A friend of mine is having a pink themed tea party in aid of BC (with a variety of fund raising initiaves going on). As she knows I have BC, she’s asked me to say a few words. I’ve agreed, but I’m going through a whole range of emotions …
Firstly, I absolutely hate speaking in public, but feel its an opportunity to get across a point of view that may not normally get heard. I don’t feel that pink and fluffy is me and wonder whether it would be better to withdraw if I can’t go with that particular theme. In particular I don’t want to be rude to my hostess, although I’ve warned her I’m not likely to say what she expects. Lastly (and probably most on my mind) I’m feeling that whatever I say, I’m a bit of a fraud as I’ve only just started down the road and can’t actually speak about much of it from personal experience.
I have started to write some words, based largely on what I’ve read on these forums. My intention is to give an insight into what its really like. I’m not avoiding the physical aspects of treatment, but I really want to focus on the mental and emotional aspects as I think those don’t get much (if any) airtime and so people have no real understanding. Obviously I will be mentioning no names and no personal circumstances.
Is this the right focus, or should I speak only about my personal experience to date? Please speak freely - I’d like to know what you really think.
If it were me I would feel very used and tell her so. I detest all of these stupid pink fluffy things anyway. If people want to donate money just send a damned cheque and be done with it.
It sounds to me like this is causing you some stress in getting it together - you really have got enough on your plate. It was very wrong of her to ask you - particularly as you’re in the early stages post diagnosis.
If she wants to hold a wretched pink and fluffy tea party get her to do the research and deliver the speech herself.
I think this whole idea is so creepy. Would she like some of us to swing by and show her our mastectomy scars perhaps?!
With no other disease or illness does nonsense like this go on. You wouldn’t hold a fundraising meal for HIV/AIDS and bring along a tame AIDS patient to hold forth about his/her experience.
Maybe simply give them the web address for these forums and tell them if they want to know the REAL truth about breast cancer and its effects, they should come here and see the harsh reality!
Oh Debs I think it’s a bit creepy too to be honest. You’re very brave to agree to do it and if you aren’t offended then that’s great, but to me I would feel as if I were being wheeled out as the star turn. I wouldn’t do it and I don’t think you would be at all wrong to tell her so if that’s how you feel.
That said, my own input to your question would be to say that, despite the fact that the treatment is miserable and nasty, nothing is worse than the first moment when you are told that you have cancer. That you have to face the prospect that you might not live to see your children grow up. Everything subsequent to that has been a means to an end, a necessary evil.
Thank you all. I have felt very put upon from the start - from when it was announced in public that this party was being held in my honour. I wanted to have nothing to do with it but was persuaded that her intentions were good. I never doubted that they were, but I was made to feel rather selfish in putting my own discomfort above her goodwill. I do wish I’d refused immediately, but this opportunity to speak feels like a way to re-dress the balance.
The whole thing will be very pink and fluffy, so I want to make it real. I’d like to tell them what breast cancer patients really feel and think and need. Of course, I might just change my mind and decide not to go …
But thank you, it felt good to have my feelings validated.
Hi Deb
Gosh what a brave lady you are! Not sure l would have appreciated the invitation, in fact l would have been devastated! but that is me!
I am sure people do these things because they think they are helping, but almost impossible to get a happy medium in such a situation.
Like so many family and friends who tell me how ‘strong’ l am, when l just want to crumble. Telling me l look ‘lovely today’, when inside l am falling apart. Putting a brave face on in front of family and friends, so l dont upset them!! Them telling me to go and treat myself and forget for a while! when it never for one second leaves me 24/7! Asking how l am today? what am l supposed to answer to that? l want to shout “I have breast cancer, how the hell do you think l feel, l feel like my life has ended!”
My inside is screaming out for help, but no one can help, this is my long lonely journey, l have never felt so scared, so sad, so very lost in my own body.
So for all those pink fluffies, nothing could be further from the truth. To me pink fluffy, is something soft and gentle, something warm and nice, something to be kept close and hugged!!
Hardly brings breast cancer to mind!!
So if you do decide to go for it Deb, tell it as it is! you wouldn’t have to read too many threads from the forums, for it to break their hearts.
I am sure they are all well meaning people, but if you have never been ‘here’ you will never understand! but l am sure they will be sympathetic and dig deep!
Gosh l sound a lonely woman, in fact l have a great family and friends with a lot of support…But l am still very lonely in this struggle…Well you did ask!!
Lots of Hugs
Sandra xxx
Maybe it would help of there was another fellow-sufferer with you - You know those posters, like a group of women and you have to guess which one has BC, wrong they all have or have had. There’s so many of us out here.
It is a chance to raise awareness, both of Cancer and how it feels, and also breast health in general, and if you’re brave enough for the challenge you might encourage one person there, at some time in the future, or someone knows someone who needs it, to go to her doctor earlier and that might save her life…
Sandra, just read your post, I’m sorry you are feeling so awful, these are the days the fluffy-sisters need to hear about. I’m doing a 10k run [walk] at the weekend (EEK!!), do I put a pink ribbon on my chest or do i run without a foobie, and why would i get such a very different reaction? They want to help, but they don’t really want to know that much. (rant over) Actually i just made a large bean-cushion for mum’s new armchair, maybe i should strap that across my chest, add a few coconuts and pretend to be a guy running in drag??
“this is my long lonely journey, l have never felt so scared, so sad, so very lost in my own body.”
Sandra - that says it all. It really does sum it up perfectly.
I know that is no comfort but you really nailed it there. I can’t sleep without the radio on anymore. Since diagnosis I hate the silence.
Hymil - you could try the t-shirt that says “Yes it’s false - the real one tried to kill me.”
I read and re-read this article (below) now and then - when the whole pink thing gets too much and I wonder if it is just me that hates it so.
It is called Welcome To Cancerland by Barbara Ehrenreich bcaction.org/index.php?page=welcome-to-cancerland-2
Thank you for that post. It was difficult to read but it makes me feel less alone…
I feel I’m trapped in a society of good intentions where the rest of the populace can’t or won’t listen.
Msmolly - it’s interesting you say you can’t sleep in silence any more but I’m exactly the same. It’s almost 18 months since I was diagnosed and I used to need complete quiet to be able to sleep - but since the time I was diagnosed (in fact in the week leading up to it, because I knew what was coming) I have to have voices in the background and I listen to audiobooks on my ipod. I think it probably counteracts the utter loneliness of being diagnosed with cancer. Even with supportive family and friends I think it’s the loneliest I’ve ever been in my life. This site was the only place where I felt as if I was understood.
Hi Debs, Did your friend ask you before she planned the whole pink fluffy fundraising…or after? I think I would do the following if she asked you after…I would just not turn up and phone her to say I was too unwell to attend. After all it is her day to raise money but the last thing it should be doing is causing upset and worry to you. Do or don’t do…what YOU want…no one has the right to cause you stress over this. Hope I am not causing any upset by speaking my mind. Love Val
my work has arranged a charity night for tonight in aid of the local Maggies cancer centre, the girl that is running it wanted me to say something and I said no, reason being, all the people that needed to know about my cancer know and I really detest the way people look at you when they hear you have had/got cancer.
I want to go out and enjoy myself, not have people look at me with the pittying look on their faces!!!
Ok I’m bucking the trend. I’d do it. I would first tell her how I felt if I felt I was being trundled out, and that I didn’t appreciate it being made public the way she did it and I would like her to remove all mention of it being in my honour, then I’d tell her I’m not into these pink fluffies, then I’d tell her that I’m quite prepared to speak but it will be the tough talk, the stuff people don’t want to hear (as so many of us have found out the hard way), it will be about survival, determination, and hope, but also about the physical reality of it, fear, loneliness, and desperation. I would probably write it out and make her read it well before the event.
That’s just me. I don’t get overly concerned about public speaking and I’ll talk about it to anybody who wants to hear.
Big but though. If you are stressing over just getting up in front of folk, don’t do it. You have so much to deal with right now, and having more stress placed on you by somebody that should have given it a bit more thought - well, you don’t need it.
This is an emotive issue mainly because quite often when people who know you hear of your diagnosis they want to be seen to be ‘helping’ you in some way. Some very proactively come round and do your ironing as a neighbour of mine I hardly knew did. Fantastic!!! needed it and it was much appreciated. But some go down the pink party route. I remember putting my size 6 in it at work by going on about the pink thing and how there was nothing pink and fluffy about cancer and causing a colleague to burst into tears. She was holding a pink party the following week to raise money. Of course, I ended up consoling her. The thing is like your lady, her heart was in the right place and she was just doing what women all over the country do. They really dont do it to get our backs up.
Having said all this, I dont think it is right to ask you to do a speech though but when I think about that, did you ever see the speech that Samantha gives in Sex and the city? I wish you luck but
experience has told me if you tell it as it is, no one really wants to listen and if you smile and say its not that bad, you feel as though you are betraying yourself.
That caused such a wry smile Linda! I suddenly find myself consoling people since this disease popped up - friends who use my diagnosis as an excuse offload all their fears and experiences. One colleague decided to detail all of the people in her family who’d died of cancer in an epic email to me. So odd.
Gennie I have discovered some fabulous extra long headphones so I can listen to R4 all night without strangling myself. Like you this has only happened since the cancer dx.
So much great honest advice here Debs - I really hope it all works out fine whatever you decide.
I have a suggestion for you. If you decide to go ahead, but feel uncomfortable talking about your own experience (I know I would, and would probably end up in tears)- why not read out a few posts from this forum, to give people a flavour of the fears and anxiety we all carry - from initial diagnosis to in some cases a terminal diagnosis?
Just caught this thread am I am in awe of anyone who would give a speech about their own breast cancer.
But sometimes peoples “hearts that are in the right places” are also (and I know this sounds cynical) in it for their own self-gratification.
For example, a friend of mine started running to loose her pregnancy weight and has really got into it big time. Good for her, she looks great. BUT, she wanted to run a half marathon. She found one in aid of heart disease or something and was asking around her friends and family if any relatives had died of this as it would look better on her application form!! Anyway, six months later she wanted, and did, do the full marathon and used my breast cancer as her goal.
Now I know the money she raised will be useful for the charity and well done to her for running 26 miles, but she would have done it anyway and I feel a little used.
The loneliness of this disease is crippling.
I wanted as many people I know to hear that I had it because the thought of bumping into someone and explaining it to them in the street filled me with horror. However, because people do know sometimes they pretend not to see me, they obviously don’t know what to say and I go home in another torrent of tears.
So Debs if you do raise courage to speak do tell them that ignoring someone because you don’t know what to say makes them feel like a leper. I can’t go to my own town centre alone anymore because of a combination of fear of being ignored and fear of being recognised and people pitying me. I’m constantly worried that my wig will slip and someone will laugh. I was never an overly confident woman before but breast cancer has managed to quash it all.
Sorry to be so negative but that’s how I feel.
Lesley.