Deterioration of this disease

Public Archive
21

Hi and thank you all,
today for me has been much of the same . Up showered and dressed and sat in lounge reading Sunday papers. Did manage a wander in the garden to check plants are o.k. Ian has been busy cleaning kitchen cupboards. It is a job I was going to do when my energy levels picked up. Maybe I have scared Ian into believing they may not pick up, I am not giving up and hope I can start vinorelbine this week.

Jane you are not highjacking my thread it is a thread to be shared. I deliberately left out the word secondary in the title so if the moderators do read it they will see how we feel when we begin to deteriorate which ever state or type of disease we have. I was also mulling over your post on bcpals re the wheelchair remark and I just thought now is the time to say what we are feeling and I am glad I did.

I think most of us are very sad that in such a short space of time we have lost so many forum members and it has brought home to me that maybe I could be next. It is a bit like one of those films we all know we are going to get bumped off but not in which order!

Well I want to thank you all again for your kind remarks. I am still a glass half full type of person but I know I am in a fragile place. I know I am not alone and I pray for a cure for all of us.

Love Debsxxx

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Sadly spot on Debs:

we’re all going to die but don’t know in which order. Now let me see who was the last person I met who had won their battle…

Jane

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This is all so very hard isn’t it. To know people with this disease, and especially here on the internet where we can’t see, it is possible that the person we are ‘talking to’ today can be dead tomorrow. Shocking! Yes. Unbelievable - maybe but I have seen this happen and I may not be the only one, either to see it firsthand or to be that person.

I consider myself relatively ‘well’ - over the past year I have had increasing pain & mobility problems. But each time one of us has further deterioration, a failed chemo, a further diagnosis of spread it is like another nail in each coffin. It always leaves us with the question - will I be the next one.

Debs you say: “I am still a glass half full type of person but I know I am in a fragile place.” I say hold that glass gently and I pray that your glass may be full.

Dawn
xx

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Just wanted to say this is such an honest thread…three years ago this weekend I lost a good friend…she was much too young, we met via the old forum and then discovered we lived in adjoining streets.
Love Belinda…x

25

Have been away at my mum’s for a few days and so have been offline for a few days and just found this now.
Lovely,funny,wise,warm,frank and honest Debs,I so wish you weren’t going through such **** right now or at any time. So glad you can still rant and tell it like it is. Your words and honest attitude has helped me so much over the past 18 months. I wish I could ease your burden now but all I can offer is my thoughts,cyber hugs and ears to listen and offer support.
I am taking your advice from when I met you in Feb and am living in the moment as I am “well” at the moment!The dog survived the kennels as you said he would and he’s now been booked in for another 4 times at the mo in the coming months.
Really hoping tomorrow brings a better day for you and Ian.
Keep writing! Loads of love Anne xxx

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Hi Debs

I’m really glad you managed to wander out into the garden today for a change of scenery as I identify with feeling imprisoned in an, albeit stylish, cell.

Apart from being given bad news, I have always found the scariest part of this disease to be the way in which it can dramtically change direction in the blink of an eye. And I am guilty of taking this for granted when I have “better” days and perhaps do not make the most of them. As JaneRA said, everything is relative, and hindsight is a wonderful thing. It is a truly grim place to be when the disease appears to gather momentum and I can only empathise with your frustration, sadness and fear. You are not moaning or being ungrateful, it’s just the reality (hello Vita!).

It has been a sobering few months on the forums and although people in our situation are under no illusion that there ain’t gonna be any happy endings for us, it doesn’t make the daily living with it any easier. Nevertheless, you say your glass is still half full, albeit a bit wobbly, and ok Taxol’s not done it this time around, so let’s see what Vinorelbine can do. We all need a little bit of hope to keep us going, even on our darkest days. Even if it’s not the expectation of a miracle, just a better day, a bit of relief, a little while longer with our loved ones, wanting to see Michael Schumacher’s comeback, or what happens in the next episode of Ugly Betty - whatever. I hope that your next chemo is the right combination for you.

lots of love
xxx

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Dear Debs

Just wanted to let you know how important your posts are to me, no matter whether optimistic or not, you just tell it as it is and I like that. I wish I could be as elequent as you, Jane and the other ladies on this thread, who have so expertly put down into words all the thoughts and feelings I have. This feels so bizarre, strangers brought together with one common bond - contemplating our early demise from Breast Cancer. I hope you get the vinoralbine next week - I lit a candle in church for you yesterday.

Linda

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Debs:
It has been awhile since Iposted on this forum;but it is a good place. I feel almost guilty that I am OK - but I am very sure that is not your intention. I am proud of you that even despite this setback, you consider your glass half full. May it always be so. The best I can do for you is to give you encouragement to talk – rant and rave to your hearts content here – and to give you a warm virtual hug.

In my heart, my prayer for you is that you deliciously cheat the disease by staying with us for a very long time. Let’s hope the next treatment works like a charm so that you and Ian can spend your love on one another lavishly.

Much love,
EmilyJane
xxx

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Hi Girls,

I have enjoyed following this thread because if you take the Cancer part out of the txt there are some beautiful things being written by some very lovely people and that has felt very supportive and understanding.

I lost 3 very close firends within a month and to be honest even my Oncologstic was concered about me.
That came around the time I was in a lot of pain when my problems first started.
Everyone seemed really concerned that I wouldn’t get over it but the mad thing is I would never have meet them if it had not been for cancer and they kept me strong.

Debs has always made me chuckle with her threads, I have enjoyed her little expressions and obvious zest for life.

JaneRa has been a huge source of help with her regional cancers as this is where all my trouble is not from the lung nor bones but from the regional area…
There have been times I felt like I have been copying symptoms!!!

Dawn and Jane helped diagnose my Horners Syndrome.

I have had lovely message from you all about my Brain Tumors which kept me together as I new you were all thinking…
'Bl**dy H*ll to that bit of news.

I am a glass half full and will continue to see this diease as a challenge, when I can’t do something for example jump in the car and pop into Town I will find another way to spend money.

I have a wedding to go to at the end of month my hubby is Best man and my daughter is bridesmaid.
I sorted an outfit to wear but didn’t get Robs usual response it was his face said everything because my body shape has change.
It really upset me though!
I hadn’t paind a lot of money didn’t see the point but two months ago I had a beautiful dress out of Monsoon and took it back because I wasn’t sure about my health.
That outfit was over £150.
Now I just feel like the poor relation.

I think the outfit does look nice so no doubt I’ll wear it but a wow or his usual saying of ‘looks really smart’ wouldn’t have gone a miss.

Thats without even going to the place that I am not going to see my daughter get married…(I know maybe she wouldn’t anyway)
I have seen my health deteriorate and its really scary.

Pain has been the worst for me…I never understood how that could effect the whole being and how it grinds you down, constant and relentless.

My steriods are working but I’m getting the moon face, eating to much putting on weigh, have lyphadema in my left side, permently constipated and not sleeping…

Then someone tells me I look well…
(and thats just from the regionals Jane.

As for the dying…
I have a great Aunt who has just turned 100.
She had been a creaking gate for the last 40 years…

I will be seriously pi**ed off if she out lives me!!!

Sending cyber hugs to all

Tess.xx

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Am still thinking of you both, Debs and Jane - and you Tess too. In fact seem to be thinking of a lot of people at the moment. And been thinking too about this particular thread.

Glad that you managed to get into the garden Debs. And can you not go and buy back your outfit from Monsoon, Tess? I certainly would be sorely tempted. It sounds such a great family occasion.

Also wanted to pick up on what you said, in response to my post, Jane. I probably didn’t make it clear that the stage I was talking about was not about the symptoms of the disease and the side effects of the treatment (which as you rightly point out are different for you and for Debs) but was about the stage that we reach when we can no longer keep the impact on our lives at an acceptable level. That level will be different for each and every one of us, the impact too will be different and the nature of that stage, as will the length of time it lasts and whether it is a stage that is final or not (I am still hoping that vinorebine and caelyx will work for you both and that things might improve). I do feel however that everyone with terminal cancer (be that secondaries or regional recurrences) will reach that stage.

Will continue to think of you. Kay xx

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Hi Kay,

Hope you are managing to get other things done whilst your doing alot of thinking!!!

I have a shopping trip with hubby’s plastic now arranged for Wed!!!

I have been very ill from having chemo,Taxol but also recently have been in a very bad way from my regional spread.
Although they have been different situations the impact on my life has been very similar, that constant reminder that this could be the start of the end, knowing that tomorrow you won’t feel better.
The fear of dying and what you’ll leave behind. Not being able to get out of bed…do I need to carry on?

I will always hold onto the smallest bit of hope for myself and others… its what I do.

Best wishes to you all,
Tess.x

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Tess,
enjoy your shopping trip. My youngest daughter is married and living in Newcastle we have spent the last few Christmas’s with her and our Boxing day treat is to do the sales Monsoon always have a brilliant sale. We stock up, well no I stock up, so with luck that dress will be there waiting for you.

Me, well I am off to clinic in the morning so fingers crossed I am able to start on vinorelbine and kick these uggers up the arse.

Kay, we on the secondaries forum have had a rotten time this year, I have been reading posts since 2004 and don’t think we have so many women lost to this disease and as I know you have been posting much longer than me so I can understand how you are doing all that thinking.

E.J. don’t feel guilty I am so glad you and the ladies of the lakes are doing so well.

AnneS so glad your dog was o.k. in the kennels he will enjoy his next trip, you just watch his tail wag as he gets the scent.

Jane, hope the pain is under control is it your second lot of caelyx this week?

Love and thanks to everyone don’t forget keep living all those dreams, even if it is only baking that special cake or meeting up with loved ones. God I feel such a bl@@dy wimp.

Love Debsxxx

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Debs, the last thing you are is a wimp

Lesley xx

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debs,

you are the least wimpish ( is that a word?) I can think of. I hope you got some good news at your clinic appointment and that you have the energy to enjoy something special soon.

Nicky

35

I am not spending my time baking cakes Debs! I hope today went ok sport. This is not like you, and I know that whilst saying that it’s a pretty stupid thing to say, because many of us have been close to this place either through treatment of disease and it’s bloody frightening.

It’s funny what you said (either on here or in convo - canot remember which) about voices, and no longer feeling the strength of them. I know that I too, do not have the volume I once had and can easily become breathless if I shout, - perhaps that’s what this disease does first - takes away the means by which we are heard.

I cannot make this better for you, or even make it go away, but one look through this thread can make you realise how much you are valued here. Your spirit and your lip (as they say up north!), not one to back down from a challenge. Debs keep posting, and it’s clear that everyone will give you all the support that they can - even the non posters - blimey how popular are you? It’s also quite clear that everyone responds to the truth, for which there are no handy little booklets, but there are bucketfulls of love and care.

Thinking of you sport, you can do this - not giving up on you yet

JaneRA - so angry to read that they still do not seem to have controlled your pain, they really shouldn’t do all this reassurance garbage that this is possible when clearly in your case it isn’t. No relief at all with the gaberpentin?

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Tess,
Try ebay for the Monsoon dress,I got one a few months ago it was new and about half price! At least you know that particular dress fits.
Its worth a try!
Good Luck
Love and hugs to all,
Dot
x

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Hi Celeste

Yes I’m pretty angry. ‘Its what we’re good at’ (pain relief) says hospice nurse…oh yes?

I’ve had my gaberpentin reduced from maximum dose as I was falling asleep and having hallucinations…now that experience is quite something…the pain killers are giving me massive side effects. Good job I’m not religious otherwise I would think I’d been speaking in tongues!

Jane

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I am sorry to hear you are still in pain, Jane. I know we diverge a bit when it comes to things spiritual, but underneath it all we are women. Pain is pain. And no one should have to endure pain on a regular basis now.

I hope it eases off for you and you feel like yourself again.

EmilyJane
xx

39

Debs:
How are you today? How did the treatment go? Were you able to get it?

I have been thinking of you all day today. I agree with your other friends…this is not like you. But then again, a person can only take so much - and this is serious stuff. So let it out and let us bear the brunt of your ugly moods – we can easily deal with it. We are many and we have very broad and accepting shoulders. So dish it out girl!

I hope you are feeling better. Just know you are in our thoughts and prayers.

hugs,
EmilyJane
xxxxx

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Just wanted to add my hugs, they’re nothing much and nothing I can say will change anything, its been a very hard few months and the sadness of which has kept me away a bit.

I can’t imagine the forums without many of you so you’d better keep on keeping on!

In between being constantly scared about my own mortality through being in regular pain these days (as my name sake says I am ostriching about it) and denial as I try to return to the life I lived almost a year ago to the day I constantly think of you all, Debs, Jane, Lesley, Tess, Nicky and everyone else I forget to mention.

Love to you all, and as always, I wish you all the gift of time, xxx