Treatment ended but still struggling

A fellow BC warrior sent me this so thought I’d share as I’m sure a lot of us at the ‘end’ of our treatment can relate

I think the hardest part of cancer treatment is at the end–when everyone assumes you’re “cured” and you no longer need their help. You’re in your weakest, most devastated state, plus you no longer have the mission you had when you began this journey: to kill the cancer. The cancer is toast, but so are you, and now, like a soldier at the end of war, you need help putting yourself back together, only everyone has gone home since they assume the war has been won.

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Thanks for sharing this, im going to copy it to reread as I think this really sums up how most of us feel not just at the end but at each stage of treatment.
I’m not at the treatment end stage yet but I’ve recently completed chemo and yesterday got my MRI result which has shown the lump has gone. Now I know this is amazing news and everyone has been messaging to say how great it is but to be honest I’m a bit numb. I can’t help thinking about the lumpectomy I have on Thursday and wondering if they’ll get clear margins and will my lymph nodes be okay etc etc. If this is what I’m like just now I’m sure I’ll be the same once treatments ends. This process really saps your ability to be positive and I need to force myself to take note of any good news and enjoy it rather than moving on to the next part of the process and worrying about that.
Its good we can share this with eachother because I don’t think anyone else would fully understand why we are not all jumping for joy once we are a step closer to stopping treatment or at the end of treatment.
Again, thanks for sharing xx

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I think you put a lot of effort into your physical recovery going day to day appointment to appointment and on to the next stage never looking too far ahead but when it’s over - what then . It’s only then that you start to fully process what’s happened and everyone else thinks that you are back to normal but you may not feel like or be the same person that you were or want to go back to how things were and though you may be recovering physically emotionally you are completely used up. It’s a most confusing time - I can recommend the Holistic Needs Assessment the Moving Forwards course and if there’s a local support group that may be helpful. Xx

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I was diagnosed in july 22 and my treatment didn’t end until September 23. I can totally relate to your post as i feel very lost and have a feeling that this is not truly over and ive no idea why. I can only hope that i will feel better as time goes by. X

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Thanks so much for replying everyone. I know a lot of us are feeling a bit lost at this stage. For me I think a big part of it is feeling guilty that I’m not just grabbing life by the balls and feeling ecstatic that I survived and that treatment is over. I’m so lucky compared to so many other people but it’s so tough just processing what happened and trying to move on. Lots of love to you all xx

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@1980 It’s so hard isn’t it… I was saying to my husband today that although I felt like I’d turned a corner recently and was feeling really positive about the future and happy to be alive, for some reason I suddenly feel rotten again and am hyper aware of my boobs (one real, one reconstructed). I looked in the mirror yesterday and actually frightened myself at how unwell I look… I think it’s the lack of sleep and worry - but you can’t help but panic that it’s more than that, and that things are back! It’s a crazy rollercoaster and only us ladies can appreciate how difficult it can be processing and coming to terms with what we’ve been through. After being in the wilderness for a few months now, I’m actually feeling excited about seeing my oncologist next week for a six month catch up - how weird is that!
Life just carries on for everyone else around us, and they literally have no idea! Sending hugs, you’re not alone here :hugs:xx

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I feel the same…I first found the lump in May 23. Had lumpsectomy in August, the Margin clear op in Sept. Started Chemo in Nov, last of 12 rounds last Thursday. Just walked out the ward alone after, as no Bell at hospital…it was overwelming. But had noone…

Recovering at home again alone from side effects. Got 3 weeks of Radiotherapy starting in May, then guess back to work in June…Do I just carry on like last last 8 months of treatment is done and im ok. My head isnt feeling Ok…

Im not even worried about the hair, that wil grow back, but the fear of how I move on, tromoxilin for how long?. Menopause…Life after treatment is going to take time…

Will work just expect to be as i was?..im exhausted…My head is still over the place…i think its going to be a while for me to be myself again…

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Dear 1980,
clay83, ,
Tricia1919,
Diddy1,
Leona47,
JoannnanN

Wishing you all health and happiness going forward, I think we all totally agree with 1980 thank you for your post putting life into perspective

All give yourselves the big hug for gettting this far.

Much love Tili :pray::rainbow::pray::rainbow:

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Hi everyone, I too can identify with everything others have said. Diagnosis for me was May 23, 7 rounds of chemo to Nov 23; lump was gone & nodes clear after that, but still needed lumpectomy & node clearance in Dec23 then 10 days Radiotherapy in Feb. Now it’s all a bit odd, I have Phesgo injection in my leg every 3 weeks until Sept and am on letrozole tablets daily for 10 years + Ibandronic acid tabs daily for 3 years. Both tabs & the Phesgo have side effects. Couple this with my hair, nails and intestine still being quite different from before and everyone thinks I’m past treatment, but it’s far from it and my ‘head is a shed’ as a friend sometimes describes it.

I start the moving on course this coming Wednesday and hopefully that will give me some tools to help the transition, plus reading all you lovely pink ladies’ stories reminds me I’m not alone.

Let’s keep sharing support and ways we’ve found for managing.

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:heart: it can take time to put the jigsaw puzzle pieces of you back together again :heart: it felt like being in a hurricane and being spat out on the yellow brick road on my arse and watching the hurricane dance off into the distance. Bit by bit and day by day and do it your own way :heart: when your ready :heart: the mental journey as well as the physical that none of us ever expected to be on is without doubt a life changing hell of a ride :heart: but remember you are still you :heart: with more life experience from what happened :heart: the moving forward course is something to look at these are online and face to face and have helped many over the years :heart: spirit and soul equine therapy MacMillan did do 4 free sessions might be something else to look at. Sarah the lady who owns and runs it is a tnbc survivor herself :heart: day at a time and do use the number on here and speak to a nurse and maybe the someone like me option :heart: and people mean well when they think everything’s ok they truly do :heart: but they will never understand what’s behind the locked door in your mind where you will slam it behind the big door and keep the key in your pocket because thankfully and god willing they will never face what we have :pray::heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx

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Thanks for posting this. It sums everything that I’ve been and still going through almost 3 years since my diagnosis…

Diagnosed in July 2021 with very advanced and invasive lobular cancer ER8 PR8 with 3 lymph nodes involved. I was 43 years old at the time and symptomatic. My tumor was 12.5 cm. Had mastectomy and full node clearance. Needed a 3rd surgery as I had a very nasty infection. Had 4 EC and 12 Paclitaxel cycles and 15 RT sessions…

Still in active treatment as I’ve been put on Abemaciclib for 2 years in June 2022…on Letrozole for 7 years, Zoledronic acid for 3 years and 3 monthly Prostap injections to keep me in the menopause…

It seems that with my treatment coming to an end I am felling more and more anxious but my oncologist is very positive and happy for me…and it sees that everyone around me too…at work people think that I am fine but nobody really knows what I am going through and even though at home my husband is very supportive sometimes I feel very lonely…is this feeling going to go away!? I’ve been put on antidepressants for the hot flashes as my menopausal symptoms are really bad but somehow feel worse…I should be ‘happy’ but is quite the opposite and feeling ‘meh’ all the time it’s been very difficult…

Thank god for this forum where everyone can vent out…

Thanks for reading my post and take care everyone.

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Hello
I found this link and document really helpful, hope the link works http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

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This website also has a link to the article by Dr Peter Harvey https://peterboroughbreastcancersupportgroup.co.uk/young-women/after-treatment/

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Hi, I have just joined and so glad I did, this post really sums up how I am feeling.
I was diagnosed in Dec 23 & have just finished my chemo, but still have surgery and radiotherapy to go over the next few months but this last week I have been feeling so incredibly low & anxious and couldn’t understand why, it’s like the full impact of what I’m going through has hit me and I hit rock bottom.
People around me have been congratulating me on getting through the chemo but I haven’t felt like celebrating, I just want to curl up in a ball in a dark room

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I’m so glad I added this post as all your replies have really helped and it feels very containing to know we have each other. I’m surrounded by amazing people but it feels like no one apart from those of us who have experienced this shitty journey truly understand. I know people mean well but when they say things like it could have been worse and at least you didn’t need to go through A, B, C etc it just makes me feel guilty that I’m not dancing in the streets and appreciating everything. Even though it could have been worse all of us have experienced a massive trauma and are experiencing long term side effects. I feel like I need time to grieve what I lost. I wasn’t ready to give up my lovely oestrogen for at least another few years! Sending love and empathy to you all xx

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1980-I know just how you and all the others feel! Especially about the Oestrogen having taken hrt for 30+ years then lumpectomy Oct 2021 then-wham Dec 2021 cold turkey! I saw the oncologist last week as I was concerned about lumpy feel in my armpit and he thinks its scar tissue-(4 clear nodes taken) but I’m on Exemestane, and suffering headaches, so as I am on open access for another two years, I had an appointment I wanted a scan or MRI as worried about brain tumour etc! He refused, saying you’ll be fine, but I said, sorry, you can’t POSSIBLY know how I’m feeling! I came away feeling down and have stopped the drugs for three weeks to see if the headache goes-I’m 79 now and it’s quality of life anyway now! But how condescending of him to say such a thing! No-one wanted to join this particular club, but to be lumped together with one med fits all is wrong! I admire all of you who are so much younger than me, with young families, jobs etc managing to keep it together, you are all amazing, and I would like to hope that had it been me then instead of now, I might have risen to the task as you all have but I’m not so sure! Gold stars all round!!

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I feel the same way. Finished treatment. Now what’s it all about? Every one has gone on with their plans and I know the dirty little secret. Things change dramatically with one phone call. So I’m kinda half listening-like I have listen to my self making plans. Not dwelling, just different. I guess I just don’t have much to say, except to my family. Any one else I struggle now. That friend you had? She’s gone. She survived and is delighted that she did. But she just isn’t the same. My husband says I need new friends

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Dear loulout,

My heart goes out to you you’ve been through so much, I think when treatment has finishes we all feel thank God we’re over it but we’re not over it, it hangs over us family and friends can be great, but sometimes they don’t always understand.

I was wondering whether you would consider the moving forward course I personally found this outstanding and made some friends which I still have. I know this doesn’t suit everybody but maybe look into it or have a look on the Maggie website they also offered support.

Thinking of you, Wishing you well, you’ve come so far and been really brave. Also, since Covid hospital appointments together with GP appointments or just not the same anymore, there’s not enough time for each patient the care and understanding it’s really not as good as it used to be (In my opinion)

With the biggest hugs

Love Tili :pray::rainbow::pray::rainbow:

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Spot on. It can be a lonely old battle field. Would the fellow warrior be happy for me to share this?

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Thats a huge amount to process. xxxxx

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