Sad & Frustrated at this disease

Public Archive
21

Debs and all,

I echo what you say and feel what you feel. I too nearly rang the helpline.

It is a hard choice. I have been away for the weekend and hardly thought about BC.
On returning home with obligatory back ache (spine mets), checking this site was the first thing I did.

Is it obsessional (yes), is it informative (yes), does it provide much needed support (yes), does it make me think about death, disease and loss more often (yes), does it do me good (I really dont know).

For me, I have no one else to talk to about secondary cancer.
So i guess I will carry on. It is so hard… j x

22

Hi all

I too am feeling rather overwhelmed by all that’s been going on recently, such that I tend to stay away from the forum. Haven’t got words to make anything any better for anyone.

Thought I was doing much better recently (had just had a fantastic holiday in Colombia would you believe) but a recent bone scan shows some new activity on spine and I’ve a cracked hip bone so am back on crutches and have been booked in for a hip replacement op in a couple of weeks time. It’s so horrible how you can be feeling (relatively) great and then it all comes crashing down on you again.

But like Juliet66 says, we just have to carry on …

Alison x

23

Hello…I can’t keep away… :frowning: …I think my using the board less will be trying to check in just the once a day, sometimes I’ve been looking in 3 or 4 times a day, so once a day or every other day would be ‘good’ for me…so thank you, so much, for the very kind words but I can’t leave the board for very long at all.
It’s so good to connect with others in the same boat but then having to cope with losing friends on top of dealing with our own illness. I’ve never regretted reaching out to others. How well we all deal with this…all of us…to know there’s no real happy ending only long periods with good drugs,hopefully. But to keep on each day, on this rollercoaster life. I feel I must try and get as much as possible out of each day others like Peggy, Pinkdove and Kate will now never see.
Alison, I’m so sorry to hear about the cracked hip. I hope it’s not too painful. Good Luck with the replacement…my operation went fine…honest…I had no problems. Hope the physio people get you the raised loo seat, the handy grabber stick etc to take home…you should only need them for a few weeks.
Love to All.x.x.x Belinda.

24

Belinda, I know exactly what you mean, I find myself checking the board probably more than four times a day, even if I don’t always post much. It’s been a very sad couple of weeks and I think we are bound to all be feeling a bit flat and overwhelmed. But alongside the sadness I’m still finding loads and loads of support from reading the boards and I know I really need this forum,certainly at the moment anyway. I have my first scan tomorrow since Xmas - I’m halfway through my six sessions of chemo so need to see what it’s doing - I’m dreading it :frowning:

Alison, sorry to hear about your hip, hopefully you’ll feel loads better once you’ve had the op, hope it goes well.

Lesley xx

25

Like Belinda I’ve been using the boards for 5 years now. It is hard when there are times like this…as there have been before and will be again.

But strangely I find that at these awful times there’s a solidarity and strength on the boards which is profoundly comforting…the times I feel horrid are when there are those recurrent squabbles with some primary people about ‘bad news’.

I use the boards a lot and they help and though occasionally I think I should come less often, I rarely do and I don’t want to set up another thing to feel guilty and bad about.

Jane

26

Hi everyone - i also ffel very, very sad about the deaths on here - of such wonderful women - …and also shocked - so there must be part of me stuck in denial - I also get scared - I do not feel up to this - they were stronger than me - and I feel a bit pre-occupied with them…just cant get them out of my mind - i know this sounds very depressing but…that’s how it is for me…jayne

27

Hi Jayne

Yes, it is extremely tough. These were strong, beautiful ladies who lived their lives with determination to do just that. They gave us fantastic insights into their lives and how they coped with the disease that affects us all. They helped many of us.
So, how do we all manage to move on? We all have to have a period of grieving but then we have to each make the decision to take responsibility for how we live our own lives. We hear things of great sadness wherever we turn, not just in our world here of breast cancer. We have to find some happiness in the middle of it all.
We all have our strengths, weaknesses, laughter, tears, beliefs, hopes and worries. I’ve described my bad days a little but there is a selfish part of me that makes me not want to feel down all the time. Yes, at some point in the future, I may need anti-depressants or need counselling to help me but if that is what is takes, then I will have them. On top of that, there are two things that I try to remember. One is that ‘this too will pass’. After this period of sadness, we need to let it go if we can.
Also, although I’m not hugely religious, the other is the first few lines of the Serenity Prayer-I’m afraid I struggle with it from then on but these few lines help me.

'God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace…

We mustn’t be afraid to say how sad and afraid we are but equally, we mustn’t cheat ourselves of what we would enjoy if only we had never found out that we were ill.

I hope this helps a bit.
Anne xx

28

Oh Lordy…my 2nd visit here today…this not spending so much time on the board plan is going really well…not!
I kept thinking about this thread. Jayne those women were just like you and me…scared, frightend about dying, being in pain, leaving loved ones. They were not stronger than you or me. We are not especially brave, we just have to cope as best we can. When we die others might say we were brave, we were extra special but I disagree. Friends I knew were distraught, so upset, so angry and very frightend at times, just how I will feel, do feel. This may sound a little odd, perhaps not though, but I have days when I have to re-connect with those who have died since my diagnosis, those I’ve met. How can they all be dead when just a while ago they were so full of life? Nearly six years on and I still don’t get it.
JaneRA…yes the squabbles…sometimes only the jolly hockeysticks approach to living with mets is acceptable, the trouper who doesn’t complain and doesn’t frighten others. Will it ever change? I doubt it. I will die of a disease that has it’s own Tickled Pink merchandise and an In the Pink campaign run by the UK’s largest breast cancer charity.
I’m neither In the Pink or the least bit Tickled Pink by this.
Lesley…I hope the scan results show your chemo is working so well for you.

29

Oh Help!
I so want everyone to start feeling a bit better. I too want to cut down how much I’m on here (but can’t).
I really want something to turn this solidarity (as Jane mentioned) into a good thing.
We do need some good things to balance these sad events. Yes, to be honest, I have no time for the Ticled Pink stuff- it might help those who are in or have survived the primary route with no recurrences, but it doesn’t wash with me.
So what can we do? Is it time for us to start exploring our dark humour again and start a thread for dodgy jokes?
Is it time for Jane to lead us into a big challenge on Cancer Research UK and the Pharmas to turn our sadness into something useful? We need to do something or I do at least.
Lots of love to everyone on here and a heartlfelt wish that the need for this website did not exist.

Anne xx

PS what also makes me really sad and scared are the ones who post and sound as if they have bad problems and don’t return. I really hope they are ok.

30

Dear Anne…my bravery comments were not aimed at your post…it’s more to do with years of using this blooming board…through good times and bad. I’m having a feeling cross day…I understand you want to make everyone feel better…although it’s useful, it’s an outlet to rant and rage at times.
I will chain myself to the railings of my local Asda in protest at their silly Tickled Pink knickers…as soon as it stops raining, I’ve had a cup of tea…and a biscuit…etc etc. :wink: Take Care…x.x.x

31

Belinda, No offence taken-
I’m all for ranting and getting it out of your system!!
I am also for everyone expressing sadness.
But I find it hard when there is so much sadness.
The things I’ve written in my posts are things that people have said to my or I have said to others in the past- my way of trying to cope with it I think. But everyone here knows these so well already probably (probably patronising) and anyway, it is like trying to stick a plaster on a five inch wound at the mo! So, I shouldn’t attempt it, a few days off the thread for me and into the sin bin I think!!
Take care
Anne x

32

Sad and frustrated at this disease is the name of the thread and that is how I am feeling right now. I make no apologies for how I feel, I could add I am more than a little angry. Why angry?

Maybe it is good that we are all feeling as we do it proves we have a heart that still beats, that we can still feel pain, that we can love a stranger, someone we have never met but who we will miss so very much.

This forum has made me laugh, cry and got my mad up. I know that it will continue to help me until…

Love Debsxxx

33

Debs, I think you hit the nail on the head about loving and missing strangers we have never met.

xxx

34

Belinda

I so agree with what you’ve written about those who have died being no different, no braver, no more inspirational, no less scared than those of us still alive. We learn from each other and give to each other in so many special ways.

I somehow feel I have to hold the sadness in my hands at the same time as the dark humour and the little hopes…and yes Debs the anger too…I’ve always had the anger…not least about the pinkwashing of breast cancer, the trivialisation etc etc.

I knew Kate in realworld…met her a dozen or so times. We talked about death…quite a lot. We laughed too, and gossipped and I think took joy in each other’s company. Knowing her mattered a lot…she was an intimate stranger who became a friend. I have conversations in my head with her now, about this thread, and that helps a lot.

Jane

35

I can relate so much to the ‘who’s next on the list’. At the moment I feel i am fairly well down the list, but I also know it only takes a bad scan result to boomerang me right up to the top. That is how tenuous it all is. You know even in the best of times with this, you may only be one step away from the worst. I hate to disagree, I really do, but i think i am brave, I know what it takes out of me on occasion to get through, to pretend and not just to survive but to live, and actually I think most of us are.

How to change things? Well as many of you know my brother has full blown AIDS. He has had it for years, often he refuses to comply with his meds, recently he didn’t take them for 18 months, and yet he still lives. Why is this? Well my thoughts are it’s to do with the massive amounts of money raised by the gay community in a very short space of time, not only that, but the power they welded within the NHS. Their charitable organisations dictated the terms to the NHS not the other way around. They did not tolerate the knid of crap that we now tolerate. No-one certainly patronised them.

When my brother was first diagnosed and seemed to be dying, I could only find one funeral director - 50 miles away - who werre prepared to deal with his body. Thank god he survived, but that is an illustratio of the kind of attitudes people with his disease were up against.

I don’t much care how they raise the money that will save my life, I just want them to save it and all those like with bc.

AIDS was seen as a much more complex disease, initally they didn’t really think they would find a ‘cure’ in our lifetime, but it became fasionable, so is bc to certain extent, and again if that is what it takes, fine.

I hope this post hasn’t upset anyone, but like others i am really angry, and yes I believe we also need a ‘In Memorium’ heading here, and I do hope that there is a moment of silence in the fasion show for all those who have died. I realise i have rambled sorry

36

Hi Celeste

We don’t have to agree on the ‘brave’ thing. I don’t find it a useful term to use of other people…though as I’ve said before I think there are individual demons for each of us to face at a personal level. So perhaps a case of: All of us is brave, none of us is brave.

Yes there is such a diffrence between the collective action taken by gay activists over AIDS in the west and the fluffy pinkwashing which has taken over bc campaigning. I just wish I knew how to put it right.

You know what I think of the Fshion Show (and anyone who doesn’t and would like to know please go to my website)and I think some moments in this year’s show to remember participants who have died would be a good step forward…I am pretty sure that Pinkdove was in the show recently…she an I had some good pm exchanges about it.

Jane x

37

I couldn’t stay away I’m afraid as I’ve been thinking about this.
Basically, us secondary ladies are living with the disease for reasonable lengths of time. We should be pleased to be managing to live so long with it in many cases, but in a way, that is what hurts so much. We have time to get to know others in the same boat and we get to experience pain, anger and fear for an extended time.
I haven’t been on this site as long as others have (14 months or so) but it is still really sad to experience what has happened here.

Anyway, last year I did the Race for Life thing but decided not to this year, it’s too loud, hyped up and emotional. While CRUK is doing a lot to help prevention, screening etc, it doesn’t include advanced cancer and end-of-life issues as core areas of focus. Breakthrough Breast Cancer seems to be more focussed on the issues associated with living with advanced cancer, like resistance to therapy etc. So it made me feel like doing a ‘crocus walk’ for Breakthrough (crocuswalk.org.uk), as some sort of remembrance for those who have passed, for those of us living with the disease and also to help those who will follow us. Ideally I hope research will turn up with some amazing therapy that stops all cancers in their tracks- a cure. But, until that day, any breakthroughs that help us live longer with our families, in less pain and with some more reassurance would be a good thing.
Anne

38

Anne,

Are you coming on live chat?? You know you want to???

julie x

39

Oh thanks Julie!
Trouble is I have no idea how to plus I still haven’t had my dinner!! Will pluck up courage to do it one day though. Actually your post has brought me back to the real world thank heavens- I was in my own little world- scary!
Anne x

40

One of the many nice things about this forum is we can all happily agree to disagree. :slight_smile:
For me living with secondaries is muddling, stumbling through, facing more treatment and hoping for good responses. When I die I don’t think I can suddenly become an inspiration or exceptional. I will have either run out of treatment options or stopped responding to any treatment or maybe I will choose to stop treatment.
A friend in Scotland raised thousands of pounds for a local Maggie centre despite having brain mets and having to use a wheelchair at times. She went to visit the breast cancer group she had helped with funding and was advised not to come again as she would upset others. When she died however she was ‘heroic.’
There’s an awful lot of money raised for bc but I sometimes wonder exactly how, where it’s used and if it’s always put to it’s best use. When a couple of forum members mentioned new website costs on another forum here they were drowned out by indignant replies…actually I thought they were brave :slight_smile: as I kept my head below the parapet!
Anne…my husband and daughter did a crocus walk when I was first diagnosed…just the 2 of them…Breakthrough are doing lots of good work.
Night All…the ironing pile is calling out to me. :frowning: