What a lot of interesting and different views - I bet Granny Scouse hadn’t expected all of this! However I do understand exactly why the comment was made because I too am fortunate enough at the moment to have ‘cancer free’ days and by that I only mean in my head, not in my bones. I also understand that this will change and I won’t have ANY days where I can forget that I have secondary BC. However as this forum comes under ‘support’ I would like to add for BoneyL that once I got over the effects of chemo last year I have been able to live with very little intrusion on my life except for blood tests and bone strengtheners. I hope this continues for many years, like Belinda has, but am under no misconception that BC is unpredictable and we are all different ( not sure if that’s a double negative or something daft). My mantra since originally being dx with primary BC 5 years ago ( and then 2ndaries last year) has been Carpe Diem - seize the day - and I intend to do that as long as I can - even if it ends up being ‘seize the moment’.
Take care
I haven’t got secondaries, but make no apologies for writing as I do know what it is like to suffer, not physically, but mentally and emotionally when someone you love dearly is dying. Having days when you “turn a blind eye” or simply just pretend is not in the same category at all as trying to being brave or living life to the full or any of the tired out old cliches that we get hurled at us when we are suffering, probably to make those around us feel better. Its not being brave to be able to ignore/forget/repress the harsh reality of what’s happening, even for a short time, is just self-preservation. And for me, its a very healthy strategy that helped to keep me sane. However, I do accept that there must be those whose physical and mental pain and disabilities are too great to be able to blot out reality, but I think Maureen has got it spot on.
I have read through this and I see both sides of the coin. I have to say for me, having secondary cancer has as yet not ruled my life. Sure I have problems stemming from the treatments, and cancer is with me everyday as I see my bald head and weight gain in the mirror, the scars on my body from the various operations. When put my wig on or, take it off, touch the cancerous nodes to see if they have gone down after the last treatment, or feel so utterly drained at the end of the day, yes a hundred times a day it is with me, but, it hasn’t taken over my mind yet.
I am still working full time, I miss 2 days (treatment ones) in every 21 day cycle, I work the following 2 days from home. I am generally doing ok, this is not a brag I know woman all cope differently and I am in the very early stages, I wanted to write this for anyone who may read it and may get diagnosed with a similar progression, although of course we all react differently. You can get on and do the things you love in some cases.
However, I am well aware of my short term future, of the difficulties that I will face, followed by my death. But for now, I can choose to get on with my life and I also enjoy everyday in some way, I hope that lasts as long as possible.
For those further down the path, I cannot yet comprehend what you face, or how you cope with what cancer has done and is doing to you. I know there is a cliche tombola that people dip into to describe you (and me) and some find it annoying or indeed insulting. But if another person who has a reasonable level of empathy or experience feels you are strong or inspirational, that is becouse that person truly thinks that. Surely no offence is intended as if I choose to say it to someone, it comes from respect.
We must all deal with this s*** hand the best way we can, some get ‘lucky’ in how they respond, or cope, sadly some don’t. It sucks big time, but this is my life and I intend to love every day while I can and try to cope with the effects while I can. Eventually I will be unable to so I better get on with it now.
Respect to all woman (and men) who are trying to do the best they can with all this.
Nikki
I wonder why ‘living life to the full’’ involves ignoring cancer? I don’t want to forget I have cancer.
Jane
We don’t have to think about cancer ALL the time. It is always with ALL of us and heaven knows it dominates too much of our time. As I walk through a crowd into Tesco I am thinking ‘I’m going to die of cancer’. As I survey a cinema full of people I am thinking ‘I’m going to die of cancer’. As I watch my children sleep I think ‘I’m going to die of cancer’. I’ve been thinking about this thread all day and I’m annoyed (and very grouchy as family will vouch) that cancer has stuck in my head to the degree that it has badly affected my otherwise OK day. Why can’t I have time when I don’t have to think about cancer? I’ve spent days on end at the hospital in the last few weeks. I’ve spent hours on cancer forums. I’ve participated in two trials. I’ve done my bit as far as I can see, in being part of a cancer community and I’ve given cancer more of my limited time than it merits. If I want time off from cancer I will have it, and without feeling as though I’ve succumbed to the pink and positive brigade. I know my current health won’t continue indefinitely (as others have also said) and I have a very strong need to carry on living as normally as I can for as long as I can. I want my children to remember me as a fun, interesting and normal mum. I can’t do that if I have to become a cancer martyr.
I do appreciate that there are many women on this forum and elsewhere who cannot enjoy the type of things I still do with my life and I am so sorry and angry, that women are dying all around me, but I have to carry on living well while I can. I’m so fed up with having cancer thrown at me from every angle, I feel as though someone is knocking me into the ground with a hammer which screams ‘cancer, cancer, cancer’ at every thud. I’ve really had enough.
Perhaps this should go in the RANT forum… for I feel a bit better now 
Jennyx
Hi Jenny, I too was thinking about this thread today…I also turned my laptop off and put it well out of easy reach at lunchtime and had an afternoon and evening off from visiting my usual bc sites…I think I spend much to much time focussed on this rotten disease and after having a lovely afternoon (it was a half I don’t have cancer day) I’ll try and put the laptop out of reach more often.
Take Care,
Belinda…x
Hi Jane,
I do want to forget I have cancer now and again. But I can’t. It doesn’t matter where I am or what I do, it’s always with me. But, I do manage to put it to the back of my mind now and again. If I couldn’t do that I’d end up being a very miserable person, which I can’t afford to be because of my kids.
Peggy x
Hi Jenny,
like you the fact that I have cancer keeps popping up when I am doing things or going places. Yes, I am still fairly well, but that could change very fast. I have whole conversations in my head wherever I am, arguing that I am dying of cancer, I won’t see my daughter getting married, my son get a degree, I won’t see my grandchildren. In the end, the only way I cope is telling the cancer…yes, you will get me in the end you b…d, but you ain’t getting me yet!
Maybe a naive way of coping, but it helps me.
Peggy x
Tricky one this. I suppose I wish that they had operated on my spine when they detected the cancer there, but it seemed stable so they didn’t. Glass half full I can walk. Glass half empty only a short distance and not for long. No more badminton or long walks, meant not being able to join my friends in these pursuits, which I loved.
Most of the time I deal with it, although I sleep an awful lot and cannot do too much, the killer for me is probably not seeing my granchildren, but also I have had the opportunity to experience great love, warmth and care from my friends and family, which I wouldn’t ordinarily have experienced. I know I am much loved - I’m not sure I really knew that before, and it’s a wonderful feeling.
Of course I wish I didn’t have cancer, who doesn’t, but I’m damned if I am going to let this take one more day away from me that it ordinarily does.
Belinda, I agree, sometimes you have to get away from these forums, to find a place which isn’t totally cancer full. I hate those damned adverts personally.
Do I have cancer all the time, maybe, is it a bad thing? Well actually I experience people who go out of their way for me, forgive me easily for any stupidity, and make sure I am ok wherever I go. So no it’s not always a bad thing.
Celeste, that’s a really lovely post, made me think a lot and sums things up beautifully
It’s a tricky one for me too, because I’m so newly diagnosed with mets and bc simultaneously. On the one hand I think about it constantly because it’s still all so new and I’m probably still reeling from the shock. On the other hand I don’t feel terribly unwell by any means and apart from the odd ache and pain I’m not really debilitated by it in any way, so in that respect I can have mostly ‘non-cancer days’ in the sense that I can get out and do most things that I did before. But just because I’m doing those things and being bright and chirpy with my friends and family (most of the time) I can’t stop the internal monologue for more than a few minutes 
I empathise with so many on this thread and there is a huge amount of clear thinking going on here- I’m really glad you started this thread Maureen. Everyone’s honesty reflects what is is like to live with metastatic BC, at all stages. It’s as if everyone has taken my thoughts and written them down for me.
Anne xx
Hey everyone
You have all summed it up so perfectly and thoroughly exactly what it’s like. Yes, it did start off as a light-hearted thread. “Internal monologue”. How very true that is. Mine keeps saying “I’ve got cancer I’ve got cancer”.
But … as I’ve always said, every cloud …
We took the grandchildren to the theatre on Saturday evening. Now that definitely stopped the internal monologue, and we had the best of times.
Another realisation hit me … VIP PARKING!! Forget Disability Parking, it’s VIP Parking! Not for us the long trek to and from the main car park. And all that space around us to open the car doors fully. I’ve had the Blue Badge for three years and always thought Disability, but no longer. We’re all VIPs!!
Good luck to us all.
Maureen xx
I have wanted to contribute to this thread but held back because my experience is not the same as most. I know each persons experience is going to be different from the next one but because it has been so long since I was first diagnosed I am posting with the benefit of hindsight. So… trying to recall from a very dodgy memory 
I do recall on the first dx how for me it was as if there was a spiral going up from my head with the word cancer going round and round endlessly. Then gradually came the realisation that maybe I had gone an hour or two without being aware of it. The gaps would lengthen and maybe a whole day when I wasnt constantly aware. I also recall walking down the high street wanting to shout at every passer by 'I HAVE GOT CANCER!!! That was 19 years ago. On each new dx in 1996, 1997, 1999, 2001 & 2002 it was more a sense of numbness until the shock wore off but by the time I was dx with secondaries in 2002 it had become so much a part of my life that it has been absorbed into everyday living. I am never ‘not aware’ and until a year ago life went on with some sort of normality. I have had to accept now I think that I am not able to do nearly so much. But during those years - I took my cancer on holiday with me to some wonderful places but it didn’t dominate. It just lives with me. It maybe because I have lived with it so long that I don’t get angry or upset but have learned to live with it, but with a sadness now as I become less mobile.
So thank you Maureen for starting this thread and enabling a lot of us to dig a bit deeper and talk about our emotions here.
Dawn
xxx
Hi Dawn
We don’t always agree(!) but I think what you have said here is absolutely right. Cancer goes on holiday with me too, and to the cinema and the shops and…and…and…
I don’t think anyone experiences cancer just as individuals in a vacuum but always, always in a social context in which there are certain expectations and judgements made of cancer pateints and how they (we)(I) are supposed to behave. It seems to me that the wish to have non cancer days arises from these social expectations where ‘lving life to the full’ ‘getting on with it’ etc etc etc ad nauseum are admirable characeristics to which people with cancer are supposed to aspire…and get heavily praised for. (by contrast ‘dwelling on it’, ‘being miserable’ meet rank disapproval particularly if prolonged.) I wrote earlier that I don’t want to forget I have cancer, and I don’t. I hate the way cancer gets syphoned off as ‘wicked’ ‘evil’ ‘unfair’ ‘cruel’…no one uses these adjectives of heart disease so why of cancer? Despite the apparent openess about talking of cancer, despite the fact that it appears there isn’t a stigma attached to having cancer, actually there still is, and each of us internalises this to some extent as we struggle to live up to the expectations of what living with cancer is supposed to look like in 2009.
I think over time my predominant feelings about living with cnacer shift and change. I’m sad too, and also still angry and upset but probably differently from the early days. I do have cancer every day and this is not about how far ‘along the line’ I am but about how I want to reflect upon and talk about cancer…and how I want maybe to shift some perceptions about it.
Jane
Jane, I agree with you that cancer is often seen as an outside entity, like a nasty invader, intent on destroying its host, whereas it actual fact, its just cells that have gone wrong. I do think also there is still a stigma attached to having cancer in the sense that people still link it immediately to death, whereas that is definitely not always the case. However, I disagree that other debilitating conditons are not seen in the same light - my father was completely disabled with rheumatoid arthritis and oh boy, did he curse it and call it all the names under the sun. I don’t think he was ever able to forget that he had arthritis because of his gross disabilities and terrible pain. But going back to the point Maureen raised initially, being able to switch off from the worries and fears for just a few hours is vital.
Maureen,
read in ‘chit chat’ that you have a bone scan today. Wishing you well.
Debsxxx
WhenI was first diagnosed with BC in Jan 07 somebody told me to …
remember that cancer is a WORD not a SENTENCE.
I held on to this thought during the next year of treatment and after a clear mammogram in Jan 08, foolishly, began to think that it may all be OK. I did the race for life in May and was full of positivity.
Then in July found out that I have secondary mets in my bones.
That was the day that cancer bacame a SENTENCE, not just a WORD.
I do have cancer every days though I try not to let it dominate my life.
We are all in the same boat, all we can do is cope, each in our own way.
It sucks but what choice do we have…none.
Love and hugs to all x
I wanted to post on here because I have met Maureen and think I know exactly what she was saying and the reason behind it.
As far as I am aware, I don’t have secondaries, but the worry and thoughts that I have are never very far away. It is 2 yrs and 4 mths since my diagnosis and it has only been in the past couple of months that I have been able to think less about my illness.
I say less because I do think about it everyday. I liken it to a bereavement. When my Dad died I was inconsolable, in time I cried less, though even now after 10 yrs, I can feel terribly sad when I remember him. BC has affected me in the same way.
I have terrible, bad, ok, good and great days now just as I did before BC. On the good days I am so glad that BC is not in my thoughts as much and I can totally relate to Maureens up beat comment. And what is wrong with being positive? I agree that some people use this quote too much when directed at a cancer sufferer, but if you feel positive, surely that is a good thing.
I know that Maureen has had a rough time recently and I hope she doesn’t mind me saying this, but if she wants to be positive today and negative tomorrow, that’s her perogative. For some of us, being positive really does help us to move on with our lives.
Having said all of that, I am no longer seriously ill, I often feel unwell, and struggle with my head, but don’t have the same level of worry and treatment regimes that some of you ladies do. I have lost 3 good friends to breast cancer and so I hope I understand that it is far from a walk in the park. I’m not sure if I am saying the right things now So I think I’l finish off.
I don’t know if this will make you laugh, cry or roll your eyes but I’m going to say it anyway! For around 3 months after my diagnosis of metastatic BC from the start, I felt as if I had a horrible dark shadow sitting on my right shoulder (a bit strange, I know). At times, I used to feel quite desperate that I was going to be stuck with this ‘thing’ that felt rotten and heavy like a dead parrot(!) for the rest of my life.
Eventually, I just had to stop feeling so desperate and said ‘well, if I’m stuck with this thing then I’d better take some control over it’ and started to call it my cancer. For some reason that seemed to help because I then started to treat it with the disregard that a very unwelcome guest deserves. From then on, I thought about it a bit less and decided to enjoy some good days in spite of it.
I know I’m lucky because I responded to my first line treatment and everything shrunk quite nicely. My symptoms are few but I also know I’ll be reminded one day that I have this burden. Until then, I am going to try not to paralyse myself with fear.
Anne
Well, here I am on the 1am wideawake shift - another of those cancer bonuses. I’ve been lying awake pondering this thread and the different ways we all find to cope and it strikes me that it’s a bit like living in a Thomas Hardy novel - the heroine struggles through all sorts of trials and tribulations and seems at last to be on the path to some sort of tranquility - but you know the author has a nasty surprise up his sleeve! The fact is that we all know that if we feel good today we might still feel good in two years, or three, or even five - or we could be dead in a few months. You can put it out of your mind for hours at a time but it will always reappear - and be all the more shocking because you have forgotten for a while. So we get down - who wouldn’t - but we each cope in our own way. My way might not be your way, your way might not be mine - but surely we can each claim the right to deal with this in our own way - whether realistic and acerbic,pink and fluffy or with a dark sense of humour.
BTW I heard a radio interview this morning with a friend I met on a Macmillan course over a year ago (a big tough lorrydriver) He was given 6 months to live 2 years ago and strode into our first meeting in his motorcycle leathers and burst into tears. His way of coping since then has been to raise £30,000 for cancer charities. He has stopped treatment now as he has always said that when the QOL was not good enough it was time to go, but although cancer has clearly been part of his life for the last 2 years I think he feels that he has managed to shake off that dead parrot (such a good image Anne!).