Dear debs, you made me laugh but I could hide under a blanket for you with embarrassment, Hope that your "blueberry" on your "cherry" is nothing more than a dried up old "raisin" (no offence intended)
Good luck with your chemo this week, hope it goes ahead and thanks for the laugh.
A note for Celeste and (anyone else who might know)
Celeste suggeasts oxycontin. I take zomorph and oramorph? Does anyone know the difference between zomorph and oxycontin? All experiences really gratefully received...
Many thanks for anticipated nice morphine suggestions.
Oh dear Debs, Poor old you. I hope your fruit problem is nothing serious and wish you luck with vinorelbine.
I don't think I am going to be able to eat my fruit salad with a straight face now...
Oh God Debs - and I thought I had embarrassment today! Wishing you all the best with your blueberry and hoping that all your Doc's are old and ugly. Mine are none too pretty so that is a blessing, I suppose. Result with the steroids (I think).
Thank you for giving us all a chuckle at your expense.
Why is it that the doctors who work "down under" are so damned good looking??? I had a colposcopy done by a guy who made me weak at the knees and then made me watch the procedure on a colour monitor - eek.
I get "problems" from cycling, hence the udder cream on my profile. I hope your cherry shrinks and disappears without trace ...
P.S. Cherries are in season right now ... but possibly not a "must have accessory"!
to all those who have ventured back on the boards thank you so much for your contributions.
Chebsy... stay luckyxxxxx
Well I staggered in clinic yesterday had to ask for an old ugly Dr as I have a very strange personal problem. All the Dr's are young surf dudes or pretty petite young women.
Shhhh this is a BIG secret and I can only tell you if you promise not to joke or mock me, should we ever meet.
I think I have testicular cancer! I know hard to believe but true. I have a funny thing that resembles a blueberry in where would be my lady garden. It appeared about six weeks ago and as it was itching I must have scratched the top in my sleep and I bled for England. All over Ian's expensive white cotton egyptian sheets. He was none too pleased. Over the past 2 weeks it has come back and is getting really big. So now you know why I need older uglier Dr to investigate.
Nurse takes us into consulting room and promise to send in suitable Dr
I get young pretty girl but she is leaving tonight to go to Oxford so I will never see her again. Felt like a one night stand. Ian sat in chair trying not to die of embarresment. Bless her she was really good said she had never seen anything like it before and she would like 'Brian' to have a look. Well we gave a definate no she could see I was more than a tad uncomfortable so off she went to have a chat about my 'blueberry on my cherry' so to speak.
When she came back in the room I had put the blanket over my head and told Ian to hide under his coat so 'Brian' cold not identify us.
He must have felt the same as he did not show Lady Dr said she had described it to him and he is refering me to gynie man. I asked was he old and ugly. she said no he is mature (his name is foreign and exotic sounds like a dancer or if very lucky a latin lover) Bloody great she said he was very handsome. It is times like this I wish I was under the old dr at Christie hospital in Manchester.
I had also told Dr I had not taken streoids the word back from 'Brian'
was to start them and if my bloods are o.k. I will start vinorelbine tablets on Friday after muga and pamidronate.
Well I haope you are all still awake and that I have been able to give you a bit of a laugh. Albeit at my expense. Such is life.
Thank you all so much for helping me through my cloudy summer.
Hi all on this thread - especially the little Cornish pixie -aka Debsincornwall -I had stopped logging on to site and posting -then saw your name and posting Debs - just want to send love and thanks for honest postings - I just want to say how much I admire you ......all of you on here..the air would be bluer than the bluest thing there ever was should I be in your shoes- its good to rant and say exactly how you feel- love and hugs from one of the "lucky" ones - Chebsy......in Cornwall
Hi to all you wonderful ladies especially Debs and Jane,
My second time around diagnosis came on Friday 13th March 2009 (IBC). i joined this site at the same time and have followed all your threads and wondered how you could be so brave and still find time to live and laugh.
I have found that spirit and also God. I will be fighting as long as I can and I will be saying prayers for all of you.
Debs and Jane please DON'T GIVE UP AS YOU HAVE GIVEN US ALL SO MUCH HOPE. I know it's hard but fill thoses glasses with whatever you can find and accept all the treatment that you can. I really hope that it can give some releif or extension on your lives.
Tess, buy that dress or even 2 and hold your head up high. You deserve it and we all need to feel as good as we can at this time.
I send my heart felt love to all of you and I will be praying.
My heart goes out to you.I have only just joined discussions and you have helped many of us you are a truly brave lady.We all try to put on a brave face and try to joke but people don't understand why we still want to try and carry on enjoying what we have.
Thank you Darling for being so honest about life.I am off for Zometa then more Taxol but I know whatever the results I still have a long battle ahead,we all know.
Dear Jane and Debs
Just wanted to say that you have really helped me with your honest posts on this c***** disease. Wish there was something I could do for you and so hoping that your pain can be controlled.
Hi guys, glad to see you posting. Jane, I personally couldn't get along with oromorph, but I do take oxycontin 80mg per day - slow release plus my paracetamol and goodness knows what else. My point is why not try oxycontin - it pretty much knocks my pain on the head.
Debs I hear tomorrow is going to be a good day, so try and reach for that lilo!
DilysP - I can think of no earthly reason why you should not be posting on this thread-you are welcome
Dear Jane and Debs
You don't know me and I should not be on this thread. Except that I feel I know you both from the forums. Just sending you love and thanks for everything (well nearly!) that you have said on here. Since I came here in 2007 you have both been part of my life. And will continue so.
Jane thinking of you and wish they could sort out your pain. All those meds it is a wonder you can function at all. Is it your 2nd lot of caelyx this week or have I missed it with all the sleeping I have been doing?
I'm now at the stage whre I don't knnow what is causing side effects and what if anything might be the impact of cancser in my shoulder and neck.
I am constantly sleep,really asleep from:
30mg zomorph night and morning
3200mg geberpantone in 3 daily doses (reduced from 4800mg)
50mg at night of amitriptyline
Oramorph as and when
effentora experimenting with doses of 100mg-400mg when pain occurs
Without drugs and often with them I get awful nerve pain from tumours in neck and chest wall(pain in back and arm).
On high dose of gaberpentone I had hallucinations: weird thoughts, weird speech, zombie like.
Trying to balance pain with finding a painkiller which will work and drugs which don't send me to aleep.
I have no idea wheter the chemotherapy I am on (caelyx) is causing any of these side effects or not.
Thinking of you Debs.
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
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.
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.
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!
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!
Love and hugs to all,
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?
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.
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.
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,
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
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
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.
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.
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
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
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.
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.
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....
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.
What fabulous comments from so many women.
I wanted to pick up on something you said Kay about the stage me and Debs are at being what all women with seconadries will reach.
I think its not quite like that. Each of us has disease which will affect our daily lives in very different ways. Some will be really well until a short time before they die...others like me may have along drawn out time of ill health. Debs and I are in very different positions,. Debs' spread is to her liver, and her symptoms now reflect the onward spread of cancer plus ghastly taxol side effects.
With me I've got a very unuusual 'prsentation' and I am ill in ways I never dreamt would happen. Many of you won't go through the particualr problems brought about by regional spread. I am in pain constantly when I stand up so I can't walk far. I can just dress myself but if my partner's around its easier to get her help. Alone I do a funny hop and jump to get my knickers on; I pull my bra up over my legs and I roll on the bed to get tops on right. And then there's my voice...now the least of my roblems...oh how perspectives change.
Each of us has different side effects and symptoms...the ones I am getting I never dreamt would happen, never knew could happen and you will find nothing, nothing in the extravagnt glossy literature from BCC either to say they happen, or to say they are unpleasant. Oh Vita I feel so cross.
Sorry Debs to highjack your thraed. This disease is awful and the impact it may have on our lives sometimes past our most vivid imaginings.
Dawn..thanks for your kind words. I don't fight cancer though...I simply live with a nasty diasease until it kills me best I can. This is not a military operation.
Hi Debs and Jane
I am too very sorry that you are feeling so crap at the moment. You have both posted so much that has been so helpful and sincere, and I wish there was something that I could say that would help you both.
You have both fought so hard and I can imagine how scary it is, and how pissed off you are about it all. I am quite often pissed off with this hand I have been dealt, knowing that most likely, I wont see my beautiful children grow up, let alone probably see them start secondary school.
We are all here for you to moan too, as we all do the same from time to time and I think it does us good to rant on here to people/friends that understand where we are coming from.
Take care and lots of love to you both and everyone else.
Debs (and Jane), I am so sorry you're feeling so awful at the moment. I really do hope that things can turn around for you again - you've done it time and time before, let's hope things can improve again. It must be awful feeling like a prisoner in your own home.
And you're not moaning at all, you're just being honest and if you can't do that at this stage, then when can you?
Take care, love Lesley xx
My Dear Debs,
I have just read your post and its like you have read my mind.
Sometimes you just have to tell it like it is and right now it’s all a bit (lots of four letter Words).
The frustration I have felt at times is almost as bad as the grief of being so ill.
I don’t think anyone can understand what it feels like to go from “tomorrow, I’ll feel better, to, but what if I feel worse”.
Not having the energy to walk from one room to another is a truly amazing feeling for all the wrong reasons, I was like that on taxol a couple of years ago and the memory of it is still very much present.
I can remember getting out the bath and just lying on the bed with the towel around me wondering how I was going to get dry?
We are allowed to have our moments where it is all too much.
You don’t sound ungrateful Debs, just real.
I am in a position at the moment where I am thinking……
What the Bl**dy Hell happened there?
I few months ago I was in a very different situation.
That’s nothing to do with the brain tumors just the fact I now have to have help to get undressed because of my arm.
I hope you can get comfortable and adjust to your limits in away that works for you.
Dear Debs (and Jane)
Am thinking a lot at the moment of both you and JaneRA. For me one of the key issues has always been about trying as hard as I can to limit the impact of the disease on my life - it sounds as if neither of you are now able to do that because the impact has just become so great. All I can say really is that I feel for you. I can only imagine how it feels and I don't like what I imagine one tiny bit.
Keep posting as it is (and don't apologise for it!) because it will be the stage that all of us with secondaries will reach.
This disease is so much cr*p.
Lots of love Kay xx
Sorry that you are having a rough time at the moment. this is the place to tell it though as most of us are no strangers to the vulnerability of our situation and feeling the proverbial sword of Damocles hanging over us. Hope you enjoyed the Proms, I was too tired to stay up so went to bed but could hear it downstairs. Hope you are able to rest and enjoy your garden and that your next chemo improves things
Not getting on the bike but putting on the hiking boots!.
Starting on Thursday, Hayle to St Ives via Carbis Bay, know of any good coffeee shops? Will email details.
As aways - love to you both.
So sorry you're feeling as you are both physically and mentally. BC is cr@p and it is so frightening and there are loads of us here and out there in the 'real' world who have to deal with the total unfairness of it. Not to mention the way we feel so ill half the time with the treatments. I really hope you have some good improvement and get out of your 'prison' for a bit. You have been, and continue to be, such a support and shining light - long may it continue. Hope you enjoyed the Proms and had a good nights sleep.
So sorry you are having a bad time and hopefully you will make a u-turn soon, this trip of ours is such a rollercoaster!
You have been such an inspiration to me also, and I have followed your posts, which are always of great interest.
I will take that advice and "get on that bike" although I have been living for the moment since being dx with secondaries since March!!
Thinking of you,
So sorry to read about the state of your disease. I can only hope that you will be strong enough to try another chemo and that it will allow you more time to enjoy your life further. You are right to tell it as it is, especially for those of us who have been given high odds of a recurrance - so that we can appreciate what we have now and not put things off. I watched the Prom too - lovely sparkly music from the 40s and 50s, which helped transport the mind at least to far away places which were full of optimism and no bc. Reading your post made me think - that I must go and see what's left to book this season, as who knows where I'll be next year. Try to stay strong. Your spirit when you find it lifts others - and I hope it can lift your mindset too.
so sorry to hear how awful you are feeling - and i feel the frustration for you too - this shi**y disease shows no mercy - rant and rave as much as you want - you are one of the most helpful, practical and humerous people on the forums....but you don't have to be that all the time and it sounds like you are at a low ebb . I had to tell my daughter i had a sense of humour by-pass the other day ...take care and hope that emergency talk is ready, much love , jayne x
Sorry you are feeling so crap but feel free to rant, moan or whatever, this is the place to do it. No matter how kind and caring friends and family are they can never understand how we truly feel.
You have been an inspiration to me since I came onto the forums last November. You have answered my questions and given advice to others and also made me laugh and then tonight your comment of 'getting on a bike today' has really hit home.
Thinking of you
Love Lesley xxx
Well how can I thank you all?
It is so awful to feel and experience not only the loss of independence but the loss of spirit. I know that I will regain some sort of strenght but it will be from some emergency tank that I never realized existed.
Jane we have to tell the truth, not to scare anyone to hopefully for them to realize if they can get on a bike today, do it. Tomorrow could be too late.
Like you we moved to our lovely home not too long ago, a future planned and a future stolen. I am so glad we did it even though we will have nowhere near as long as we should have hoped for.
Today I got up bathed sat in the lounge, the garden was far too far away.
Ian did the shop and cooked the dinner. We watched the Proms and are on our way to bed to watch Bones.
So I will bid you all a good night and thank you all for your very valued support.
Maybe whoever the Editor of Vita is they may want to include 'The Diary of the Unlucky Ones' in their next edition.
So sorry you're feeling crap. I know that feeling of the body deteriorating fast, with the mind and self just looking on in horror. 3 years ago, 3 years after my primary diagnois we moved out of London. I love our little cottage and our long winding garden in a smaller city..but now three years on, I know what you mean about the home beginning to feel like a prison. My partner will be left too soon in our lovely house...without me, just with memories.
I am not as physically ill as I think you are, but my body is barely keeping me together...walking is problematic and so my horizons are diminishing.
I'm so glad there are people like you Debs to whom I can talk the truth of this dreadful disease...let us tell that truth and leave the sentimenatlity to others if they must.
We don't have to look on the bright side when there is none, but I hope we can use our humour and our dignity to tell a different kind of story than the one churned our falsely by the charities.
I don't comment on every post, but I couldn't pass this by. Please rant and rave, you have every reason to. Ifeel so sad that debsincornwall is suffering.
From all the posts I read some people I follow with interest and empathy and you're one of those people. Every comment on here I totally agree with.
Please carry on posting, you have helped so many people and I for one want to know how things are for you.
With love, prayers and admiration for your fortitude.
Debs feel free. Its crap. I wish there was something i could say or do.
As others say, this is what the site is for.
We try to hold it together a bit for our families. Here you should be able to say what you want.
Much love Julie