Please don't think of yourself of being invisible here as we are all in this together and sometimes one voice speaks for many of us. Remember that you have made a big step in adding a comment here as I reckon that they are many others who are just viewing this forum but haven't been as brave as you in commenting. Give yourself a big pat on the back and welcome to the forum.
Sophia, many of us feel out of place but these forums are somewhere you'll find others who understand. Share if you want to, or just have a hug if you don't want to.
To me it's like climbing a mountain and you're stuck on a rope half way up, on your own, and the shelf gave way beneath your feet. You can't go back, you would love to get back to safety and comfort and the way forward is terrifying, but you know you have to do it. When you reach the top it will be an accomplishment that you'll be proud of (having lost some nails and things along the way) and maybe the new life will be fulfiling but that safety and security has gone and you will never be 'carefree/Dx free' again.
What is also scary is the financial instability of it all. Will I HAVE to return to work halfway through this punishing regime..will that cause a recurrence. Why can't I get DLA to give me some time to recover...I'm exhausted and a third of the way through..if I had the strength I'd be angry!
When i finish chemo, I aim to be much more positive!
Its me the invisible lady who writes with invisible ink so no one will see what i've written and no one will comment, feels like im back at school, i was invisible there too... no matter how many times i try to fit in it just doesn't happen.
I'm with you Slendablenda - I finish my rads next Thursday although I will still have 10 more herceptins to follow every 3 weeks.
Just bear in mind these words of wisdom:-
'Today is the tomorrow you worried about yesterday'
and where did all that worrying yesterday get you?
Let's cross those bridges when we get to them, and don't let's put them in the way now.
In the words of Gloria Gaynor 'I WILL Survive'!!!
Follow the link and join in with me and Gloria - nice and loud please so that I can hear you!
Just hope that the link works
I vowed to move on when active treatment ended last week. I didn't. I can't. Not sure how. Not sure why? Depression has crept in, possitive thinking out.
2 and a half years on,i try to stay positive but when shit comes back and frightens you it really knocks you back... im struggling to get back on track again after tests etc..still waiting for results of biopsy but i am determined once they come back all clear... i will move on, be happy again...till the next time!
I had my 6 month review with the surgeon this week. All good at the moment, that's good enough for me to move on. If anything changes in the future I'll worry about it then.
My rads end on 23rd. December. 2012 is the start of the future for me.
Hear hear Mazzalou!
When we are gently placed into the land of NED then we are in the same place as everyone else who hasn't been diagnosed with cancer. I personally will be placing all of this into a box labelled "the past" and taping the lid shut. I chose to live in the present - in the "now" and I intend to enjoy every minute of it.
I just say "I've had breast cancer treatment and as far as we know it's clear, but I'm being treated with hormone suppressants to try and stave a recurrence off"
What I didn't realise really or actually fully understand before I had/have/whatever cancer is that even if they do get it all out, it hasn't spread into the blood or the lymph nodes from what they can SEE, there can still be micro cells that are undetectable with current methods and these could have spread unnoticed, not have been caught by all teh blitzing treatment and grow.
When they say "come back" I didn't think of it in that context, I thought it was a new cancer or they couldn't cut it all out.
Its very confusing.
Just wanted to say I chose my log in name when I was feeling most surreal - Alice Through the Looking Glass unwittingly finds herself in a land of Cliches (also too stupid to do an "e" with an accent). I did feel like I was on a rollercoaster only the ups were tiny scraps of hope and the downs were, well really down.
I'm looking forward to getting to the end of this treatment phase so hopefully I can live life to the full without dwelling on an uncertain future.
But wether I will say I've HAD BC instead of I HAVE BC I just don't know at the moment - still seems odd to say I have it.
Should have put the link regarding the recent article in. I also found the piece by A Edmondson very honest last year. There was a thread here about it at the time.
Makes me wonder how much is actually made up by the media and what has really been said. Shame the phrases "all clear" & "battle" etc are always associated with Breast Cancer.
Yes, Carolyn, Jennifer Saunder's husband sums at the situation very well when he says:-
"No one, he says, 'battles' cancer. Neither is it 'a rollercoaster ride'. 'It's just a long, slow, miserable grind,'
'So, there is no battle. I hate the word battle. You just get battered with a load of drugs. People want the words "trauma", "battle" and " life-changing", but it's not a great three-part TV drama full of moments, it's a long grind, like a slow car crash that will last five years and then, hopefully, we'll get out.'
'Something like 140 women a day learns that they've got breast cancer,' he says. 'If they knew more about the disease, rather than having to read all this nonsense about battles, then they'd be able to accept what they're in for and be better prepared to face it"
Well then I was cured??? but I am not now...hormone posotive carries a lifetime risk I tell them and if they would like to take that time bomb out of my pocket and put it in theirs feel free!!! I know what I am talking about 15 years later new primary...old fears!!!! For me I will NEVER consider myself cured , only fortunate for the years I ahve had and hope for more to come ...to see my 2 kids grow up I NEED another 10 years at least????? I am sooo glad I do have an undrstanding OH. Love to all XXXXX Jeanette
Iv just found this thread and can so relate to it! I finished rads on 1st nov (my birthday) and am now on tamoxifen for 5 years, im hoping for a recon next year. Myself and my family have tried to use humour to get through this, was hard for me to keep this up sometimes but made it easier for my family which is good. A week after i finished rads my daughter said "now that you havnt got cancer anymore can you have the girls for me on friday night?" Yes she was serious! My son said "oh good we can start having decent meals again now" Think i made a rod for my own back with the humour and playing it all down for their sakes because i often feel like s**t!! Friends say that i must be relieved its all over and that i can now get back to normal, I bloody wish! Actually, reading this back is making me laugh, you really can only understand if you've been through this. So glad i found you ladies that know the score,and so glad we're all cured!! lol donna x
Just wanted to say thank you for the link. I really enjoyed reading it. I thought he was very articulate and sensible. I liked the part where he said she was in year 1 of a 5 year treatment plan and there is no all clear. Very true, not morbid or negative but exactly how I view the 5 years ahead of me. It's all just 'wait and see'.
Thanks Carolyn x
i'd just like to say that i'm not all doom and gloom about all of this - just think people need to hear all sides of story!
If all the public hear is either horrific stories or "i'm not bothered and lets get out the pink feather boa and jump up and down" then it's a very scewed view..... I know theres a responsibility to not scare the hell out of people into not getting anything checked out but honestly......
I constantly bang on and on about how I was a hairs breath away from secondaries and mine was massive, aggressive and I was fortunate that as far as we know it hasn't spread.
If I'd have left that lump a month or 2 it may be another story and THATS how close I was.
Still here. Scared yes, knackered by treatment, anxious as anything but HERE.
I really wonder if Jennifer Saunders claiming that she has now forgotten all about having breast cancer is her way of getting the paparazzi off her back. What she seems to be saying to them is that the topic is now closed by being forgotten about, so no point asking me about it.
We all have very different coping mechanisms for what goes on in our lives, but at least most of us are not in the public eye everyday.
Will any of us ever forget that we have had breast cancer? I think not.
As for not even minding about losing her hair - of course we mind about losing our hair, our eyelashes, our eyebrows because we still want to see ourselves looking back at us from the mirror, but given the choice I would rather lose my hair temporarily than lose my life. I am sure that this is what she meant, but remember that the press are selective in what they print, and not always in the context in which they were said.
Just in case you are interested in reading what Jennifer Saunder's husband said in a newpaper article about her breast cancer you will see what he has to say about being 'cured' in the link below:-
Interesting about Jennifer Saunders as both she and her OH gave very sensitive and serious comments earlier during her treatment, that none of us here would have taken issue with, no All Clear stuff, no I am a better person for having BC.
And El Kat, you are entitled to feel "insert the asterisks of your choice" off. People want us so much to be "cured" and "fine". I have felt fine recently and have made a big thing of saying "I know people have thought I have looked fine before but only recently have I felt fine". Then of course I proceded to feel **** again.
I'm over 3 years after finishing chemo and maybe I'm one of the lucky ones. I feel fine (not the same as pre dx but fine). I don't have the energy that I had before and I quickly get tired, but otherwise I really enjoy life. I make the most of life, travelling, spending time with the grandchildren etc.
I WON'T let BC rule my life. Yes I get scared about a recurrence or mets, but in the meantime I'm going to enjoy life. What's the point of worrying about it.........it may never happen and if it does... well, I want to have made the most of it.
yeah, that's what jennifer saunders told the media. good for her if she feels like that! We don't hear the other side of it!
I dont think Media Coverage on the topic helps with articles like this one re Jeniifer Saunders:
"Jennifer Saunders: my fight against breast cancer
Jennifer Saunders has spoken for the first time about her luck at surviving cancer and how she was so well cared for she did not even mind losing her hair. & But now "back feeling normal" she has spoken about it for the first time and claimed that she has now forgotten about it and she "can't believe it actually happened".
"Apart from the fact I have to take some medication now, I don't feel like a person who's been through it," she said."
These stories just support the public myth that once you have finished your treatment, you snap back to normal and the bc has gone for good.
The phrase "ongoing, long-lasting and unpleasant side-effects of treatment" is a useful one to slot into conversations when people talk about being "cured". That's if you want to be kind to them, of course, there are other things you can reply if you're feeling a bit mean...
Hollymeg - I have to say in all honesty, I'd read stories about cancer survivors prior to my diagnosis and anyone "moaning" about life after cancer I used to think how ungrateful they were that they had survived it.
BOY do I get it now.
I feel like everyones looking at me to don the pink ostrich boa and jump up and down with joy all the time, instead I feel a bit deflated and scared of how much longer I have on this earth and what I want to DO and i need another 30 years! I'm 34 and I feel really robbed of my innocence with mortality, I don't know if I'm explaining myself very well!!!
You're NOT on your own. xxx
girls, i'm so glad its not just me. I feel so ashamed for feeling like i do, so long after my diagnosis, ive not even told my family or friends...
I'm 2 and half years post DX. I went to docs today and she signed me off with 'extreme stress reaction'
In the last 3 months i've had op on my knee, due to torn ligament probably brought on from chemo
abnormal smear (was scar tissue from lazor treatment 20 years ago),
headaches which needed an MRI ( turns out doctor changing Arimidex caused the headaches).
I had a large hard lump near reconstruction. I wasn't worried till everyone else started questioning it, so had a ultrasound last week which thankfully looked fine, just waiting for biopsy results now.
I cant remember when i last had decent sleep without the aid of sleeping tablets
This morning i returned to work but couldn't stop crying but how do you make people understand how you are feeling. I was plodding along and coping and then the shit comes back up to the top and scares the shit out of you again. How do we live with this fear for the rest of our lives?... i;m so tied and ache from hormone therapy and i feel so guilty for feeling like this and letting work colleges down. There are people out there with a lot more to worry about than me, i'm a lucky one i know but... everyone thinks, your cured, get on with things, what you worrying for?... only you girls know its not that easy is it?
looking back at what i've written, maybe i should print it out and send it in with my sick note, maybe people would understand better
Thanks girls for listening... i know you all understand x
Oh god, I'm so sick of people treating me as if I should be back to normal now. I only finished Rads half way through october I think? Im still totally shattered, joint aches and I don't feel back to normal. I'm grateful that treatments have finished, very. But I'm not going to have the energy levels immediately.
Why is that so hard for people to understand? I'm getting very paranoid and thinking that people think I'm milking it, noone has said that, but I'm very sensitive about it because I'm frustrated as hell about it and because I've no idea whats happening with it and how long it lasts 😕
Why do people insist on the "you look really well" is it to make them feel better?
When the cured question comes up... mine response is it will always be a case of wait and see. That stumps them!
caron_caron - you are not alone, my hair has not returned the same since chemo. I try to avoid checking out the back of my head. Let's say I have a BIG crown!
I saw somewhere recently that we are cancer warriors... I liked that 🙂 the thought that I am an everyday warrior! Tackling the SEs...
I also seem to have developed a condition which means I can't string words together properly on a forum... check and check and check again... hours later... SUBMIT
Agree with your first point Lemongrove. The vast majority have no idea about things like metastatic BC and I think that unless it affects themselves or a member of their family, it doesn't come onto their radar.
As long as pink october continues to focus on the nice fluffy stuff, I fear I will be banging my head against a wall for a long time (at least I'm hoping to be here longer than the "30 months average" I was given).
Hi I feel somewhat the same ! Am awaiting reconstruction in Jan, tram method,just started on taxmo... drug and am feeling a bit lost at best and really blue at other times.Meanwhile told I look well!! Suggstions welcome to improve mood and move forward.
I think it`s a symptom of our current "I want everything and I want it NOW" world that means that as soon as anyones treatment is finished they are pronounced "cured". You see it especially in the media. What they really mean is the cancer has been treated, not cured. I`ve been told "It`s all in the past", about a year later by a close relative. Now here I am two and a half years later tackling lymphodema, not life threatening but an inconvience!
I dont like the "survivor" tag either, Caron. It`s a bit too dramatic and triumphant for me. Maybe my pink t-shirt could just have crossed fingers on it!
Lemongrove............ yes agree with you there,I don't like to say "I'm a survivor" because daft as it may sound to me I don't want to tempt fate so I try not to use the term,and I don't say "I am cured" either for the same reason,I have had cancer,I have had treatment,and I have had a good response from chemotherapy and thats where it ends well for now anyway,I hope i will never have to do it again,I am still suffering side effects from chemotherapy still,no doctors can tell me how long I will be like this for,they just don't know,I know I have been told I am unusual and it's not everyone who doesn't recover their hair/eyebrows/shaky legs/TIA stroke/numbness in my fingers/ still sleeping 12 hours a day,I might be like this for all the time now,I just have to go along with it.
But apart from that the worlds hunky dory ...
Hope everyone else is doing well ?? xx
I would say, while the majority of people survive breast cancer, no doctor of any repute would ever use the cured word, because there are no guarantees. There is no guarantee that treatment will work, and no guarantee that cancer will not come back.
I appreciate that it is sometimes easier to go along with those who use the cured word, but personally, I always try to "educate" these people, because:
(1) I feel a cure for this appalling disease will only be found when society as a whole demands it, and is prepared to fund research - and that wont happen if there is complacency and trivialisation.
(2) While the cure word might be a comfort to those who have completed their treatment and want to get on with their lives, it is potentially a cruel deception that can be devastating for those who later have to come to terms with a recurrence.
Anyway, lecture over - just my point of view.
Ohh Mimsy I didn't know you were in the US of A (like how I put that lol).
I know it is hard to read some post's of ladies in the US and don't have insurance and KNOW they have found a lump and they KNOW it is BC it is terrible,I'm not good at politics but maybe USA should say for cancer be free for all,just say for things that could finish you off so to speak?
I know that if I were living there I wouldn't have had the insurance.
I just feel sorry for the ladies who have taken the risk,I think you think "it will never happen to me" but unfortuatley all I know are younger women with breast cancer.
I don't know about all the aches and pain thread I will have to look that one up,my back was bad anyway but now my back and both my hips are bad now.
As anybody noticed this as well, you know when your on taxotere and your legs don't work are heavy and are wobbly? well every time I have been laid down and get up my legs are wobbly for the first few second's I wonder if anyone else has got this?
No bommy night for me, I`m caught halfway between Halloween and Thanksgiving. We mostly have fireworks on 4th July. I`m living in the USA and got diagnosed and had all my treatment here.I miss all the fireworks on 5th November.We are, however, moving back to the UK next year, and since I started doing the heavy work, have found that my body takes a lot longer to recover afterwards.I started a thread about it, and then found the arimidex/anastrozole thread about aches and pains and found I wasnt alone. The good thing for me about this site is that I`ve been able to check that the treatment I get here is the same as I`d have got at home. They all seem to adhere to the same "gold standard" for bc treatment.Only difference being the results come through more or less immediately of mammograms, but I guess that relies on there being someone to instantly read them, on hand. The whole system is based on private insurance (no NHS) so you get a private standard of care, but its humbling to think if you havent got insurance as many havent, the consequences are dire! A great improvement in the UK is that cancer drugs are now free. We have to pay a co-pay here, a small percentage of the cost, so wahey UK for having the NHS and free cancer drugs!
mimsy no I'm not named twice haha they had a hic-cup with this site when they updated it,and I couldn't log on so had to make a new name etc but caron was gone or wasn't long enough blah blah blah..
Yes I'm recovered ty from the stroke,I didn't know it was at the time,I only found out later,I went blind in one eye at the time,it was very scary,as I'd been having alot of headaches as well but now know that was because of stress being worried etc,I just have to have meds to try to reduce the risk of another one,I found out there's quite a few women who have them related to chemo,don't know why?
Ninja I know it's bob but least they are keeping a close eye on you,and I really hope it's over for you and it doesn't even consider coming back.
Lauren my neighbour said to me last week "i'd of thought u'd be over all that by now"
yes well so would I but Im not so nerrpoo! lol
I had recon and 2 further ops and I can tell u I have not got great t*ts! a matching pair would be nice to start with !
have a nice bommy night x
hi girls... such a good thread. i'm 2 and half years post diagnosed and i got so angry when people used to say 'so your cured then'... they want to try living with the treat of this shit coming back and biting you on your ass. I had grade 3 VI.. had all the works and am now waiting for 2nd recon op... have MRI results on wed for headaches which have improved since i changed tablets... but we have to go through the crap of tests and results dont we... but thats ok because we're cured now anyway!! sorry im ranting... just glad im not the onlyone who thinks like this.
good luck to everyone xxx
Aye, just the antithesis of a "boob job" where you keep your own nipple etc etc.
Anyway, if I'm "cured", slice me like a nice ham, willya?
It's a tricky one Ninja.
The idea of being lopsided I had difficulty with as well, so I was very pleased that I was offered (and had) an immediate recon. I've since had to have rads to the chest wall because of the risk of reccurrance and so now I've got the lurking fear of it coming back there and not being spotted because of the recon...
None of the recon options are easy - and even when they end up looking good, they will never feel the same - inside or out.
Aye, Laurie. All one of my neighbours keeps saying is how wonderful it all is because I'll get a free boob job and the other will be tweaked so I'll end up with marvellous t*ts. I know she's trying to cheer me up but it isn't working on that front.
The surgeon said that they won't consider doing any recon work on me for years as he wants to keep a flat playing field to look for recurrences. So all this talk of "boob jobs", well I find it, quite frankly, offensive. An LD or DIEP flap recon is a major operation and NOTHING like having a quick implant inserted.
That was the worst thing of all for me, I think, waking up with only one boob; it's devastating.
So agree with your comments. I have stage IV and my friends think I'm being negative when I tell them its not going to go away or that I'll be on chemo for the rest of my (probably shortened) life.
The women they know in our village have all had a stage 1 or 2 cancer, mastectomy and recon. They keep asking me when I will be having mine. Sometimes I get so fed up repeating myself and think I should be getting a t-shirt printed up with "Yes I've still got it and no, it's not going to go away" 😉
Caron: "I don't think it's invasive cancer that can not be cured because all invasive means is it's capable of spreading to other parts,you might mean secondary that can't be cured."
As I said, my comment is designed as a response to "friends" who say "you've finished your chemo, you're cured now, come jogging, don't be miserable" or somesuch...folk who just don't understand that cancer treatment doesn't end with chemo and that sufferers don't leap up from their beds and start to feel energetic and blissfully happy immediately.
Peripheral neuropathy is a common SE on the Taxanes.
I had it quite badly (completely numb on soles of feet, and right up to my knees on outer side of leg) but my last Tax was on 25 August and the PN has all gone now.
Caron - I said that my particular cancer would come back quickly (if it was going to) because that's what the surgeon and Oncy both said after looking at the cells taken out. I have a very aggressive cancer. They hope that it will be OK but I cannot have a recon for 2 years so that they can find recurrences quickly and deal with them.
Caron Caron (So good they named you twice?). Thanks for your reply. Trust me to say peripheral neuropathy. In my case it`s damage to the nerves in my feet, but can be hands. It`s supposed to show up in the most distant parts of a person. I`m really glad it wasnt my hands because I draw and paint and the idea of not being able to do that is awful.
So, if they really dont know the long term consequences of treatment why not just say so, instead of making people like me feel they are "rare". When I mention the numbness in my feet to my onc I know jolly well that it`s not rare, and pretty much par for the course because she doesnt seem surprised at all. It`s just "wait and see" as to when it wears off.I`m living in the USA, but buying good old Clarks shoes as they have quite thick soles which I need for support.
Sorry to hear you had a stroke. I hope you are recovering (recovered?) from that,