Where The Hell Have I Gone?

Coffee Lounge Speaking and writing about your experiences
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Not sure how to word this as I do not want to sound disrespectful to all those who nursed me, operated on me throughout my treatment but does anyone else ever ask themselves ‘why did I go ahead with the treatment’. I don’t know what I expected when I first started my treatment (and to be honest) my treatment went very well, I survived chemo, surgery and rads incredibly well (especially as I did it all on my own) with no family I never even shed a tear outside when they told me I was eligible for transport (they thought I was crying because of cancer) not so, it was because I had no way of attending treatment without the free transport as I live over 25 miles from the hospital.
I am struggling with my weight owing to Letrozole I am working hard to eat sensibly and have lost weight but it is so damn hard far harder than before taking letrozole, life seems to consist of being very careful what I eat (which is miserable for very little loss. I also read what a lot of you lovely ladies have been doing since your treatment and that makes me realise I have done nothing… I have completely lost my sense of direction and self-esteem (not that I had much of that before) I look in the mirror and loath myself - my hair is refusing to get a move on (no wigs not me) I wear hats - I just want to get some of the real me back but she is far, far away.
I tried to get some MH help as I suffer from Border Line Personality Disorder ) more chance of winning the lottery. I am not upset about the ‘actual’ cancer - cannot alter that - but I do question the after ‘fallout’  which has done more harm to me than the treatment I have NO idea how you are meant to get back on track with no structural guidance/help.

Sorry, sorry sorry for moaning as I know a lot of you ladies are facing far tougher times.

Poppy xx

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Hi Poppy

  1. No apologies for expressing how you feel. This is a safe place to be honest about how you feel about your experiences.

  2. No comparisons - all our experiences are valid, whether it’s a simple lumpectomy or a secondary bc diagnosis.

I can identify with a lot of what you say (though I had a really rough ride with chemo), particularly the not crying. The only time I cried was when I rang my hairdresser to ask her to come and do me a buzzcut and I think it was just that I heard the shock in her voice. But I do wonder whether crying isn’t the healthier way forward. It’s not strength or weakness, it’s part of being ourselves and owning our emotions. But I have my practical mum sitting on my shoulder reminding me that there’s no point in crying. Hmm…

Hospitals are great at dealing with the treatment of breast cancer but not so great on the non-medical side of things. You are right about mental health services. I had to resort to seeing a therapist privately because all I was ever offered was cognitive behavioural therapy, a sticking plaster over a gaping wound. Do you have access to a Maggie’s Centre? The opportunity just to sit and talk with someone who understands how hard it is to navigate cancerworld can be very helpful, though it won’t help with the BPD. I don’t think the restrictions and loss of face-to-face services because of the pandemic have helped us either. However, there are online services if we want them, zoom groups, videos to guide us through different kinds of exercise like Qi Gong, yoga, mindfulness, pilates… Different charities provide different services, just not the face-to-face we need.

Like you, I see what others are achieving and feel so angry at myself for not doing better. I now have secondary bc and the emphasis is on Living Well. I read about people’s holidays, long walks, marathons and family celebrations and think to my 70th birthday (me in bed incapacitated by the new chemo, instructions to friends that I wasn’t celebrating), then our Golden Wedding anniversary where we celebrated by getting in a posh afternoon tea (not a lot you can do while instructed to continue shielding). I feel so cheated because my mental health prevents me from hopping on a plane or painting the town red. I almost feel obliged to show that I can Live Well in whatever time is left. But why should I? My life was unexceptional before and it’s unexceptional now. 

I don’t know if you’ve read the article by Dr Peter Harvey about the way forward after cancer treatment but I’ve included the link. I read it repeatedly, till I found myself back on the treadmill/rollercoaster/however you see it:

workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

How about making tiny changes you know you can manage? I’ve got into the routine of plugging into a YouTube video on Anxiety (Progressive Hypnosis) after my morning chemo and I can feel the peace of mind it gives me. When I can’t sleep (every night? Probably because I sleep so much in the day) I plug in again and it rarely fails me. Although wobbly when walking, I’ve started driving again as my co-ordination is fine when I’m seated and, once I get my flu jab, I have a list of places I plan to drive to, even if I can’t walk any distance. I’m beginning to feel myself again, two stone heavier (thank you, anastrozole), without many clothes that fit but ready to face the world again, regardless of any breast cancer labels.

I guess I’m trying to say you’re not alone in feeling angry at breast cancer but please don’t be angry at yourself. You’ve taken enough of a battering. Small steps, one at a time, and you’ll find a new you because we can never go back, can we?

Take care,

Jan xx

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Dear Poppy,

This is such an interesting post, so many ladies feel the same as you, however don’t take the time to express themselves……very well done to you, you have made me feel better and I feel sure lots of others who will read this. So many suffer in inwardly including myself.

 I don’t hope you will get some good advise from this site, you can call the nurses, they are outstanding, very caring, softly spoke, always have time to listen.

Take good care of yourself,  my god you are a strong brave girl. I always say one day at a time. Keep posting and let us know how you are getting on.

Big hugs Tili :rainbow:

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Poppy I’ve just read your post and I’ve asked myself that same question so many times. It’s so true we don’t think of how we will feel after treatments finish. We just assume that we will go back to how we used to be,but cancer changes you ,it also affects the way we look,we look in the mirror and see a different person staring back at us,it takes ages for our hair to grow and when it does, even that isn’t the same,the texture is different, chemo curls,that stick out and are hard to control.  Then there is the tablets we have to take every day in my case letrazole and Adcal  ,as my cancer was hormone related, so my estrogen levels had to be lowered as that’s what the cancer was feeding on. I’ve to be on this for 10 years,and that in itself changes you too,putting on weight,more hair on your face  and chin,aches and pains  ,ecspecialy in my hands,wrists, shoulder and left heel. All these things,I never even  knew would even begin ,with having to take letrazole, but many of us woman take it,as we are told it helps to hopefully stop breast cancer from returning. 

No wonder we feel we’ve lost ourselves, ive come to the conclusion that it’s because we were not aware of how we could feel after treatments finished,that we are not given enough information as to how we may feel,that it’ comes as a shock, to us all when we start to feel like this after treatments end. I think this should be discussed with us before treatments  operation start, yes it would be a lot to take  in,but I think it would prepare us all of what to actually expect.

I myself am worried as my gp has asked me to see a gynecologist  2ww referal, and I have to have bloods tests, renal profile, liver profile,bone profile,FBC,and one that’s been asked for is Ca125  which I know is looking for cancer , ovarian cancers  etc. I had a growth before being diognosed with breast cancer, and a doctor told me it was a skin tag. During chemotherapy it started to bleed,it didn’t look like a skin tag to me,as it had a whitish appearance. It started to bleed a bit again,not a lot,but I recently went to see another gp about it,and she is concerned about it,so checking for cancer  to hopefully rule it out. . So my point is don’t be to hard on yourself,you’ve been through a lot,as a lot of us on here have,getting your feelings written down and out, and posting on here where people get you, and know excactly how you feel is a good thing.i do hope given time, we will all find ourselves given time. Big hugs and much love is sent your way,and to evety woman going through this dreadful diesese. :broken_heart: x

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@Anonymous  

Hi Poppy.  It was honestly great to read such an honest account of how so many people feel at the end of treatment.  I first had cancer treatment 8 years ago, surgery, chemo and rads.  I was 42.  I thought I’d pop out the other end, and within a short while I would be back to my old self with work etc.  It didn’t happen like that.  I was a Lawyer.  I have never returned.  I had a therapy session, yes just the one!!  That took enough hard work to get.  I explained it to the therapist that in my left hand I had the pre cancer Nicola.  I knew her.  I knew what she was able to do, achieve, her strengths and weaknesses.  On the right hand I had the post chemo me, and I did not know her.  Not knowing her frightened me.  I never, ever expected to feel like this.

what I can say is that eight years on, my work had changed but for the better, and I eventually realised this.  I am not a person who enjoys the gym, but I did find a love of walking and 12 weeks before I was diagnosed this type had surprising found a love of jogging thanks to our local Park Run and I will be going back to that.  There was a great life after chemo, I just couldn’t see it, and I needed some time to work out what that was.  Please don’t give up, and please be kind to yourself.  

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Hey 

I think we’ve all gone, I’ve been told to accept the new me and limitations but Christ it’s hard. Still struggling 3 and a bit years on from diagnosis. I just think roll on being 58/60 when I can come off the hormone therapy. I wish we had zoom chats where we could all have a winge xxx

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You may find Penny Brohn charity helpful, they provide a lot of online and in person support. I found their approach very nurturing and aware of the MH struggle.  With regard to diet, Dr Rupy “The kitchen Doctor” is great and also Dr William Li “eat to beat disease” he does a lot of podcasts / Ted talks - his mantra might suit you as he is all about adding good foods to your diet rather than taking things away and feeling miserable & guilty.  I’ve found both of these have made eating better so much easier.  Good luck