I have found it so helpful reading all your comments. I was dx in March, surgery at end of April and have just had chemo 5/6. I'm wondering where it's all leading...
I have been a passenger in my own life, really, without much sense of direction. My husband left me 10 years ago and since then I have been working really hard at a frustrating and stressful job, to bring in enough money to raise our two boys happily and comfortably. Now, with BC, I am thinking I should make a few changes to my life to try and be happier and calmer. After all, life's not a rehearsal, as they say.
First change: ditch the career. I used to think I was working so hard I could make myself ill and now look! I won't have as much money, but I will have more time to spend with my loved ones. I don't think I'm being irresponsible as I should be able to find work to make ends meet.
Second change: move away. I moved 250 miles from my roots to be with my husband at the time and he's still here but I'd like to be nearer my family.
Like some of you I thought I knew what my health demon was (heart disease is in my family, so I've looked after my diet and exercised lots). But now the game has changed. Sometimes I lie awake at night thinking "please let me live long enough to see my children through school". Another 6-8 years would do it.
Not that I've had a terminal diagnosis. It's just the uncertainty, which every human lives with although they don't know it, is plain to see for us lot.
The person I was pre-diagnosis wasn't especially happy, but she was settled. Now I'm contemplating big life changes and how do I know if I'll be well enough to enjoy them? But having woken up and smelled the coffee, how can I go back to the rut I was stuck in?
It's so confusing! Good luck and best wishes to each of you!
Bless you hon I can totally sympathize its a long hard journey no matter what people say were all different and if we feel angry or hurt thats ok its what we feel... i,m post surgery 9 mths now and had some dreadful times I still feel a different person to a year agobut maybe thats the Letrozole so looking forward to the day when I find myself again... it will come xxxx
I totally agree with everything that is being said.
I feel like someone has died.
The only joy I get is when I look at my 7 year old son and he gives me a cuddle.
I too have been through a lot. I have 2 brothers and all 3 of us have now been through life threatening medical situations.
I nearly died in 2002 of an ectopic pregnancy and I have only just got over loosing my Dad and now this!!!!
Life is damm unfair and I certainly mourn my old life.
I wouldn't wish this on anyone but I am angry that once again I am being tested.
I still can't believe that words like cancer, chemo and mastectomy have come into my life.
Wow - came upon this thread by chance and you all sum up parts of how I feel. Still feels like it can't be true and I could just step back into my old life. On good days I think that when we get through this, life will be better, the colours will be brighter and I will never take anything or one for granted again (bit corny). On bad days it feels this will never end and life will always be clouded. Sad to think this was always going to happen to that young girl in the past, no matter what else happened in her life.
I lost track of this thread until someone mentioned how to get back to ones you've posted on.
ElK - I really empathise about your mum. I am 54, and the first thing I thought when I got the diagnosis is "I want my mum"!!! and felt like that 6 year old at the dentist. Maybe its part of not having kids, somewhere in the back of your mind you still are the kid. And totally get the thing with the neighbours. I remember one evening near the beginning when my 2 sisters came round, being very supportive, and feeling jealousy like I've never felt before.
My mum is still in the land of the living, but with advanced dementia. But she would have been so good at this, and I really miss what she was. Oh hell, another tear, and I'm at work!
Norberte - really sorry about the nipples, but thanks for sharing. I only realised I had quite good boobs after watching the sex education show. I still have them but quite extensively scarred now, and just when I started to appreciate them!
It's 2:50am 4th September 2011. I can't sleep, haven't been able to sleep for the first 6 days of each EC chemo that I have had so far and I am 5 days in from the 4th one.
I mourn my pre bc diagnosis life. I feel like part of me has gone forever. I wanted to be like my Auntie Elsie who is 97 and still going strong. I still haven't told her.
Being diagnosed with bc is similar to experiencing a death in the family. It is the end of a life I knew but the beginning of the life I have to continue with. Without doubt life will never be the same but it doesn't mean to say that life cannot be enjoyed - which is what I fully intend to do.
Going to head up to bed now - hopefully to get a few hours sleep but if not then I will do some positive visualisations to boost the treatments.
Stay positive everyone - endings can become beginnings!
I totally sympathise with everything that has been said.
I'm over three and a half years from dx and still mourn the old 'me'. BUT it does get easier and you do find the 'new me'. You learn to appreciate life in general and whilst it's not quite the same, it is just as enjoyable.
No, I still don't recognise myself in the mirror but my kids and grandkids don't seem to notice the difference. They still love me.
I just get on with enjoying life and you'll find your way to do that too.
Noone could convert me 🙂 I didnt think you would.
Strength is a sink or swim thing for me and I swim. Having a sense of humour helps a LOT.
Your blog isn't drivel - it's always good to see and read other peoples perspective! By us all sharing our journeys we dont feel so alone and mental! It's good to see that you're not the only one feeling the way you do too. There's strength in sharing.
LOL It's OK El K I'm not trying to convert you!
Whatever it is that makes you so strong I admire it. I am lucky still to have my Mum (my dad died 21 years ago) though she is pretty ill and has been for years.
Thank you for being reading my blogland drivel, it's always good to know it acheives something other than work evasion for me!
btw I am a 'happy heretic' if you ask me for a label... don't think God minds that as much as people do.
Revcat - plenty of training in the school of hard knocks 😉
I had a look over your blog a bit ago and it rang true with what I thought at the start of diagnosis, so many people saying "Not you of all people, why you after everything you've been through" and I said "Why not me?" and "Perhaps I'll handle it better because I have had such a cr*p time of it and had some very tough times"
The one person I miss in all this is my Mum. I've really really wanted my Mum since she died. Before then I always felt very self sufficient and independent. But the 2 times I've REALLY wanted her around were when I first got pregnant, I wanted to share this with her - then the miscarriage, and now BC. It's unfair that I have no parents since the age of 31.
One thing I've been amazed at is my lack of bitterness.
I thought I'd be really bitter about having cancer, I mean I've had a really really tough life so far, since the age of 6.
It felt like a big fat smack in the gob and it means i'll never utter out loud "well it can't get any worse" every again.
But no bitterness.
And I really should be and would be entitled to feel fairly bitter.
It amazes me how much the human spirit can endure when tested to the max.
I'm not religious BTW, never have been, far too heathen 😉
El K - hugs... you constantly amaze me with your courage and good humour on this site despite all that life throws you.
As others have said, I am getting used to the new me - still don't always recognise my reflection as my re-grown hair gets increasingly wavy (I refuse the word curly!!). Sometimes I feel my brain is very slow and my memory is not what it was but overall, compared to so many I've got off lightly in terms of s.e.'s
Had a weird moment last week when I was at a conference... I am allergic to peppers/chillies and always send in dietary needs. One evening out came the starter which was prawn cocktail onto which they'd sprinkled paprika which meant I couldn't eat it. As I sent it back - to be offered a glass of orange juice instead! - I felt disproprotionately sad; I think it was just a reminder that I'm not 'like everyone else' (whatever that means). To compound things, the veg accompanying the main was 'mediteranean veg' complete with peppers, so I ended up with just meat and spuds... My brain said 'hey ho, if that's all I need to worry about...' So I landed on the 'guilt bench' for a while because it was all so stupid to be upset about this when I have friends with advancing secondaries and I'm NED... The old me didn't get quite so guilty about her emotions or so upset over confernece centres that ignored my needs.
I also feel very envious of people going on with their lives and then have to go and sit on the guilty bench, because I feel awful for begrudging people.
A couple on our street seem to have the life I want. They've just had a complete renovation of their house including turning the cellars into a kitchen/diner which is what we're going to do - we bought our house to do up but a catalogue of disasters means we've not been able to do that.
Then they've just gone and got married, then gone to the Maldives for 2 weeks on honeymoon, then a further week in Italy to stay with friends, then some more days away in UK with family.
They came home the other day, looking all tanned, talking to another neighbour, stood in an embrace.
You know I felt so sick with jealousy and then felt rotten to the core, because they are really lovely people.
I just could NOT bring myself to go out and say hello to them and ask them how it's all gone. I thought I'd cry!!
That's what I want you see, a completed house, to get married to have a nice honey moon, to come back then start trying for a baby.
I feel sooooooooo horrible for feeling so jealous.
I said to my OH "they've got OUR lives" and he went "Mmmmmmmm"
and then jokingly said "the b*stards".
I still feel like the same person, just that I have this sword hanging over me now and I'm mourning the fact that I know I'll be so paranoid in future about my health and I'm worried about it coming back. That sobers one up doesn't it? All the bad luck I've had throughout my life makes me even more scared that this will get me eventually, even if I do have an 84% chance of no recurrence after all my treatment!!
I'm also worried that I'll never get my old energy back, I was always able to be on the go and now I'm not and I wonder if I'll ever get that back.
I'm also worried about my brain - I can't think straight, I can't spell, I forget the names for things and people, I can't multi task and my concentration levels are pants and I can't seem to absorb new information easily.
So yes I guess I am mourning how I was - but I don't feel that it's taken away my spirit or broken me, thank god.
I'm sad for my body, the SLNB is massive and gone Keloid and looks horrible and my boobs don't look nice anymore to me.
It's so comforting to read these posts. I sit at home and think I am the only person mourning for my previous life before I became a person with breast cancer. On the positive side, I have found friends who are always there for me. I've finally realized that school can exist without me.Have put my family first and we are so much closer. I am not going to be brought down by selfish people. Yes, I'm sick of those ads and storylines too.
I agree with the others - you have summed it up perfectly - and I am in total agreeance. It was one of the things that made me really sad when I was diagnosed. I knew I would be saying goodbye to that "me" and that life would never be the same - but I never had a chance to enjoy or say goodbye to the old "me" before being thrown straight into chemo with surgery, rads, Herceptin and Tamoxifen to follow.
I have been really down during treatment - despite not having particularly bad SEs - so do feel for many on the forum. I feel a shadow of my former self - no confidence or self esteem and have only been comfortable around others going through the same thing - and my closest friends and family. I keep making excuses not to go and see other friends or big groups of friends - and then get cross with myself for not going. However, I am just trying to focus on the fact that I have got to beat this horrific disease and, if I do, that I will need to use the experience to emerge as a stronger person. I already know that I need to have a change of job direction - something more fulfilling and enjoyable (if it exists!). One of the first things tht went through my mind when I was diagnosed was why I'd wasted so much time in a cr*ppy job that I didn't enjoy and that kept me away from my friends, family and husband. That would definitely need to change. I've definitely reassessed what's important to me in life - spending time with important people. Now, if only I could win the lottery...
My husband keeps pointing out that I am still the caring, loving person inside - and that I will be me again one day... I do hope so.
Barb, I think you have summed up beautifully how so many of us feel. I was dx last October and everything before that seems like a dream now. I am still mourning the person I was before cancer and hoping that this will be better once I get all the first year anniversaries out of the way. It is so hard to convince ourselves that we do actually have any sort of future at all but I keep telling myself that *some* future is better than none at all and it does help.
I was dx in Sep 10 and am back at work after mx, chemo and rads. I can't get back to any normality though as I have to go back to the chemo ward every 3 weeks for herceptin. I'm 43 and always seemed younger. Now I feel old in body and mind. I heard a record on the radio recently which summed it up - the girl who used to be me. I you tuned it and it's from Shirley Valentine.
I think I am slower and not so good at multi tasking. I am more thoughtful and appreciative of my family, friends and life in general. Cant eat as much as I could without putting on weight and have to watch my necklines. Am about to start another phased return to work after more surgery. Don't worry so much about work. I have started to think about things I enjoy and actually do them. I have become a bit bolder and more assertive. Would like the pace of the old me back but am happy with the rest even though chest is still work in progress. Would never have preferred having cancer but it did force me to get off the hamster wheel and re evaluate.
I agree with everything that you have all said previously, plus I just wish I could go a day/hour without thinking about BC, sometimes I feel like I cannot think about anything else.
Thanks so much for your post - it really summed up how I felt - but not how I feel now. Maybe I'm deluding myself , I'm certainly not denying I've had cancer and I have only one breast afterall to remind me - but 18 months post diagnosis,( 2 operations, chemo and rads) I really do feel like myself again- more attentive to everything like friends and fitness, but gradually getting myself back to the confident person I was ...no sure I'm not as carefreee, but not careworn either ....
best to everyone,
sheil-my mum is 79 and has dementia-as did her dad-i know what you mean about hoping to be around that long-long live us all !! stella x
So so true, all the things said so far here are what we all probably feel. Cancer is something that happens to other people, not me, not us.
One of my favourite sayings was 'when I grow old I will wear purple'. It had that certainty that I would grow old - and wear purple.
Dementia was my fate, late onset - about 80ish - that's what runs in my family, and is what I worried about. Now its my goal!!
I now realise I loved the person I was before diagnosis. Not perfect, not terribly successful in the big scheme of things - no kids was my biggest issue I guess, but untouched by tragedy and probably a bit smug. But one thing this has made me realise - I'm the 'other people'. I no longer have that detached position from people whose lives are touched by tragedy.
Would love to go back a year and to all those petty concerns.
when i walk along i've got my usual bounce and i'm still smiley and upbeat-but it's false-inside i'm scared the real me has gone forever-even piggin coronation st which i don't watch but as i'm off work have caught it a couple of times-some blokes having radiotherapy !!!then the adverts come on !!!-so i read my book-it's a murder-one of the characters is only dying of bc-arrrgggghhhh-i can't escape.so i'm back on here-with people who understand ! the old me may be gone-but i'm going to make the best of the new me-the healthy eating-exercising-hardly drinking any alcohol me-x
I am also 41 and was diagnosed November 2010. I think you have explained exactly how we feel and I have felt all of what you are going through.
I am "moving on" in my life going back to work etc but I still find it hard to digest the "trauma" my body and mind has gone through since dx, it has definitely changed me as a person. Before dx I was a very confident and outgoing person but now I am totally different but hopefully that will change as time goes by.
sending love to everyone
CM,yup. And every bag I get from the chemists, and every shop with their BC Awareness fundraising, and emails from well meaning friends about breast cancer further fundraising efforts etc. Sometimes I want to talk, but right now I want to have a day...just one day...where I can be me and not BC.
Barb, you have expressed yourself, and us, so clearly.
I think it's the loss of innocence and ignorance that we mourn. And those bloody Macmillan ads all over the telly really don't help, do they!
Yup, can relate to so much of this. In the quiet 'eye of the hurricane' bit between chemo and surgery/rads, and although I was quite cheerful through most of chemo, all the bounce has gone out of my bungee rope at the moment (to use a phrase). Trouble is, it's lost me a friend because I ranted at them, and they didn't understand. And somehow people expect me to just carry on as I was before and somehow life is so very different now.
I think when we spend months staring down the 'gun barrel' of cancer, we end up a lot....wiser/more sober about life (neither of those is the right word but I can't think what is...)
I am 41 also and was diagnosed October 2010 so am a bit further down the line, but not much! I think you have explained very eloquently what a lot of us feel and I have definitely felt all of what you are going through.
AS it comes to the year anniversary of my diagnosis, I am feeling much more positive - treatment now finished (apart from tamoxifen and a bit more cosmetic surgery), my wig gone and I'm back to work full time, I really feel that I'm coming out the other end. I am desperately trying to accept that this has happened to me and BC will be a part of my life story and to get through all this I must be an exceptionally strong person - this is my mantra!
I'm off to see a CBT counsellor tomorrow (although I needed this counselling months ago as I was really struggling at coming to terms with BC) and I'm not sure if I still need to, but she might be able to give me some more tips on moving forward.
I wish you all the very best. Be kind to yourself, you may not get your old self back fully, but maybe a reconditioned version with a different outlook on life - I know this is the case for me.
Me too! I'm nearly one yr on from dx, I didn't have chemo, but as soon as I heard the words 'i'm sorry, its bc' at 37 I felt like a statistic, as someone else has said, time does make it a little easier, but there are times when I wish I could just go back to how I was 😞
Take care x
I think your words will touch a lot of people thinking the same as you, I know I'm one of them, hugs to you xx
You have summed up exactly how I feel & brought tears to my eyes. I miss the old me so much it hurts sometimes ......
I also get absolutely what you mean. I was diagnosed with secondary bc at the same time as primary bc. I had so many dreams - a lot of them I fulfilled, albeit rather sooner that I thought through necessity, some I will never have a chance to fulfill. However, I'm glad the person I was pre-diagnosis in 2006 didn't have any inkling of what was to come. I miss that innocence and ignorance I had back then. The future seemed to last forever - now it's month to month or week to week. You do become used to the different 'you'.
That how i feel. I look back on how i used to be and it makes me sad to. xx Had my work, my daughters, grandchilders and my pet dog love it.
I was always in good health and i remember thinking when i get old thats when i will get all the illness lol* no i was to be the one in 7. It had changed me to. But i going to fight and love life.
omg i know exactly how you feel. I wish i could have that naiive innocent person back, the one that could make plans for the future, assume she was going to see her kids grow up and get married. Im envious of other people when i hear them talking about their future...cause in the back of my mind i worry if i actually have one?! I have felt alot better in the last month since I have started since a life coach who actually had breast cancer herself and who knows exactly how i feel. perhaps its worth looking for extra help to help with your feelings. please feel free to pm me for more information. You are definately not on your own with your feelings!!!
Firstly let me say how very well you're expressing yourself, or is it just that i can relate to it so well i could have written it! Its certainly "a game changer" isn't it. I felt so sad to read what you're describing, it was like holding up a mirror.
I'm a wee bit further down the line, dx Jan 10, all i can say to you, in total honesty is - I'm not mourning it quite as much as i was. I hope it continues to fade. Somebody asked me today if i was "all clear" - i gave the usual response "its not quite as easy as that with BC etc etc and when i returned to my seat i found myself looking at the other 30 folk in the room, thinking I've lost so much of who i was and none of you know it. - but again i'll say it - it passed and wasn't quite the "ouch!" it would have been 6 months ago.
I hope you can take even a wee bit of comfort from what i'm saying but i do honestly "get it"
I wonder whether anyone else feels this. I am 41 and was diagnosed in Feb 2011 and have done chemo and surgery and are waiting for rads. I also found out I am BRCA2+. While busy with treatment I didn't have much time to reflect but in this pause some new feelings have surfaced. I am fine when I think about myself now, treatment is hard but life goes on and now that the most painful and unpleasant things are over I feel really quite happy in my little life.
I get very very sad, however, when I think about myself before the diagnosis. I had my work and my kids and my husband and ... I lived thinking that I would be an average person falling ill at some point in my 60s or 70s and then live for a while longer with an illness before giving up the ghost.
I now feel that that person has gone and she will never come back. I will now live the rest of my life as a person who's had cancer at 41. Nobody knows how long my life will be, but in any case I am now a very different person to the one I was, simply because even if the cancer has gone (best case scenario), the fact that I've had it has changed me.
I feel so sorry for that person I was, for what she didn't know was coming, for her innocence, for her hopes, for how hard she worked to build the life she wanted, not knowing that a very powerful force was going to arrive and turn everything upside down.
I am not sure I am expressing myself well ... perhaps if some of you have had the same feeling, perhaps we can help each other to articulate how we feel.