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Deterioration of this disease

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Re: Deterioration of this disease

Good weekend to you too. Going mad in Cardiff, but hopefully after that things will settle (or will that just be the dust!) Wondering what an empty nest shall be like?

juliet66
Member

Re: Deterioration of this disease

He sounds like such a lovely man Debs. Glad happyface is back.

Hopefully you will start to pick up too!!!

Julie

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Re: Deterioration of this disease

Hi, well I am back from chemo I got my treatment but I have to have a blood transfusion next week as red count has gone a bit low. Lets hope it will help improve my breathing it can't get any worse well it can but we won't go there.
Celeste sounds like you have been busy getting the girls off to uni, think of all those long romantic nights you and hubby can have. Well that's after doing all the tidying I know how delightfully messy girls can be!

Thanks Val, Leny, Pat and Marmite.

Ian has 'Happyface' back and he was talking of setting up a support group so when they sort him out maybe he will be able to help others. I think that would be good he has such a calm gentle way about him and going through it the way he is at the moment it would be good to give back.

Well no funny stories no dramas just an ordinary day. Hope you all have a good weekend. Weather here is really lovely still plenty of holiday makers around.

Love Debsxxx

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Re: Deterioration of this disease

Hi Debs & Ian,

Sorry, I havn't been on here recently, getting two daughters ready and delivered to uni - one already delivered to Liverpool, one off to Cardiff on Saturday, - house is bombsite, and I am shattered.

I've addressed this to both of you, because I know from the beginning the special thing about you guys has always been the 'in it together' - quite rare and very special.

Debs I hope that this is just a really bad patch, and that's what I shall believe until you or Brian say different. In any event, it's bloody terrifying and I know that look of sadness toward each other - and it really is incredibly heartbreaking.

I know there is a school of thought that says there is nothing brave or courageous about having breast cancer, but I just don't know what is, if it isn't going through moments like these or going for chemo again and again, when you didn't think you could after the first time. So I think you are both courageous, there are not many times worse than these, and yet you still do not allow your warmth or humour to desert you.

Your GP sounds great, and I wish my husband could access some support, and I know he has often talked about wanting to talk to someone but - where to go?

I'm thinking of you guys and I'm hoping and praying for the very best - with much love Celeste xx

Guest user
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Re: Deterioration of this disease

Hi Debs
Haven't posted on here, but been reading your posts and they really are imspirational so please keep posting when you are up to it.Hope Ian gets the help he needs. I really feel it is so hard on our partners through all this. I know I could cope if I was in their position.
Hope you manage to have your treatment to-day.
We will have a drink to you at our lunch in Bristol on Tuesday, so sorry that you are not well enough to join us. So much has happened to most of us since that first lunch which I think was about February.
This disease really is relentless.
Marmite x

Lenny
Member

Re: Deterioration of this disease

hi debs,

just adding my love and admiration to those who have written before me..... you are just doing amazing by posting and keeping us all up to date not only are we keeping up with you and your progress but we are learning so much from you.... hope each day is a little better.

also tell ian he did such a good thing today and i'm sure he will benfit and not slip down further as a result. my husband has actually been off work with depresion since jan this year. he has gone back part time this week. the dr called it reactive depression, reacting to my cancer last year. i'm sure it would not have happened as severly as it has if he had been able to ask for help sooner. he has now had counselling, medication and acupunture and is definately so much better...

i don't have secondries but this year was harder than last year when i had the full blast of bc treatment. watching the ones we love suffer as a result of this illness is the hardest thing to bare. i hope he and you get all the support you need, tell him to take everything that is going....

you are in my prayers everyday, thank you for allowing us to walk with you on this journey,

lots of love, hugs, sunshine and peace,

lenny
xxxx

cass141
Member

Re: Deterioration of this disease

Hi Debs,

Just to say I hope your treatment goes well tomorrow and that you start to feel a bit stronger soon. I love reading your posts, 'berrygate' had me in stitches! You give so much support to everyone on here and tell it like it is. Keep it up, thinking of you and Ian (glad you have such an understanding gp),

Pat x

scottishlass
Member

Re: Deterioration of this disease

Hi Debs, I am glad your husband has been to see his GP. You certainly have a lot on your plate lass. But I am glad you are keeping in touch with us on this site because we like to know how you are doing. I hope things get better for you, I really do. When I look back myself at one point in the last 10years, I thought I was at deaths door and it you had seen me then you may have thought I was years older than I was as I was frail and bent, in pain and exhausted. Yet as treatments have gone on, I feel more myself again and I feel on top of things again. I know at any point things could change for the worse. But they have been worse and I feel life is better again for the moment anyway. I hope the hospital looks after you well and your treatment tomorrow goes ok. Lots of love and hugs, from Val ( Scottishlass) XX

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Re: Deterioration of this disease

Hi,
today has been a bit hectic, I had to go and sort out bank as they had made an error and canceled my life insurance what dying person cancels life insurance? Answer .... a really daft one! Well I staggered in bank and asked if we could go in a quiet room was told I would have to wait a couple of hours as it was being used. When I said 'what for 3 hours?'
the room as suddenly available. With luck everything was sorted out, so much for telephone banking no wonder the banks are in such a mess. The lady who dealt with me was kind caring and I hope good at her job, she convinced me it is all sorted and direct debit will be paid. We will see.
Ian went to GP and she was lovely with him, she said that we have both coped so well over the past 5 years and our emotion batteries are heading for empty and we need help. She has rung up every couple of months to check on us and could not believe that we have managed so well. She is sorting out Mcmillan and hospice plus counceling Ian is to go back and have bloods done he is going to have an m.o.t.
He said they had a good chat and she is going to ring me for a chat.
So fingers crossed he looked like he had had a bit of a cry. I think there is a sense of relief that he will gain some support.
I have had less time in bed asleep this week, but I am still having breathing problems and my legs are still like jelly. I have started a new book and I am really pleased about this as I have had trouble concentrating. So keep with me please and maybe we will see a turn in the right direction.
Thank you all so much for your support. Off for treatment tomorrow, so hope bloods are good.
Love Debsxxx

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Re: Deterioration of this disease

Hi Debs

Just wanted to say hi as I haven't been on here much lately - sorry you're having such a bad time at the moment - hope it's more the effects of the chemo knocking you for six rather than the uggers.

Thinking of you and Ian and sending lots of love

Lesley xx

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Re: Deterioration of this disease

Hey bubbly,

Thanks for that but we are OK at the moment. We have a lot to be thankful for.

Cheers

Veggie

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Re: Deterioration of this disease

Hi Debs

may you have more days when things get better for you and hubby.

Veggiebean how awful for you and to have your daughter going through it as well.

thinking of everyone

Guest user
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Re: Deterioration of this disease

Hi Debs,
Just to add to everyones good wishes, I read your posts every day and am so pleased you are feeling a little better.

Please keep telling it as it is, it is so good that we can share our feelings. I also have lung mets, I try so hard to remain positive but this is a very hard road that we are going down!!

Anyway enough of that, it is the most beautiful sunny day today which hopefully will make us all feel better.

Take care,
Love,
Janx

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Re: Deterioration of this disease

Hi Debs,

I hope to be another "new" friend. I just wanted to say that I think you're such a generous person, sharing your feelings with us and worrying about Ian. I worry about my hubbie as well, both myself and my daughter have cancer and at the moment I can't shake the feeling that he may end up on his own. Sorry I don't want to moan about myself! I just want to wish you all the best and send you and your family a big hug and strength to face whatever may lie ahead.

Take care

Veggie

Anthi
Member

Re: Deterioration of this disease

Hello Debs
I just wanted to let you know I've been reading your posts and I think about you a lot. I'm glad to read that you've had a better day and also that Ian's looking a bit happier.
Take care
Anthi x

Guest user
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Re: Deterioration of this disease

Hi Debs,
Just to say I'm thinking of you and glad to hear you've had a better day and hope things are beginning to improve and the chemo is doing its stuff. Pleased to hear Ian's a bit more 'happy face' and hope all goes well at the Docs tomorrow.
Love Lesley x x

peacock
Member

Re: Deterioration of this disease

Why is it that so many of our men bury their head in the sands so to speak? Just before my dx my husband kept telling me "it will be ok", "it's going to be nothing serious" and so on, although I secretly kept an open mind I dont think men do that so much and I believe they also fight off any "low" feelings because they think they should.

Even now, although I mention sometimes my future worries, my OH won't hear of anything like "secondaries" or recurrence, he just says "it won't happen" - it is so damn annoying because we all know it could.

I hope that Ian has a good chat with the Dr and that they can offer something, be it medication or just support to help.

Also hope that you are slowly and surely improving Debs too.

AnneS
Member

Re: Deterioration of this disease

Glad today was a little better for you Debs. I hope Ian gets on ok at the doctor's tomorrow. It's such a strain on both of you and your family. I really hope tomorrow brings a good day for you.
You're such a big part of these forums Debs. Thanks so much for sharing. Thinking of you - you've given me such encouragement to grab my life whilst I've got it. Just got back from Paris - another goal achieved and the dog really seems to love the kennels now which is great!
Take care Debs and keep posting.
Much love,
Anne xx

juliet66
Member

Re: Deterioration of this disease

Lovely to hear from you Debs (well i did speak to you on live chat last night, but you know what I mean)!!

Sounds like an improvement to me! Glad Ian has more 'happyface'.

Lets hope this really is an Indian Summer of Fun.

Julie xxx

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Re: Deterioration of this disease

Hi to old friends and new,
it does help when I log on and read the post, it is tough do we tell it as it is or do we hold back? My decision right or wrong is to tell it as it is, I don't have a blog well no that's not true somewhere I think my youngest Donna-Marie set me one up but I have done nothing with it. So if you will let me I will continue to tell all here!
Got up the earliest I ave done in ages 12.30 (I know not really early) had a bath and I noticed when I dried myself I was able to put my panties on without falling over! So that is a bit of improvement I have also visited the kitchen twice today had a few phone calls and although still breathless I managed to have a laugh with a couple of friends.
Ian is going to the Dr's tomorrow so hope he will talk openly I asked did he want me to go with him but he said no. He has been a bit more 'happyface' and less 'sadface' so I have felt a bit better. Lets hope they can help him.
The weather has been better here I know my summer of fun and sun was canceled but looks like lots have suffered with British summer.
It is good that other are joining this thread and I treasure the support you have given me and thanks for all the messages with regard to Ian's struggle it is so hard on our friends and family it is not just about us. Is it?
Love Debsxxx

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Re: Deterioration of this disease

Hello Debs
I'm new on this site , but have been glued for the last couple of days reading all the different posts . You are so amazing (as are all the woman on here ) I am so moved and have such respect ,I'm in total awe of how bloody courageous you and so many others are , I'm terrified at the moment but reading the threads has given me so much comfort. Just amazing how the internet and total strangers can have such impact .Thinking of you xxxxxxxxxxxxxxxxxx

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Re: Deterioration of this disease

Dear Debs

I am following your posts and hoping that you are having some better days. Your posts are so full of life and humour despite everything this shxt disease is throwing at you. Love to you and your husband.
Nicky

nicky08
Community Champion

Re: Deterioration of this disease

Hi Debs
I've not been on here for a while and I'm sorry to see how you are suffering and also Ian. Although I'm not in the same place as you symptom wise I will be at some time so can fully understand what you are saying. It's something we all like to ignore for as long as possible but the reality is that we will all have to face it some time. I hope you can get some relaxation through healing or any other way and that Ian is able to find any help he may need. Thinking of you and hope it's the chemo causing all these problems as it works it's magic on the uggers.
Nicky x

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Re: Deterioration of this disease

Hi Debs

You were so caring when I lost my chemo buddy earlier this year, I hate to think of what you're going through.

Hopefully the treatment will give you some peaceful (and energetic) time to complete your 'bucket list' whatever that entails.

Hugs

Mal x

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Re: Deterioration of this disease

Hi Debs,

I am sorry to hear that you are having breathing problems.
I did when I was on Taxol my Oncologist thought I had fluid in the lungs but nothing showed up on scans and sometimes on this Pax chemo I feel a bit breathless....I think it is a side effect of chemo but nothing that is obvious. Mine effects me later on in the day or when I tired or even when I have just walked up the stairs once to often.

My hubby too is struggling a bit, its such a worry isn't it and I think we feel so responsible as well.
Does Ian have someone he can talk to?
Rob sees a counselor once a month which is his safe place to talk about all the scary stuff.
When Rob struggles it effects his sleeping so I get him on tablets for a few days which helps.
We have a very GP hear, how is yours?

I understand how hard it is to adjust to your condition, I find the whole thing so frustrating and just wanted to say I am sorry there is nothing I can do but I'm with you in spirit... having a few drinks and putting the world to rights.

Sending you a big cyber hug
Tess.XX

Guest user
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Re: Deterioration of this disease

Hello Debs,

I've read this thread often and although I haven't communicated with you before I feel like I know you a little, so just wanted to say that I am thinking of you and your hubby.

Hugs
Al
xx

scottishlass
Member

Re: Deterioration of this disease

Hi Debs,, I am sorry to read that things are not too good at the moment. I wish I could do something to help but feel helpless. Please try and keep posting to let us know how things are going. If it is any help I have been at that point in the past and thought I wouldn't ever feel any better, but surprisingly after treatment I did begin to feel a little stronger. Sorry about Ian too. I know Cornwall quite well and twice managed to get my Bondronate infusion carried out in the Truro Hospital. Are you anywhere near there? Is there somewhere where Ian could get some support himself. Years ago my husband was great when I was undergoing treayment but once I started back at work he went downhill with depression. It was as if he thought I was on the mend and he suddenly realised how awful the previous year had been. We are thinking about you both. Feel free to send me a private message if you want to offload. Love and lots of hugs, Val ( Scottishlass) X

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Re: Deterioration of this disease

Hi debs, just like to say hello and thinking of you, take care love junieliz x

Guest user
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Re: Deterioration of this disease

Debs, just to let you know you are always in my thoughts.

Carol xx

Guest user
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Re: Deterioration of this disease

Hi Diane,
I have done healing and strange I was saying to Ian last week think I need to have some now it did help. I think when we are ill with the chemo we can accept or put up with it in the hope it is working. It is hard to explain but for the first time in 5 years this all seems very real. The loss of little things, doing the house work cooking the evening meal walking around the supermarket and sorting out the garden. It is just all slipping away.
Anyway I am going to ge up and shower while I still can!
Love to all.
Love Debsxxx

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Re: Deterioration of this disease

So do I Debs, you just can't help getting really angry about it sometimes. If it's not because of what it's done to my life and how I knew it it's when I read about people like yourself being scared and really ill with it. It's just not fair. My hubby would be exactly the same Debs, it's not that he hasn't accepted what will happen it's just that he can't actually "go there" and I'm sure he ever will unless it staring him in the face.

Hopefully the chemo will do it's job Debs and it's the fact that it's doing it's job that is making you so ill at the moment. Debs I'm not at all religous but have you that about getting a healing? Not from a curing point of view or a particular religious one but I've had a few and they really do make your mind feel at peace and in a better place (well they do me anyway). My Uncle does it and offered it to me when I was diagnosed and I though "what have I got to lose". It's kinda like what a massage would make you feel like without the physical pushing etc. I just wish I could do something to make you feel better, it's maybe not for you but it just might make you cope a wee bit, I just want to take the fact that your scared away from you. I'm probably speaking a lot of sh*t and when it's getting closer for me no healing in the world will likely stop me feeling scared either. I'm waffling now, I really hope you feel better soon and this is that horrid chemo doing it's stuff.

How many have you had?

Love

Diane

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Re: Deterioration of this disease

Hi Diane,
really pleased you had a good birthday. Don't beat yourself up about telling the children off they soon forget it goes with the territory.

Well I slept all Saturday Ian looked really worried and he has been looking more sad over the past few weeks. It has dawned on him that I am going to die of this sh@t disease and it could be sooner rather than later. Well I forced myself to get up and when I did the place was not as neat as I would like it to be, felt like gong back to bed but had no energy to climb the stairs! Anyway today he has rung the drs for an appointment I don't want him getting depression so maybe if he seeks help now it will help later. It breaks my heart to see him so sad.
Oh I hate what this disease does to us and our loved ones.

Well I am up but not very awake so sat in the lounge day time tv.

Love Debsxxx

Guest user
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Re: Deterioration of this disease

Hi Debs

I'm really sorry your feeling so s**t. Is there nothing they can give you to help with your tiredness, what about steriods? I hope you feel better soon.

I've just had a huge argument with my 10 year little girl Eve. It's funny, when I was first diagnosed I swore I would never shout at them again! Ha Ha, I lost it with her this morning all over something and nothing. Now I'm feeling really guilty but we are only human eh. I don't mind if she remembers me for sometimes shouting at her because that's just life and it would be an unreal one if I didn't.

Diane

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Re: Deterioration of this disease

Hi everyone,
well I hobbled ito chemo got my bloods done and they had improved enogh to carry o with vinerolbine. Dose had been increased but 'Brian' had decided to reduce it for this round to see how I cope. My breathing is still poor but they can't explain why. So I am conducting my own trials with people I know I have decided it is a side effect of avastin. I realize the greats and the cleverer than me have an opinion and that is fine but my research shows several women who have been on avastin are complaining of breathing problems so I have come to my conclusion. Will it make the leading medical papers? I doubt it. Now before I go back to sleep I will try and find a cure!zzzzzzzzzzzzzzzzzzzzzz
Love Debsxxx

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Re: Deterioration of this disease

Hi Spike - this is my very last word on this - after all it is your business. I just wonder if both of you realise the pressure you will be placing on your children, - after all presumably kind hearted neighbours will not be sleeping at night, or will be there all the time.

I recall when I got pneumonia, my husband left me in the morning with a sore throat - not much more - luckily my daughter popped into my bedroom (someimes they do - sometimes not), and realised that I had become very ill over a shot space of time. My husband was carrying out interviews at the time, and didn't feel he could come straight away, and I kept saying 'I was alright' in my total delirium (why do we do that) - my daughter had to call the Dr. and spoke to him on the home visit and assess whether I was any better after his 'magic' injection (I wasn't) - she said afterwards she actually felt the decision was too much responsibility - she is 19 - and a relatively mature one at that.

Afterwards I felt angry that my husband didn't come immediately, and he felt terrible that he got wrapped up in a work thing, which was in comparison realitively trivial.

If he goes, will you ultimately be resentful, and will you be putting your children in a potential untenable position. Don't get guilt get angry - you deserve more.

Guest user
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Re: Deterioration of this disease

Hi there

Spike,I would say, if your OH can't, or won't, acknowledge the seriousness of your situation, then take advantage of his absence....

Have meals delivered. Have a week of junk food if necessary (and if you can safely have it yourself) and eat off paper plates with plastic knives and forks.

If you do get that help with the ironing, get them to do everyone's except his. Ditto his washing.

And so on.

Hope that you - and Debs - are feeling better soon.

X to all

S

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Re: Deterioration of this disease

Hi everyone,
Spike I know where I would be placing one of his golf clubs! It is really difficult for our partners how can they carry on a normal life when they have yo look after us. Ian isn't into blokie pack persuits so I dont have to worry about fishing, golfing trips. I do worry that he needs to get out more but he is the other way and won't leave my side, even our dogs walk has been shortened.
Well I am off to have my bloods done (I have it done in chemo) so if it has improved I will get my vinerolbine, fingers crossed.
I will post later have a lovely day everyone weather here is dry sunny and bright.
Love Debsxxx

scottishlass
Member

Re: Deterioration of this disease

Hi Spike, Have you had any dialogue with your husband about his golfing holiday while you are so unwell and in need of his support? What did he say? I cannot believe he could do this to you especially as you have children to care for too. My heart goes out to you. He needs a talking to....Have you no close male friends who could have a word with him to see what is going on in his head? Is this normal behaviour for him or is this out of the ordinary? Lots of love, Val. If you live near Edinburgh I would help out. Take care honey.

Lenny
Member

Re: Deterioration of this disease

hi spike i agree,
i desperately want to help... if you are nearby i will. i was so angry last night i couldn't post as i know i have no right to comment but you and your health and well being is the main priority here, not just for you but for your children. i do hope that someone can get thru' to him because none of this is helping you deal with your treatment etc.

you are really amazing to keep going and i'm not surprised that you have a network of friends who are willing to take the strain.

with love and wishing i could do something,

lenny
xxxx

ps debs i do hope and pray that you have had a comfortable day, you are in my prayers

Guest user
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Re: Deterioration of this disease

Spike

Post your post code and we can all do meals on wheels for you.

Your man sounds like a selfish sod - sorry, maybe he's in denial but you needs are greater than his, hide his passport, put his ticket on eBay ...

Guest user
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Re: Deterioration of this disease

Hi Celeste

I know what you are saying and in some ways I probably am being brave in order not to feel guilty. I have today spoken with my Macmillan Nurse with a view to her having a discussion with him, but this isn't going to happen before he goes. I really don't think there is anyway that he will not go but I need him to realise the seriousness of my situation and me keep telling him just isn't sinking in.

I have however got a strong network of friends who are going to be cooking me meals and hopefully do the washing and ironing and taking my youngest to school.

Best wishes.

Spike
xx

Guest user
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Re: Deterioration of this disease

God Spike I do feel for you. Really your husband should cancel this golfing holiday for your sake and his. This is totally unrealistic. I do hope you are not being 'brave' in order not to feel guilty.

The pressure this could put on your spine is really not safe. Sorry but i think you should get him to forget this break of his - because frankly it is just not reasonable, and the price you may pay is far too high.

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Re: Deterioration of this disease

Just to say I am thinking of you Debs, and praying that your energy levels will improve. Hope that Deirdre and Spike also see an improvement in their symptoms. I wish they could find a cure for this sh@@ty disease soon.

Linda
x

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Re: Deterioration of this disease

Hi Deidre

I know exactly how you feel, I think our husbands must think alike! Mine just wants to carry on as normal, in fact he's off to Menorca next week for 6 days with friends for a golfing holiday. I'm really ill, can't do much for myself (have a collapsed vertebrae so my posture is awful and I can't support myself and my breathing is affected so if I walk upstairs I have to sit down for 5 mins to get my breath back, not to mention the fact that the cancer has spread to the mesentery surrounding my stomach and I can eat very well and constantly feel sick, and yes the constant tiredness). I have 3 children, age 10-17 who need help and I have to feed. My husband is just burying his head in the sand and not even considering how I'm going to feed the children next week let alone myself!!

I do however get Carers help 3 hours per week which was arranged through my local hospice. This is very helpful with housework but I think next week I'll have to get help with meals.

Debs, I'm sure you are not giving up but sometimes forward planning will help put your mind at rest. I've been thinking along the same lines as regards funeral directors etc.

Well, that's enough of a moan. Take care everyone.

Spike
xx

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Re: Deterioration of this disease

Hey hill climbers

Just to say I am thinking of you all and so frustrated by what you are going through. Wish there was something I could say or do for you all.

Love

Jane x

Guest user
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Re: Deterioration of this disease

Hi debs

Just wanted to say that I'm thinking of you and hoping this utter bone weariness passes.

'Snuggling up' sounds like a good idea....

X

S

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Re: Deterioration of this disease

Thinking of you ,and praying that somthing good happens for you soon ,and rant as much as you like theres always someone listening to you ,freda x

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Re: Deterioration of this disease

So sorry you aren't getting any energy back Debs, I hope something comes right for you soon and you can have some freedom from the constraints of this disease.

Hugs
Nikki

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Re: Deterioration of this disease

Well I've just returned from Spain - and actually the only time I can feel 'normal' is when everyone else is on holiday and they are either swimmin, sleepin or chillin and more sleepin, which apart from swimmin is about my daily routine. I'm going to have my meds assessed cos I am pretty fed up with feeling tired too. My onc was going to look into the possibility of ritalin, but I havn't seen him since. Debs your body has been under a whole lot of pressure. Snuggle up and wait until it passess.

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Re: Deterioration of this disease

Hi Debs

So sorry things are not getting better in terms of energy levels. At least it seems your fighting spirit is well and truly intact.

I guess your daughter is hoping she can help - difficult when you have never been there. I was on the other side of the fence when my mum had just had a hip replacement, I went round regularly to make sure she went for a walk, after the fact she told various people that I turned up to torture her!

M&S is definitely the way to go, followed up by Magnums or Ben and Jerry's

Fiona