Will I ever be me again? Struggling with my new normal

Life after a breast cancer diagnosis Living with breast cancer
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I am 8-weeks post surgery from a double mastectomy with PAP reconstruction.

Im 51 and was diagnosed with Estrogen positive bi-lateral breast cancer in December after my first routine mammogram. I had reported a lump to my GP twice 3 and 2 years before and was told it was nothing, so the prognosis was hard when it was finally checked.

It’s been 4 months of extremes, and honestly, trauma. The surgery was 14 hours and in my eternal optimism I thought ‘that was it’, but it was really just the start. I have managed a ‘carnival’ of different pains and phases in this recovery, and now it’s hitting me that I will never go back to who i was. I am faced with the reality that even though i have no breast tissue, cancer recurrence is still an issue, and i will have to be on hormone blockers for at least 10 years. Given how much HRT helped me, and the crash i had when i came off it, i can’t imagine what fun that has in store for me.

Honestly what I am grieving most is the lifestyle changes and how this changes the way i think and who I am. .I will have to consider how everything might effect cancer recurrence for this point forward, always on alert and unable to really let my hair down

I’m a very social person, and the idea that going out with the girls for a big night, having a wine with dinner, a champagne on holiday are potentially gone, and it’s really messing with me. I am grieving the carefree person i was before this diagnosis and now it’s hitting me that she is gone forever. I look at photos, visit places and I am reminded of who I was before this, as though i am now someone completely different.. I’m aware i am very lucky. I am officially cancer free and i should be dancing on the rooftops. But thats the point, I’m not dancing at all any more. I’m holding onto this just being a phase, but this phase, when I feel like a patient and not a person, when my friends come to visit as though it was visiting hours and then return to their normal lives, is really hard.

Just feeling very lost….

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Hi there @proudmama I’m sorry to see you here, and for what you’ve been through, but well done for coming here and saying how you feel.

8 weeks after surgery is actually no time at all, even though it may feel like forever. It will take a long time for you to get over the physical effects of that, let alone the psychological effects. You have to give yourself time to process everything that’s happened and to recover physically. 8 months to a year is a more realistic timeline possibly, especially if you’re having chemotherapy and/or radiotherapy.

As for whether you will be back to your previous self then I would say no, because any experience you have in life changes you. You aren’t the same person you were at 18. You are different after having a baby than you were before. The change doesn’t need to be negative and indeed is often positive in many ways. There is no reason why you won’t be back to going out partying, having adventures with the girls, going on holiday, drinking champagne etc. You will do all those things again if you want to.

Yes you will have a corner of your mind which will always worry about recurrence, we all have that, but you will be well looked after and followed up. People react differently to the hormone treatment they are on - some have a lot of side effects and some have very few. Keep your oncology team informed as there’s lots they can do to juggle medications to make things easier. I was postmenopausal by many years, no hrt, and had no ‘menopausal ‘ side effects when I started Letrazole. I have had neck and back pain, which I had to a certain extent before starting Letrazole, but that has lessened.

Be prepared to ask your Breast care Nurse or GP for a counselling referral if you feel you need it. Likewise, if you have a Maggies Centre nearby you can get support there. Breast Cancer Now also runs various courses and the nurses are on the end of the phone.

Well done if you’ve got this far in my long post - sorry! I’d like to end by telling you about my sister in law who was diagnosed with breast cancer 15 years ago, aged 51. In the last few years she and my brother have spent 3 months in South Africa, travelled through South America for 4 months in a campervan, seen tigers on a trip to India, not to mention the numerous short breaks they go on!! She says that she never thinks about having had breast cancer now, and isn’t scared.

Life after breast cancer is possible and you will get there in your own time. :hugs:

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@proudmama , I really wish. I could give the biggest hugs, my heart is breaking for you. Please take one day at a time at the moment, I promise it will get better.

You have been through so much, the surgery is horrific both mentally, physically and emotionally. However you will be you again, it may take a few months as this is very early days, we have all had good and bad days. But each and every day gets better

We are all here for you with love and support, also you have your breast cancer nurse, and the wonderful breast cancer nurses on this site , don’t hesitate to reach out when needed.

Wishing you health and happiness going forward, please let us know how your getting on.

Much love Tili :rainbow::folded_hands::rainbow::folded_hands:

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Hi there. You and all of us going on this journey are in a liminal space while in treatment. We’re not who we once were, yet we haven’t yet arrived, we’re sort of suspended in the middle. It is unsettling because we grieve what was, yet we can’t celebrate what is to become as we haven’t imagined it yet. We’re a bit rudderless in this space. In my work, I talk about this a lot when talking about change management. The liminal space can be exciting. It can be creative. We can imagine lots of new possibilities. In the context of cancer it might not feel quite as positive. However, I imagine once we get the most certainty we’re ever going to get around our prognosis, then we can dare to imagine and hope. This takes a bit of work on our part I guess, we need to view the cup as half full and not half empty, which for some of us is easier said than done. I include myself in that.

I’m trying to use this time to let go of all the things that drained me…people, commitments, projects, work. I’m lucky to be at a time of life where I get a bit more choice in the matter. I’m also listening to my gut to see where I am feeling a pull. What is making me feel energised or enthusiastic? How might I maximise that? Again, necessity may prevail with bills to pay and families to support.

As for partying, yes you can! You can choose to drink again if you want to, watch Liz O’Riordan’s YouTube video on the topic. The risks are known and she doesn’t shy away from that, but she also emphasises that the science is misleading. If you don’t want to go back to party days, the odd glass can still be enjoyed, or a mix of non-alcoholic drinks can be included. That’s what I am doing, I too am the ultimate party girl. I’m not going to tell myself I can’t drink…that is a red rag to a bull for me, but I am experimenting with going out and learning to enjoy myself without drink….some of the time. By no means all of the time.

Sorry, this ended up being longer than it needed to be, but I’m a bit chatty.

Of course making sensible choices is a good thing, but weigh it up against how miserable it makes you feel. There will be a happy medium in there somewhere I am sure. XXX

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Nailed it @Jaygo!

I’m navigating the liminal space at the moment as I’m stuck between surgery and waiting for chemo and have kind of wanted it to hurry along and be done with so I can crack on with my life.

But I’ve recently realised this limbo I find myself in is still my life and so I started to think that maybe I’m not actually stuck at all.

It’s what you do with it that counts! :wink:

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Thank you! Great that you have found a way to reframe where you’re at right now and that as a result you are feeling more in control. Maybe part of our lived experience to date is that we have become accustomed to rushing…’what’s next’, maybe always feeling we haven’t arrived yet, which leaves us unable to just be present in the ‘here and now’, where some of our best thinking often happens. Like you say, it’s what you do with the ‘here and now’ that counts.

I wonder if it is because we feel so out of control with our diagnosis. We’re in the hands of others, and having to dance to their tune in order for them to help us towards the goal of getting better. Then as you say, we sort of suspend ourselves whilst we wait for the magic wand to be waved. This makes us passive actors in our own lives. We may not like where we’re at right now, but maybe we do still have some degree of choice.

That is not to say that we can’t feel utterly peed off about where we are right now, there’s no judgment.

I like your take on it all though. I’ve been feeling really glum about how my weight has ballooned since starting this journey. I went out on Saturday and looking at the photos on Sunday I was horrified at the sight of me. I had to do a massive reframe for that…I’m still here. I’m still well enough to go out and enjoy a Saturday night. I got to see some good friends whom I haven’t seen in ages. Not one of them will have judged my through my eyes. They were just all delighted to see me. I could lock myself away until I am slim again, or I can get out and enjoy the moment. It took a bit of self-talk yesterday I have to say.

God I’ve rambled on. Sorry. But, thanks for contributing to the discussion. xxx

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My heart goes out to you @proudmama youve been on such a huge journey and really in such a short time. Everything is changed, physically for you and mentally. Its going to take time to get to know this new version of yourself. I couldnt look at photos of myself from even a week before my diagnosis. I felt such immense grief and loss for that person. I couldnt bare how happy she was. And after some great conversations with my therapist I realised all the past me’s are different or gone. This is no different really. I dont look at childhood photos of me with loss. I look with love. I am different now but that’s life. We are different everyday. Now when I see a photo of myself from before I actually smile. If you can look into some counselling please do, they aren’t magicians but they are very good at getting us thinking differently. Challenging thoughts and finding one’s that sit better in you.

As for the constant worry of reoccurrance… unfortunately I think we have to live with that now. The worst thing happened to us, thats how it feels, so its not going anywhere fast. But again with time, from stories I’ve read it will be easier to live with.

Ive done a HUGE amount of research on diet and making changes that can help us and I think instead a better focus for you would be to think less about taking away and more about what you can add. What things will benefit you now. What can you add to your diet that’s going to help your body and your immune system which is so super important.

Wine. I do miss it but I definitely dont miss the kick after haha. The advice for every human, not just cancer survivors, is there is no safe limit. In the same way there is no safe cigarette. You could cut it out but if that makes you really unhappy then thats also damaging so maybe just limit it. Make it worth it. Birthdays, celebrations, holidays. Cutting stuff out seems so harsh especially when you have just been through such stress. I say add all the good stuff you possibly can, not just food but make it your mission in life now to find happiness. Start small :heart: Sending you the biggest hugs :heart:

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Really nice @foxgem. I particularly like the ‘what you can add’ to make things healthier. I have also been inspired by your contributions (and those of others) in the ‘Cancer made me eat’ thread. This morning I actually switched from my beloved crumpets to a bowl of fresh fruit and fat free natural yogurt with a dollop of yesterday’s freshly picked and stewed rhubarb on top. All inspired by you. The crumpets were a lovely comfort food while I was nesting in chemo, but now I’m through the operation and (currently) chemo free, it is time to look ahead and nourish my body. Thanks, x

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Hey, Dont you worry at all. If not the previous self, You’ll be a new person, new professional. I’ve seen a doctor who went through this all, but today she’s the new person and professional herself and working as a macbook video editor. She found her path a different one. so You’ll be back soon with new energy too. Hope to hear back after you’re back.

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Thank you so much for your wisdom and kind words, they mean so much. It’s hard to see the wood for the trees sometimes, so I really appreciate you taking the time to respond. Many thanks :pink_heart:

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Tili you are so sweet, thank you so much​:pink_heart: I have been treated privately and to be honest havent had support from a breast cancer nurse. I tried to reconnect with the NHS one but she said as i was going private she couldnt really help. I tried to get therapy prior to the surgery, when i really needed it, but struggled and ended up calling MacMillan who were great.I didnt want to see ‘any’ therapist and it was 2 weeks post surgery before the private referal made contact and i wasnt in the headspace to talk, i was still full of strong pain medication and focused on healing. I’m turning a corner and ready to move forward and your words are a real motiviation so thank you :pink_heart:

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Thanks so much :pink_heart: We’ve had similar experiences as far as reflection (and being party people :joy:) and I realise I need to let go and embrace the change, I guess its tough, to focus on what this can give me when I’m still in the midst of it taking so much away, but I’m trying to be kind to myself and I will get there! I hope you are thriving and enjoying your new-found drinking balance and enjoying every moment of life, because at the end of the day we’re still here. Cheers to that :wink::pink_heart::clinking_glasses:

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Thanks so much! I’m so glad you have found so much strength and wish you every happiness in this crazy journey. Big hugs :pink_heart:

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Thanks so much. After my surgery tests showed I am cancer free and I didn’t need further treatment (the benefit of having such aggressive surgery!) I need further fat grafting so I’m in limbo trying to gain weight for this which is slightly counterproductive to getting back to fitness and just being me - but I know how lucky I am in the bigger scheme of things so trying to focus on this!! :pink_heart:

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I empathise so much with you. I’m almost a year post radiotherapy. The surgery and radiotherapy were no big deal to be honest but the aftermath on my mental health has been awful. I just can’t get over this and like you still feel in limbo.
I suppose we never return to who we were but I think back to other life events and it gives me a little hope. I think back to our first baby, born with disabilities and lifelong responsibility I thought I was not cut out for. Our daughter today couldn’t bring us more joy but over 20 years ago I couldn’t see that.
You will still be able to have fun, go on trips, have holidays, party with friends. Statistics tell us about risks but honestly I think it’s down to luck, genetics, environment etc. A lot we can’t control.

I say this as a person who thought this couldn’t happen to her. I haven’t drank in 8 years, don’t smoke and eat well, no family history, not overweight etc . It made no difference. I’m not saying do all the risky things but honestly don’t beat yourself up over a great night out. However if you do decide to give up alcohol I can promise you, you won’t miss it :blush: and you can still party.

I’m not sure any of this helps but know that you aren’t alone. It’s really hard and the thoughts of recurrence rarely leave my mind. Life just feels ruined right now and I envy people who I see as having a carefree life. That’s just my perception though and not based in reality. I have no idea what other people are struggling with.

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Hello @proudmama

You’ve come to the right place. I echo everything those who’ve replied have said.

What I will add is that 11 months after my mastectomy, chemo, rads (nearly 5 years ago) with zometa infusions for 3 years after that and 10 year’s worth of Anastrozole, I was having a lovely few days away with my oldest friends. It’s an annual thing we do. We were in a tapas bar in Devon, overlooking an estuary with little boats bobbing about in the setting sun. I started to gentley cry (and I am now typing this) because I realised I felt like the pre-BC me.

Obviously I will never ever be the pre-BC me, but I felt like me , and that is a massive massive difference.

After my hospital treatment, my husband and I went on our usual european beach holidays. I bought a static caravan when I retired. We spent a lot of time there. Roll forward to almost 2 years ago and my husband died. I’m not asking for sympathy, but I’m now sort of living my best life. I would do anything to have my husband back even for 1 minute but my friends are amazing and we do all sorts. I’m lucky in a way that 2 of them are single so we can go on holiday together and have weekends away and days and (cocktail) nights out.

Just today I was in town with 2 of them. I spotted the falsies in Primark and thought I’d try one - £6, why not? Anyway, the ladies were super supportive looking for my size and side and asked sensitive questions that they hadn’t before as they’d not seen a prosthetic. I saw understanding lightbulbs go off in their eyes. Then one asked the staff why their swimming costumes and bikinis are not longer all pocketed. They got 1st hand how these things can be a problem for us. At the end of the day we were 3 ladies shopping together and helping one to look her best.

A rambling reply - I thought it important that you know there is normal life after breast cancer. It’s slightly different but all those things you think have potentially gone are there.

I’ve recently changed back to being a dyed fiery red-head after being bleach blonde for over 10 years because the party doesn’t start until the red-head arrives!

It’ll come - one day. I promise.

Love AnGELa x

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@proudmama you are still you! Loads of people who have really healthy lifestyles still get cancer. 40% of cancers are NOT lifestyle related. I’m having a couple of glasses of cremante right now as it’s my partner’s birthday today and it was mine yesterday. I don’t believe cancer or chemo or any of the other treatment is meant to be a punishment. We still have to live our lives and enjoy them. So don’t feel bad about throwing caution to the wind every now and then and celebrating life. Things will settle down and your true friends will still be there for you regardless of how you look, how many breasts you have and whether they’re real or not, or whether you decide to “party “ or not. It’s all a lot of crap but life isn’t meant to be a breeze. Keep coming to these threads for support, advice and positive reinforcement :+1::heart:

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I’ve been reading other people’s experiences with great interest. I was diagnosed 2 years ago on Thursday and had the whole kit and caboodle of chemo, lumpectomy and full axillary clearance, radiotherapy, Letrazole, Abemaciclib and Zoledronic Acid :roll_eyes: This week I am 1 year after my radiotherapy finished. I am still astonished that I’ve had breast cancer, still think about it every day and am still learning to live with it but I can now see the way ahead.

5 years ago a very close friend and I were both turning 60 within 6 weeks of each other. We planned to both dye our hair pink and have a party. Sadly she became very ill and died a week after my birthday so we never did either. On the 5th anniversary of her death, last December, I thought I’m going to do it. So for the first time in my life I had my hair dyed, and I dyed it pink, for both of us.

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I can’t wait to get my pink quiff back. I’ve been a pinkie for over a decade and I really miss it. xx

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I was a bit scared as I’d never dyed my hair before. I waited about a year after my hair had started to regrow and the hairdresser used a gentle dye to highlight the grey bits :roll_eyes:

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