Feeling lost after finishing treatment

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Hi there

This is my first time on here so thought I would introduce myself. I was diagnosed with breast cancer in March 2021 and within 2 weeks was having my 1st chemo session. I had 8 in total. Then I had a mastectomy followed by 15 rounds of radiotherapy. In September  2022 I had a hysterectomy which was my last bit of treatment. I’m now on hormone tablets for 10 years. 

Now my treatment has finished I’ve been feeling emotional and crying over things that wouldn’t normally bother me. I just feel a bit lost and not like ‘me’ if you get me. Things just feel a bit overwhelming and sometimes it feels like no one understands. I find it hard to talk about everything I went through as it makes it feel real as when I look back at photos of me going through treatment it doesn’t feel like me or that it happened. 

Today I called the breast care nurses who have referred me to Bupa for counselling which is how I found out about this forum. It would be nice to hear from people who are going through similar journeys.

  • Hi again  and well done navigating across to this corner of the Community.

    The final third of the journey can be as hard as the first 2 two thirds put together.

    The first third is everything to do with getting a diagnosis and the stress and anxiety getting to the point of treatment. The middle third is the treatment, yes it’s hard work but you go through this along with the ‘safety blanket’ of regular contact with your clinical teams as well as being in a routine……… then bang……. you are into the ‘post treatment’ world and most people are not ready for this…….. and the NHS System tends not to have the money, time and staff to get this part right.

    During the first two thirds our bodies go through so much and once we finish treatment it like ‘let’s get some normality’ back.

    The initial burst of enthusiasm often tends to quickly lead to a dip as our bodies can only take so much before it’s starts to complain and then our minds and go into overdrive and we can end up going down a rabbit trail…… and it can be hard to big ourselves out.

    Good that you are looking at Bupa for counselling. In the meantime you may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

    In my first post I highlighted our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

    Do get back to me if you need further help.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hello Tea Lover99 and welcome to us people on here who thought we'd feel great when the treatment ended!

    It the one aspect that we're not prepared for during our journey isn't it?  It certainly does need to be addressed before it happens so we can be ready for it.   I finished my treatment in August 2022 and I can't say I'm feeling fine.  I'm lost and bewildered, still have crying bouts thinking about when and if my cancer returns, don't know quite what to do next. At nearly 60 I'm certainly not aspiring to a career job but want to return to work at least part-time.  I bumble around each day not really doing much, unsure how to continue. Doesn't help that the government (NICE) melanoma guidelines have now reduced the frequency of my scans.  Am going to start journaling, I feel it might help if I can write down how I feel. 

    One day at a time, remember we have just experienced an incredibly traumatic experience. 

    Take care, love Lucy x

  • Hi,  , hope you are feeling more balanced. Please read the paper, as it has helped me over the months. Take care 

  • Hi there im new here also, i had breast cancer in Nov, it all happened within a week from diagnosis to op, mine was just a lumpectomy and radiotherapy so not as harsh. I thought i was dealing with it fine until feelings of sadness washed over me, wanting to cry for no reason. Im not great with emotions or talking about them really either. However last week i started a new job, all good so i thought then i had the day from hell on my day off, i cried, sobbed all day, out of the blue, couldnt stop. My moods are low, more than i like and resulted in me giving up my job i had only just started. I feel totally overwhelmed by everything too. My boss however has said that once im ok there will be a job there for me which is great, im currently trying to see a gp(not easy). My wife has also had to put up with my mood changes too. I had to come off HRT which is a nightmare and im just fed up, i dnt like me, i feel like im living someone elses nightmare. I think i need a counsellor. I hope you feel better soon. X

  • Hi,  , hope you soon feel less overwhelmed. Don't forget you can ring Macmillan and talk to them, they may offer the counselling that they organize. Take care, xx

  • Hi again  and well done navigating across to this corner of the community. 

    At times, living the post cancer journey is like living in a parallel universe - you can remember your old life but some areas of your old life has gone and you find yourself on a new path…. but it’s hard to navigate this new path…. as you don’t get a map.

    Following my many years of treatment and now 7+ years into my post treatment life, a situation I was unwillingly put into. In the early days I did actually review life and everything that I once thought important.

    So some things from our old life are still in my life but various aspects of my old life that were once seen as important were put in the bin and I don’t miss them……. the problem is how to sort these things out.

    I often talk about the concept that when we first get our cancer diagnosis we all get an invisible ruck-sack put on our backs.

    We then walk through our journey including our treatments, clinics, blood tests, scans, side effects……. and unknowingly, we continually throw stuff into the ruck-sack…… and the stuff builds up. It’s only when we finished our treatment (rang the bell) and look to try and ‘live’ life we realise that it’s not that straight forward.

    This is due to the weight of the ‘stuff’ we have collected in the ruck-sack pulling us down…. stuff like pent-up anxiety and stress, the ‘what if’s’, the difficulty in seeing a way forward with life, the disappointments around how some of our family and friends supported us, the silly things people said during and after treatment….. the list goes on.

    There comes a time when we hit ‘the wall’ and this is the point when this ruck-sack needs to be taken off out backs and over time cleaned out. It’s not an instant fix but a process…. but the healing process can only start when we are willing to do it and to achieve this we often need help so these are some links that you may want to follow up and see where you can find this help.

    One thing I did have to deal with was survivors guilt as I lost some very good friends to different cancers over my years and "why did I survive and they did not".......... but I got some great help through our local Maggie's Centre especially their Where Now? Course and One on One support.

    You need to ‘talk’ with someone who understands, you need to ‘unpack’ the stuff and lighten the load.

    The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can get emotional support or just connect with a listening ear.

    We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.

    Do check to see if you have any Local Macmillan Support in your area.

    …… and read the great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones…. and can be a light bulb moment.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Slinx, I’m so sorry you are feeling low, it is such a tough journey we go through. All I can say is it does get easier I am feeling in a much better place then I was 2 months ago. I still get bad days but try and be kinder to myself on these days. have had a few counselling sessions which has helped a little. I think just talking to my husband and family about how I was feeling helped me a lot. Also reading other people’s stories made me feel less alone. Remember you are never alone and they’re are always people to talk to 

  • Hi Gemmary, i rang Macmillan and got the ball rolling and am getting some counselling. Thanks for ur help. X

  • Hi TeaLover99  thanks for your kind words, it is difficult and i have arranged for some counselling. Im having trouble looking ahead but im sure i will get there. Im not really great at all the talking stuff tho which doesnt help but i will try. 

  • Just take one day at a time x