You can never become too complacent

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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

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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.

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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

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Olivia07,

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

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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

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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.

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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

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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

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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

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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

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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

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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!!

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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

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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

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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

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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

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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

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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

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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

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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