Help !! dont know how to say it !!
i was diagnosed July 2007, Left mast, 7months chemo, 1 month rads and now on tamoxifen. So do i now say i HAVE cancer, I HAD cancer, Im RECOVERING, Im a PATIENT or a SURVIVOR, or am i in REMISSION!!
Its all so confusing !!
Ails
Hi Ails39
I was diagnosed around the same time as you and also had left mast, 6 lots of chemo, 3 weeks of rads and now on herceptin. I prefer to say that I HAD breast cancer and that as far as I know, I show no evidence of disease and I’m willing it to stay that way!
Ruby x
Hi Ails
I was DX in May 07 and finished treatment in Jan, just on tamoxifen now. At the moment I think of myself as recovering from breast cancer cos there is still some “leftover” stuff going on. I am hoping with time this will change in my head to cured of cancer but I certainly don’t say I’ve got it I always say I had it last year.
AJxxx
I’m with AJ on this. My hosp wont say I am cured or even ned (no evidence of disease) as that’s their policy. So I say I was ill last year but getting over it now. Wishy washy I know!
Irene
Hi all perhaps moderator can pick up on this one??? I thought you had to be clear for five years before you can say you are in remission. BUT it has been treated you have done all you can so I think you can say b****r you I’m gonna live till I die. As they say something else could get us regardless of cancer coming back. Do’nt wish to appear blaze cuz I am a coward and I find the whole thing scary and those that have’nt had all this s***t do’nt have a clue. as to how you feel, and if one more person says you have to be positive , I swear I will punch their lights out . So Ails I guess we will all have to get on with it best we can which we are doing anyway … How are you coping with Tamoxifen???
Hi I was diagnosed last May, had left mastectomy and auxillary clearance in June 2007 now on Arimidex. I have a best friend of 25 years who keeps telling me i am cured! Everytime she says it i feel like she is tempting fate, my fate! She keeps saying “You don’t have Cancer anymore, you are cured” It makes me feel really uncomfortable, I just say to her that you can never say you are cured just recovering. She thinks that if you are not experiencing chemo or rads then you are not having treatment, Arimidex and Tamoxifen are not treatments for BC!
It is a hard one and one i think is hard to define. I also hate being told to be positive, i find it most offensive as it makes it seem that those who lost the fight were not positive which is absolute ball***t! I also find it very patronising when people say to me “You are being so positive and brave you will be absolutely fine”! How the hell do they know! We all live in fear of this disease but unless you have experienced it yourself you have no idea what it is like, the side effects of the drugs we take, going to bed with one breast and waking up in the morning the same, lymphoedema, hot sweats where we drip all over our body, nausea, aching bones, but what the hell we are told we are lucky to be alive! Well so are they and without all the sh*t we have to put up with.
Sorry for the rant but i needed to sound off and if i have offended anyone i am really sorry.
Best wishes
Suzzanne
Suzzanne
I agree entirely, my sister and a friend keep saying I am cured now and that I am just dwelling on the negative side. but they have no idea what they are talking about I feel like I dare not say I am cured because I will jinx myself and I dare not be too optimistic because then I think I might miss a sign or something, and so when they say it they frighten me, as if they are tempting fate. I know that may sound silly but that is the way I feel.
I prefer to say that I am in remission or that I am currently showing no evidence of disease that way I feel safer.
Also as you say, how can you just forget it when you have so many things to remind you every day, like being careful with your arm so as not to get lymphoedema and the hot flushes and aching joints from the hormone treatment. I think I will just have to accept that no one can really understand unless they have been through it all themselves.
Hi Nightowl
Thanks for lthat, someone else who thinks exactly the same as me! That is where this site is so good, it makes you realise that you are not alone in how you feel and that does help, when i am out with my friend and i start to drip all down my face, body and legs, need to go to toilet to change underwear and take a small towel everywhere, she just says “sit down for a moment and it will pass”! I think with my friend she lost her sister 13 years ago to the disease and can’t accept that i have had it too, she blocks it out of her mind, wish i could do that!!!
I am seeing a councillor through the hospice and she is brilliant, first session she got these pebbles out and put one down and said that is the past, she put another one down and said this is the present, then asked me to put some more down to see where i think i am at. I put one down for my holiday on saturday, another one for my holiday with my best friend (the same one) in September, another for Christmas and the last one for my mammogram next April, i could not go further than that, it seemed to be tempting fate! She said it is good to look at things a year at a time, for me anyway.
Well i am off to hairdressers, then as my daughter is away going to feed her hissy spitty killer cat!
Suzzanne
I was diagnosed in 2003 and five years on i still say i am living with the fact i had cancer and it could come back at anytime…people in the “normal” world seem to think once treatment ends you are free to go on and live a normal life its not always like that and the fears are still there sometimes…
I was first diagnosed in 1990 and then again in 2007. I always say I had 17 years before it appeared again and I hope I get another 17. It would be interesting to see the statistics of how many years elapse before recurrence of another primary and secondaries. I totally agree with people who hate being labelled positive. I suppose it is meant to be a pat on the back but it really annoys me. Nobody can understand how it feels to live with a diagnosis of BC unless you have had it.
I also hate being congratulated for being positive. I might get a T shirt or badge made up saying I’ll punch the next person who says it to me!!
Maybe it’s because I’m a criminal lawyer, but I think of it as a life sentence not a death sentence. At the moment I still say I’ve got BC, but I’m early on in the process (I also hate people calling it a journey - I’m not going anywhere, or having any fun!!!) having just had 2nd FEC. I’ll probably say different things to different people, depending on what they can cope with.
Hope everyone’s having a good day today.
Kinden
x
Hi Ails & all,
I’m glad you started this thread as I have been having the same conversation with myself for a while now! I was diagnosed in March last year, age 34. I had a right mastectomy and total anc, followed by chemo and rads. I started a 5 year course of Tamoxifen on Nov 1st last year and I’m also on Zoladex for 2 years. I should be having Herceptin 'til dec but that got stopped a couple of months back due to heart failure.
So, I never know what I am!!! As I am still having treatment for bc, albeit in the form of Tamox, do I HAVE bc? Or maybe I am in REMISSION?? Or could it even be that I HAD bc?? Blimey I’m so confused. I got admitted to hopsital a couple of months back with heart trouble and when the staff on the medical ward asked me if I was in remission I honestly didn’t know what to say!
My onc says he’ll never give me the ‘all clear’ as with some other cancers as bc is so unpredictable and can rear its ugly head many years after initial diagnosis. However, surely at some point I should be saying ‘I had’ rather than ‘I have’???
I shall be following this thread with interest, and am keen to see what fellow forum users think,
Take care,
Kelly
-x-
Hi all
Thanks for all the comments ! so glad im not the only one !! I think i may not say anything and go down the punching route (sounds fun) and may make people think twice before they tell me “i look really well” " my face suits short hair" “wot do you need a boob for anyway youve already got your kids” “dont worry you cant really see the scar in that vest top” !! They just dont think !!
So here i am off t0 be brave face the world be glad im still alive look at the positive and get back to normal !!
I AM NORMAL ITS ALL THESE 2 BREASTED WOMAN THAT ARE ABNORMAL !!!
Ails 38
ps that feels better !! got it off my chest ( but just the one )
Hi Ails
I was thinking the other day how outside the normal world i still feel sometimes, its like the people in thier bubbles still go about oblivious to thier own mortality and here i am 5 years down the line still worrying and wondering…i dont really know what we can class ourselves as, certainly only having my one boob makes me feel different still, i dont think any of us can put a label on it as you say but i will punch the next person that quotes the murdering bus driver quote at me!!!
Hi Ails
I say I had it, and I’m just in the middle of a mop up operation now. Seems to sum it op for me
murdering bus driver?
Hi i loved the comment about the ‘murdering bus driver’ very witty it really made me laugh! I also get told that i could end up being run over by a bus as likely as dying of BC! The thing is i do not intend to throw myself under that bus! I have a choice whether i actually do throw myself under that dratted bus i certainly had no choice when it came to BC
Take care
Suzzanne
Hi all Totally endorse all your feelings. What folks who have not had BC do’nt seem to realise is you can never put this totally behind you . Apart from side effects of ttreatments etc you have to have check ups , yearly mamms etc. They must think it’sl ike having appendicitis . My chemo and current rads where more of an insurance policy I was told but one friend often says to me you hav’nt got cancer anymore you’ve had the op and all the treatment you have to be positive. well I am 7 days into 25 day cycle of RADS then Tamoxifen (5yrs) and I wish she would swap places with me. Bobbie