Thank you Jane.
She is vile with tiredness!
Had an unexpected job interview on the 5th anniversary of my diagnosis which I got (hadn't worked for 9 years) so am back working part time which is lovely.
I think about you every day and read your post with total admiration and respect.
I was diagnosed during the pregnancy of my second daughter, to say that I went to hell and back several times would be an understatment. The fear of not having time wth my children at times was unbearabley painful coupled with them being so young the fear that they wouldn't remember me or know anything about me however.........I have changed aspects of my life and am now happier because I had to face the very painful fact that I potentially was/am going to have a short life. I would lie in bed sobbing and dreaming that I would be alive to take my precious little baby to school on her first day and last September my dream came true, very few of the mums knew why I had tears trickling down my face as I waved her in. For me the fear of recourracne has lessened over time as the day of taking her to school drew nearer and my dream coming true. I am begnning to think about my annual mammo (more the result of the annual mammo) in April already. If the truth be told I wasn't very happy with my life before cancer and decided if I was going to be having less of life then I should make it count, counselling helped me sort through my feelings including a massive dollop of anger, I still go once every 6 weeks for a maintenance session. I'm realistic about my prognosis but for me I wanted to make the most and appreciate the healthy days that I have had and for this to happen my life had to change.
Hope this post hasn't upset or offended anyone but this is my description of my experience.
Big hug to all
I had grade 3 and grade 2 mastec. lapis dors. chemo and in France, Rads and then Pagets disease and 2 other operations, I'm due a PET scan as my blood markers for Ovarian Cancer is waaaay tooo high, and there isn't a day goes by when I don't get some pain in my now cut about recon. I don't worry over it too much, and just have to go with the flow, I get on with life, am cheerful and run a lot - done three marathons in 3 years.
I try and educate people, but not force it down their throat and it annoys me if people say "you must be cured now".....ie I am not in agony or attached to a drip and don't "look like I've got cancer!"
I've spoken to people who I know have BC and becuase it's been over 5 years for them, they say "I've had it, it's gone" and don't talk about it, or give it a thought.
My MIL had a lumpectomy two years ago, rads and is on Arimidex (as I am) and she never talks about it, and refuses to say she has BC, just that she had a small lump removed as if were just a blip in her day.
So I guess we are all different in our ways of dealing with this horrible disease.
I agree that it gets easier as the years go by but i still think it is in your mind in some context or another,mabe that,s just the way i feel, i suppose i can,t speak for everyonebut i had a stage 3 grade 3 neg cancer that had spread to 5 nodes and i was 30yrs at the time, so i am grateful that i got 16yrs out of it before it came back, this time around it was triple-neg basel cell stage and grade 3 very nasty again, i was told chemo only option, but i obviously responded well to chemo last time round so hoping i do the same this time. I do think the talk you have with your onc has a lot to do with your frame of mind, i was a bit nieve last time because they seemed to do things different then, this time they told me quite a lot so iv,e a lot more to think about. A lot of people have said i must be very brave because i can talk about my bc no problem and like to be as factual as i can, i can,t understand the word brave because that is not what i feel at all, inside i am a wreck but have husband 2 grown children 1 granddaughter and a dog all living at home so just have to get on with it as best i can. I know it is not healthy for you to be scared, angry,stressed or depressed about what is happening to you but these are all the emotions i feel, i do feel happy too but sometimes the bad outweighes the good. Sorry iv,e went on a bit but iv,e just recently got used to posting on here as not good at putting feelings on paper (so to speak). I also feel that this time around can,t really speak to much to my family or friends about it as i feel they get fed-up listening, so i have been carrying a lot of baggage around for a while now.
Your friend is very lucky to be as she is , i am living with it and most likly people think i am obbsessed but i really dont care i am going threw it in my way which i think is most likly the way most people do.
Theres strong people make me feel quite sick do they relise the pressure they put you under when you arnt positive like them, When in Liverpool there was the big stand thousands of women dressed in pink for cancer, well i had the radio on and this women was going on and on about how we shouldent be victams and we should all do are bit and go and do the stand , well i cryed and cryed because my body needs a wheelchair and standing dosent come into my life, so this women who was recoving from cancer dident she stop to think about the people who carnt do things and are made to feel so guilty , alls i could do was donate a lump sum of money and my two cousins stood with me in there thoughts , so dont feel you are obbsessed i think like all of us you are normal.
I was diagnosed nearly a year ago with Grade 3 IDC. My treatment finished in October. I think about cancer alot and I am very aware that my life could back to rounds of treatment or secondaries in a very short space of time. Although I am NED at present i know that is no guarantee. My mum's bc was NED for25 years when she got a reoccurance. I read the secondaries threads alot as it gives me insight into how it is to live with them and preparing myself if I get secondaries.I feel I am realistic as I know bc is so unpredictable and no amount of clean living can protect against it.
Yes worrying about cancer returning does get easier for many of us as time passes. By the time I had got to 3 and a half years past diagnois with a poor prognosis I was calmer about the possibility of it returning and if it still hadn't I think by now I'd be "thinking about 'it'" less.
But mine came back..damn...
I'm really interested in the thoughts of others, like me, who had recurrence a bit of the time after treatment ended. My 2 and half years of NED are very precious to me now...better to have had them than to have had a shorter time before recurrence. I have also wondered whether I would have worried about recurrence less if I had had less to worry about. When you have grade 3, stage 3 23 positive nodes as mine was its different from stage 1, grade 1 no nodes.
I have a realistic attitude to cancer...know some cancers can be cured, know some types of cancer more deadly than others, know many survive breast cancer but far too many won't..me included bar the bus.
My friend I play tennis with had breast cancer 15 years ago and she said that as each year goes by it gets easier!
My cousin,like me triple neg,was dx 7 years ago and says she never thinks about it now.She is 69 and her husband has Alzheimers,they have no computer and when she was dx her doc said,'I am going for cure'.Noreen had WLE chemo and rads then got on with her life in her usual matter of fact way.She was a great help to me when I was dx and while I am sure her bc 'crosses her mind' from time to time she [unlike me]doesnt think of mets with every cough and twinge.I dont envy her life but I do envy her attitude to her cancer.
I think that anyone who caims NEVER to have thought of their cancer since treatment finished is a bit odd, and is protesting too much.
People do vary in the extent to which breast cancer impacts on their lives after tretament...these differences may be to do with knowledge., personality, type of cancer, how treatment affected health.
No rights or wrongs but in general I find little in common with people who are 'minimisers' and prefer those who speak openly, thoughtfully and insightfully into the experience of having cancer.
Like Renee I don't understnad those people who say theri lives were changed for the better by cancer....well actually I feel angered by such crass sentiments. Go tell it to the children who lost their mums to breast cancer; go tell it to the young women who lost their fertility
I too have a friend dx 9 years ago. She tells me that she no longer thinks of BC every day. BUT she certainly celebrates every birthday & anniversary big time, as a celebration that she is still here.
Thats the problem with people who tell you to move on they have never been through a lifethreatening illness so they don,t know what they are talking about.
If everyone with a dx with cancer got surgery, treatment and was guaranteed a cure there would be no problem with moving on, but we all know to our cost that
a cure does not happen, all we can do is live each day at a time and hope for the best.
When i was first dx 17 and a bit yrs ago they told me at my request that it was a particularly aggressive tumour(wish i hadn,t asked but i was nosy) it really frightened me
as i had young kids and worried everyday for years about seeing them growing up to take care of themselves and then 16yrs later when i was starting to relax a bit it came back.
I was in shock and totally devasted as i had just became a granny and thought i had at last fought it. There,s one thing for sure i don,t take nothing for granted now although i feel cancer
takes over your life and wish (although i do know that is not possible) i could go back to my carefree days when i thought nothing could touch me. You never imagine it can happen to you,
only other people.
Iv,e never understood people who say cancer changed their lives for the better as far as i,m concerned it destroyed mine, i know that may sound a bit dramatic but that is how i feel.
I am grateful that i managed to get a lot of yrs out of my first dx and see my children grow into adults, it really hurts my heart that there are a lot of young people out there who don,t.
mazaroo.. hope you get on good tomorrow, i know how you feel i had op dec 07 and had to have 2 lumps investigated one just at the side of my recon scar and one in other breast but they both
turned out to be cysts, my nerves were shattered. Good Luck.
I am 17 mths post DX .....And another lump has been found !!!! Scan tomoz .....prob scar tissue ! But yes i ache all over all the time and think about it all the time and too had a mast so see it all the time ...so as you can tell I am obsessed with it ...my OH tells me to move on but aint that easy is it girls ...to everyone who knows me I am amazing !!!! A TRUE INSPIRATION haha if only they new the truth ...thank goodness for this forum where we can say exactly how we feel ...thnx xxxxx
I do worry about every ache and pain, even though I am only into my second week of rads. I don't think life will ever be the same again but somehow I have got to learn to enjoy life and try not to keep thinking about whether it will come back.
Also part of the problem, for me but maybe for others is that friends and family see us go through chemo, mx, rads etc. but then think that once we've finished then thats it.
That's why a forum like this is so good, we can express our feelings here without recrimination.
Your definetly not in the minority....I was dx in jan 04 grade 3, 12mm tumour, WLE, chemo', rads' , and now tamoxifen, I don't worry about every ache and pain as much as I used to...but I do still worry if its something that niggles for a while...ie., had problems with my back and eventually had x-ray to be sure nothing sinister there...which fortunately there wasn't!
I think everyone is different, some people don't want to read forums such as these, or know anymore than they need to about their cancer/possibilities of recurrence or secondaries etc.,....they just want to put it behind them and move on.....which, if you are the kind of person who can do that is great, BUT, if you aren't and can't [ i'm not and can't ]....thats ok too....I would guess the majority of people find it very difficult to put it behind them and move on without another thought.
Think we have to learn to take each day as it comes......and make the most of everyday.
Yes Marion, I think you are right. I spent most of my adult life worrying about the welfare of others, but I've had to learn to be selfish and I now have a lot of "me" time because I think I am worth it.
I'm 20 months since dx and I do have days when I am sure the bu**er will come back. As I had a mastectomy I'm reminded every day that I had bc.The Buddist saying is wonderful and I wish I could live by it. I do make plans for the future and hope they will happen but who knows with this monster. Most days I am positive but I get bad days when I'm not. It would be great to be able to forget about bc but barring total memory loss I don't think I will. Be good to yourself and enjoy what you can and sod the rest.
I'm over 2 years post diagnosis now, finished Herceptin last May and was discharged from Oncology in September. I needed a bit of counselling help towards the end of everything and had 6 sessions last summer/autumn.
I'm finding it's getting a lot better as time goes on, but I think this may be partly down to the fact I have a lot of diversions as I now work in my husband's business and am retraining via distance learning. I also feel very well mentally and physically which helps. I don't think about things as much as I did and I don't dwell on what happened to me either - it's happened and there's not a lot I can do, so I figure I just have to get on with things. I found this Buddhist saying recently and have it pinned on the board by my desk:-
"Do not grieve for the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present and make it so beautiful that it will be worth remembering".
Whilst it's hard, I just try to live in each day, but I also make plans for the future.
That certainly isn,t my experiance at all and iv,e met many people with bc over the years who every day think about it in some context or another they might not talk about it all the time but they think about it.
How can anyone with a life-threatening illness never give it a second thought, i for one don,t understand that! i think it is devastating and she might not be that knowlagable (hope i spelt that right) about all the different stages and grades and types of bcx there is mabe if she did she would think differently. Anyway i suppose everyone is different please don,t compare yourself to her you are worried and thinking about it and i think that is completely natural. I first got
bc 17yrs ago with a recurrance over a yr ago and i have thought about it everyday since then.
I'm still half way through rads but do worry. My colleague is 2 years post chemo amd still worries over every little ache and pain. My son's MIL is 5 years past treatment but doesn't give it a second thought but then she isn't very knowledgeable about BC and just accepts what the doctors tell her.
I suppose if you want to know about BC and frequent these boards then you are aware of the possibility of secondaries etc. Who knows which is the right option. I NEED to know all the possibilities but I think I may have been more content just to bury my head in the sand!
My MIL had BC 50 years ago when they butchered you and sent you to the Radium Institute for a few weeks. She's never thought of it since and to her it was like getting over measles! She doesn't undertsand why I'm worried.
You're not in the minority. I just wish I could think of getting my normal (pre-BC life) back but I don't think it will ever happen.
Having said that - I wish I was 3 years out!
My friend had bc 9 years ago and right from the day her treatment finished she never thought about it again. REALLY!!! It never crosses her mind it may come back and she thinks I am obssessed with it.
I also know 2 other people who have had it who are the same and I am beginning to wonder if I am in the minority after 3 years . . . . . .
Love to all