Sorry eveyone, just need to vent.
Had an email from someone who knows what is happening to me and the prognisis etc, they opened the email with:
Hi, are you all better now?
I sat there not knowing whether to laugh or cry. For godsake, jeezus, no I am not f**** better, I’m going to bloody well die, don’t you get it!!!
Managed to restrain myself from replying with that bit, but truly why don’t people think huh.
Feel better now for ranting.
Nikki
Hi Nikki,
glad you feel better now you have been able to vent.Ian and I are used to daft insensitive remarks, yes the bad news is we still get them, good news is we laugh at them.
I think people just don’t know what to say or how to deal with a secondary diagnosis. I am sure they just don’t think.
Love Debsxxx
Yes, this is something that I think many of us have encountered.
For example, I was talking with a usually sensitive mum at my youngest daughter’s school today. We were talking about which secondary school she would move onto in September.
I have a choice of a couple of schools - the local state school and an independant school which has offered us a bursary. I said that I thought that my daughter would probably be better off in the state school because I thought the pastoral care and the fact that they weren’t so pushy academically would probably be better for a child who, in all probability, would have to cope with the death of a parent during her early years there.
The mum just gaped at me - I think she thought I was being over dramatic and she couldn’t get her head around what I was telling her. I just don’t think that most people understand that we have a terminal illness, even though we might look OK on the outside and appear to be living normal lives. And when we tell them the likely outcome they don’t want to believe it - either out of a misplaced sense of optimism or an inability to really face up to the horrible realities of secondary breast cancer. Can I blame them? I guess not. Most of the time I pretend that I haven’t got secondaries too.
Deirdre
Nikki
I’ve had af few of those insenstive e-mails in my time…but I do usually reply…and very harshly too.
Right now I find my e-mails have subtly changed…because I have stopped treatment people seem to think I’ll be dead by the end of April. Most disconcerting.
And Deirdre you ask whether you can blame them…given you spend a lot of time pretending you don’t have secondaries. In my experience people in breastcancerworld are no better about talking about dying than the rest of the world. Death seems to be syphoned off into a special place (special forums for example) and not to be mentioned as people plough their way with treatments with many cheerleaders urging them on.
Jane
I get most of the insensitive comments at the school gate too. One woman asked if I had finished my treatment yet. I explained that I would always be having treatment. OH MY GOD she yelled and her jaw dropped a mile. Thanks a bunch I thought. I’ve studiously avoided her ever since. As I don’t walk round wearing sandwich boards proclaiming ‘I’m dying of cancer’, many people DO think I am ‘better’. It is difficult for the world at large, who are not among my group of friends - but hear the gossip - to comprehend the real situation.
Jenny
For me I think alot of people do think I am fine. That you can seamlessly have 6 taxoter, 18 taxol, carry on your job to a certain extent and just feel completely normal. Maybe it is my ‘fault’ perhaps i should be more open with people so they understand fatigue, bone pain and just the general situation!
jenny - I always hated the school gate conversations in what little I did at the school gate.
cathyx
I too have had more than my fair share of insensitive comments…in fact I make sure i stand with a friend to avoid a lot of them. I also have learnt to avoid the mums who are asking after me just to be nosy not because they care.
I have also realised i need to be careful of what i say as some of my friends children have been teasing my son about me being sick and that I am going to die. They can only have overheard my friends talking as at the moment my son doesnt know my cancer is terminal. So I have had to ask people to not talk about it in front of children.
The first time i went without a scarf or hat a kid came running up to me and said’‘you’ve had a hair cut’'. So upsetting. Also the general response to when i say I have secondary cancer in my hip is ‘can’t they do a hip replacement’ -I wish!!!
xx Jools
Hope you don’t die Jane … I would miss all your great comments!!! I keep up to date with you all.
As for silly comments I find that when it has to come out that Lisa died people firstly look quite shocked and then it is added that she had breast cancer and their facial expression usually changes and they say something like,“Oh I see” or " Ah right", with a nodding head and with that awful ‘knowing’ look as if it is a given that women die because of breast cancer. I want to shout that we didn’t expect her to die so suddenly and it was a shock to everyone including Drs and how she was bouncing a few weeks before. And how Lisa’s case was so unusual. But I know it won’t do any good they would still do that knowing, smiling nod as if I should have expected it. These are of course people who know nothing about breast cancer and don’t know how unusual it is for someone to die 13 months from diagnosis.
I try now not to say anything at all about Lisa even when I would like to. Shame really how some people seem to think they know all about it by reading things in the press. From comments made to me I am definitely expected to have got over it by now. As if I will ever get over it.
Theres’s a poem I can’t remember it all, “You never get over it, you just get through it …” and it ends something like " Its doesn’t get better, it just gets different, every day you put on a new face"
I think this could also apply to people with secondary breast cancer. I would love to say all this to those people who make silly comments to me but of course I can’t really be bothered with them… and theyw ould think I had gone barmy!
Sorry said more than I meant to… don’t want to hijack your thread.
Love Sue x
Hi Nikki
I can not believe that comment and would probably have responded, the strength of response depending on the person who had sent it,
People do find it hard to dicuss and/or accept the concept of death, particularly in someone who is relatively young (I am 42).
But I really find the email you received unbelievable. I think people think that if you mention death you are being Negative, When, in fact, you are being realistic.
Maybe you need to point out that once you have secondaries, you will not actually be better again, and will actually be worse as time goes on.
However, that does not make you miserable, just pragmatic.
Ena x
Hi Everyone,
Also probably the worst thing is (in my case anyway), I have never looked healthier, what with carrying all the extra pounds from all the treatment on board! I used to be a skinny little thing many moons ago, that I sometimes don’t recognise myself. It is natural for people to comment, ‘Are you ok now, you must be because you are looking really well?’ Or, 'You have put on a bit of weight, haven’t you? Almost feel like saying, 'Oh, have I? Didn’t so notice!
What makes it worse is I guess all of us who belong to this exclusive group have become super conscious and sensitive, so we find it difficult that people can just open their mouths without engaging their brain!
Keep battling to educate others. Dee x
What makes me really mad is a certain relative of mine who everytime I speak to him, he always says “you’re going to fine, you are going to survive this, trust me, you will be ok”. The children are always around when he phones so I can’t argue back very well but I wonder why he thinks I would believe him above what medical knowledge dictates.
Another thing that bugs me is a certain friend droning on endlessly about how she goes to the gym 5 times a week doing spinning, aerobics, etc. etc. Is it just jealousy on my behalf because after just completing 6 taxotere I feel knackered or is it really tackless of her?
Sorry to rant on, feel like Victor Meldrew!
Regards
Linda
I’m sure everyone thinks I’ve got Munchausens disease as since sept 06, I’ve been saying ‘the onc says I’ve only 3 months- 18months’ and then I’m still here really shocks them. The trouble is until recently, I did tend to look very well especially with the wig and make up so it makes it hard for them to understand. I wonder with the news of quickly Jade Goody died or Wendy Richards, that people will realise that cancer can kill very quickly and that you can look quite ‘well’ up to the end.
I don’t think people know what to say so just go with what is considered politeness and ask questions like ‘you’re all better now then?’ as they have no understanding of what living with cancer secondaries is like.
Often I look back at my education and think what I really needed was lessons in ‘life’ - dealing with mortgages, government bodies, bank accounts, children, utility companies instead of something I will never have use of again.
We’ve (hubby and me) have really struggled to get advice and help about dealing with children whose parents have cancer, living with secondaries and death of a parent. We have used or looked at the most common resources and you will find a lot of my posts are often about my family.
I think over the last 4 years there has been some more honest accounts especially when a parent has died and I feel my family will be able to get help and advice when this happens. It is the ‘living with secondaries’ bit that is often sadly missed out.
Our culture does not really allow us to talk about death and dying so it is hard to find other people in the same stages as yourself and it does not allow the ‘patient’ to express their feelings adequately either as often I feel I end up considering more what they want and their needs rather than what I wanted out of that conversation - need to be more selfish I think!!!
I don’t think people really mean to hurt us but they have not been given the opportunity previously with a dying/seriously friend/relative to learn how to communicate from that view point.
Having just been so ill again and being told I wouldn’t survive, the number of friends who have sat and cried with me and stroked my head or held my hand has been astonishing but seems sad that we have to get within death’s reach for friends to express their feelings about us.
I hope with the internet and the use of chat forums and people’s blogs that it does educate people of our needs.
Have really rambled so will update on a separate thread.
I hope you feel better for your rant - it does help and that is what I like about the forums that we can vent our feelings and people will respond and although you may get different responses to what you would expect, you generally get really good advice and support. I would not be here now if it were not for these forums I’m sure.
Sorry - rambled and waffled for 2 long
Dippykate - I’m fairly new to this site, having had a lumpectomy etc about 3 weeks ago (grade 1, stage1, ER+, no lymph nodes), and have been dipping in to the forums for a couple of weeks now.
You may have already come across this, but I just wanted to put on a link to a website of an organisation that helps children deal with serious illness & bereavement. I first came across it about 4 years ago when my daughter struggled to deal with a close friend of ours dying very suddenly.
She found it very helpful, and I found their information very good in helping me talk to her about the issues involved.
They are winstonswish.org.uk
regards
Philidel x
Thanks Philidel - I know about Winston’s Wish and we also have a local similar one so that is good. I think we have been through all the other main cancer sites for information. There is also, I believe, a link and resource pack here at the BCC about living with secondaries and children.
Thanks for your help
Kate
when i was in hospital having aa bi-lateral mastectomy, my freind came to visit the first thing she said was, god lorna i,ve had such a bad day at work, didn,t have the strength to say i think i,ve had a bad day too,you,ve just got to ignore them, good to see your posting again kate,
Lornaxxx
This thread definitely hit the spot with me - hopefully not the one on my hip ha ha!
Whilst I had chemo (for secondaries and local recurrence) last year everyone ‘knew’ I was ill - after all I looked it so I must be, right? However since coming through the other side of that and, as said above, looking pretty good with my new cropped hair etc everyone seems to have forgotten or not understood what I have. I admit that at work I didn’t want to talk about secondaries - after all they’re not my closest friends - so I have made a rod for my back and have to smile and say - yes I’m fine. But what goes on in my closest friends’ heads? What really got to me the other week was a group of them talking about us all going on a cruise for one of their birthdays when she gets to 50. That’s 4 years off for Christs sake - why include me? I didn’t say that, of course, neither did I smash her face in but boy did I feel like it! After all it would have caused a bloody mess at my daughter’s 18th party so that wouldn’t do at all!
Rant over.
I also avoid anyone who ‘sort of knows me’ as I really don’t want to explain or have that sympathetic look from someone who thinks they understand but so clearly doesn’t.
2nd rant over 
Thank goodness for this forum, you can certainly let off a bit of steam on here without offending anyone - let’s hope! Also, thanks, Sue, for saying how it feels from your point of view. Thinking of you.
Nicky
I would just like to say that when i had my first op (had to get 2 op’s) my sister-in-law text me and asked if i was better yet! I text back saying no far from it the cancer is still there and i’ve to go back into surgery. Two days later she phoned me and hinted strongly for a baby-siter for her two kids one of which is lets say is unruly. Of course i was having a stupid day and never picked up on her hint
Some people can be b****y insensitive and i don’t know if it’s deliberate or if they genuinly don’t have a clue.
My mum-in-law has told my oh when i was dx “oh well she’ll get treatment for that”. That was just over a year ago and we’ve never heard from her since, but of course the old battle axe never wanted me to marry her son.
The thing I find the most difficult is when I see people in the street who know i have cancer. They usually don’t know me that well, and the feel they are being kindly, and i’m sure they are when they enquire about how the cancer is going.
The trouble is inevitably during the convo they will always ask ‘how are the kids taking it’ and without exception that is when my eyes fill with tears.
Now I feel don’t like to cry in public, I’m sure in common with many, aned I don’t really like to be reminded of how bloody awful this all has ben for my kids. On the hand of course I know that these p[eople are not - far from it - being deliberately unkind, i think this just goes with the territory.
After all wouldn’t it be wierd if our response to that question was a bright little smile and a ‘very well thank you’!
Just prior to my mastectomy (Monday just gone), my sister-in-law asked if I would be having a reconstruction before telling me I would be getting a boob job and was lucky really. Yes of course I am.
And someone told me in was great I had the all clear. This was at the end of my chemo and before my mastectomy following a scan which showed a reduction in my liver mets.
And it isn’t unusual for people to stare at me intently and profusively tell me, somewhat suprised, how well I look. Or to admire my hair(I have a lovely wig), when they know I have gone through chemo…
Or for people to liken their lifestyle fatigue to mine. Or to trouble me with their troubles which I would happily swap for mine. (well not really - I wouldn’t pass this on to anyone, but you know what I mean!) Its even been suggested to me that people might have more recognition for my illness if i sat back more, wasn’t so independant, worked and so on. Do they mean I should act ill? Not just sometimes, feel ill?
But I don’t mind really. Good job I’m pretty mellow. And can even be quite amused…some of the time! And the few to the side, most people mean well and most are pretty sensitive and some are positively brilliant.
There is a general issue that a lot of people just don’t understand cancer. I didn’t until I got it. More fool me and more fool them. I don’t think the way that cures are talked about, survival rates are collated and broadcast help. I do think a false sense of security reigns.
Hi everyone, thank you all for your posts and comments, it’s not just me then!!!
I know they don’t mean it, I guess it can be tough to know what to say to me, but really just thinking for a moment would mean some of the people mentioned would not come out with what they do.
I have a pretty black sense of humour about the whole thing, and usually it doesn’t bother me, but for some reason that one just got to me. I am over it now though.
I know full well there will be many of a similar ilk, I do get tired of the ‘how well you look’ ones, jeezes, what do you want, me to look like a walking corpse, is that a more acceptable way for a dying woman to look then!!
I am still working, and being as normal as I can for as long as I can, so I guess it must be hard for everyone to comprehend what it’s like inside my skin and dealing with my fatigue and pain and fears. But I just get on with things, as that is who I am and when people ask me how I am doing, they always get I am fine thanks.
At least they ask, although if they got the truth that would soon stop em!!
Hugs to all
Nikki