I had primary, mastectomy & lymph clearance, chemo & rads then tamoxifen (no reconstruction) in 2002-2003, Walked the Walk May 2003 at endof treatment and went back to work in the August, gradually. It took a long time to get my energy back - I would say really, a year to get it back fully, during which time I was thinking hard about what I was doing. The summer of 2004 I would say I had a lot of days when I didn't think about it at all - getting into new career. I think I was stir crazy that summer, very active, I had to get away many weekends because I felt I'd been in the jug. But still the odd day, inevitably, when it came to mind. And in the run up to a consultation & bloods I would think about it a bit more, and hope. Oddly enough, I even got used to the puddock (see above post) and often didn't think twice about it - apart from with sex when I have felt inadequate although my DP is very positive about my body (bless 'im) . And stick-on puddock's (I call 'em chicken fillets) are interesting...
My husband couldn't cope with the change in body, the mood swings, the whole scenario - and we parted a year after the treatment finished.
Moved to a different part of the country with new career, hoping it wouldn't come back. Was just psyching myself up to have a reconstruction, when a dodgy scan result for something else this spring led to secondary dx in May this year, obviously, think about it nearly every day now, and have been fairly disturbed. But still there are odd days now I am established on letrozole, when I think I don't think about it, primarily days when I get out into nature or really stuck into painting or carving.
I had a lot of help from the Fountain centre attached to St Luke's Guildford - it was fabulous - counselling and all sorts of alternative therapies to ease the journey. I think this, including art therapy and music therapy, enabled to free me up from a lot of negative thinking, enabling the career change long term and I am endlessly grateful to the wonderful staff there for helping me in this way and opening up my imagination, helping me to be positive for almost 1st time in life. & one thing cancer has done for me is liberate me from offices :-)))) though I'm a lot poorer cashwise.
Lyn I like your selective denial and red wine (was my surgeon's recommendation, Chilean Merlot...!) I'd add ... fantastic friends
What a flippin tome. Well, the journey's been long - but I'd say a lot of it I've not thought about it much, which is the great boon/blessing of the fantastic treatments that are available to us. My grandmother wasn't so lucky in 1928, and died when she was in her twenties leaving two small boys.
For what it's worth, the incessant nag in the brain does start to drift away after a while - for those of us who fall on the good side of the statistics, and finish treatment and don't experience a recurrence or mets. I was diagnosed first time round in 1991, and it took several years before it wasn't one of the things that I factored into almost every decision I made - and I don't have kids.
I did have a pretty active career and that changed considerably. Gradually, I found that although I was helping with a cancer information centre and other bc related things, it wasn't as personal as it had been, and even more gradually, I moved away from having an involvement with cancer - my experiences seemed too long ago to be helpful to anyone having a diagnosis now.
I was narked to say the least when I found myself with a second primary in December last year - back into the tumble drier. This time round, I had to have a mastectomy, so yes, once again, I do think about it every day - partly the puddock (prosthesis to the non-Scots) but because I'm back in the uncertain bit of the statistics (except that now I know I seem to be good at doing bc). I opted out of chemo, so I haven't had to deal with the aftermath of that, and I just hang on to having got through it last time with a judicious mixture of information seeking, selective denial and red wine. My personal coping method, not recommended to all and sundry.
You've basically said what my fears are. I too have 3 young children, 8,5,& 2 and the fear for them is huge. I also feel guilty that i have put them at risk as i have girls. I never want to leave them nor do i ever want to let them see my fears, not until they are able to fend for themselves.
Yes i want to live and move on but i didn't realise how deep and dark fear is - no for my life but for theres.
Firstly. I'd like to say everyone's response to this disease is so individual, there is no right or wrong reaction to it and secondly, I think it also depends on your experience of it from friends, family etc.
(My sister was dx when I was 28 (I'm now 45) so I have had long term experience first and secondhand).
I am reminded of my treatment every day when I see the scars and putting on Cissy and Ada (my prostheses) and I suspect that will never change.
I am at the phase where I think 'this time last year I was having chemo' or something along those lines as I was dx Sept 07.
I don't want to become someone who is thought of only in relation to BC as there is more to life than that so as I am getting further away from treatment, I trying to consciously progress on with life. Right now, my thoughts are occupied with getting married in a few weeks so the focus has changed for me.
I feel very lucky to have got to today and am grateful for what I've got, every day I wake up is a good one.
As the dx was not a major shock for me, this has perhaps helped come through the otherside and feel the way I do but I truly accept that others may not be so able to do so.
My heart goes out to all who are touched by cancer and we need to be kind to ourselves.
Your comments struck a nerve with me too. I was DX March 2007 . I was fortunate in that I only had a WLE but I still find it hard to move on. I come on here every day, just for a few minuits. I still have my cancer file on the kitchen worktop and am kind of supersticious about putting it it away - just in case....
In some respects I have moved on - new job (p/t) new clothes (i'm fatter now!) . but it's always there isn't it and the thought of secondaries - think you just have to kind of find a new equilibirium and way of living with it.
Jane - usually I agree with most of the things you say - I truly admire you and follow your blog religiously, but sorry, I really cannot agree nor understand your comment that you think it is a competition to see who can live 'best' with breast cancer etc. - what does this mean exactly.
A lot of the women using this site have young children - my daughter is only 4 years old. I think about BC nearly every day NOT OUT OF PITY FOR MYSELF, but because I really don't want my daughter to grow up without a mother. If I died and didn't have a child - then of course it would be sad, but not as sad as leaving a young child at such an impressionable age without a parent. I want to be here to guide her, support her, but most of all to LOVE her. I would love to see her grow into a confident, independent adult and know that I have helped her towards that path. For me, from the moment my daughter was handed to be me by the midwife, my heart filled with so much love and my priorities changed - it wasn't about me any more, but about this small bundle who looked so vulnerable and needed me so much.
When I think about BC now - I curl up like a wounded animal that this horrible, horrible disease might take me away from my beautiful daughter and I will not be there to shield /support her from the harsh realities of life.
I can't have any more children because of a chemo induced menopause and have to change the subject when my daughter asks me why she hasn't got a brother or sister when most of the other children in her class have a sibling - another thing BC has taken away from me. I know it could be worse and I could have already been diagnosed with mets - I am just trying to live my life as best I can and know there could be that knock on the door "so to speak" to say that my cancer has spread - the ladies who have mets are never far from my thoughts as I know it is a club I might join one day.
Surely having or having had breast cancer is a fact which gets integrated into our lives along with everything else important which happens. I have thought about breast cancer every day of my life since diagnosis in October 2003. There's lots of other things I've thought about every day too!
Sometimes I think there's a competition to see who can live 'best' with breast cancer, who can 'get over' it best who can get on with 'normal life' best..who can 'move on' best..oh its all so so exhausting...such pressure to be goodcancersurvivor.
I too like you was dx dec 07, lumpectomy, chemo and rads and finished all treatment in october 08. I too think about it every day. There are so many reminders of it - everytime you pick up a magazine, everytime you listen to the news if its not BC is another cancer that triggers the thoughts off. As some of the others say during treatment you are so focused on getting through it all you don't think to far ahead. The time to think about the future is now and its so frightening. christams for me is also a terrible reminder. I have threw out all my old decorations as last christmas was pants and i want to start anew. I go to the shops and hesitate on buying new tops as they won't look good because of BC. i wake up in the morning and have a shower look at my boob and the reminder is constantly there. I want to put it to the b ack of my mind and its so hard to forget.
I have started having these imaginary converasations in my head for example i could be listening to the radio and a sad song comes on................. i then start planning what song i want at my funeral. i should be happy because i am now over treatment but learning to live again without fear is so hard.
i'm sorry for going on and on but i too feel like you ladies about the whole damn BC
Hi..I've been living with secondaries for 5 years, I'm very lucky in that so far I've had some good responses to treatments and have kept my hair. Yes I think of bc when I have to take my Xeloda tablets and when I have a hospital appointment but inbetween I try, don't always succeed, to put bc on the back burner. It would be hard, absolutely impossible to do this I'm sure if I was in pain or my treatments stopped working. But while I'm feeling well I'm not going to let my diagnosis take over my life..I'll deal with things getting worse when and only when they happen not before.
Take Care All..x
I am 3 years post diagnosis after lumpectomy, chemo and rads. Just had 3 year mammogram which was OK.
I Still think about BC EVERY day but it is slightly better than it used to be.
I agree with Horace - if I start to forget it a bit I feel like I am being cocky and it will come back and get me.!!
I dont think life will ever truly be the same again as I live in a state of fear.
LOve to all
Thank you so much for all your replies (some of which brought tears to my eyes). There are so many wonderful ladies using this site - sometimes it is good to know that I am not alone and sometimes it is hard to know that so many other beautiful women are having to go through the same thing as me - I really wouldn't wish this horrible, horrible disease on anyone.
I know I can always come on this site and get the support I need from people who know exactly what I am going through. I can feel the love in your posts shining through and it really gives me the strength to carry one. Best wishes to one and all. xx
I think you're absolutely right, Jules. You focus on the treatments while they're happening, and that's what gets you through. Was also diagnosed in Jan and it's been a year of...oh you know, shock, grief, consternation, hope, moments of illumination, dealing with tedious and uncomfortable treatments, determination etc etc.
What a rollercoaster.
About to finish rads next week and then...that's it. Spat out back into the 'real' world. But I won't ever be the same, and why should I be? Last consultant I spoke to, about a month ago, said "one day you'll wake up and you'll feel yourself again, and that might be next month, or next year".
So there's dealing with the diagnosis, there's coping with the disease, there's dealing with the treatment, and there's dealing with the side-effects of the treatment. And the side-effects of the side-effects!
It's a bit like taking a sheet of paper which has your life written on it, tearing it into pieces, throwing it into the air, and seeing where it lands. I'm not sure yet where the pieces have landed.
But one day, it may be soon, it may be a while, I'll wake up and feel like me again. And at that point I'll stop being dominated by bc, and stop thinking about it.
Good luck, all.
I was diagnosed in January this year and have just finished treatment WLE X 2, axillary clearance, chemo, rads and Tamoxifen. I had a 4.5cm tumour and 8/18 nodes - I was devasted by the node involvement and still worry about it constantly. I seem to be thinking about it more since treatment finished than when in the middle of all treatments (I think you focus on the treatments whilst you are undergoing them) and am plagued by the thoughts of recurrence, worrying about every ache and pain. I have aching legs and an aching hip (which I had before being diagnosed and had a clear bone scan in March). I feel very well generally albeit I tire more easily than previously. The hair is coming back, I have ditched the wigs, eyebrows and lashes growing nicely and the Taxol tingles diminishing, tastebuds back to normal etc. If only I could take the mind back to pre breast cancer I would be sorted!!
Hi evreryone,I was diagnosed in November 07 and felt shocked just a few days after my one year anniversary when the doctor said I needed a biopsy,thank goodness it was only an infection in the wound and now is fine.I felt anxious after finishing treatment as I didn't know what came next,going through treatment is in some way reassuring as you know you are doing everything possible to be cured.I still think about it every day too ,but I also find I don't put off doing things I want to do now,I just go ahead and enjoy myself (or try to )
Like you I was diagnosed in Dec 2007 and I sure will be glad to see an end to this year! I was lucky enough only to have a lumpectomy not mastectomy, followed by chemo and rads.
I still think about it every day too. I have just gotten rid of the wig and am having the weird experience of bumping into people who didnt know and are puzzled about my cropped hair! In some ways it still seems unreal to say "I had breast cancer".,
The downside for me is certainly the worry of mets, every pain and ache takes on a new meaning. I am hoping that after a few months of a variety of aches I will recognise them and then not worry so much! On a plus side, I am conscious of making lots of happy memories for my daughter (16) 'just in case' and I worry less about money than I used to!! Another plus is the kindness and love that my friends and family have shown me and continue to do so.
We will be fine!!
I finished treatment in May 2007 and not a day passes without bc entering my mind at some point.If I feel relaxed and happy for a while a switch in my brain says,'DONT TEMPT FATE'.Its as though remembering is almost keeping it on a leash;which I know is nonsense.Vx
I finished 10 months of treatment at the end of January... and like you, I'd hoped I could put it out of my mind. Initially it was very much in the forefront of my mind every single day, and was often the first thing I thought about when I woke up and a frequent thought during the day. I longed for a day when I didn't think about it all. Now ten months on, I still do think of bc every day at some point, but maybe just remembering what it was like without hair, or recalling the state of my feet a year ago, or whatever. I sometimes remind myself of what I was doing a year ago (I finished chemo a year ago last Friday) and think how far I've come, so that seems a positive way of moving on. I have a friend going through the same journey a year behind me, and it's actually been good to be able to support her through this, as I didn't really have anyone with first-hand experience to turn to... Yes, there's always the "what ifs" hanging over you, but each hospital check-up with the all clear from the doctor helps... 6-month check-up with the oncologist this Wednesday, so looking foward to Thursday!!
It does get better slowly... Keep smiling!
Hello, I thought I would never stop thinking about Breast Cancer as it is in your thoughts every day initially. But having been diagnosed in January 07 and spent most of 07 being treated and also some of 08 with Herceptin. Having turned the year into 2008 I felt I had turned a corner and that 2008 was a new year and a new (if different) life. I dont think about BC very much at all now. I am still breast aware but no more so than anyone else should be. Hopefully you will begin to be able to think of other things and get the most out of your life soon. Be also aware that depression can affect your thoughts into thinking negative thoughs and if you think you may have some dpression (it is very common in Cancer survivors) think about getting some help for that.
But to answer you question, yes you really can get to the point when you dont think about BC every day.
Very best regards Joanna
I was dx Nov 07 and had Mastectomy Dec 07-no further treatment but had reconstruction in July. I too think about it everyday. I try hard to be thankful that I am still alive and enjoying my life. Breast cancer robbed me of my breast for 7 months (and I cried every single day of those 7 months) but I am determined that it won't rob me of living my life to the full and getting the most out of each day. I know I am lucky that I didn't need chemo and am more than aware of the devastating affect this has on your lives.
Good luck to you all
Love Gill x
I finished chemo in June 2007, Herceptin in May of this year. I've learned how to push BC into the background a bit, but I have to use a lot of diversionary tactics. I had 6 sessions of counselling which helped me cope a lot better and have come to the conclusion that I have to live my life from the point of view that I don't have cancer at this particular moment in my life. Whilst I am always mindful that this could possibly come back at some point, I don't feel I could live my life as if I was just waiting for it to happen. I think we have to try to live in the day if that's possible. I also remind myself that other diseases and conditions can kill - I had a friend who died from the brain condition that the the late Dudley Moore had a few years ago; also another friend had manic depression and he hanged himself.
I finished treatment Dec 2007. Chemox6 Mastectomy and 15 rads.It is very difficult not to think about bc when you are missing a breast. Saying that I don't miss my breast it seems normal now but I still get very tired, my feet feel funny sometimes other times B***** painful. My taste still is weird I find that hot food is'nt very tasty , Some days I wonder if I will ever feel really well and other days I can do so much. I am lucky that my husband works away from Monday to Friday so if I am feeling lousy I can have a duvet day and not put anyone out. I never realised just how much the treatment would affect my body(chemo and rads) but one day I hope I will realise that the bad days are only once in a blue moon. I do get the odd day when I wonder how long I will survive as I always thought I would live as long as my Mum who is now 94)I am sure we all get to the point where it goes right to the back of the mind and only creeps out very very occassionally.Good Luck and hugs to allxx
I'm 5yrs post dx next month and the only time I dont think of bc sometime during the day is when I'm nowhere near anyone or anything that reminds me of it.My breast is misshapen and scarred and my underarm is still numb,I've got periperal neuraphy in my toes from the chemo but funnily enough these things do not remind me of the bc,they are all part of me now! It's the emotional things - someone mentioning the hospital,seeing relatives of friends who havent made it,going places I went to when I was on chemo.Having bc was an enormous part of my life for 12mths. I cant cut it out of my life and the memories wont go away.But it doesnt frighten me anymore and I no longer feel the victim.
Good that you have finished all your treatments but you are right about not being able to forget while your body is still suffering the effects of all you have been through.
I initially thought i would never have a day when i didn't think about BC but i have found over time that thoughts like that do diminish. I was diagnosed June 05 and had lumpectomy, chemo, mastectomy then rads which all took until May 06. I do still think about if it will come back but it is not the first thought on my mind when i wake up and sometimes i realise that i have not thought about BC at all for weeks. Sometimes i get pains though and of course i wonder if it is a symptom of something else, but at 49 i suppose i get aches and pains for all sorts of reasons!
So take heart, i think you will find that once your body has recovered (and your mind of course) you can fill your days and nights with other more pleasant thoughts. But give yourself time to process what you have been through and be kind to yourself.
Are you still doing exercises for your arm? Hope it improves quickly.
Best regards, LesleyNan
I finished all my treatment which consisted of (4x AC/4x Tax, mastectomy plus immediate recon with full axillary clearance and then 15 rads) at the end of Oct this year.
I was dx in Dec '07 with a grade 3, triple negative, 3.5cm IDC. I just wondered if you ever really reach a point where you haven't thought about BC on a daily basis. I thought (rather naively perhaps) that it might have been pushed back to the back of my mind somewhat by now, but this definitely isn't the case. I guess it is still really early days and I am still suffering the effects (physically and psychologically) of all the treatments. I still have a lot of aches and pains, suffer from extreme fatigue and my arm on the mast. side has loss of movement and feels like a lead weight most of the time. I guess it will be almost impossible not to think about BC when your body reminds you every day. I just wondered if there are some ladies who have moved on a lot further than I have and have recently finished their treatment. Best wishes to all.