I was wondering what everyone does/think differently since being diagnosed. Also for the ladies that have been ok for years, do you still do things differently or not.
I am less passionate about stuff, sometimes when talking to someone i would be full of lighthearted passion but now i feel abit distant if that makes sence.
Also i used to save ‘everything’ for best, perfume crockery etc etc but now i use it everyday and feel that i want to get the most use out of everything.
I am still a happy go lucky, bubbly person but feel very different.
Two years after DX.
Hi Pineapple,
Can’t really put my finger on it but 17 months on from diagnosis, grade 2, 9/12 positive nodes and not great prognosis, life (in my head) just can’t get back to normal.
It’s like I’m waiting for something to happen. I’m screaming quietly at myself to enjoy the present but I just don’t seem to be able to get the threat of secondaries and what might be round the corner, out of my mind.
I’m hoping this will pass, I want to get back to “normal” but the side effects of arimidex are causing me big problems and a constant reminder of bc. I know that if I go on to develop mets I will look back on this time and wonder why I wasted it but I can’t help how I feel.
Claire x
Hi Pineapple, well i just live in this surreal life, all i want to do most of the time is to be on my own, i push people away, can’t help it, i am not the person i once was, i used to be happy, now, well, not sure what you’d call it, should i be grateful that i’m still alive? not so sure to be honest, think i need to ask for anti=depressents, the sleeping pills certainly don’t work, yet if it happened on the other side i’d just have the same done again, until now, well, i never knew what being down was, as for the dear ladies on here who have mets and secondaries, god, how do they cope? but i suppose we can all put a face on when we have to, i am so sick of being “positive” for the sake of other people, ok, so i wallow in self pity and grief, but thats how i feel, only people on here will understand that. sorry, not much help tonight
lots of love
Alisonxxxxx
Im the same as Claire, Im waiting to, im almost convinced that its going to come back, I feel lucky as im having Herceptin and Tamoxifen but when i got dx last august and during my treatment i just pushed it out of my head about how serious BC is but i just gritted my teeth throughout the chemo and stayed happy, probably because i eat comfort foods and stopped the crazy diets and after my op and i got the results that the lymph nodes were clear then thats when it hit me hardest and thats when the worrying started. Ive since lost 3 stone, i exercise whenever i get chance and lead a healthy kind of lifestyle because im thinking that maybe its my yo-yo dieting that caused the cancer which by the way drives me crazy not knowing what actually caused BC. So here’s a new me but deep down i really know that if its going to come back its going to come back despite having a sore backside from cycling to much!!
love to all
Tracey
xx
Nearly four years out from diagnosis, I would say that things do get better, but they don’t get back to where they were before. For a long time things reminded me of a line in Bruce Springsteen’s Dancing in the Dark: ‘can’t start a fire, worrying about your little world falling apart.’ It’s hard to really plan for the future when the future is truly uncertain and perhaps bleak. I hedged all my bets just in case it came back, so when we bought a bigger house one of my motivations was that we have space in case someone needed to move in to nurse me, not that I told my husband that (he just wanted a bigger house). I had a very aggressive type that I was told would come back sooner rather than later and a nurse unfortunately let it slip that I was unlikely to see my one-year old start school, so it weighed heavy on my mind. He started school over a week ago, by the way.
I didn’t think the cancer all the time, but did a difficult balancing act, trying to make things o.k. whether I made it or not. I feel that I have become much more efficient, but also much less tolerant of timewasters. I despair of my husband’s TV viewing habits. I am much more aware of the vicissitudes of fortune, which make me different from my friends. I never put things off if I want to do them because there is always the chance that I might not get to do them. I am alot less likely to wallow in self-pity than I was before, simply because I have seen so many bad things happen to really good people.
Think i need to find a new me!!!
Alison,
you might well do when youve had a holiday!
xx
I was dx in jan 04 with grade 3, no node involvement, lumpectomy, chemo, rads, now tamoxifen.
I used to worry about money alot, i still worry as we have financial problems, but before breast cancer i would of been in a right panic about it,
I’m definetly less tolerant of people, as i found this disease certainly shows who your true friends are,
I remember when i was diagnosed asking ‘‘how am i going to cope with this,…how do people cope’’…i was told ‘‘something kicks in like an overdrive,…and as time goes on breast cancer won’t be the first thing you think of when you wake up’’…well, there are days now when its not the first thing i think of…but at some time during the day i will think of it.
I’m certainly not the person i was before breast cancer, anti-depressants and diazepam get me through the day, sleeping tablets help me to sleep.
I feel like i live with a cloud over me.
ChristineMH…i bet your son starting school was an emotional day…my grandaughter was 5mths old when i was dx and i went to see her off at her first day at school 2wks ago…a very emotional, but happy day.
karen x
Glad you asked as even trying to put something “on paper” could maybe help.
I am not yet finished my Rads, but its all dawning on me that I have the big C. After treatment - do we still have it ? Consultant wont give me a prgnosis. Tumour 8 cm (responded to chemo by shrinking to 2,2) but 7/7 nodes positive. So looking things up myself just worries me more.
I go through the motions for my family and friends but feel like I am on the outside watching.
Feel I will be able to get on with life, have to for my kids and OH and Mum and Dad, but I`ll only ever be part of the person I was or couldve been. Some days thats enough and other days it isnt.
What did I do with my time when I didnt have BC to cope with and think about ?
My boy is 3 so school next year. Will be at the gates with little girl to wave him off.
Jane
xx
I am nearly 1 year from dx (October last year) and 5 weeks before my dx we had just started a small business. My diagnosis was a total shock as I had been told I had a benign fibroid and merely needed day surgery to remove this after which everything would be fine. I was told I had BC at the follow up appointment the next week, it had been underneath the fibroid so therefore not picked up by any of the biopsies or tests. I underwent another surgery 3 weeks later to clear my underarm and it was in 1 out of 22 nodes; I am also HER2+, so there was a lot to take in. I was OK until I went on Taxotere back in April, then I had 3 months of being ill culminating in a week in hospital with no immune system and a huge chemo burn to my hand. I’m now on Herceptin until April.
I now feel well and ready to slot myself back into the things I have had to put on hold. I’m planning a few courses starting in October and have started tentatively marketing our business. I really feel I have been given a second chance and I am ready for new challenges (I mean, what could be more challenging than chemo?) I had lost a lot of my confidence when this happened to me as I had moved back to Scotland after 20 successful years in London and thing had not worked out the way I had intended here as I had to become my late father’s fill time carer. I have found my confidence has returned.
When I was first diagnosed I made my end up to get rid of fair weather friends who I felt were a bit toxic (2 in particular were hypochondriacs). I did not want to be dragged down by others and what I saw as their very petty problems. This was the best thing I could have done as it allowed me to concentrate on recovery and the future, which I hope will be bright.
Hi all
I was diagnosed in July 2006. I had a mastectomy and immediate reconstruction, chemo and rads. I went back to work in July 2007 and am now back working full time. I feel I am mostly the same person I was except for:
1.Love my job but I don’t put up with petty stuff at work – just say exactly what I think at the time. Doesn’t always go down well. But tough!
2. I also don’t save anything for best any longer – can’t see my son wanting to inherit my best china somehow.
3. Have become a bit more of an impulse buyer – if I see something and like it, before I would have thought about it but now I just go ahead. I don’t mean wildly expensive things.
4. I don’t worry if the housework doesn’t get done. Anyone who notices the dust is welcome to help themselves to a duster and a tin of polish if it bothers them that much. I do enough to make the place presentable. Hubby lends a hand as well.
5. I find myself screaming silently inside at breast cancer and other cancers and for what it does to people.
6. I could scream out loud when I read about a shortage of funding for all kinds of illnesses and then read about the money wasted on the huge salaries and people spending millions of pounds on bricks and mortar and so called art and various other things.
I have never felt bitter because it happened to me; I have tried to look on it as something to be overcome if possible. My husband and son have been absolutely brilliant since the day I was diagnosed and I will always be grateful to them for the fantastic support.
I am off to Dublin on Wednesday for three days – an impulse buy whilst enjoying what could be described as a boozy lunch with a friend ( both of our husbands play golf) so really looking forward to that.
I have got this far with a lot of prayer and faith and feel that has helped me and hope it will continue to do so.
Love to all and take care
Thistle
Thistle
I take my hat off to you and your attitude. I am part way through my treatment but I am taking the same view as you. My take on life changed when my mum was dx with ovarian cancer at 51 and died at 54. Being dx with bc at 48 has doubly reinforced my “live for today and if they dont like it they can do the other” attitude.
All the best
Sharon x
I agree with all that has been said. I am a year on now from initial diagnosis and chemo,surgery and radiotherapy that followed. Sometimes I feel lost ad so alone despite all the support I have had. I want to be me again and don’t feel like me - tired, bones ache (on armidex), am back at work and get so, so irritated at people who come and moan at me about very little - only irritated inside though - maybe should shout at them but don’t think in my management role it would look good!!! I too feel distant and removed from all that is going on around me,colleagues talking abot Christmas night out and I really can’t be bothered to join in. What a moan,I do still go out to things but feel I am forcing myself to do them to try and be normal whatever that is- will I ever be normal again -who knows
Hello everyone
Just wanted to add some positive notes to encourage all. I have had BC twice once in 2000 and then in 2005, same breast ended up having mastectomy and recon. Inbetween 2000 and 2005 I went through psychotherapy and periods on anti depressants as all of you have mentioned above. The paranoia nearly sent me mad but I got through it and having had it twice now I think that if it came back again there are still treatments available to me so no reason why I shouldnt overcome it again. Its taken 7 years and I still log on to here every now and then when I need to feel the ‘kinship’.
Anyway I have just returned from a five month trip to europe with my hubby in a motorhome and it was great. I met other women who had also experienced cancer. I guess I am trying to say that life may never be the same again but that does not mean to say that you wont be able to have fun again or laugh again or travel and see things that are amazing.
Big hugs to all of you who are in treatment or are struggling with resuming your life.
Ginger, thank you for that, i know i am only new to this, but i really do not like the way i have felt the right to such self pity, i know i have to grieve what has gone, and get on with living, am off to drive through france into spain for two weeks and a bit with the oh, i can’t wait, i want to just chill, relax, eat and drink well, and enjoy my life and i am determined that i will, but i know i will have this feeling that comes over me, but at least the hubby now knows if i go off on my own, even if its just in my head, well, its not because of him, and its so important to tell the ones we love that its the illness that makes us angry or sad, not them. xxxxxxxxxx
lots of love
Alisonxxxxxxxx
Haven’t been on for a while…goodness, all of what has been said is so in my head and life. I have felt and still all the things that have been mentioned, dx Jan 2006 but still have ‘that feeling’ now and again that Alison describes. I guess it’s a case of getting used to that feeling and like you say Alison making sure that our partners and families know that it is not them but the illness that has made us feel that way. I know every morning and night the feeling of loss is just as it was in the beginning but I have got used to feeling that way and now most mornings and most eveinings I just get on with next part of my day [or night] and try not to dwell. When I have tried not to have ‘the feeling’ it somehow makes it worse!! Maybe it’s just about acceptance? Alison, have a wonderful break and when you get the feeling remember that you’re not alone…we all know exactly how you feel. Wish I could get away this year, oh well…
Scarlet ((((“”*hugs*“”"))))
I think the worst thing for me as reagrds to being reminded ( i didnt have mastectomy) is my flippin’bald head. Being permantly bald at 47, now 49, is the pits. Everytime someone comes to the door or my kids bring their friends in everyones paranoid " Has mum got her scarf on", i have put loads of weight on, 14 kilos in a year and look really terrible. I know the kids and hubby are embarrased by my looks and i have started running but nothing is happening yet.
Hi Pineapple
Are you the one living in France ? Hows that ? Must be hard with all the lovely food and wine
I havent got back any kind of figure and am heading for that barrel look - at 38 ! I dont drink, I eat rivita (theres a blast from the past) and celery but am still thickening round the middle. You are brave to go running, I am waiting til get prothesis sorted so can go swimming. But my hair is growing back. What happened to make yours permanent - is there any chance it will come back ?
They have told me the taxatere did something and that it will never grow back - dont think i will ever get used to that!
When i moaned about my weight at last appointment she said the only thing was excercise and more excercise so aiming to get up to 5 km in 10 weeks - just started week 4, so far so good but its really hard. Got to do something. She also said in another year they will test my blood for hormones and if i have finished the meno they will put me on something different to tamoxifen.
This will make you laugh - me and hubb hate wine!!! we must be the only brits here that dont like it. But the cheese is yummy- trying to cut back.
I have tried to come off my sleeping pills but after 2 months and still sleeping just as bad as before have gone back on them. Hubby says i am addicted to percripted drugs but who cares -i dont and if i sleep well i dont give a monkeys.
My eyebrows are hardly there either and nopt that many eyelashes - i feel soooooo ugly and i know everyone else thinks ‘she used to be a looker till she got cancer now look at the state of her’.I know damn well the kids (21 and 19) are embarrassed by me and poor hubby, have no sex drive at all now and cant seem to snap out of it. I asked onc if i will ever want sex again and she said it will come back - BUT WHEN, after one and half years its getting beyond a joke.
Ooooopps i think i have talked myself into depression now
Thanks for all your posts - it’s so good to feel I’m not alone.
What surprises me is that I thought having BC and treatment would change me for the better - that I’d become more patient and accepting, learn to ‘go with the flow’ and take each day at a time, and be thankful fo the little things. (Been having chemo since April and won’t be finished til Christmas due to lots of hiccups. Been spending most of my time in hosp waiting rroms and being messed around by beaurocracy and people’s mistakes… don’t get me started!).
Sadly it’s only reinforced what I already knew -that I’m a total control freak, get myself stressed out about minor details and that i’m no good at doing nothing and just taking it easy, even when I need to rest. I’m quite frustrated with myself. Where’s the calm serenity?
I do try to be thankful, and really do ‘enjoy the moment’ when e.g. walking my daughter to school, looking at the kids in bed asleep, spending good times with friends.
As for depression, sleeping tablets, comfort eating - hey girls just don’t worry, they are all perfectly natural reactions to a life-threatening and uncertain ongoing situation. Why do we care what other people think - they have no idea what it’s like from the inside? And why are we so hard on ourselves?
Big hugs to all
Jacquie