Hi Tom
Well I think you should try again,and if you are refused appeal,you are supposed to fill the form in and put you worse day down!!!
Tom what can they only NO so you have nothing to loose,all this money you are paying for a pension you might not see.as for the small private pension,if you explain the circumstances and the fact you will not have a long retirement ,some pensions will pay out more because you are not expected to live until your 80.
If I started at 6am until 2 it's no life you must have to go to bed ay a stupid hour, that's not living its existing.Eve
Hi Keith
Well they are working hard on you,so at this present hospital seems the place for you,how is your wife managing with all this,she must be very worried about you.??
Once they find the infection,they should be able to treat it,as for going commando style, what was the nurse doing ,I do not think that's the answer Keith,I no Slim was very confused when he was ill,the hospital s usually use paracetamol to bring down temperature .
Let them look after you Keith,and give my regards to your wife. Love Eve
Hi Maureen
How are things going,Ian must be feeling low,if he is anything like my husband he will not be voicing his fears,because he will be worried about you,plus the Dex confuse s them,when Slim was like that for some reason he got it into his head,that I wanted to stop coming,I was just getting so worn out, I would ring him in the morning,hoping he would say come it later,but he just wanted me to look after him,but Kings was a long way away,looking back he can now see how unreasonable he was,but when they are stuck in hospital it's very hard to see things logical.
I took scrabble in and we would play,as he hates tv this seemed to help,there is only so much you can talk about,and the more you keep telling them what's going on in the world the more they feel they are getting left behind.
Hope you find the energy,I also got a cleaner so I did not have to face that when I got home late,and she is so good I kept her on. Love Eve.
Hi Ann and Peter
He is having a hard time,when Slim was like that,the nurses said as long as he was on a drip and trying to get fluid down not to worry about food,I would suggest old clothiers that can be thrown away,it is an emotional time for them,as there not use to being so helpless .
It will soon be over,cold milk seemed to help Slim and he still drinks a lot of it. Love Eve
Hi Maureen
I use to just draw the curtains and get on with it,I cannot tell you how many times I went in ai 8am and he had been ringing for a commode,I use to go out to the sluice room disinfect the commode help him,then took it out cleaned and disinfected it again,then a nurse would pop her head round and ask what he wanted half a hour later,have to be careful here because his time in one ward was unbelievable.
They put the auxiliary in uniform and they consider good nursing beneath them!!! .Maureen as far as I was concerned they were not going to kill my husband off with an infection,and the consultant wanted him near the nursing station ,they just got use to me coming in and left me to it,I must admit I am a bit scary when I get a bee in my bonnet.but when you have to tell a qualified nurse that the swelling in an arm is because the vein has collapsed ,it's frightening and she left it because she said a mother nurse would be coming on who would redo it.,a nurse gave him someone's tablets although he said there not mine,she only checked after he took them.i could go on,but its over now ,I just know you have to be active yourself,there not gods. Love Eve.
Hi Jane
Nice to hear from you,take it your under fifty to introduce your self on there,people might miss it,you might like to go to newcomers,people are more likely to see it.
Helps if you tell a bit about yourself as some actually meet in hospitals and might be of use to you if you are worried about anything. Eve
Hi Keith
You sound a bit down,let's not think about what the doctor said,lets just think I am going to jump the hurdle, if its any help to you when Slim was being taken to ITU a young doctor,said we're taking you to ITU I cannot promise you will not die,he had not even asked,luckly he cannot remember .
They do not know everything Keith,what is right for one person might not be right for the next,and your a fighter you would not have got as far as you have,without that fighting spirit. I will keep every thing crossed for you Keith. Love Eve
Hi Helen
I thought something might be up,as no postings,I find I miss things if I do not look in daily
I am sorry,are you not tempted to start treatment while its low !!! The reason I ask this is the was an article about people who had CDT then Velcade having better remission time might not mean anything though.
It,s a strange place to be in remission it is sitting on your shoulder,no matter if you keep trying to forget it.the people who seem to be coming out of remission seem to be having lots of bad general health coughs and colds,I am going to use this as a marker for Slim,as I have this constant worry it will be missed without a BMB.i hope I start to have some. Confidence in remission soon,as I though was remission came,we would enjoy life a bit more,but it is a waiting game.
Velcade worked well for Slim,and felt better generally with treatment,it was lovely to have a week off,but a bit of a hard slog going to hospital twice a day 2times a week .
Slim gets the result of his BMB on the 22 march.so we are waiting..!!! He has to be the one,that it does not show.
Be like Wendy and get as many holidays in now love Eve
Hi Everyone
Mavis you are allowed to be cantankerous when you are over 65 I cannot wait,I am practising now,what,s this about Helen which Helen is out of remission.????
When I said about chances of Tom not reaching 67 I was talking about betting odds,would you not call it a sure bet,but saying that 2 years ago when Slims Myeloma was in full bloom,we went to a Fathers Day Barby,a number of Dad were there,as people looked to say Slims popping his clogs,we thought bak recently ,three have died during those 2 years,so one can never tell,Mavis if he is looking down on you and telling you your numbers up.
I am all for keeping cheerful and fighting,but not burying my head in the sand,I would call it being practical and looking to the future,and I am so glad Tom is and making plans because if he carries on 6am start he might be a sure bet,he would be pushing up the daisies.
He would even be able to we're his onesie. ,!!! Love Eve
Hi Jean And Frank,
I will not tell you not to worry,because you will,but if you are unsure of anything ask the nurses or if you think about something once you come home,ask on here,there are enough people on here,who have all gone down that path.
Remember Jean,after about six days,old clothes you can throw away,tell him not to get embarrassed,these nurses who look 15 have seen it all before,and don't be surprised if Frank is a little tearful towards the end,as the ones who tend to hold it all in, it makes the realise how vulnerable they have become.
You know Slim and my thoughts will be with you both ,and I will try to get on with the scrabble Jean.All the best wishes,soon it will all be over,and on to the next learning curve,how to live with remission. Love Eve
Hi Tom
We have it in for shelted accommodation as we decided the same thing,Slim surprised me,as it was his surges ten ,we found the council did not want to know own you own property you do not get many points,so the more you have worked and looked after yourself the less you get, a friend suggested Sanctury Housing,they do not mind if you own a property,as long as there is a good reason for you applying and I think you have that,look on the computer see if there is anything in your area.
We have just been accepted to be put on the list for alms housing,one of the main reasons for doing this is,last time when Slim was so ill I managed but it was hard,and we live in a flat on the ground floor how people manage with stairs I do not know.all my floors were changed to wooded floors,we have a cleaner for 2 hours as slim can no longer do heavy stuff,walking the dog in this bitter cold is hard work takes him ages ti get warmed up again,and we fight over who is carrying. The shopping,as my back has always been weak,plus I
now have a frozen shoulder,but I do worry hs back will break again because the whole spine was effected with Myeloma
I think people often leave it to late in making these decision ,you need to think how will I be in 5 years.
I took my small pension early had about 8 thousand tax free,and I get about £28 a week.you will be amazed how far it goes.
Good luck with your decision Tom.
Hi Maureen
You must find it hard with working,have a word with husband,and tell him to make sure they turn him over,and ask can the physo massage his pressure points,or when you go in give him a massage,it,s good for circulation plus relaxing and in general will make him feel better.
When Slim was in hospital an I pad with Skype on it helped keep Slim in touch,plus a kindle less heavy to lift than books,
Ian has a goal now to get better for the wedding,I do think it is important to have some thing to look forward too ,as there world gets very small when in hospital and very I'll. Eve
Hi Sue
Well I was up at 5am this morning and I took 2 tablets,had to get up with frozen shoulder and bad leg,a cup of tea and a piece of toast,so I could take pain killers and I am only the carer. Lol, I have gone down hill,as Slim is getting better,I think the whole 2 years hit me in one go,so may be sleeping tablets are not the answer.
Waiting on BMB results,plus you look back and think How did I manage for those 2 years,plus the knowledge that it is going to come back !!!,,I take my hat off to you,how we'll you have coped with your situation with very little help,this blasted disease makes us in to very strong women,so I can say,yes you will cope!!!!
It's a pity this site does not have a thread to it,that can tell you who is on line,they do on face book,so it's easy to pop in and have a chat,are you on face book sue???
There are a few from Myeloma on,and I find it easier to keep up,it's lovely to hear Wendy,who is having so many holidays its hard to keep up, I suppose she is making the most of it as she has come out of remission,but is well in herself.
Sue you will do fine,reach out and talk to people it helps,hope every thing goes well for you on Friday.Love Eve
Hi Tom
I do not know what you situation is Tom,Dai is right in what he says about the physical side of claiming,but they can not discriminate between physical and the mental ability of the person although they have tried for years,because they do not like paying for a person,eg with early dementia or mental issues.
Tom as you say your frozen of 29k would be handy for your wife but which would she prefer, £125 a month now and a less exhausted husband or£ 29 to spend when your dead !!! She will get her pension topped up when you die any way Tom !!!
My advice is you are allowed to take about 8 thousand tax free from your frozen pension (check this ) ,this leaves you with about 100£ a month. Why not go to your doctors and tell him the hours you work 6am To 2 pm,and say your body can no longer carry on,ask for time off to recover ,you will have to put a claim in,and most properly have to appeal,you should at least get the smaller amount,you do need an expert to fill in the forms,you wife might be entitled to careers allowance,you can tell on here,she does a lot for you.
It might be hard to manage at first,but may be you could go part time,instead of unsociable hours.
You have to get your employer,doctor on board,find someone to fill in the form,to put it bluntly,you have not got a hope in hell to work until you are 67.even I can see that Tom,sorry to be so brutal .
With age comes knowledge ,and the one thing I have learned,is all the money in the world means nothing if you do not have your health.I wish you good health Love Eve.
Hi Maureen
It makes me angry when I. Hear people having bed sores,the NHS have ripple beds and if he was given the nursing he should of had,a man of his age should not be in this position,I could under stand it if he was frail,as it is very hard to avoid bed sores.
I can only tell you all the time my husband was in hospital,I bed bathed him and massaged his body to get the blood flowing all pressure points were creamed and if any readness persisted I made sure he never had pressure on his body,it is the only way to do it,do it yourself the nurses just let me get on with it,I had the time. They do not.if he cannot move get pillows and make sure he is turned every few hours,
Maureen I use to go into hospital at 8am and leave at8pm,hard work but the nurses knew and respected,that I took god care of my husband,I am sure that is why he was allowed home with lots of equipment ,took a few months getting him on his feet.
Maureen I do not know you situation but if you can spend the time doing this its worth it .Eve
