Home Now what? The highs and lows of survivorship



Dont follow me Im lost too

MicheleRMicheleR South AustraliaMember Posts: 343
Im about a year out of active treatment and I seem to be in a slump. I experienced euphoria and gratefulness for being alive following treatment and some days since Ive felt genuinely happy but more recently a less light feeling is emerging.

I had a coffee with a friend today and found myself saying " when will i get over this?". How long is it reasonable to talk about this experience with friends (those that didnt keave) and the enormity of it to my life? I feel like ive just returned to a slightly different life grind and im struggling to see the wood for the trees. 

I work less, see people less and health practitioners more. I exercise 3 or 4 times a week and do crafts things. I have children to look after. 

Im thinking of buying a graditude journal to try to pull myself out of the blues. 

Is this common? What have other people done? Are there any good books I can read? 
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Comments

  • ZoffielZoffiel Regional VictoriaMember Posts: 3,350
    Oh @MicheleR it is.

    Even through the most gruelling treatments I somehow found the ridiculous in many of the horrible situations I found myself in. I could be funny.

    Now, 5 years after BC V2, I am just grim. Working, trying not to over think every ache and pain and, to be honest, just plodding forward.

     I suspect I should make a booking with my counselor, but God knows what has happened to her in the last three years. If you have some sort of relationship with a mental health team, might be time to reconnect?


  • MicheleRMicheleR South AustraliaMember Posts: 343
    edited March 12
    Ah @Zoffiel. Im sorry that you are also wading through treacle.

    I do have a psychologist i can see. Im a bit embarrassed now but yes I can touch base.

    I bought a couple of "after cancer" type books for my kindle last night. Maybe im looking for something a bit spiritual, i dont know. 

    Its good to make light of it and I did but ive become a person whose presence and comments can make others uncomfortable. Im trying to adjust relationships. My 50th is coming up and whilst im thrilled to be alive I dont feel like partying. Im surveying the damage...
  • Cath62Cath62 Brisbane Member Posts: 935
    Hi @MicheleR,  I think this is common after fighting so hard to get through treatment. We pump out large amounts of adrenaline when we have to fight to recover with our treatment. Once that fight had past the critical stage it's a matter of what goes up must come down so it's natural to hit a bit of a slump. 

    I finished active treatment just over a year ago and I have those feelings you mentioned. I have to work at it daily to keep the blues away. I walk every day and I do keep a gratitude journal of kinds as well as practice mindfulness and some meditation. I use an app called Delightful for my gratitude practice. It is easy as it's on the phone and it prompts 3 questions for gratitude. 

    I have read lots of books. One that resonated with my was Your Life Matters by Patrea King. You can get it via her not for profit foundation called Quest for Life. She has cancer herself and does alot with people who have had cancer or other traumas. 

    I saw a counsellor during active treatment but I know i can reach out when I need to. 

    This road out of cancer seems long doesn't it. I am nearly 60 but feel probably much older. The impact of cancer and treatment is a long one for us really and no wonder as look at what we all had to go through. 

    I hope this slump will pass for you and you will feel better soon. Take care x
  • AfraserAfraser MelbourneMember Posts: 4,022
    Touching 50 can be an emotional mid point for many people, with or without cancer and treatment to contend with. Any life threatening disease can trigger, at very least, a ‘what’s it all about’ state. The damage done is often very evident, which can make holding on to positive potential all the harder. Reviewing the meaning of life after a year of cancer treatment is more hard yards, but ultimately worth doing. A good counsellor, who understands that it’s not all about the cancer but about expectations too, can be a very helpful asset in all this. Best wishes. 
  • MicheleRMicheleR South AustraliaMember Posts: 343
    Here are the books i got. In case others are also looking. 

    The first is more like examining emotions and asking questions to trigger your own thought patterns. Maybe my expectations that i should be over it are too harsh? How do i get over it without letting it colour the rest of my life? 

    Havent read much of the second yet. My father-in-law with secondary prostate cancer is reading books I notice which are more spiritual. 

  • Julez1958Julez1958 SydneyMember Posts: 612
    Hi @MicheleR
    it is quite common to fall into a funk after the end of active treatment.
    I am now 7 months post reconstruction surgery and 18 months post mastectomy , I had radiotherapy and am now on hormone therapy for 5 years ( 4 years in).
    I read a lot of books and blogs and saw a counsellor for a couple of sessions early.
    I found the podcast by Dr Charlotte Tottman on here helpful - she is actually in Adelaide and specialised in treating cancer related stress and then got breast cancer herself.
    I also find keeping busy helps - I am 63 and semi retired but do exercise every day ( walking, swimming, Pilates) .
    I also take regular trips away ( Covid 19 permitting!)
    I think a Gratitude Journal is a great idea - I started a journal when I got diagnosed mainly to record all my medical appointments etc but it did include my feelings - I hardly post in it these days except to record medical stuff ( I do still see the physio and acupuncturist).
    I was looking back at it recently and liked this line “ I haven’t cried for a week , the holiday did the trick”.
    I do still have the odd cry though , that’s normal.
    Take care🌺


  • MicheleRMicheleR South AustraliaMember Posts: 343
    Hi @Julez1958,

    I agree keeping busy helps. Ive been sewing tops for my now assymetrical body.

     I made a few bras out of desperation but heres a thing, when Ive mentioned it with non-cancer people they suggest i make it into a cottage craft business. On one occassion I said "but i dont want to, this is not how I saw my life turning out". Its not that I dont want to help others its just that bra making particularly is labour intensive, every woman is different and I dont want to turn something that has touched my life so deeply into a money making exercise - even though there is probably no money in it, its not like knocking up 20 of the same products with scrap fabric and going to a local market! 

    Its like there is an expectation that Ill turn adversity into some sort of successful enterprise. Im just trying to find some pleasure, have something to wear and turn my brain off. Why do I have to lift people up with conquering adversitym 

    Im becoming cynical too, a bra fitter came to an exercise class. I asked if she had a bra for uni boobers.  No. After, I realised that their business is actually selling prosthetics and the bras that go with them. The prosthetics are where the money is, they have no interest in bras for flatties or assymetrical people. It doesnt fit their business model. Did they go in it to help us, maybe, is it a business, yes. 

    See, Im feeling a bit cross...


  • MicheleRMicheleR South AustraliaMember Posts: 343
    edited March 12
    Sorry for last post.

    I think one of the things that is making me feel low is having to rely on health care practitioners to "care" for me in place of friends who profess to care but where have they been?

    This is complicated to pull apart.

    Yesterday I saw a movie called Off the Rails which is about friends who come together for an adventure provided by a cancer patient friend who has died. I thought this film would be funnier and uplifting. It was a tearjerker. 

    I saw the movie with a close friend, one of the ones who has stuck by me and understood the challenges.  It was a bit awkward to be honest as its about friends who didnt spend enough time with the person who died. Kelly Preston is in this movie. 

    Anyway its thought provoking, close to home but not sure i would recommend.

    I mean it fits with my general mood but is it healthy?...
  • AfraserAfraser MelbourneMember Posts: 4,022
    I felt I had a lot of support from friends and work colleagues during treatment but mainly I got that feeling because they just treated me normally. I talked to my medical team about side effects and issues, I wasn’t expecting others to adopt that role, not least of all because it wasn’t their strength. Many people discover that they become the comforters of their friends and relatives! It sounds crazy but knowing someone who has cancer is a vivid reminder that something bad could happen to you too and often people can’t cope with the idea. Being treated as if I hadn’t changed, helped me. It doesn’t work for everyone. I came to grips with changes I wanted to make in my life, slowly, a full year after diagnosis. Having an ‘outsider’, not a friend, to help clarify my thinking and understand my motivations better (about life, but not specifically cancer) helped me make useful decisions post cancer.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,372
    Thinking of you @MicheleR -  This bloody disease (and all cancers) just totally suck - and totally mucks with our brain even more than our body.  :(  xx

    Take care - you are not alone  xx
  • MicheleRMicheleR South AustraliaMember Posts: 343
    Thanks all. Im just having a bad day perhaps. Ill go see my psychologist. 

    Ups and downs...
  • TonyaMTonyaM Member Posts: 2,745
    I think your feelings are quite normal MicheleR. You’ve put on your game face to get through all the treatment and now the worst is over, you are left thinking what the hell just happened?
    From my experience (twice on the bc merry go round) it took me about 2yrs to get some confidence back in my health and myself.You’re a different version of yourself and you are trying to’fit’ into your old life.Hell,clothes and bras are just for starters! Just take your time to recover,nurture yourself and do what brings you abit of joy. I did some art therapy and like you, sewing for myself. You certainly don’t the angst of starting a sewing business (not yet!) FYI I just saw ‘‘Ruby’s Choice’ and that was abit sad too- very good though. 
  • iserbrowniserbrown Regional VictoriaMember Posts: 5,208
    I find it's the heightened awareness of self that initially dominated. 
    In time I settled back into the everyday routine being fully aware of where I had been, how terrific my collection of Specialists have been and still today,  keeping me thoroughly checked and grounded.
    In our everyday we are evolving and as we turn the calendar and reflect on our experiences. 
    I do hope in time you feel more settled 
    Take care
    Best wishes 
  • FLCloverFLClover Sydney Member Posts: 1,458
    edited March 13
    Hi Michele. So sorry to hear you’ve been feeling like this. I guess I’ll put my 2 cents worth in. 
    I was in a slump 2 years before my diagnosis. My sister bought me a gratitude diary, bless her. It was beautiful, but I had trouble filling it in. Not because I was ungrateful, but because there wasn’t much that was making me happy. I resent the fact people expect us to be grateful for what we have, especially us that have been through cancer etc. I am very grateful for my life and my renewed health, more than I can express, and/but I want more. I shouldn’t have to settle. This world has a lot to offer and I want to experience it. I have every right to. So, when someone says just be happy with what you’ve got, my answer is no. I will not ‘just be happy’. I want what I deserve. 
    About the friends, I was already disappointed prior diagnosis. I had moved further from Sydney, and absolutely nobody bothered to come visit me. When I’d go back to Sydney for the weekend, they’d be like ‘why didn’t you tell us, we have to catch up! Come again next weekend!’ Um, excuse me?? Tell you what?? You can’t come up and visit me, only an hour from Sydney, then act like you care?? I’m the one who had to keep travelling with my daughter in tow to see them!! Some of them didn’t even have kids, and still expected me to run around to see them. Plus, I was going through bad panic attacks. Once again, ‘oh, I’m sorry to hear’, then straight away talking about their own problems and expecting me to listen and offer advice. Just taking, never giving. So that was understood then, that my friends were really disappointing. And yes, I was pretty sad and upset about it. It made me feel very lonely. Thing is, I’ve always known people are very unreliable, so I wasn’t sure why it bothered me so much. I know that only one or two friends will ever be ‘true’ friends. And to answer your question, I think that you should be able to talk about your situation as long as you need. There’s no timeframe with real friends. You should never feel awkward discussing it. 
    After my diagnosis and surgery/treatment, I did see a therapist for 6 months. She helped me A LOT. Not in helping me feel grateful and all that nonsense. She helped me understand why I had been in a slump for a while before diagnosis. She helped me understand why I cared that my so-called friends didn’t care, and why I felt so lonely. It was mostly to do with childhood traumas and having them (the traumas) make me feel like I was worthless, and like I didn’t deserve good things, which ate at my self confidence and caused me to lose myself. I became doubtful of everything. Couldn’t make a decision because I kept questioning it and all the possible consequences. Kept thinking it would be for nothing anyway, that I’d still be unhappy and it would be too much effort, so I wouldn’t do it. This also affected my ability to advocate for myself when my first surgeon was being an ass, and also not breaking up with the guy I was dating, who was being a bigger ass. Well, the day I decided to dump both those bozos is the day I started to say enough of this bs. I got my therapist, started going in within myself and understanding why I believed I wasn’t worth more. Dumped as much emotional trauma as I could, released it all, and starting advocating for myself again. It wasn’t easy. It was tiring and confronting, really hard work, but so worth it. I found myself again, my confidence, the me that knows I deserve not just good, but fantastic things. I found the courage to pursue them and make radical changes. Not allowing fear and possible consequences to get in the way. Confidence that even if it didn’t work out, I’d be able to solve it. I could under no circumstances go back to the life I had before, the one I was miserable in. And I stopped caring that none of my ‘close’ friends seemed to care. Truly stopped caring. I realised very clearly that they didn’t care about me because they didn’t know how to care for themselves. Actually didn’t, and still don’t. They’re more lost than I was. You can’t ask for support from people who have no idea how to give it even to themselves. I’m actually a lot happier now than so many of them, and once again not one has said good on you Mon, you seem to be doing so well in spite of everything. I’m happy for you. Not one. Acquaintances have said it, but not friends I considered close. No one wants to know that someone they know beat breast cancer and is doing well for themselves, while they’re still slumping through life. Not many are genuinely happy for you, and I’m quite happy not having to be friends with those kinds of people. As I said, I have myself. I’m very happy in my own company, and have made big changes that I was scared to make before. I’m planning on making even more now. 
    We need change, it’s good, it keeps the energy flow going and fresh, which invites happiness. Don’t get stuck on the old, it taught you what it needed to, it’s probably time to let go and move on now. I still see friends, but I’m not even slightly disappointed or upset if someone doesn’t invite me here or there, or doesn’t want to hear me out. I want to hear me out. I also have my sister and a couple really close friends that always listen, and that’s enough. Everyone else is just a bonus. 
    So my advice: make radical changes, and find yourself again. 
    ♥️
  • MicheleRMicheleR South AustraliaMember Posts: 343
    Wow @FLClover. Thats quite powerful.

    You are right in the sense that Im not doing exactly what I want. Its not a work thing, its more what I spend my time on outside work. Im less able to tolerate people wasting my time too. I suppose Im pursuing health things and mostly I want that its just that sometimes my heart craves just doing my own thing rather than doing things in set times like work, exercise, appointments, collecting children, fitting in seeing family etc. Its somewhat obligations. 

    Relationships change. I guess my expectation about how I would behave if friends had a lifethreatening illness werent matched by my experience of what happened when I had a life threatening illness. I got flowers but once the immediate drama was gone, people watched my facebook in a voyeristic way but didnt offer help largely (some people) or want to see me. People who I didnt expect were the ones who stepped up. Family were lovely.  In fact some friends expected support from me when I was least able to give it and made me feel that i was a problem. I suppose once you know you know and how do you go back to what was before? Covid hasnt helped. People seem to have more opinions held so strongly that they lose themselves and I feel hurt that chasing conspiracies was more important. But im trying to move on. I just dont want to bore the ones left. And i feel its hard when lots of very full on things have happened all over. 

    There are other things going on of course in my life, too much to explain but I guess Im aware of needing to move forward and feeling constrained  feeling like i should get on with it and wondering how and what type of relationship i now want (or dont) with others. 

    M
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