Getting back to who i was

Hello! This is my first post! I have dipped in and out of reading posts on a lot of forums the past 18months for advice and support but am struggling to find anything that relates to me now. I have finished my treatment, i had 2 ops one lumpectomy and one re-excision, 6 rounds of chemo hell, 20 radiotherapy treatments and 18 rounds of herceptin. I have now been bounced back into life with my fingers crossed that it is all done! And have no idea who i am anymore! Does anyone else feel this way?

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Hi and welcome to the forum.

I had lumpectomy, chemo and rads. Now on letrozole and zoladex. Coming up  to 2 years since diagnosis.

I’m not sure that it is possible to feel the same as before diagnosis. There is a constant worry of reaccurrance, but as time goes on, it is not at the forefront of my mind anymore. I think there is a new normal…if you get what I mean. A new way of looking at life.

I have gone through many changes during this time, but have learnt to take one day at a time, and I cope the best I can .

Best wishes

Sue xx

I was looking through the forum for someone who had, was or is experiencing similar feelings to me and saw this post from 5 years ago. I hope you are in a good place now.

I don’t think any of us really get back to who we once were because major events in our lives good or bad will affect us one way or another. Back in 2010 I had grade 3 DCIS breast cancer , wide local excision surgery, chemo, radiotherapy and aromatase hormone therapy. I didn’t fair well on the hormone therapy and stopped it 4 months in as it literally crippled me. I recovered soon after and my life bounced back pretty ok thanks to a loving supportive partner, great friends and family.

We all live with the fear of cancer returning and sure enough it did return in April 2023. I felt I’d had a good run and naively thought I’d sail through despite being told I needed a mastectomy. Good I thought, my cancer is in the same breast as last time, get it off completely this time, problem solved and I can get back to another ’ new normal ’ !! 

I had my ’simple’ (they called it) single mastectomy three weeks ago. Simple because I didn’t have reconstruction due to an earlier (2 months previous) back surgery and I have a pending bowel surgery in a few months. I was discharged within little over 24hrs, didn’t have a drain put in and within a week had to go back in dreadful pain and soreness to have a large seroma along the stitches aspirated. I put on a brave bounce back face initially on leaving hospital and believe that was thanks to the anesthetic. I joked about having tattoos and made out I was ok with it all…In truth I haven’t bounced back but gone to a place I’ve not expected to be and feeling quietly depressed, emotional and definitely not good seeing myself as I am now. The seroma fluid is back and I’m sore and uncomfortable despite doing everything by the book, massage, exercises, taking it easy etc. I know I can’t get back to that person I saw in the mirror before I ever had cancer in 2010 and certainly not now I have lost a breast and gained a massive scar because I am older and don’t even look like that same person anymore. I’m tired, very tired and still have another surgery to go. So where do I go from here?? 

One day at a time …one week at a time…one month at a time until I regain my health, my strength and fitness to be and accept the new me. I have to learn I’m not superwoman and have to accept I need to ask for help on my road to recovery ? The fact that the reaccurrance 19mm tumour was grade 2 DCIS is less of a worry, it was the finding of numerous higher  grade precancerous foci dotted around the removed breast waiting to turn nasty that worries me more - where else might these be in my other breast or body. Will it return for a third time as these tiny foci can’t be picked up on CT scans. My consolation is that if there are any, they grow so slowly I’ll probably be near the end of life anyway before they’re picked up again. Mammograms stop after 70 I’m told and I’m now 68! ? So I’m never going to get back to who I once was anyway - I once was a lady scaling up the Himalayas in Nepal and cycling across Vietnam and Cambodia to Thailand in my 50s ? But I do intend to beat my current depression and get back on my bike again by next Spring ?? and work through that bucket list of mine next year with a Danube River cruise with our friends. Something to look forward to rather than looking back at what’s lost ? x

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@Brightside55 just read your reply and I think you are  superwoman! What you have gone through and your amazing attitude is absolutely heroic and brave! The more I read on these forums and the way that women are quietly getting on with these massive challenges is so moving, and awe inspiring! Wishing you strength,  and good health xxx

Thank you Margot, wishing you the same ?

Hi,

I have been contemplating sending out a question about when do people start feeling life is a bit more ‘normal’ after treatment and came across this post. 
I had a mastectomy in April and have started hormone therapy recently. I just don’t feel life feels remotely normal yet. I am not sure what I am expecting or how I could think I’d be moving on so soon, but it all still feels so new. My wound is healing really well (although I still have a slight seroma on the outside edge). Under my arm still aches and I’m aware of it pretty regularly. 
So far, I’m doing ok on the hormone treatment (Zoladex and letrozole), but I think I’m still anticipating the onset of more difficult symptoms. 
The big challenge is managing the fear. Every lump, bump or ache makes my stomach flip over with anxiety. I am making sure I put lots of things in place to support my mental health and I guess it’s just going to take time for life to feel a bit more ‘settled’. 
I remember the surgeon saying I’d be able to carry on as normal by four weeks post surgery so I think I just wasn’t anticipating it all still feeling so new three months down the line. Naive, I know. The surgeon was right in that I could do lots physically by four weeks post surgery, but there’s so much more to all this than that….

I’m rambling with no real point other than to offload the going’s-on in my brain and to hope others can relate! ? 

KayLou2 :heart: you are not rambling :heart: everyone finds their own drumbeat a day at a time :heart:so don’t be hard on yourself or put pressure on yourself you are doing the best you can :heart:if you are in the Uk please look at a moving forward course :heart: there are other things too like spirit and soul equine therapy not sure if you still get 4 sessions funded by your Macmillan but the lady who runs it is a bc survivor herself and  going there helped me and others in the early days :heart: im sure others will pop on with help and support too :heart:??:sparkles::sparkles:Shi xx

Hi KayLou2

I can relate to the brain ramblings, you’re not alone in those ramblings. I think we all have no end of thoughts and worries that rush through if not all the time, certainly some of the time. I think that’s a perfectly normal response to what is after all major disfiguring surgery with the added fear of the big C returning ?:heart:‍? I’m just over 4 weeks on from non reconstructed mastectomy. I am slowly picking back up on physical activity but am still very sore and quite red along the stitch line. My seroma fluid has largely gone aside from a small pocket under the arm helped by a sports compression cami top rather than wearing a bra. I have been sending photos of any concerns I’ve had to my cancer clinic and spoken directly to the breast nurses when I’ve had those concerns and found them really helpful, understanding and reassuring ?

Shi is quite right about Macmillan - if available in your area do consider one of their helpful moving on sessions. :heart: Do speak to them and the breast nurses who are always there to reassure.

Sending you positive vibes and virtual hugs  ? ???

Hello Kaylou, I am 18 months post end of treatment and think the penny is finally dropping that who I am now is not who I was before. Physical side is just one part,  head space is a different ball game. That’s not to say it’s bad, just takes time to find the new normal. I have my annual mammogram coming up next month and it triggers all the worries…as does any unusual twinge or feeling. Taking to others helps and from that I know this is very normal. You’ve stepped onto a different path than before, it can still be a good one but let yourself gently find the new way.

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You are all so inspiring and reassuring thanks for your posts. I am a battered 62 year old who used to cycle the Himalayas, sailed across the Atlantic and was up for any challenge. After my first cancer I fought back to fitness and somehow managed to sail solo round the UK to raise £12000 for Macmillan while my husband cycled along the coast. A year later I am coming to the end of treatment for my second primary BC which is mind boggling. I am unfit, overweight and need a new hip. I don’t know whether I am more scared of cancer returning, getting yet another primary cancer, or staying as fat and unfit as I am now for the rest of my life however long that is.
I have been offered a vegan yoga retreat in the autumn and have booked onto the Moving Forward course so I am taking steps in the right direction but I am feeling very defeated at the moment. Plan B involves giving up being a bold adventurer and becoming a knitting granny but I’m not sure I’m quite ready for that!

Hi Nancy,
I can relate entirely to your feelings. I’m 68 and climbed the Annapurna in the Himalaya in my 50s and cycled with my partner across Vietnam and Cambodia following my first round of BC chemo and radiotherapy. I didn’t raise as much as you for cancer research but did my bit all the same. Well done you for an amazing fund raiser. I was always fit and healthy with plenty of go in me right up to this second time around DCIS and mastectomy. I had ripped my ACL in my knee prior to spinal surgery just two months prior to finding out my BC had returned !! I feel completely wrecked now and a shadow of my former self. I am now over weight through lack of exercise at the levels I was previously able to achieve, I don’t like what I see in the mirror and am uncomfortable being intimate with my partner. To everyone else I am this amazingly strong resilient woman that doesn’t let anything phase me …but inside I’m feeling exhausted and somewhat depressed TBH most of the time. I too am fighting against the granny knitting person I don’t yet want to be, I preferred the active granny. I’ve found swimming helps, it’s my go to work out and anti-depression morale booster. I think the one thing I find the most difficult at the moment, 6 weeks on from surgery, is the intense fatigue that kicks in after minimal activity alongside chronic arthritis in my knees which prior to the surgeries and treatment I never had. But swimming and just floating in the water helps relieve both stress, anxiety , physical and mental pain :blush: Perhaps I should consider the moving forward course too. Sending you positive vibes and virtual hugs for a speedy recovery :hugs::two_hearts:

Aw @Brightside55 I want to be your friend! Are you anywhere near Devon?
I think one aspect of all this that gets to me is the effort involved in being that cheery strong person that takes everything thrown at me with a joke and is super nice to all the staff. It’s such hard work to maintain the facade when I’m so pissed off with it all. I’ve got a little mini adventure tonight as I’m heading over to France with my ebike to watch my DH ride the Paris Brest Paris 1200km Audax. I will catch a glimpse of him at Sizun in Brittany. Then I have a week in a gite on a cheese farm with friends chilling and swimming in the lake. I have lowered their expectations of me but there are some lovely churches nearby to visit with Enclos Parossial. And croissants and coffee.
When I get home it’s time for the bone infusion, the next round of drugs and a scan for a painful shoulder to check it’s not metastases.
I will go back to swimming when I finish oral chemo as my immune system isn’t quite ready for a public swimming pool.
I hope your fatigue is lifting and the wounds are doing okay.
Nancy

Hi @Nancy.B I too am being checked for metastasis but in my stomach. How completely crappy is it when it’s said to you so matter of factly and all you can think is “this will change my life absolutely and irrevocably”. I live alone so have plenty of time to ponder the what-ifs. However have been told by my oldest friend only this afternoon to “pull up your big girl pants” because I’m worried about the time it takes to get the tests I need. I guess this is how it’s going to be from now on. I’m not as outdoorsy as you but I was an award-winning Latin dancer and still kept it up albeit not to competition level into my 60s. The crippling fatigue has put paid to that. I wish you a wonderful break and good luck with your upcoming scan.

I’ve posted replies on here several times to try to help others as they are thrown into this awful situation. This is quite rambling. I finished my 2 courses of chemo, lumpectomy and radiotherapy in January last year. Physically I’m left with nerve damage from peripheral neuropathy resulting in problems with my toes (where nails are still coming off) and pain in my breast and shoulder as the scar is in my armpit caused nerve damage. I have pain in my breast bones and ribs from radiotherapy. I have bald patches on my head. I’m alive but feel very old and unable to do many things. I am worried about local recurrence as I had TNBC invasive ductal breast cancer. I have a meeting with a consultant radiologist on Thursday as I am certain my mammogram in 26 March 2021 couldn’t show the DCIS as I have dense breasts. I had explained to the radiographer that I was concerned that I was experiencing breast pain, this continued and worsened until I found a large lump in my breast in Sept/early Oct 2021 exactly where I had the pain. They say the high grade DCIS and invasive ductal cancer must have started after my mammogram. I don’t accept it, I have dense breasts and believe the DCIS was present but not visible in March 2021. Even if they continue to say it all happened within the 6 months, by the time I have mammograms every 12 months it could mean a local invasive recurrence could have developed and spread. I have no confidence whatsoever in mammograms and would prefer MRi as they seem more reliable for women with dense breasts and picked up a small 2nd tumour & radial scar. It’s not for any personal gain, I simply want to feel safer than I do. Apologies for the length of this but I feel unable to move forward. If anyone is interested I can report back after my meeting on Thursday. Best wishes Joan xx

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