Hi Everyone
Thanks for your wishers,I know it,s just the start,but to us its a light at the end of a very long tunnel.
We will go to kings,and see what they offer on SCT but we know how the consultant feels,but as he said Kings do hundreds and they are the experts.

We are still piled up with appointments so no travelling yet,hope to be able…[Read more]

Hi Bridget

I think you would be good as our resident expert on financial matters on this site,at our hospital there is no information except a notice board note telling you to get in touch with macmillan office.I tried this when Slim was in hospital,never received a reply,made me so angry it put me off trying.
later applied for,some…[Read more]

Great news Eve you must both be on cloud nine!! Poor Slim has been through so much it must such a relief Get travelling and enjoy all the things you have been dreaming of love Bridget x

Hi Heather,
I have to ask where have you been,no insult,but people like you can be such a help on a site like this,we know from other people the NHS are not the best when it comes to there own staff.

If you want a honest answer from me,both of you retire as soon as possible,
I know what you are thinking,it,s not about money it,s your quality…[Read more]

Hi Bridget

Good to hear from you and that you are on form as usual. I think the thought of you wandering round "Big Brother" in a bikini quite a powerful image!! I bet it would increase their ratings.

I have to say that the extra support side at my hospital is nil. Fortunately I didn't need it as I already had DLA following four ops for…[Read more]

Hello Pilgrim

Welcome to this site! I know you will find it helpful.

I do hope you get a diagnosis one way or the other soon. Do bear in mind that, even if you do, if your protein level isn't too high you need not nessacarily need to have treatment straight away, apart form something for the bones – probably zometa monthly which isn't a…[Read more]

Hi Glen

Welcome to the site that we all say we'd rather not belong to!!! What an upbeat post in view of all you have gone through in the last couple on months. I think we'd all say that a positive attitude really helps. although we'd all admit to down times with this dreaded desease that most of us had never heard of.

Do hoped the…[Read more]

Hi Pilgrim
I would agree completly about banks,many many years ago,I was desperate,saw my female bank manager who had so much faith in me,these days its computers or the legal department full of kids out of uni who decide you fate.God Help US.

Its just having the energy to fight the battle,when you have enough to worry about without banks…[Read more]

Hi Glen
My name is Eve I know Clatterbridge ,good hospital for Cancer,going back years live in the south now.

It is a bit of a shock to the system,CTD is the first chemo ,never heard of PAD but there again my husband is on Myeloma X1 trials so next chemo was Velcade,but it is a bit of a post code lottery.My hubby is still trying to get…[Read more]

Hi Kay
Sorry to hear you think its,back again,just wishing you good luck for tomorrow,Slims in the same boat except he has never had remission,tomorrow we find out if the second lot of chemo Velcade has worked,I try not to think to far ahead,as we have been here before.
Hope all goes well Kay,best wishers Eve

Hi Nicola
I know its hard but may be your dad is better off at home,you do need that home visit to asses how much help is needed,you do not say if he has a carer who can provide a good level of care.

I know what hospitals are like,the nurses just do not have the time,My husband spent 22 days in hospital 9 in itu,I spent 12 hours a day there…[Read more]

Hello Pilgrim

I think you have done the right thing finding out as much as you can,Myeloma is sometimes very hard to diagnose,and often gets over looked as a cause for some ones illness,at least you have a good GP who has taken note of what you have said and acted on it.Many people get over looked until there bones start breaking then the…[Read more]

Hi Nicola
Sorry you had to join this site,as for help no one would be able to help with so little information,may i suggest you ring Ellen first thing tomorrow.

Why have they sent you father out with out.with out some form of back up,How an earth are you coping ,what medication is your dad on,lots of questions,please ring Ellen, Eve

Hi Nicola so sorry your dad is having such an awful time, it must be so hard for you Its little wonder he is feeling down after having been through so much so try not to take it too much to heart when he talks of dying The doctors wouldnt put him through chemo if they didnt think he had a fighting chance. Did he have radiotherapy recently? That…[Read more]

Hi Kay

Like others I am disappointed for you that your PP levels are rising. I do hope that Friday brings results that aren't as disappointing as you fear. Let's hope you have a good partial response to your SCT.

Do let us know how you get on.

Love

Mavis x

Dear Nicola

I am sorry your dad is having such a distressing time and that you are having to watch while feeling helpless.

Sorry I haven't got any specific medical type advoce to give you, but it does strike me that you need to have an honest conversation with your dad's medical team. Although it is difficult to say it, it would be terrible…[Read more]

Hi Min and Stuart it is reassuring to know there are people to help at our hospitals Those forms are such a nightmare I break out in a sweat even though my job entailed helping others fill out benefit forms , just cant do my own On the radio today there was a discussion on the proposed reforms to disability benefits , made me so angry there was…[Read more]