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You can never become too complacent

47 REPLIES 47
karen
Member

Re: You can never become too complacent

cathy,
Thank you for your reply, unfortunately my aunt does not have a computer......but I will offer her to come and use mine if she wants, so she is able to read other peoples experiences etc., with secondaries and their treatments.
Unfortunately because of the how long ago my aunt was originally dx she does not have a breast care nurse [ they weren't available then ], also. although being in a position to be entitled to do so, she refuses to be put intouch with a Macmillan nurse and also refuses to claim DLA or any other benefit she's entitled to.

Take care
Karen x

KatherineM
Member

Re: You can never become too complacent

karen

i am sorry your aunt has had this difficult news.

Everyone has to make their own decision on whether or not to have chemotherapy - but maybe you could point your aunt here to see that there are numerous women on the secondary thread who have had repeated chemos and are still here and still enjoying their lives,

cathyx

karen
Member

Re: You can never become too complacent

My aunt, who I mentioned has bone secondaries, diagnosed 15 years after original BC dx, and who had an endoscopy recently to find out the cause of her unability to eat very much and severe weight loss had the results of the endoscopy yesterday....I was a bit confused at first because of the way my mum relayed it to me....but after speaking to my aunt it woud appear that, from the biopsies they took when doing the endoscopy [ which also showed up alot of severe inflammation ] that my aunt has breast cancer cells in her stomach now too, they were expecting to find a mass but found cells,.
Her medical team are having a meeting tomorrow to discuss which way to proceed now and my aunt has been told that chemotherapy will probably be recommended [ she never had it originally ], however my aunt is quite adamant she will not go through chemotherapy as she does not feel it will prolong her life.....I have said to her to wait and see what oncologist comes back with first and then look at quality/quantity etc.,
She did ask if this would considerably shorten her life and was told ''yes''.

As you can imagine my aunt and all the family are distressed by this news.

Karen

karen
Member

Re: You can never become too complacent

Hi Lynn,
Thank you for your kind wishes.
I know you suffered a great deal with losing your sister.....thankfully her last days were calm and peaceful....as were my friends when she died 2 yrs ago....there seems to be more dignity when spending your last days in a hospice rather than an hospital.

I think most of us share your fear of a painful death.......and you are so right....when it comes to the end it doesn't matter how famous or rich you are.

I hope things are remaining stable with you, will e-mail you.

Take care
Karen x

aroma
Member

Re: You can never become too complacent

hi karen ,so sorry to hear about your friends reacurrance ,it always hits hard dosnt it when you think its going to be ok then it creeps up on you again . my sister died with real dignity ,in a hospice ,she had bowel liver and stomach involvment ,and her last days were calm and very dignified ,she was dreading this part of her journey ,but slipped away peacefully . i hope i can show the same bravery when my time comes as it sure will with my liver secondaries ,but as you say we are all going through this journey and nobody knows who will pit stop on the way ,im dreading it im not afraid to say ,its not the being dead its the getting there that freaks me out .all this media pap about pink etc really gets to me ,hey run a few less miles and you can beat cancer ,my ass !!! NOBODY not even famous people have special privaleges when it comes to the end .
and jane i wept reading your posting you tell it like it is and honesty is what we all need to hear .i wish you strength in whatever comes ,keep telling it like it is . much love to all and especially your friend karen .
lynn xx

karen
Member

Re: You can never become too complacent

nixxic,
Thank you for such an open honest post.....again a refreshing [ not sure if thats the right word ] to hear from someone who also feels like me. I lost my friend when she was 45...not even 2 yrs post dx and leaving behind 2 daughters, a husband and a father to whom she was the only child who had also lost his wife [ her mum ] to breast cancer 3years previously.
Please don't apologise about having a rant......thats what this thread is all about....us voicing our fears and anger.....and finding out we are not alone in how we feel.

My aunt will get the results of her endoscopy on tuesday.....dx with secondaries 15 yrs after original BC dx......she is losing suffering a drastic amount of weight which there seems to be no explanation for.........another reason why I don't complacency!

karen

mazaroo
Member

Re: You can never become too complacent

Hi all ....I am one year on and I agree that the fear never goes away ..I think about it every day ....I do try not to let it interfere with my life as what happens happens !!!But every ache pain lump bump cough there I am thinking the worst !!! I should be ashamed of myself wghen i read some of the posts when it has recurred for somepeople many tears on ...my mum in law was one one and unfortunately she did pass away .My doc and BC nurse have told me that I wont habe an ultrasound until 2 yeras after first dx ..have just had a physical exam at my fist anniv appt .Cant say that I was very reassured !!! I cant make them give me one can I .
I have awful bone pain but he dismissed it as osteo arthritis going on the results of my bone scan last year !! Am i being paranoid .I really do take notice of the advice on here and if someone wants to tell me to get a grip and give me a kick up the backside then please feel free

Maz xxxxxxxxxxxxxxxxxxxxxxx

ForumMember
Member

Re: You can never become too complacent

Sorry Lucy just me having a vent I apologise for any offence.

Love Nikki x

ForumMember
Member

Re: You can never become too complacent

Whenever I feel alone with my despondancy along comes JaneRA to really say it as it is and how very very real the threat of premature death is to this disease.

Jane again I salute you my darling for saying how it really is, I have lost two close friends lately to this disease some who had "better" prognosis than me at initial diagnosis, the whys and wheres of this illness never fail to scare the living sh*t out of me even though I am now 5 years post diagnosis and supposed to be "cured".
I had a crap prognosis (multi node yada yada) and was told I would probably be six foot under by now but Im still here hopefully NED but still worried sh*tless, the fear creeps up at weird moments sometimes, like if I am shopping in the Supermarket and I see mums with thier children I want to cry into the frozen peas....I still say "why me?" and "its not fair" because in all honesty its bloody not!!.....the thing thats grates on me the most though is the fact I see some 90 year old b walking about who were quite horrible in thier time yet don't have a damn thing wrong with them, I am in no way religous but when I get up there (be it sooner or later) I shall have words with that God bloke, we are all sent this as a "test" and to show us a better meaning of life? what a load of crud...I was happy before cancer came barging into my life, I needed no tests or eye openers to see how my life was going, I always saw the good in people and tried to live a good virtous life.....so have I passed the test? why did my close buddy just die aged 36 with two little children? did she fail?

I am not in your shoes (yet) Jane but I am always aware that maybe not now but 2 years or 10 years down the line I will be the next on the conveyor belt of metastatic disease, all I suppose we can hope for is better treatments to come along which can prolong our lives more, but by being prolonged I dont mean with endless sufffering and indignities as some cancer treatments can induce.

I am so fed up of my husband and all my family saying "oooh 5 years now your cured".....please tell that to the many brave ladies who battled before us and are now dead, the "laymen" don't want to see it that way, they want the pink pom poms and ra ra ra....cancer never goes away once it gets you, be it physically or mentally I just wish more people would understand that and more doctors would work on finding ways for us cancer limboists to get back our bubble sometimes...

Thanks Jane your a true honest person who says it exactly how it is

Love Nikki xxx

karen
Member

Re: You can never become too complacent

AnneTh,
I did catch your original post......you most certainly have been and still are going through the most of awful of times...to be diagnosed with cancer in so many places right at the very beginning of diagnosis must of been horrendous and very frightening.

The fact that you have still managed to find the world a beautiful place after all you've been through is very admirable and I take my hat off to you to be able to do so.

I know you said on your original thread that thought you were 'probably going to anger some of us by your post'....please don't think that.....you have as much right to voice your thoughts on dealing with this disease as any of us.

I hope you are still having a ''good day'' and hope you have many more too.

Take care
Karen x

ForumMember
Member

Re: You can never become too complacent

The Cancer Reform Strategy has a lot about palliative care in it and the Gold Standards Framework has been in existence for a while now which gives people the opportunity to decide where they wish to be at the end of their life (where possible).

Also, there is something called the Liverpool Care Pathway which kicks in once you are at the end of life.

There's still a long way to go but I am involved in quite a few palliative care meetings that are happening in our Trust and also at our Centre of Excellence (went to one yesterday). The really interesting thing yesterday was that out of the 36 people present (I was the only patient) they all saw palliative care as the patient being on the ward right from the start and hadn't thought of the fact that a lot of us with advanced cancer (especially breast cancer) don't always start as an in-patient at the beginning of palliative care and are seen within an out-patient environment and they hadn't considered that!

They are looking at trying to engage patients at the beginning of palliative care about some of the really difficult issues although that also throws up some other ones as was highlighted yesterday - what about those patients who have dementia - they are never going to have that talk with them so it probably then falls to talking to the family (if there is one).

They also felt that it's a culture thing. One of the consultants there was a Sikh and she said in her culture dying and dealing with someone who is dying isn't a taboo subject.

AnneTh
Member

Re: You can never become too complacent

Btw, I'm obviously having a good day today! on a bad one, I'm a lot more grumpy and unpleasant!!!
My most recent scared patch was a few weeks ago and I just cried on and off for three days, I didn't think I could trust myself to go anywhere or talk to anyone without bursting into tears- sometimes it's so confusing and hopeless. But thankfully, not today.

karen
Member

Re: You can never become too complacent

Look forward to that post Jane.

Skimum....can completely relate to how you feel and I'm 4 1/2 years from dx.......I have had 'brief' intervals of complacency....they don't last long as I soon remember this disease is unpredictable...especially with my friends death, my other friends secondary dx, and the fact my aunt has bone secondaries.. she is suffering severe unexplained weight loss to.

Karen x

AnneTh
Member

Re: You can never become too complacent

Just wrote an essay but have deleted it. Even though I had to face really bad news at my diagnosis and looked at the end of my life, I don't know what it must be like to have treatment but to know that there is a high chance of the cancer returning.
the only thing I'd say is to try not to waste what precious life we have left in fear- the world is still a beautiful place. Hang on to hope - it doesn't matter what you're hoping for but let yourselves believe there is something to hope for, no matter how small it is.

JaneRA
Member

Re: You can never become too complacent

On the subject of living wills.....

these are now known as advance directives and coincidentally I spent an hour this afternoon talking about mine with a palliative care consultant. I'll post more about this when I've sorted out excatly what I'm going to say. The consultant said that since the new Mental Capacity Act 2007 and a new NHS strategy on end of life care more people are looking at these. It was a really good meeting..I'm impressed by everything I've seen of my local hospice care services so far.

Jane

ForumMember
Member

Re: You can never become too complacent

You have just summed up how I feel Skimum. I am the same length of time from dx as you and face the same problems.......god it's tough. For some reason I'm going through a really bad time at the moment, everything is black.

Sheana x

skimum
Member

Re: You can never become too complacent

I find that now 2 1/2 years after my diagnosis and poor prognosis, I'm supposed to be 'over it' and back to 'normal'.........my cancer is now yesterdays news and somehow even those who sat with me when I was told that I was at high risk of developing secondaries and should live each day etc etc seem to have forgotten......
What I would like is for the people around me to acknowledge how difficult it is to move on and not to worry. I hate living in fear, wondering if and when it's going to come back and how long I'll get if it does. Breast cancer doesn't just leave your life when treatment finishes, it hangs around......sometimes I feel strong and able to cope, other times I don't do so well but always I put on a 'brave face' for everyone.....why???
It's hard living life with fear and uncertainty.

karen
Member

Re: You can never become too complacent

suzan...Thank you....it is very refreshing to be able to voice of all of these things...and to get such wonderfully honest replies....and also to know I'm not the only one who feels like this.

Karen x

suzan
Member

Re: You can never become too complacent

karen so glad you started this thread, such a relief to voice your fears out loud and not be afraid of other peoples reactions. best wishes suzan

karen
Member

Re: You can never become too complacent

I am also afraid of end of life stage...I watched my friend go through this 2 yrs ago.....she tried to retain as much dignity as possible..and died in an hospice...where fortunately she was able to regain some dignity.
However seeing the suffering she went through.....the bloatedness, the loss of understanding and comprehension, the loss of mobility, the loss of speach, the pain, etc., has made me seriously consider writing a 'living will'..[ I think thats what their called....think Jane knows alot about these ]......my concern is though even if I write one will it be adhered to?

Karen

suzan
Member

Re: You can never become too complacent

jane once again you have set me thinking, I also fear not that we will die as you said there is nothing you can do about that but its the will I keep my dignity, will I have to rely on other people, all those treatments and side effects to give us a bit extra time. I know this is a depressing subject but perhaps by admitting it to ourselves and others its just another thing we can discuss and help each other with. love suzan x

JaneRA
Member

Re: You can never become too complacent

Just a PS really to thank you for your responses.

I suddenly had an aha moment last night (which coincided with a 12 hour unexpected downturn on the chemotheapy side effects) that actually what I fear really is not dying...not a lot I can do there...but declining health and chronic illness, more treatment side effects and all that horrible stuff which accomapnies end stage cancer.

Something else not talked about much.

I'm so pleased if anything I have written gives others a space to feel OK about their own similar (or not) thoughts and feelings.

Jane

snowwhite
Member

Re: You can never become too complacent

Jane - that was powerful.

AnnaG
Member

Re: You can never become too complacent

Thanks to all who have posted on this thread. It's great to have somewhere where we can be completely open and honest about how we are feeling, without feeling guilty about it, or receiving judgement for being negative. Somewhere we can drop the "brave face" we wear most of the time.My best friend is annoying me by saying" just two more weeks of rads" then you're finished, won't you be glad?". For me, I'm thinking ahead to my first consultation, and all the questions I still have,and I've been blunt with a couple of others who've assumed I am cured.

After my surgery I felt fairly "positive" about my cancer being found and treated, and that I would be "alright" after that. Now, half way thru' rads I am feeling very unsure about my future life span.
I am angry that not enough seems to be being done to uncover why we have such a high rate of breast cancer in this country,and in the USA and Europe.
I wish less money would be spent on what I see as trivial, hedonistic activities, and war, and more on cancer research.

That's all I can say at the moment, as my daughter wants to use her laptop!

best wishes to all on here,

Ann G

suzan
Member

Re: You can never become too complacent

I can only agree with you all, and jane your honesty is so refreshing I always look for your posts to see what your opinion is as you say things as they are and I know it comes from the heart and with honesty.Living with breast cancer is very frightening and not a day goes by when I dont think of it ,if only there was a cure after 5 years but sadly I know of many women like myself who have had reoccurences after a long period of time and its living with the uncertainty that is so soul destroying, sometimes I just want someone to put their arms around me and hold me, I dont want anyone to tell me its going to be alright cos no one knows that, and I prefer janes approach, I can deal with that.At least we have each other for support and we can be honest among ourselves about how we are feeling, best wishes to everyone love suzan x

peacock
Member

Re: You can never become too complacent

I would just like to thank everyone for your honest and open replies, because I, like everyone else is absolutely scared s*******that my cancer will never go away. I am just starting out on the journey having just had 5 courses of chemo and I know I shouldn't, but I just keep thinking to myself "when will I get it again" "how will it come back"! I'm sorry that seems so negative, but who can honestly say that it won't return, develop into secondaries etc.

I am having chemo before surgery, so the cancer is still inside me, I'm also having radiotherapy after surgery and am having herceptin already alongside the chemo. I think I am being given the best shot possible at zapping this horrible disease, but I expect so did everyone else who has been in remission for a long time and then ended up with a recurrence.

How/why do some cancers develop into secondaries? Are they there already and get missed or do our bodies allow them to develop,if so why? is there anything to be done to prevent this? There is no one in my family that I know who has had cancer, so why me? What about the future for my daughters, and son?

I know no one can answer these questions because as Karen says, it is all so uncertain and whilst we have to get on with life in the best way we can, do we ever get over the concern. My own circumstances are much less traumatic than some of you ladies who have secondaries, so I feel very sorry that I am wingeing, I've got it easy compared to some.

It doesn't stop my worrying though.

PS sorry for whittling on - I am still battling a breast infection which has been with me now for several weeks and looks like its flaring up again, depite having a neulasta injection.

ForumMember
Member

Re: You can never become too complacent

I was dx in Feb 06 and I don't mind admitting that I'm sh*t scared.....every day.

Anyone who says that it's the 'best thing that ever happened to them' must have had pretty crap lives before being dx, and I tell you what...I had more than my fair share of sh*t before BC devastated my life and it is the worst thing that has happened to me.

Sheana x

ElaineD
Member

Re: You can never become too complacent

Beautifully written Jane-you have very eloquently said what many of us struggle to put into words.I wish you well.

alise
Member

Re: You can never become too complacent

Hi Karen and all

I totally agree - I can't bear the "Get on with your life now" or the "Cancer made me a better person" anecdotes - Karen you are right there is not one positive thing about it and it does make you a bitter not better person!

I was dx in dec 05 and my once told me that if you have no recurrence in first 3 years then "usually" you are Ok - the odds reduce considerably. However living with the uncertainty every day of every week it just awful.

Not a day goes by when it doesn't cross my mind and it is a s*it way to live!

Love to all
Alise x

karen
Member

Re: You can never become too complacent

Thank you Jane for such a well written post.....I know you are going through what can only be described as '' hell '' ....and adnire your honesty regarding feelings etc.,

I get sick of hearing stories of '' BC was the best thing that happened to me ''.....it wasn't the best thing thats happened to me......I prefer to read that someone is actually s++t scared and even years on finds living with uncertainty terrifing......I honestly can not believe that anyone can really think Cancer in any way, shape or form is the 'best thing that has happened to them'' or made them a better person...a ''bitter person;'' maybe!!

Its interesting to read also Jane that earlier scanning would not of made any difference to length of life...only length of time knowing you have secondaries...I didn't realise this.
My friend also said her surgeon obviiously didn't do a very good job of clearing her cancer cells......I was of the thought that's why chemo was given...... to try and mop any stray cells.......its amazing also how many people still believe if they get to 5 yrs clear their '' cured''......I'm always telling people that the 5 yrs thing means nothing and that BC can return anytime even years later.......but because of all the media stories which usually go along the lines of....'' and now after 5 years I'm cured''.....people don't realise this.......its not their fault...I didn't before I was unfortunate enough to dx with BC.

I'm attending a Breast Cancer Conference on 17th of this month where one of the topics is '' living with uncertainty ' will be interesting to see/hear the discussion on this.

Karen

lyndu
Member

Re: You can never become too complacent

Jane, thanks for your honesty, which is difficult to read, and it's difficult to make anything that feels like an adequate response.

But your writing (here and your web page) opens up the possibility for people to talk honestly, which is more bearable than some of the " there, there, it will all be fine", and, what I found more difficult, a woman I knew a long time ago who said that she did not regret having breast cancer as she had found so much good in people. At that time, she had secondaries and was running out of treatment options. I found it impossible to have an honest discussion with her, either about my feelings, which seemed trivial in comparison, or about hers, and I hated myself for ending up talking in platitudes. I had much more in common with another friend who said she felt a curious relief when her recurrence was diagnosed - "thank god at last the other shoe has dropped", she said.

You know how much you mean to many of us on this and other sites,

Lyn

ForumMember
Member

Re: You can never become too complacent

Jane,

((((((((((x)))))))) you don't know me but I wanted to hug you, hope you don't mind. I can't say...there, there it will all be better soon, or it will go away........so a hug is all I can offer. I thought you wrote a very deep, honest post and I admire you for it.

Sheana x

JaneRA
Member

Re: You can never become too complacent

Like chalee I am rather relieved when someone posts about being scared, about the fear of what next, about the fear of cancer returning, bottom line about the fear that cancer might kill..not them..or others, or our friends but 'us',,,or rather 'me.'

I think that those of us who choose to connect with others with breast cancer...in hospitals, support groups, on the internet, wherever, there is a particular poignancy and sadness when someone who we know, somone diagnosed at the same time, gets a recurrence, secondaries progress, or they die.

And the fear we feel is so little really spoken of...not in all those smiling pink survivor stories where even the token women with secondaries glow, talk about fear as a thing of the past, or the future...never of the now...such little lies it is easy to tell.

John Diamond, in C..Because Cowards get cancer too...writes that as soon as he heard his first diagnosis he heard a death sentence being passed...and that the various tretaments he'd had along the way just created temporary reprieves.
I feel much the same about my own cancer (and mine had a much worse prognosis at diagnosis than did John Diamond's at the beginning...he hit the c**p end of the statitistics). I had a very poor prognosis at diagnosis and within days I was reading John Diamond, and Ruth Picardie and books about dying and hosices..they actually gave me solace and comfort.I growled at people who told me the 80% five year stats...mine were always half those, I wept for my lost years, for my inevitable death.

I now see that time as my own very important preparation for the fear I was to live with...for the bad and the good times ahead. After 10 months of treatment I was still alive...I was still scared...each little cough, achy limb, mild pain...particularly anything on the right of my body...or a headache and I was worried...of course I was..people with locally advanced multi node triple negative cancer don't usually make 5 years. ( I have but the sword of damocles hangs for sure now) Check ups passed and it got easier...it really did...I was one of those good news stories which get passed aong the cancer grapevine...and on the day my regional incurable recurrence was diagnosed someone posted on this site about how JaneRA was all right now after a poor prognois...oops..premature my friends.

And so now my cnacer is for sure slowly killing me (being 'indolent' rather than aggressive) and my treatment options are running out and yes I am b***y scared...I makes no apologies, excuses or qualifications...I am simply scared...I cry...I know cancer will kill me...maybe in six months...maybe not...fantasies of a few years...doubt it..but maybe..cancer unpredictable.

I never liked being told 'not to worry'...what kind of avoidance is that. Worrying is rehearsal for the real thing. I don't like being told to 'live in the present' either. What makes each us essentially human and differentiates us from animals is our capacity to remember the past and to imagine the future...to lose that capacity really is the cruellist of things...and it is generally Alzheiemers the unfashionable disaese, not breast cancer, the fashionable one...that does that. It is tragedy dressed up as farce to celebrate living in the moment. Each of us makes plans...its just the timescales which changes.

It's complicated living. It's complicated and peculair living, knowing that your life is for sure forshortenened. Fear is one of the emotions which walks alongside me and I proudly hold her in my hands. My daily life is pretty pleasant right now, yes even on weekly taxol, ...lots of lunching, writing, visits from friends, a good relationship, no financial worries, (other than the banking crisis swallowing my savings too soon) some good stuff on the TV, a shelf load of new books, and a long line for getting the chemotherapy in. Fear is not out there, its with me, I have some awful so scared moments but a tab of larazipan and I'm back on track....I have had a good look at it...like I've had a good look at dying, and taking a look I reckon on agood day I'll just have to manage it and do it, and take as much help as I can.

Karen...I am so sorry to hear of your friend and of course inevitably it has stimulated your own feelings...but no one stays in the same place for ever. Feelings shift, change, the intolerable becomes ordinary and we do each find our own ways of living with the dross. And many many people do live for years with breast cancer and die in old age of somethign completely other.

And I'm sorry your firend is angry about her secondaries not being found earlier. Research has shown that earlier diagnosis of sceondaries makes no difference to length of life..strange it may sound but true...it does make a difference to how long you know of course...

sorry this is rather long

best wishes

Jane

karen
Member

Re: You can never become too complacent

Hi,
I spoke to my friend earlier...she came home today...she sounds very cheerful under the circumstances.
The one thing she is particularly angry/upset about is that if maybe we were scanned at check-ups her secondary cancer would of been picked up earlier......of course she understands as we all do that scans don't pick up cancer cells.

She sounds very positive at the moment and is determind to get through this..........she like many thought her risk factor was going down as the years went past..only to find out this wasn't so in her case.

pinkdove....I hope you continue to find relief from your pain and also continue to enjoy your life....your post was very moving and inspirational.

Karen x

ForumMember
Member

Re: You can never become too complacent

Hi Liverbird

I live in the flatest part of the country now - Cambridgeshire! But you'll never take the scouse out of me!

All my family are from Liverpool and I still have some of my family there. I think You'll Never Walk Alone holds a special part in Liverpool supporters. My brother was unfortunately at both the Hillsborough and Heizel games way back and it always brings back memories of that time to me. Fortunately he was okay but he won't go to a match now because of what he saw then.

That was a lovely thing for your friend to do re the season ticket. It's not very often I get to go up north - the furthest I go is Leeds most of the time now as my son is at uni there, although I do have my aunt at Burscough which is about 25 miles further north of Liverpool.

Not sure what the train connections are like from here up to Liverpool - I wouldn't drive as it takes about 3 odd hours (and would probably get lost!).

Take care.

x

Liverbird
Member

Re: You can never become too complacent

Arh pinkdove enjoyed ya post here.
I am rather an imaginative sort of person and i always think of my cancer as a monster who has been chained up, but who knows when the b*£ta£*, will find the key to those padlocks on the chains. For some its only months for others years and for the very fortunate decades.You made a decade.
Its my birthday on Thursday i am 47 and i dont think people in my everyday life understand that i am excited, every birthday is exciting, a bonus since DX.

Hey 'You'll never walk alone is fabulous. Brought tears to my eyes when you said it was to be your final song, bessie mate died March 2007 from BC liver mets, she was a season ticket holder for the REDS. when they played that tune for us to walk out too i just broke down.
I now have her season ticket in my name, think of her every game and at my funeral will have our theme tune.

Where do you live now? Why not come to one of our meet ups. Liverpool is amazing just now. off to the opening of phase 2 of the shopping centre and gardens tomorrow and fireworks later.

Rx

ForumMember
Member

Re: You can never become too complacent

I'm another one who had nearly 10 years of remission before finding out that it had spread to my liver and bones and also being told in 2006 that I had three months to live. Chemo has turned me around (much to the surprise of my oncologist and I've been on chemo since 27 September last year, as my onc told me on Friday!).

Well, so far, I've proved them wrong (as a lot of ladies on here have). Whilst I've got my pain under control at the moment I'm going to enjoy my life (which is much easier to do when you don't have the pain which I have had) so it's about enjoying the 'present'. I know it's easy to say and people do wonder that every ache and pain might be secondaries but also it's about 'living' not fearing life.

My feelings are that when the time comes that my disease has progressed I will deal with it then, not now. I've already had to deal with it once so have already got my funeral etc sorted and the hymns that are going to be used! I'm originally from Liverpool so want my final song to be 'You'll Never Walk Alone'. My uncle is an Evertonian and, tongue in cheek, said he wasn't going to go then!!

suzan
Member

Re: You can never become too complacent

I know exactly what you meanabout the fear of the cancer coming back, the first time around I got to know other ladies with a better prognosis who died and it upset me terribly, and sometimes at night I lay awake with my head spinning and every ache or pain is a new worry, I think the living with it is the hardest thing trying to find a way through it and still have some quality of life is very hard.I suppose we all cope in our own way and with support with each other at least we can discuss our fears with people who really understand us.There is no easy way but lets suppoet each other through this minefield. love suzan x

ForumMember
Member

Re: You can never become too complacent

Hi,

I hope you don't mind me posting too.

I was dx in Feb 06 and I go through phases of really worrying that cancer will come back. Sometimes I just get this real feeling that it's a matter of time before it strikes again. Two ladies who were dx at the same time as me, with better prognosis have both recently died from liver mets. I get terrified at times as I'm a single parent to two boys of 16 and 13 and desperately want to see them grow up.

When I used to read about breast cancer before I was dx, I don't remember reading about the fear that you are left with when the initial treatment ends. I got the impression in a way that, after treatment that was it. If you survived you got on with life and end of story but having been through it and now living it, it's very different from that. It's not unlike a recurring nightmare that comes back over and over and over.....

Sheana x

karen
Member

Re: You can never become too complacent

Liverbird.....Yes she is having Taxotere along with another chemo' drug according to her husband......she is on a trial too.
It kinds of hits you when one of your ' circle' has their cancer return doesn't it....can understand how you feel about your circle of '6 '...its the feeling of how much longer will my luck hold out isn't it. I hope your friend responds well to treatment. [ yes a chat on msn would be good ]

Thank you to everyone else who's replied too.

Yes I find it a relief when there ae posts of fear of cancer coming back too.....can also appreciate your comments suzan re enjoying our lives and not letting it beat us.....though sometimes its not so easy to think like that....[ not for me anyway ]

suzan, chalee. ElaineD and Olivia07...I wish you all well with your treatments.

Its such a relief to be able to talk to people who understand my feelings.

Karen x

suzan
Member

Re: You can never become too complacent

hello ladies I too went nearly 18 years when I was diagnosed with a tumour in the same breast just was beginning to think it was behind me.Have had mastectomy and chemo and am starting the whole trail again, somehow we have to live with it and still enjoy our lives and not let it beat us.best wishes to everyone. suzan

chalee
Member

Re: You can never become too complacent

Karen, I find it a relief when someone posts about their fears of cancer coming back. It's something we all worry about. It is important to use this forum to talk about things you can't discuss anywhere else. And 'Living With Breast Cancer' is exactly the place to put your story. I wish you and your friend the very best of luck. x

ElaineD
Member

Re: You can never become too complacent

It certainly is unpredictable. I had 12 clear years, and was literally just beginning to think ,"maybe I'll be one of the lucky ones". Was then diagnosed last Novemeber with mets to pleura, liver and bones. Frighteningly, this was discovered by chance, as I felt very well-a comment made to my gastroenterologist who monitors me as I also have the BRCA2 gene misprint, lead him to send me for a CT scan, which showed the lung mets.

I hope your friend responds well to treatment-there are such a lot of treatments available now for metastatic disease, that it can be controlled succesfully for a long time.Good luck to her.

Liverbird
Member

Re: You can never become too complacent

Hi Karen
I know how you feel as you prob read my post on current issues.
I spent last Thursday sobbing. The 6 of us who were operated on DEC 2005, are great friends. The baby in our group was Dx with bone mets last Thur. Poor love is now off on a 2 week hol was so excited about it all summer but she goes off to hol with knowing she has bone mets and on return has to have a liver lung scan too see if there is further spread.
I can tell you she was the 'positive' one out of us all.
I am writing down my thoughts just now and i titled it 'When it all comes tumbling down' Just feel for us 6 it could be the start of this disease re-occurring.

Is your friend having taxotere? I would be terrified of that as quite a few people i know are very allergic to it.

BC is as you said so unpredictable.

Pity help me though my GP treats every pain as 'muscular'

thinking of you and noticed ya on my yahoo if ya want a natter on messenger.

Rxx

Janeyb
Member

Re: You can never become too complacent

Olivia07,

Good to hear from you - I seem to remember you from when I first got my diagnosis 2 years ago.
janeyb
x

karen
Member

Re: You can never become too complacent

Thank you olivia07.......my aunts came back as bone secondaries after 15yrs...as you say just when maybe you start to think you may of beaten it.

Heres to your next 17yrs Olivia07!!!!!.

Karen x

olivia07
Member

Re: You can never become too complacent

Karen - what very sad news and I do hope your friend will be home soon and helped greatly by chemo. I agree totally with you that one should never become complacent about BC. When mine came back in the same breast after 17 years I was shattered as part of me thought I had beaten it but am hoping for another 17 years. I would love to see statistics of how many people with BC die of other causes - ie old age would be very acceptable to me!
How lucky we are to have this site. I send you a big hug.

karen
Member

You can never become too complacent

Sorry if this depresses anyone...not sure I've posted in the appropriate place either....But I'm feeling so sad and shocked. I've just had a phonecall from the husband of a friend I met whilst having chemo 4years ago..we have stayed in touch and met up once or twice a year......sadly her cancer has returned in her spine and liver....she found this out within the last few weeks....she has just started chemo' but unfortunately has had a reaction to the first dose and is currently hospitalised......I was only thinking last night that she is nearly at her ''5 years ''.....its brought all the old feelings back.....I knew you should never become complacent about this disease....but I'm sure my friend was thinking as many of us have/do that the cancer was almost behind her.....breast cancer is so very unpredictable though.
Hopefully my friend will soon be home and will find some relief from the chemo'.

Sorry just had to write my thoughts.

karen