I was diganosed in June 07 and had 6 TAC 30 Radio and Herceptin. In early Feb 09 I was diagnosed with secondary to my spine. You know what I’m fed up.
I have 2 beautiful boys now 13 and 10 and I genuinely believe if it were not for them I’d jump in front of a bus.
I have been on constant treatment since dignosis with Herceptin and now take Xeloda.
The sad thing is there is no happy ending. It will end with me dying a horrible death that will probably frighten my darling boys into a miserable life without me.
My husband is ‘business as usual’ and genuinely believes we can got on top of this. I wish I shared his optimism.
So sad and only 39 - life is hard,
MuddyXX
Hi muddy
No wonder you are sad. Having secondary breast cancer at 39 and with children is just about one of the saddest things which can happen in this society. I think there are many pressures on people with cancer to ‘fight’ and ‘be brave’…which make living with advanced cancer even harder.
There are ‘good news’ stories on this site of people with her2 breast cancer and bone mets living a good few years. I am sure some of them will respond to your post.
I know those fears of dying a horrible death but personally I have found my local hopsice nurse really helpful in talking about end of life experiences. Do you have a MacMillan or hospice nurse? (It doesn’t mean you’re about to die…many people see their Macmillan nurse for a long time prior to their deaths. Or have you thought of counselling…either just for yourself or with your husband? I think its very hard when those closest to us can’t understand or acknowledge the reality we are living with.
I don’t have bone mets and at 60 I’m uch older than you (no children either) I have incurable regional recurrence so know those deep dark fears and feelings. I can’t make you feel better but I hope that knowing others feel sad and desperate like you might help a bit.
best wishes
Jane x
Hi Muddy
I was originally dx in June 2003 and went almost five years (the magic number!) before having bone mets diagnosed. I’m 43 and have a 2 and a half year old. In my darkest moments I think about how much of her life I won’t see. What will I/won’t I make it to? I really don’t think I’ll see her into university (that would surely take a miracle) but will I be there for her school exams, first serious relationship, her first periods, starting secondary school, sh*t - starting primary school??? If I die too soon she won’t even remember me.
I hate the uncertainty of, well, it could be years and years … (I’ve just had a hip replacement operation, so they must be thinking I’ll survive long enough to have made it worth all that) … or I could get further spread and die within a year.
On the other hand, perhaps it’s for the best not to know.
On a different thread I mentioned that I’ve decided to think of my life in chunks of three, and really focus on what I want to achieve within the first three years, then if I’m still around I can look at goals for the second three years, and so on. Early days yet, and not sure how helpful it’s going to be for me, but it IS making me focus on making things happen.
I don’t think of myself as being ‘brave’ - I’ve just been dealt a sh*t hand and have to make the most of it as I firmly believe that this is all there is. And I know this may sound crass, but I am conscious that there are a whole load of people who have it far far worse than me.
Alison x
Hi Muddy,
non of us can blame you for being fed up, angry, sad or any of the other feelings you will have. We all have them!
I hate when I read of another young woman having a secondary diagnosis it is so cruel.
I have had my bone mets for 5 years and at the moment they are not causing me any real problems. Last year I had radiography to hips, top of spine which seems to have worked. I could not get in the car Ian had to let the roof down first. Not good on a rainy night! I have pamidronate every 3rd week and that has helped as well. I did meet a lady in clinic who has had bone mets for 10 years and she is doing well, plus others on this forum. So I hope they will come and share their story with you.
Take care.
Love Debsxxx
Oh I know what this feels like. I was 42 when first diagnosed and 47 when I found out I had bone secondaries. My kids were 16, 14 and 9 at my secondaries diagnosis. I too cry over what I think will be lost milestones - seeing my kids get married, seeing my little one do her GCSEs, even seeing my oldest graduate in 3 years time. I have had two years with secondaries now and it has been a slow march downhill. First bones, then nodes, then liver and now a suspicious spot on my lungs.
I have been on xeloda for the last 5 months and at the last scan it was working. But the scans come around too quickly for me. There is another one due next week and I just dread the results.
In my fantasy world there is a cure around the corner, or at least something else that will keep us stable for longer. It’s not impossible. Sadly, the two trial drugs I have been on have given me no hope whatsoever. It’s so hard to stay positive.
Then I hear about women who, even with many areas involved, manage somehow to stay alive for five, ten or even fifteen years. If we can do that, we may just stand a chance of coming through this the other side. But I don’t like to ponder too long on the chances.
Deirdre
I forgot to say - I am fed up being brave as well. I really want to have that conversation with my mum where I lay out the harsh reality of my situation so I don’t have to have that “oh your cancer must be slow growing, you’ve had it for seven years now” and “but you are strong,and have such a positive attitude” conversation any more. I sometimes think the family will find me dead on the sofa and then realise that I really was very, very ill. Being brave doesn’t actually do anybody any favours and leads, I think, to a sort of collusion which isn’t particularly helpful to me.
I could rant about it all night, but will stop now.
Deirdre
Hi Muddy,
I don’t think anyone really understands the depths of our sadness when we have our diagnosis and look at our children and realise we may not be there for them for long. Only those who have found themselves with a cancer diagnosis. I was a little older than you at diagnosis - at 45 but almost 20years now I have lived with it. ‘IT’ occuring many times over those years and finally being diagnosed with extensive bone secondaries in 2002. But my disease is under control and I was one of the fortunate ones for whom herceptin worked. Each time it came back I never thought I would be there to survive the next one but I began to see goals achieved, special events came and went and I just hope for more.
Here you will find a place where you can come for understanding and company as you face each step. It will make a difference.
Dawn
xx
Hi Muddy
Being diagnosed with secondaries is total c***. My primary was 2007, diagnosed just before Christmas 2008 with incurable local recurrance and been on chemo eversince. I feel like cancer has stolen so very much from me, and before too long I know it will steal absolutely everything.
Lately I have felt like I will leave nothing when I am gone, that I made no difference to the world and that I will be forgotten and I don’t like the thought of that for some reason, and I didn’t think myself a vain person, maybe I am though. I don’t know why I have been feeling like this, after all, how many people make a real difference to this world truly and before cancer it never occured to me. Maybe I thought I would make a difference, one day!
People call me brave too, I argue that one and deny it but I will admit I am strong, and I get through each day, each week, and right now each month as best I can.
I don’t have kids, and I cannot imagine how hard that must be for you ladies that do, it must be very hard.
I am truly sorry about what lies ahead for all of us Muddy, I can’t make anything better, but just wanted to send you message and some cyber hugs.
Nikki
Nikki, yes it is hard having children and realising that you will have the leave them earlier than you would ever have wanted. But maybe it helps with the “what difference did I make to the world” question. If I don’t make a difference myself, then maybe they will.
As for being brave, I am fed up with the brave face and going along with the collusion that all is well. But, as I’ve said before on this forum, I am brave in small ways.
For example, I have been trying to get rid of stuff that I no longer need. I have been going through my clothes and things and trying to keep stuff that is only going to be useful to me from here on in. I got rid of over twenty work jackets the other day - lovely clothes with great labels - Windsmoor, Jaeger etc. It felt good to say goodbye to them. But it is so hard with all my professional things - papers I have written that I slaved over for hours, magazines I produced, “how to” guides etc etc. I really want to hold onto them (“who knows?” I say, “maybe I will have to run a seminar on crisis communications for local authorities again” AS IF!!!). Then I think that nobody will be interested at all in any of this stuff after I have gone and it will end up in a skip. So into the skip it is going! The throwing away of stuff that belongs to life before cancer is one of my small acts of bravery, I think.
I do like to think that I may have left a legacy to the world in small ways. NObody knows the seeds we scatter. Maybe it is some favour I did for somebody that made a difference to them, perhaps when I was teaching I helped to convince a stroppy thirteen year old to read a bit more poetry. It’s hard to tell. Or maybe I totally screwed up somebody’s self esteem by a careless comment. Who knows.
Deirdre
Hi Muddy and everyone else on here.
I think you’ve hit the nail on the head, it is so difficult to get anyone else not in our position to understand but also without hurting or upsetting them either - that will come later I suppose. I’m not brave either, I just plod on trying to ignore my death sentence, as I see it, whilst it doesn’t encroach on my everyday life. I’m lucky not to have hospital intervention at the moment, I just wait until that happens and live between the scan results. I hate this timebomb and daren’t think too much about the end for me, my husband, my girls or anyone else - it is far too upsetting. This is a horrible, horrible disease that has no mercy. Having said that I do plan things and intend to carry out as many as possible. Even a small treat can lift me, like a nice walk or reading a book when I should be doing housework. One thing this has taught me is to not feel guilty anymore, that and to enjoy the moment. I hope you can deal with the way you are feeling right now either by yourself or with external help and feel brighter about things. This is the place to come as we all know what it’s like and can fully empathise without being dismissive or not fully understanding.
Take care
Nicky x
I don’t have children and no biological family who I am close to. I have been with my current partner just 13 years…I am 60 now. So I recognise that feeling Deirdre write of, of wondering what difference I have made in the world.
Not having children makes the question different too.
Like Deirdre I am a horder, but having moved 3 times since 1999(last time in 2006 after my primary bc…before recurrence.) I was active in left wing politics and lesbian feminist politics in the 70s and 80s. A while back I cleared out all the papers I have accumulated from that activity. I didn’t bin it but sent the feminist stuff to the Glasgow Womens Library and the other politics stuff to various people still active in local politics. I now regret discarding so much because I am making a scrapbook of my life for my partner and those years are very thin in memorabilia.
Like you Deirdre I am beginning to give away things to friends…at my 60th birthday party I told everyone to choose a book from my overburdened bookshelves. I then signed and date it. I am going through everything else…if its stuff I can’t bear to throw away or things which my partner may like I’m keeping it. So some teaching material Deirdre I am leaving, with a little note for my partner for when she is sorting. I like doing that. I have old love letters from previous lovers and I don’t want preset partner to read so they have to be chucked and I am returning dozens of letter to one lover who has been very important in my life. We’re still in occasional e-mail contact and she knows she’ll be getting them back.
The Guardian newspaper runs columns in the obituary section called Other Lives. It gives ‘ordinary’ people the opportunity to write about the death of someone they know. You dont have to be in the least famous. A friend of mine touched me ages ago when she said she’d like to write something about me. We’re going to write it together! and its something which feels really special.
Sorry…I’m a long way off your oringinal post muddy. Each of our lives is important and the struggle to ‘accept’ our current predicament is so hard. It’s hard at 60, but for you at 39 with young children it is I think much harder. For a start I already have peers who have died and you probably have not or not as many. Death at 60 may be premature but its not in the least unusual.
Jane X
Jane, that’s a lovely idea - getting everyone to choose a book. I’ll remember that.
It does seem to be a bit of a common thread - looking around at all our ‘stuff’ and secondary bc giving us the impetus to finally have a clear out. It’s a very big question - what will I leave behind in the world? what are the things that really matter? how can I best dispose of all the clutter and detritus of my life, to help it to matter, and not allow it to be just a painful chore rummaging through rubbish, for my loved ones?
I know from going through my late Mum’s belongings how important the most unimportant things were! Letters and photos, yes, but things like her CDs, her nightie (which I wore till it fell apart)(okay -that was probably a bit weird for my husband!!) a rose in a pot that I’d bought her and that is still flowering now in my garden.A favourite lamp. Objects that remind me of her daily and have become a part of our family home.
On the subject of people not ‘believing’ we’re going to die, sometimes I want to shake people who try to brush it off.I always think of Spike Miligan’s epitaph - ‘I told you I was ill!’.
Jacquie x
I so wish we could banish being brave from the language we use to talk about cancer. On the one hand there are good discussions, like this one, about how the pressure to be ‘brave’ acually makes living with the reality of cancer that bit harder. On the other hand, look at the obituary colemns of newspapers and the memorial tributes on sites such as this, and those who have died of breast cancer have invariably fought a great battle and been unusually brave. How do we mourn those who refused to be ‘brave’?; how do we remember those who refused to use the langage of battle and warfare?
Jane
I have asked Ian not to put the words ‘fight’ or ‘brave’ in my obituary.
Unless referring to a bully at school(Amy) an area manager(Steve Ellison) I think when I stood up to these people knowing the power they had on me I was brave or maybe stupid. At these times I was fighting for what I felt was my right and so was a tad daring. With this bl…dy cancer I feel very tired and ill and know what the end will be. If I could run away I would.
Love Debsxxx
Hi Muddy,
I hope that all the comments you have had so far have helped you in some way, and that even saying you are fed up makes it a little easier.
I was diagnosed with secondary bone 3 months after my primary in 2006. I was trying for a baby and had just been referred for IVF. I was 36 and just 2 years into my marriage (first marriage at that!).
I have just had my 40th Herceptin and continue with Zoladronic every 6 weeks and a daily bunch of other stuff.
I am too busy to die. I could spend time thinking about it, thinking about the children I will never have. But, and this may sound harsh - it won’t change anything. So every time I think about dying I say out loud ‘but not today’. Then I get on with what I am doing. It took me a good 6 months to think like that and I still have difficult days, but every day being down is a waste of the few days left. Sorry to sound like a lecture, I don’t mean to. It is all s**t, but then again, we could have cancer and live in Africa where there is no treatment, and so I remind myself of all the fab things. I am totally convinced that I will be alive to see the cure for all of this. When I started out I had a 4% chance of surviving 5 years, that has now increased to 20%. Either way I had decided I would be one of the survivors. It doesn’t matter if that comes true or not, I just have to believe it to make every day a good one.
Please take care and enjoy every moment with your children, good luck.
Thanks for the messages. Some days I feel fine, in fact most days physically I am ok. It is so ironic that my friends are complaining of back pain and yet I have cancer in my spine and have no pain at all.
My boys are keeping me busy,here in norhtern ireland they are already off for summer holidays so the days dont seem too long.
Hang in there
MuddyXX