HI everyone
I have learned that 2 of my ‘cancer friends’ have passed away in less than a week of each other.
I am devastated. Besides the fact that we have lost 2 incredible women, it has brought back to reality all my fears and worries about when my time comes.
I’ve been constantly crying (on and off between naps) today and feel like the proverbial rug has been pulled out from under me.
J xx
Hi Poannie
Yes, it’s terrible when our friends with mets die – whether they’re “cyber” friends or people we’ve met – and we feel huge sadness, disbelief, loss, increased isolation, fear and anxiety. I’ve been part of a BC mets internet-based support group for several years – we’ve had many national, regional and local get-togethers (our Unhealthy Living Days) and have grown closer across the miles. Very sadly, many of the group have now died, leaving great gaping holes in our lives. But I’m glad I had the chance to know them, be with them, laugh with them, cry with them, learn from them & support them. I think about them a lot – mourning their deaths and celebrating their memories – and know that I could not have coped with mets without being part of that lovely group.
Marilyn xx
Hi J, I’m part of the group Marilyn has mentioned…I was also part of a group of 4 of us, all living close by, who used to meet up at the local pub and at home for a lovely chat, some laughter, some tears…I’m the last of the local friends, 2 died in 2006 and the other lady died in 2007. The group Marilyn and I are part of have lost, as Marilyn mentions, so many…but I also feel the support I received from them, knowing them, meeting up with them, has helped me cope…even though I feel the loss I also remember we had some really good times. And a lot of laughter…always.
You take care…x.x.x
Hi poannie
I feel compelled to respond to your post as it resonated stongly with me, but I don’t really know what to say as I don’t feel words can comfort us when we lose friends, many of whom we’d never know were it not for this vile disease uniting us. I am sorry for your loss. It is a sobering reminder of the knife’s edge we live on and a sad waste of beautiful women’s lives.
Take care.
xxx
Hi poannie
Just want to agree so much with Marilyn and Belinda. I’ve been using BCC forums since early 2004 and since then so many cyber friends, a few who became real life friends, have died. I’ve learned so much, in so many differnet ways from those who have gone before me…some of it has been emotionally painful but yes some of it has been a joy…with much laughter.
One of the saddest things is when people I have known just disappear and you know they have probably died but are never quite sure.
The deaths we hear about on the forums are just the tip of a dreadful iceberg of death from breast cancer. Every day in the UK 32 or 33 or so women die of it and though the latest mortality figures for 2007 saw a decrease in deaths to under 12,000 a year thats still an awful lot of women (and a few men) who have died of this disesae.
I think it might be nice if we had some kind of In memoriam forum to remember our friends. this time of year as the bluebells are coming out I always think of jpoet who wrote amazing poetry about the experience of living with terminal cancer.
BLUEBELLS
Today I saw my last bluebells
Shyly sheltering in Kent,
Not carpets but clouds, frothing unfocussed,
Misty covers for the moist cool forest floor,
Shimmering through shafts of birdland sun,
Glimpsed shining through the shaking tops,
And I looked long and longingly
At those dainty drooping florets
Soon to set their fruits and drop to earth,
Regenerating strength for next year’s growth,
The future waiting patiently within.
So I told my last goodbyes
To all those thousand open ears,
Telling them to bring forth scent of my farewells,
A little remembrance on the air,
Mustily continuing long after I have stopped;
And a single sexton bird called out his verse,
With distant echoing refrains,
Shaking the hanging bells
To ring their silent obsequies.
_____________________________
© Sandra Lovegrove : 21 May 2006
Thank you for your comments ladies - I really appreciate them xxx
My friend and I have lost three of our ‘real-life’ cancer friends in the past month (one of them pinkdove on this Forum).
It has been incredibly hard, as I have never lost anyone to cancer before, and I certainly find I am prone to weeping at any odd moment (particularly embarrassingly at work where I am having a bit of a hard time at the moment).
But I don’t regret knowing them and I would never turn the clock back on our meetings (usually a yummy lunch)- they have all helped me beyond measure with facing up to my own disease.
I am not a religious person but I would like to say God rest all our lovely friends lost to cancer - I don’t think any of us will ever forget them.
Justy
Hi all,
I resonate with all your comments.
Poannie,I’m glad you started this thread. I’ve been feeling very tearful at the loss of Kate. I didn’t even know her surname but through her posts and amazing blog you just felt you knew her so well. She has been so helpful to me over the past year and she was still giving helpful and supportive advice just days before her death. Like you said it has reminded me of my own mortality and the fragility of life as she just seemed invincible. Although, I cry about it at the drop of a hat it’s also actually making me enjoy every simple moment of life. I drove an hour to a concert in Wiltshire last night and someone (not knowing anything about me and my cancer)seemed so surprised I’d gone so far to see an amateur band - I longed to say well I don’t know if I’ll still be here by the end of the year but of course didn’t dare! I find that Kate’s determination helps me so much not to give up and to make the most of every day and just still hoping for a cure. It’s got to come some day surely. No-one can take our hope away and that’s what I hang on to. Kate would have known exactly what to say as I struggle with the “right words” but I resonate with all the sentiments expressed.
I found that poem very moving Jane. It was beautiful.
Thinking of everyone coping with loss at the moment.
Anne xx
goodness this thread says it all ,when i heard the sad news it brought such feelngs to the surface, that i usually try to hide ,and it does make you wonder when and if ,but everyday is for living,and we cant let this awful desease rule us even when it tries so hard to do so. lets all raise a glass (or 2 ) to absent friends .rest in peace god bless you all .xxx
Thanks for reminding me of JPoet’s beautiful poem, Jane. I walked through the bluebell woods yesterday and remembered her all over again.
Yes, this is such a shitty disease. And there is a lot of bad news around right now. My only consolation (because this is what I believe - I am not in any way trying to be lightheared or twee) is that there will be friends in heaven for me to talk to when I die and not just old and crumbly relations. Sounds a bit selfish, really, to write it down. I don’t want any more friends to die. Nor do I want to die. So I skirt around it and then feel as if I have bumped into an artexed wall every time somebody else from these forums dies.
With Kate, I guess I should have been prepared. And yet her ability to rebound from the most horrendous situations always made me think that she would rebound again - even right till the day she died I hoped she would - like Lazurus - pick up her bed and walk.
I remember somebody posting a thread here years ago which was entitled “we’re dying for a cure” (I think it was Belinda). Right now, that seems so appropriate. Where is this cure? Are we really any closer or do we just keep on taking or not taking the same old treatments and hoping, because that’s all we can do?
Deirdre
Sorry…pressed submit before rant finished…
And again. See post below!
Jane
Oh Deirdre its such shame I don’t believe in heaven because my there are some fine friends waiting there…we could have a ball in heavenly cancer cyberland.
Yes I remember the ‘dying for a cure’ thread and your reminding me hits so many buttons for me. Yes we are dying in our thousands and there is no cure or sight of one. In the past few years only really herceptin has been anything like a breakthrough…for some women. According to Susan Love the average survival time after a mets diagnosis is 2 to 3 and a half years, and 3 and a half years is about what Kate got. So many of our freinds in heaven were on the wrong side of the averages…remember jpoet yes, and slp and steph and so many others we knew. And yes yes yes it is great to hear of the good news stories among our friends…of mets controlled for 5 years, 7 years, more…but they are the people at the other end of the bell curve. Last week for the first time for years annual death figures for breast cancer in 2007 dropped to below 12,000, a mighty 300 plus fewer than in 2006…are we expected to be hopeful that at this rate no once will be dying of breast cancer in 36 years time?
So often we are each individually preoccupied with own dramas of horrible symptoms, of side effects, of hope that the next chemo will ‘work’,…and we avoid acknowledging that often its such piddling incremntal bits of time…weeks here, a couple of months there, that the next ‘new’ chemotherapy or targetted therapy might get us. How can we change this so that collectively we can get more angry, get some radical charities not making tying headscarf videos on our behalf, but to really challenge the research community, the scientific community to get off from their arses and their mouse models and their test tubes and their thousands of failed trials, and think more imaginatively, in a more joined up way about what needs to be done for the cure.
Kate was special to me because she could so clearly hold in her hands at the same time both the knowledge of her always inevitable death and her personal hope and gritty determination to live as well as she could for as long as she could. She knew she was no Lazurus and neither are any of the rest of us with incurable disease though a tiny few in the secondaries forum today may still be alive to remember the rest of us in 5 years time.
Yes I am only too aware that we are dying for a cure. I don’t want to see any more of my friends die of breast cancer but I will. I don’t want to die of breast cancer but I will.
Jane
While I will always believe that no disease is fair and BC just happens to be the one that I got, this thread really does say it all and Jane, I understand and agree with all that you say in your post. I know that you are triple negative and have limited options but you are right when you say that each drug gives us only a finite time (unless we are really, really lucky).
It is true for all cancer patients and other patients whose disease is progressive that we cling to these bits of hope that come in bubble packs or in IV drips (I do- What have I to lose?). But should we really all be so grateful that we have these drugs that cost the earth, give us a few more months and a good number of side effects to boot? That is a difficult question to answer and each of us will perhaps answer it differently.
Really, I’m beginning to find it difficult to believe that progress is so slow in the treatment of cancer. The evidence for the efficacy of cancer treatments can sometimes be incredibly poor. There is some fantastic science going on but yet, it just doesn’t translate to something truly meaningful. One day it will, but why is it all taking so long? Cancer charities get phenomenal amounts of money but in return, yield very little in real terms (sorry guys, but it is true). Equally, the big pharmas. Sometimes I wonder whether we should all just drink red wine, green tea and cider, eat loads of dark chocolate and mushrooms with a good teaspoon of ginger and turmeric for good measure and chew on some willow or pine bark!
We have every right to ask all sorts of questions and be angry for ourselves and for our friends.
The only thing that makes me withdraw from a major rant is that relative to the treatment that is available in poorer countries, we still do have a lot of support and I try not to forget those too.
Your call for the scientific community to take up the challenge is well placed Jane. Surely it is time for more meaningful breakthroughs so that in the future our hope is better placed too. It is just a shame that the breakthroughs will always be too late for many of us and for many of our friends.
Anne
I have faith and belief but boy has it been tested in the past two weeks. Kate, Gill and Maroke have all come to the end of their life and I am just so very very sad.
I know when we join the secondary forum there is only one way out not a fantastic prospect. What can we do?
I am finding this all very difficult, all the money invested into all the different charities, all the research what do we have to show for it. That is very ungrateful of me but it is the way I am feeling.
Don’t get me wrong I have had a very enjoyable weekend, good scan results and a very loving family but it is not just about me I want more.
For all of us.
Love Debsxxx
I am feeling so “flat” at the moment mainly due to losing several of my cyber friends. I also have another friend of mine who lives locally who has just been dx with advanced cancer. But I just feel that I am moving up to the top of the list sometimes. When I joined the secondaries thread I didn’t post for ages because It always seemed to me that everyone was a lot more sick than me and like Debs says there is only one way out most of the time.
I suppose it is just making me face up to the fact that the disease I have is incurable but I really really want there to be a cure very soon.
I am really missing the postings of our cyber friends it started for me with sixpen(anne) she used to make me laugh so much. Thats what seems to be missing at the moment I think laughter. But this is a very sad time on this forum especially.
Well sorry to go on a bit but I just wanted to write something down
I am glad this thread has been started as it says what I am feeling now. I knew Kate was very ill of course and I knew Peggy was very ill but it was still a suprise. Gill 23 just seemed to disappear into the hospital. Peggy seemed to take alot from her doctors- palming her off and telling her nonsense. The whole thing just makes we want to cry. I try to take inspiration from people like Kate or Jane Tomlinson, but its hard, and it doesn’t really help that the secondary side of the disease is not really supported, having to take awful news in corridors, live chat just not working, and most of all the drug treatments giving increments if you are lucky. I particularly hate being told what an amazing person I am just for carrying on, I 'd like to see what anyone else would do,
just a rant
Cathyx
Yes I too am feeling a little flat right now…I think I’m going to try and spend a little less time here…for a little while…it’s a great forum but sometimes I feel so overwhelmed by bc and I think a little less time spent on all bc boards helps me at times…not that life is ever as it used to be. Caroline… I think I understand how you’re feeling as I had 3 friends with bc who all lived locally…there’s only me left now. And a group of us used to meet all over the UK but there’s so few of us left…I think of sixpen often, her little boy…and my friend amberd…she used to post here a lot and I’d met up with her quite a few times…she was so full of life. I know I’m so lucky to still be here but after nearly 6 years of living with this I feel, at times, exhausted…all the sadness is just too much to bear at times. I can recall so many happy times I’ve spent with others where there’s only me left now…it seems so unreal at times.
Take Care All…xx
Belinda - I hope you get to read this before you take a break from the forum. I’m sorry you’re feeling overwhelmed with bc at the moment, every time I’ve felt that too I have taken a break from the forums. I just wanted you to know that I have been reading the forums a lot longer than I have posted and I have always found your posts so encouraging and helpful.
It has been so very sad to lose both cyber or real friends that have posted on here and they will be greatly missed.
There are so many times that close friends who have never had an illness to cope with just have no understanding at all of what we are going through. Although they mean well the things they say or even the things they don’t say just make me feel more alone than ever. It is only through ‘talking’ to other women with secondaries that makes me feel someone understands, which goes such a long way to making things seem better. Who else would understand the emotions that have been talked about on this thread?
So Belinda, please come back when you feel able to. xx
I second that!
I have been reading this forum for 5 years this May but could not work a computer so never posted I think the first post I read was Bikerj and jpoet remember them because of the j!
I too am finding it so hard, all the loss the sadness. I very nearly rang the helpline!
As I don’t live near family and friends this forum has been invaluable to me and I have also felt maybe I need a break but will I? I am not sure.
Don’t stay away too long Belinda you will be missed.
Love Debsxxx