Hi All
Please can I join in as well? Dx 20mm IDC in July following a routine mammogram so it was a huge shock. Had WLE and SNB which was clear then rads x15 which I finished mid October. I’ve been very lucky with my immediate family and friends, they have all been great. I’ve told as many people as I feel could cope and others I have left in the dark. The usual pleasantries of “how are you?” have been answered with “fine.”
I think a lot of people find it hard to know how to behave and what to say. My mum died of cancer years ago after being ill for only a short time. She already had secondaries from ? uterine cancer when she was diagnosed. She NEVER used the word cancer and NEVER spoke of dying. We all had to pretend she was going to get better. This was awful!!! but it was her way of coping. Because of this I insisted we were all open about how we felt. We’ve had tears, laughs and I can be selectively fragile, grumpy etc when I feel like it.
So, to stop rambling, yes I still feel a bit wobbly at times but I laid down the ground rules in the beginning so am ok.
Cheers to everyone wherever you are in the process
Margaret
Hi All
Chipper I too have not had to have chemo or rads after an MX in July 09, only treatment is Arimidex and I fully undewrstand what you mean about feeling a complete fraud.
I am also starting to feel a lot of anger and because I am back at work full time, it tends to be my poor OH who is bearing the brunt of it when I get home, which is not fair as he is also struggling to come to terms with everything.
I have never been one for counselling preferring to deal with my problems alone, but this appears to have beaten me.
Apologies to all for moaning, but ‘it’ certainly changes you and not always for the better. Still as others have said it is early days at the moment. Reading all your posts helps to get a little better perspective as well so thank you all.
Sorry Chipper for hogging your thread.
R x
thanks for all these posts- I think it’s clear that any brush with bc does change you and those who haven’t had the experience don’t really understand - but to be fair to them also why should they ? I knew so little about bc before this -all I knew was that it was a frightening thing. xx
Yes, chipper, it turns us all into experts, doesn’t it? I have learned most of it from the ladies on this site. Even though my Mum had it, I didn’t really ‘learn’ about it until I was affected. There’s nothing like first-hand experience!
Ann x
Chipper, please dont say you feel in any way fraudulent to have had BC!!! I understand exactly where youre coming from (I had WLE/SNB 2 weeks ago)as I was telling everyone I felt “lucky” to only be facing rads.Totally ironically my results yesterday are now pushing me rapidly toward mastectomy & chemo.Is this “real BC” !!!God how we do undermine ourselves.
Anyway sorry, that wasnt your thread which I’ve read with fascination.How true the comments are,the inability of people to stand alongside,the apparent egocentricity,the serious need to consider a “cull” & of course our own sensitivity.
I could ramble on at length about how unsupportive some people can be ( & in laws are top of my list too)but instead wanted to reflect on how you can find “hidden gems”.A newly found BC pal commented that post dx we seem to want to reach out to people, maybe create ourselves a circle of support.I;ve certainly experienced that need & its therefore even more hurtful when people “reject” you often due to their ignorance & embarassment.However,I’ve also found that people who were on the outer edges of my life,some colleagues I didnt know well, some friends I used to be close to, suddenly turn up trumps.Whether its the regular e mails,some flowers,lunch out, theyve gone beyond my expectations.
Whether these relationships will stand the test of time I dont know,but I do know they are bringing light into my existence now,& whats that thing about people for a reason or a season?
Sorry I’m probably rambling but I hope this makes sense to some of you out there.
Love Grace x
Ann and Grace -thanks too…what you say Grace is so true (and lots of luck for your treatment - will be thinking of you) It has often been people on the fringes who have turned up trumps, just small things like emailing to ask if they can help in any way (someone I know but not a close pal) and my mother in law’s next door neighbour who made me feel good by pointing out that nobody had asked how I was- that meant a lot to me ! I can understand my parents not wanting to talk too much about it as a) they are very stoical about things and b) that my younger brother died of cancer aged ten and my bcn pointed out that if they brush it aside or don’t think about it then they don;t have to think that anything bad might happen to me - which oddly enough I hadn’t considered. I really don’t want a fuss made, I hate that but sometimes just a word of acknowledgement that something quite important has happened means so much.
Last night a group of us went to visit a friend who has broken her leg. Everyone was making a fuss and offering help and saying what a hard time she is having. All I kept thinking was this time last year I was recovering from a mastectomy and I don’t remember all this fuss and offers of help! I feel awful for having these thoughts but I can’t help it.
I suppose it could be because her predicament is visible - we were all sitting staring at her leg in plaster. I suppose my scar was hidden under my clothes.
Thanks for letting me share that with you. I feel better now.
Love
Maude xx
Hi Chipper and everyone
When I came out of hospital after my op it was ‘Pink October’ and it seemed that the whole world was talking about BC.
There was a BC counsellor on one of the morning programmes on TV and she said that some people are unable to cope with friends/family having BC and almost turned their backs.
The interviewer commented that it must be very hurtful to have someone you consider to be close doing that. The counsellor said that the people who are unsupportive gradually drift away to the periphery of your circle of friends, and the friends who have been supportive become closer.
At the time I thought what an awful thing it would be to lose friends because of your illness.
I can certainly say that is what has happened to me. I have made no conscious decision about it, it’s just happened. Some longstanding friends who I’ve known for years and years, organised fund raising events with and whose children have grown up with mine have, in the early days of my BC, crossed the road rather than speak to me.
They are OK now 2 years on. I haven’t ‘fallen out’ with them or made any comment to them. They are still friends but not as close as they were. That has just happened.
I do have some wonderful friends who supported me through and I feel very lucky and blessed to have them. I really wouldn’t have got through without them.
As for people understanding, they don’t need to, we don’t ‘understand’ a lot of the time ourselves, as this forum proves.
In my experience it is the people who want us to ‘do it their way’ who are not there for us. The people who say ‘tell me what you need’ and support us to ‘do it our way’ are true gems.
Rattled on again. Sorry.
Love to all
Jan xx
Hi all, Jan that is similar to what has happened to me.My closest friends in terms of friendship but unfotunately not in close proximity have been fantastic but “friends” on the periphery have been the ones that I have been most suprised at. Lots put their heads down and scuttle past without saying a word,I know some people don’t know what to say like in a bereavement but I’m not blooming well dead or invisible,hmm and to my knowledge they havn’t discovered that cancer is “catching”.
I just think how shallow they are and they are not worth having as friends. I think having this has shown me that it can bring out the best and worst in some people,however for all the false friends that I had I think I have found a lot more true friends on this forum and that puts a smile on my face. Meeting up with a load of them this weekend and I can’t wait ! Whoop whoop.
Feel like I’m a member of a mad sisterhood and am sooooooooooo thankful for this forum we are certainly " doing it for ourselves" lol.
Sandra x
I think some people are embarrassed at their own ineptitude at dealing with the situation. Some are scared they will say the wrong thing, some think they will remind you about it (as if you aren’t thinking about it every minute of the day!) and some are just scared that it may happen to them and so they put blinkers on, as if to say that if they don’t acknowledge it, it won’t happen - just as the person crossing the road in front of your car, thinks that if they don’t look at you, it will be your fault if you hit them, not theirs for having walked out. As you say, it is a bit like the way people behave to the bereaved. It’s sad isn’t it? I wonder if it is a British ‘stiff upper lip’ thing, or if people are the same in other countries.
This definitely puts you in touch with your real self. We need to concentrate on ourselves, though, and not worry about what others think. If they react badly, it is not our fault. We can be bigger than them and just understand that people are all individuals and we really don’t know what is going on in their minds. They may hate themselves for being so inadequate. Some people may have had experiences that we don’t know about and this is dragging up old feelings they had buried long ago. Who knows?
Look after yourselves, everyone. It’s all of us that matter most at the present time.
Sorry for rambling on.
Love Ann x
I remember reading a similar thread this time last year when someone used the phrase “toxic friends” and that you were better off without them… i’ve certainly found out who my real friends are this year…
i had one memorable day on another forum when i mentioned how concerned i was for the future (i had to have chemo first before my mastectomy and this was about 2 weeks before the op…) i got a private message off a “friend” on that site that started “we all know you are going to die, xxxx has said that you have a very bad prognosis” and it got worse from there… lol apparantly i was being “too positive and optomistic” and “we all need to start facing up to the realities of the situation - including you” !!! :o strangely enough i don’t consider either of them to be friends anymore… (xxxx is an ex nurse by the way…)
it is sad when you realise that friends are drifting away… i have another friend who has practically vanished… her husband died suddenly 3 years ago and for the next two years i was always there for her… we would meet up every week… i was always there at the end of the phone etc… but since i was first diagnosed she has vanished… she was brilliant the first 2 weeks but once i started chemo she vanished… even after my mastectomy it took 6 weeks to see her… if it had been the other way around i would have been there to help with shopping etc straight away… her mum died of cancer a few years ago and i am not sure if she just cannot cope with seeing me go through treatment etc…
theresa
OMG rapsodyangel I’ve never had anything approaching that. That’s truly awful. I’m not surprised that they’re not friends anymore.
I agree Ann we do need to concentrate on ourselves. It’s true that if people react badly we can’t do anything about it. It’s their problem.
We should also be very proud that we are coping (maybe a bit wobbly sometimes) with this dreadful disease and remember that we are all special.
Keep well everyone
Jan xx
I too was very surprised and humbled by the way people on the periphery rallied round (also it may have been me who spoke about dumping toxic friends last year).
In my own case it was my sister who was the problem. Until a few years ago we lived and worked near each other, so saw each other all the time. Then she decided to move abroad and I think this was because our dad went into care and she didn’t want to deal with it (at the time she said “if dad dies you will just have to contact me”). Anyway, I was diagnosed with this in 2006 a year after dad died and the diagnosis came when she was on the last day of a visit to us. It was completely out of the blue btw, as I had been told 3 weeks earlier all the test results were clear and I did not have cancer.
Now, had it been me I would not have got on the plane the following morning, but she did and my husband has still not forgiven her 3 years on. She went into denial and every time she visited when I was still having treatment she just behaved as if nothing was wrong. There were even 2 visits where she saw me for 2 hours them went off to Spain and Italy for holidays! On a third visit I was in hospital isolation and my husband had to make her come to the hospital with him. I was on a huge dose of steroids at the time and she told me I “looked really fat”, then rushed off for a hair appointment. At one point my OH said to her “what don’t you understand about the fact your sister has a life threatening illness?”
Another problem I had with her was that she wanted to come back for good as she hates where she is, but my illness scuppered her plans as it meant we couldn’t have her coming to live with us until she found a house.
I don’t think things will ever be the same between us and I don’t bother putting off a lot of time with her as she comes over and prefers to see friends and other family.
Hi all,
Cherub so sorry that the relationship with your sister has suffered. Theresa I can’t believe what your “friend” said to you. Such negativity is shocking and the last thing we need around us is negativity at the moment so well culled I think.
I have found that very old friends who perhaps haven’t been in touch as much as they could have been have come up trumps. The ones I consider the most supportive just email regularly or send a text saying “Thinking of you”. I haven’t needed enormous practical help as my eldest came back from her gap year travels to help after my WLE in May and mx and immediate recon in June and somehow we’ve done it! (Dogs are definitely fatter though - how come I’m the only one to walk them?!) It is the emotional support that is the most necessary and I can’t expect my teenagers to provide that really.
I would love to know if any of you are making plans to make big changes in your life. I have just finished chemo but have another op to come in early December ( I think but I may defer it until January)but after that I feel I would like to give my life a major overhaul…suggestions welcome! Half the fun may well be in the planning!
Stay strong ladies and be kind to yourselves.
love and hugs Lee x
I was on town yesterday and I bumped into a girl I was friends with for years, she knew that I had cancer and totally blanked me!!! my hubby was shocked. years ago I went out with her brother and he died 2 years ago from cancer, according to his family, I made him a confined bachelor as he never married!!!
she eventually phoned me last night to apologise, she couldnt believe me and hubby were in town together and how well I looked, she said she felt resentful and it was so unfair her brother had died from cancer!!! guess who is not getting a christmas card this year.
I do not need to apologise to anyone for living my life
love
Carol xx
Hi All
This thread has made me realise I’m not alone. Over the past 18 months (diagnosed in July 2008 had WLE chemo and rads and now on tamoxifen) I’ve come to realise just who my friends are. My relationship with my sister and brother-in-law has gone downhill - I saw them four twice the whole time I was ill - no phone calls even just after I was diagnosed. This is even though our dad died of cancer a year before I was diagnosed and they spent a lot of time with him while he was ill.
Some close friends have also had no contact. On the other hand my mum, neighbour, my nephew and an aunt have been wonderful and I’ve discovered that people I’ve not been particularly friendly with in the past have been a great support, even just the odd email from a work colleague while of work made all the difference.
I’ve also discovered I’m less tolerant of some people and more likely to criticise or speak out against things I wouldn’t have dreamed of doing before. I’m also more sensitive and feel depressed sometimes but I guess this could be the tamoxifen.
Lynn
Hello All
Have been following this thread with interest - how sad that we’ve all experienced such ignorance from people we thought would support us. I was diagnosed in April this year, just finished chemo, surgery imminent. My mother sent me a “Get well soon” card when I was diagnosed as did one of my 3 brothers - none of them has bothered to contact me since to see how I am. It’s been particularly hurtful as my 25 year old son was diagnosed with Non-Hodgkins Lymphoma 3 weeks after my own diagnosis so has had surgery and chemo too. My “caring” family haven’t bothered to ask how he is doing either.
It’s true you find out who your friends are - I have a group of 6 who phone, txt etc plus “peripheral” friends and acquaintances who have made this cr**py situation bearable. My problem is that I only moved to this small village a short while ago, so no friends close by. I became friendly with a woman in the village - we walked our dogs together, she was very supportive at first, shaved my head, told me she would always be there for me night and day if I needed to talk - not that I ever made excessive demands on her and certainly not at ungodly hours.
Suddenly she stopped being available for walks, I didn’t see her for a couple of weeks and was ill, had to go into hospital. I sent her a txt asking why she was no longer available for walks as I could do with some company and she launched into me (by txt) saying “the world does not revolve around you”, she was busy with other things and if I wanted company I needed to made some effort with people in the village. I told her to leave me alone. A few weeks ago, on the day of my 7th chemo, she started txting me again saying she wanted to be my friend, but then launched an attack on me again, saying I was ignoring people in the village (completely untrue) other people had problems which may not be cancer but were just as bad to deal with (she gave e.g of someone else in the village who initially sent a lovely card saying she would support me, who had a urine infection - “and that can make you feel really bad”!!! )I have concluded that she has a “bunny boiler” side to her personality, she wanted to control me, she wanted me to behave in a way that she thought was acceptable - upbeat, positive, fight the ruddy battle etc etc.
I have decided not to waste energy on these people, even tho it makes me sad. The support from people on this site is fantastic and has kept me sane.Everyone’s experience is helpful so thanks everyone for sharing.
Chipper - your BC and treatment is just as devastaing for you as those of us who have needed the full works (chemo etc) so don’t feel you have to apologise.
Best wishes to everyone xxx
My OH is always telling me I like an argument, so deep breath and here goes…
Long before I had bc, I lost a good, really good, older friend to another type of cancer. And, to my eternal shame, I was useless, no help or support whatsoever. I know I was. I was in my early 20s and the whole thing just made me squirm. I can look back now and see what an immature p*****k I was. Especially as the years have gone on I myself have had so much support from so many people with my cancer.
I think the difference between us and our non-bc friends, acquaintances, etc is that we’ve had the ultimate lesson in growing up; we’ll never be quite the carefree optimistic souls we were before. Those less adult, and without similar earth-shattering and life-changing experiences, could well find us changed (even if we think we’re not!) in some way and perhaps difficult to relate to.
I think Carol’s friend, after having blanked her, was brave to telephone her afterwards. Cancer is not one disease, but many. It is cruel, fickle and insidious. Why wouldn’t she think ‘why couldn’t my brother have been spared?’ She loved him, didn’t she?
I don’t think I’ve ever been offended by anything anyone in my circle has said to me…I’m sure I’ve made plenty of similar gaffes in my time. I think that it’s only when something affects you personally, that you acquire any kind of in-depth knowledge of it, so questions or remarks that might seem daft or insensitive to those of us who have been through the bc sausage-machine might appear to be totally reasonable to some of those who haven’t.
However, I do completely accept that there are people out there with the hides of rhinos who blurt out the first thing that comes into their head or, even worse, the latest line in psycho-babble. I think remarks like ‘oh, my aunt had bc too…’ are just clumsy attempts to express solidarity. They don’t work, we know, but many people are genuinely at a loss to know what to say. And, of course, we are a far too visible expression of their own fears.
Sorry everyone, starting to ramble. Hope I haven’t caused any offence; these are just my random thoughts on some of the issues that are being kicked around on this thread.
X to you all
S
Hi all,
S I am completely with you in what you say, except for the fact that I think I have taken at least a bit of offence at what at least one friend has said (when told I had to have mx and immediate recon her comment was “what extreme lengths to go to to get a new pair of t**ts!”) which I found gobsmackingly insensitive on every level but did realise that she was trying to keep things light as I had been. I have put it behind us but I was shocked at her insensitivity which she apologised for.
I also look back and realise how little I understood about this disease when others were going through it, though never close frinds or family. Life is definitely a very long road with lots to learn along the way and some people seem to be more intuitive or empathetic than others, that’s natural…good old emotional intelligence I guess. I am lucky not to have experienced anyone crossing the road to escape me, that must be so hurtful.
Love to all
Lee x
Hi Lee
Thank you for your input…interesting remark by your friend…I don’t think, if, as you say, the tone of rest of the discussion was light, a remark like that would have bothered me much…or am I too laid back about these things?
I suppose I might just have replied with a flippant comment about how much I was saving, other people pay thousands for this…
It must be difficult for others sometimes, if we ourselves are trying not to get too ‘heavy’ about our illness, to strike exactly the right note themselves…I think you are right, Lee, some are just naturally more empathetic than others and it’s often those you least expect.
When I had my first bc (1993), there was a woman at work who used to shrink away from if I came near…I think she thought she could catch it. But it didn’t bother me; her problem, not mine (I thought it was funny…)
X to you all
Devil’s Advocate (aka Bahons2)