How to move on.

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I was diagnosed a year ago, single mastectomy, failed Diep and no further treatment from May except hormone therapy. I found pre and post treatment emotionally very difficult and despite counselling and attending courses I don’t seem to be able to move on. 

I’m struggling with a bit of post mastectomy pain, terrible headaches from the hormone therapy as well as a lot of anxiety. I’m now considering  what recon I might have but until the pain is under control it won’t be any time soon. 

Its now 10 months after treatment ended and I’m still struggling. I still get upset most days and feel bad for not coping better. I feel like the world is carrying on around me and I’m still full of sadness and anxiety. No one mentions the cancer anymore and I wish I could cope with holding in how I’m feeling until it all passes and I start to move on. Has anyone struggled for this long after only having surgery? 

  • Lucy

    i am nearly 2 years from diagnosis and am still struggling. I genuinely don’t think we are unusual. I am pushing for ovary removal as at the moment I need an injection very 12 weeks. It is just one of the things that acts as a reminder for me. I did have chemo and radiotherapy but to be honest I think I would feel the same. Have you read the Peter Harvey lecture? I am sure someone can send you a link to it....I read it often. 

    I am not sure what to say....my doctor told me that one day I would wake up and cancer wouldn’t be the first thing in my mind....I’m not there yet. 

    The recovery physically and mentally is hard and I think it is difficult to explain to family and friends....they've sort of moved on and I feel like I’m standing still.

    Take care, one foot in front of another, believe it will get better but just takes more time than we want.

    GGx
  • Hi GG, 

    thank you for your reply. Constant reminders really don’t help at all. I hope you can resolve whether to have your ovaries removed. Another difficult thing for you to get through. 

    Yes I have read that article but after 10 months wasn’t sure it still applied to me. 

    The hardest part is dealing with friends and family. At times I feel completely consumed by how I’m feeling but I can’t explain why Im still feeling  like I do. I try to cope, keep it to myself but its so hard and wish people understood more. 

    Thank you again and take care xx 

    Lucy x 
  • Lucy

    I think it will apply to us for a long time. We have had a trauma, we are grieving our old life, our old self. I do not recognise myself in a mirror, friends don’t recognise me in town...oh we laugh it off....but to me it is very real. I have changed, I can’t explain it and to be honest I am not sure I want to. I would say to you that it is still early days...

    x

    GGx
  • Thank you again for your reply xx 

    Lucy x 
  • Hi Lucy,

    I too had ‘just’ a Mx and implant and then onto Letrozole, escaped the bullets of chemo and rads, and till fairly recently felt I wasn’t moving on. My Mx was April 3rd (and 4th as I bled and had a huge haematoma) 2018! So yes, it takes time! 

    I'm now 74 but till recently wasn’t sure about improvement to the shape of my Mx side, and my surgeon felt I needed a plastics opinion. I went, and decided not, surgeon had arranged to see me afterwards too, to find out exactly how I felt after that opinion. I saw her this week, and she was incredibly reassuring! Plus has suggested I think about swapping from Letrozole to Tamoxifen as side effects are not quite so bad, she feels I’m low risk and I’m over the first 2 years as they are the most risky. 

    so, yes, you aren’t alone, it IS hard to move on, but you WILL get there, give yourself time! But your treatment hasn’t yet finished, you’re still on hormone treatments.....

    keep chatting on here, too.....it helps.

    Hugs xxx

    Moomy

  • Hi

    I am now 3 1/2 years on from my diagnosis , and this is just my take on it , I think we are all different to start with and deal with things in different ways , we have different experiences in how our family and friends support/cope with things (sorry this may ramble a bit!) which does have an impact. It also think it applies to most cancers , if you have not experienced it , it is impossible to understand. I have a fantastic support system and do count myself as very lucky at how much they cared and looked after myself and my immediate family (husband and kids) My husband himself was diagnosed with prostate cancer the month after me and we had a truly terrible time , my husband lost his business , we lost our home , I could go on .... but though all of it I still felt a sense of calm and positivity. I still have the positivity , but the calm has been replaced at times with something that I can’t explain , like I want the world to stop spinning for a bit and allow myself to find out who I am now. I have contacted my local cancer centre to ask about counselling and may go down that route , but on a day to day basis I have realised that I cannot change how anyone else thinks and feels, and if I do start to have a bad moment I only allow myself to think about it once a day , I have a set time and that is only for a few minutes , this was a tip given to me on this forum when I was just diagnosed and it helped me to cope with that early anxiety of unknowns. It seems to work for me, it is not an answer but may help you cope with your feelings better ? Something else may to have a journal and write down how you feel ? I think for me accepting that I can only control me and my feelings has been a key thing , and although I think I will never get over the whole trauma , I think I am getting there. 
    This is another thought that has been going around my head , I wonder if the huge amount of treatment decisions ( I notice you have had a failed Diep) and options is sometimes one of the reasons it is difficult to move on - I had a mastectomy with an immediate implant , but had so many different options  I struggled to wonder if I did make the right decision - my implant rotated and rippled and I had a delayed diep just before Xmas last year. Do I think I made the right decision again ? I think so , but as you will know looking at my scared body everyday also takes its toll , and is a constant reminder. Do you want reconstruction or would you be happy to stay as you are ? Maybe when you have settled on that decision may be another piece of the puzzle being sorted ? 

    Hope my ramblings have helped you , and the fact that you are not alone in your feelings, speaking to others who have had cancer it is a very common feeling.

    Love Jo x

  • Thank you Jo and Moomy for your replies. I really appreciate you taking the time to do so. 

    I think there’s some truth in what you say about the decisions made, a lot was taken out of my hands and while it was explained they may not be able to complete the Diep I still hoped it would be ok. I then spent months making everyone else feel better by saying it was ok, I was warned so I’m fine about it (I didn’t feel I had the right to be upset) but 5 months on I realised I was very upset it failed. Now I’m considering reconstruction which from the start I’ve wanted but I’m realising nothing is going to be easy and again my choices aren’t easy ones. 

    The support around me has been ok but most people didn’t want to mention anything for fear of upsetting me. I didn’t mention it because I didn’t want to burden them which has left me very alone with it all. Also because my treatment was over so quickly people moved on thinking I’m all better. Being alone with it all definitely makes it harder. The days when I find it overwhelming it’s hard to explain to family and friends what and why I’m feeling like i am. Yesterday was one of those days so I’m very grateful for being able to post on here and for the kindness everyone has shown me. I will taken on board your suggestions and I hope you’re both doing well xx

    Thank you again xx 

    Lucy x 
  • FormerMember
    FormerMember

    Hi

    Im so sorry you still feel like this, I believe it is quite common. 
    You mention counselling and courses are you still having counselling? 

    I found my Macmillan unit to be very helpful.

    Im 9 months post treatment surgery,chemo and radiotherapy and it’s a struggle sometimes.
    I have a couple of conditions now due to surgery and chemo, but I try to find the positives in everything now, it doesn’t have to be a massive thing, maybe write a pros and cons list. 

    Everybody is different and getting use to the new person you are now is a huge step.

    Wishing you  lots of luck x x

  • Hi Beachwalker 19, thank you for your reply and I’m pleased to hear things are going well after treatment. The counselling was through a cancer charity so limited to the sessions I could have and finished in Dec. It was really helpful at first just to be able to talk about everything as I’d held so much in but I ended up going round in circles by the end. I’m still stuck in that cycle of being frustrated and feeling bad for not moving forward and still not coming to terms with everything that happened to me. 

    I hope you continue to move forward and keep focusing on the positives xx 

    Lucy x 
  • Hi Lucy,

    is it possible you could ask for counselling via your bc unit? It might take some time to organise but could be well worth while. 

    i can’t help thinking that your situations has been compounded by the failed DIEP recon and that has made things quite a lot worse for you.

    hugz xxx

    Moomy