wishes, Lesley

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  • When I was diagnosed I was warned to put my life on hold for 6 - 9 months which actually settled me into the routine of medical appointments and treatments. I did work through it, but only because I was self-employed and was also able to work from home.

    I was able to avoid getting too frustrated with it all, especially chemo - that really is all about your cycles!

  • Hi Jo72,

    I had a lumpectomy nearly two months ago and two lymph nodes removed. I know     yours is somewhat different to mine, but I do know to some extent how you feel. I have felt a little lost at times, even a bit anxious, it’s not a nice thing to go through, but it seems it’s part and parcel of going on the cancer journey, may even have something to do with the medication you are on.

    You have made the first big step by finding the Macmillan site, also do visit your nearest Macmillan centre, a list is on here, or ring them on 0808 808 0000, they are superbly helpful and give you lots of great info, do walks, talks and lots more. Please also get a good support structure in place, family, friends, good work colleagues, I’ve lived on my own for nigh on forty years, but realised you can’t do this on your own. I also go for a short walk every day (British weather permitting) and do a daily diary, this is mega helpful, as it gets everything off your chest and out of your system. It is important during the day to keep yourself occupied, hobbies, interests etc., it stops you from dwelling on what is going on. You may also find it beneficial to listen to a meditation podcast, they really help you to relax especially when you are trying to get to sleep. I use one called ‘Go Gently’ by Christine Elizabeth Smith, it does a lot for me.

    I know it’s hard sometimes, but try and keep as positive as possible can, have positive people around you and dump the negativity, above all, be kind to yourself, you are going through a lot and need to take one day at a time, but you will get through this. - you are never alone and can always come and chat to us shower in here.

    Take care and big hugs.xxx

  • Thanks all

    i I think I needed to know I’m not the only one who feels like this, I have really good support group of family and friends which is helping, hopefully after chemo finishes in aug I can get back to normal.

    This miserable weather doesn’t help as I’d love to get outside more

  • I was dx last year and had my mastectomy in October.  I was off work for 5 months.  I really had to slow down my thinking and go for small wins to stop myself from becoming frustrated or anxious.  I used to walk quite a bit which used up time.  I didn't have chemo or radiotherapy as mine was removed by surgery.  It is such a difficult time though.

  • Hi Jo72, my cancer journey was / is different from yours, but I also felt lost at times. I still do, occasionally. I echo everything other folk have said - particularly about being kind to yourself. 

    You are going through something massive, and it is very tiring: physically, emotionally and mentally. 

    Is there a Maggie's Centre near you ?  I found them very helpful.  Between my surgery and radiotherapy, they warned me that recovery usually takes at least a year after your last treatment for cancer. I'd say they were right. (That's not counting hormone therapy, which I have struggled with.)

    I went on a "What now ?" course with Maggie's, about 3 months after I finished radiotherapy. I'm retired, but most of the other people in the group were still working. Two of them couldn't believe how long it took them to feel ready to go back to work. They thought they would go back within a few weeks - not months - of finishing treatment. 

    Of course, everyone is different. You might bounce back immediately. But I guess I'm trying to say "it's okay to not be okay." I think most of us get overwhelmed at some point or other. 

    It does get easier, and you will create your new normal in due course. 

    Take care.