Hi Dai

Just been looking at a site about the trials,sounds very interesting you better hurry up with that 24 hr bottle,as I got the impression that it,s only 700 per country.
Those big bottles get heavy,cannot tell you how many Slim has filled plus they are heavy to carry any distance,so as well as the brown bag it pays to use a couple of…[Read more]

Hi David

Just watched the video,it does bring home about lack of wards for seriously ill teenagers,as you know,my grandson who has CP spends a lot of time in hospitals,last time because he is now 16,he was put on an adult ward,one side an old man coughing phlegm all night,and on the other side,a man making the most fowl smells,with my daughter…[Read more]

Hi Sarah

Just looking in ,could not help with headaches ,but hope the consultant helped on the last visit.Eve

Hi Gina
What is a fright night ????

Glad to see you are getting on with your lives,it,s hard but it is what your mum would have wished,remember you have good memories there,and that is important,i found the worst thing in the early years was wanting to pick up the phone to tell my mum some news,that,s what I found hard.

But life goes on,and…[Read more]

Hi Dai

So sorry to hear your news.All your hopes built up then crashing down again,this is what we felt when Slim was on CTD one minute on are way to remission with kappa light chains at 10,bone marrow taken for trials only to be told when we saw consultant,that he was shocked to find it had gone up to 80% in bones although kappa light chains…[Read more]

Thanks Everyone
For all your support,It is such good news,which has taken a long time to get to this point,but it is lovely to be here,sound a bit stupid,but at times just could not see the light at the end of the tunnel,so its good,good and even better.;-) 😎 🙂

I cannot help thinking about some people who are not posting like Sharon who…[Read more]

Hi Glenn
I originally am a scoucer,so I know that Clatterbridge from the start has all ways been a designated Cancer hospital,so you are in good hands.

Slims on the Velcade with Dex and Cyclophosphanide. VDC for short,as you progress with Zometa you will find you can do more things,iam all ways nagging Slim about doing to much,his answer is I…[Read more]

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]

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 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

Dear Mari
Glad to hear your Christmas was good,Slim slept through most of Christmas,but it was still better than last year,wish I could get back into reading,to be able to stop thinking about this myeloma.

No Slim did not have sub cut,when I asked about it,was told it was effecting some people,also has not come to our hospital yet!!!!!
Its…[Read more]

Hi Dai
Well you seem to be doing well getting out and about,happy belated birthday wishers,are you one of these people who only get one present instead of two because your birthday is close to christmas?????

Slims sleep patten was all over the place awake in the early hours and tired and cat napping in the day,doctor gave him a very mild…[Read more]

Hi Everyone
So glad everyone had a lovely Christmas,
We went to one of my daughters who,s husband cooked a lovely meal,Slim managed a sip of champagne,and some christmas dinner,then went to the land of nod,decided to take him home as everyone was tip toeing round him,was in bed by 5 pm.,Boxing day came and went for Slim,but I had a lovely walk…[Read more]