This such a great idea to ask for our input on technical services .I am not up to it though mores the pity , the number of catnips I need during the day at the moment would be bound to see me fall asleep mid sentence !! I hope someone more able can do it love Bridget aka Nodding Nelly

Why Eve…

If I had a suspicious nature I'd say that behind the flattery you were trying to volunteer me for a job… a specific job that entails putting across the Myeloma patient's perspective on the provision of laboratory services and laboratory tests… not to a Myeloma InfoDay, where you are surrounded and supported by like minds… but…[Read more]

Hi Craig
It is nice to think someone actually wants to know what we think!!!:-P
There are some wonderful people on here ,Like Dai who moved from Wales to Nottingham for better treatment,he is not posting at this moment,which is unusual.Could not get in to your RCP Path email address to check you,thought I would let you know!!!.
I cannot help…[Read more]

Sarah,

From the second you told us that Gordon was coming home I have been waiting on this post. In the meantime I have been willing strength and positive thoughts, simple prayers and my kindred love towards you both.

I wish I'd known Gordon… I thought of him so often this week-end… in the bed in your living room with the amazing harvest…[Read more]

Hi Helen
It is Tom,On wards and upwards,he has not been on for awhile,so it is either his cucumbers or he is on holiday:-)
i know what you mean though ,he just makes you smile.Eve

Hi Helen I am not sure I am going to be much help on this one What I do know though is that the very toxic medicines we take as treatment can be harmful to liver and kidneys as they try to flush it out It may be your mum needs a short break to give her liver time to recover , I would imagine they are being very cautious and doing a scan will…[Read more]

Dear Sarah

I am so sorry to hear about gordon you and your family have my heartfelt sympathy God Bless you all

Love JO

Hi everybody
i went through all his work,the arsenic and vitamin C one,impressed me,the patient concerned was given 2 weeks,and he was still alive 6 years later,he summed it up,he was keeping him on top of the grass LOL.
he seems to trying lots of different combinations with different drugs,
Anyway Jo Off to hospital today for bloods,and made…[Read more]

Dear Sarah, i am so sorry for your loss, i cannot even imagine how devastated you are.
I will be thinking of you and your family at this sad time
Gina xxxx

Dear Sarah there are no words to express how sad I am to hear Gordon has lost the battle against this bloody awful illness . Both of you faced myeloma with such positivity , strength and humour it just doesnt seem fair .I am sure you will use those qualities to get through the dark days ahead . I hope you will feel able to post from time to time…[Read more]

Sarah
What can i say,my heart goes out to you,it does seem so unfair ,you must be heart broken.I thought you might have had a little bit more time together,to adjust to the situation and reflect together on all you have shared,but time ran out.I am so sorry Sarah.
Take comfort,in your grandchildren, life goes on,you will look at them and see the…[Read more]

Hi
I think James berenson have a lot of very intering things to say I have been following his post closely as I have not had an SCT, what he says encourages me a lot
Regards Jo;-)

hi Scott
glad to hear you are ok I felt quite tired when I finished CDT and had reguler blood transfusions for at least eighteen months after I was first diagnosed I believe a lot of this is to do with the lack of kidney function
but the good news is I havn't had one for nearly a year now so things do get better i still have a bit of PN in my…[Read more]

Hello Eve

I chose not have an SCT as my kidneys were also very damaged apart from the higher mortality rate the chances of the chemo destroying my kidneys so havineg to go on dialysis three times a week for the rest of my life I decided to take a chance and just go with maintenance upto now i have been ok Hope Slim is ok give him my regards

Love Jo

Hi Peter and Scott
Very interesting from Dr Berenson,Trying to find all the information i can,to try to understand the going down sct or not.!!!!
My husband Slim has just finished 6cycle of ctd,it looks if they will not be recommending sct,because of his lungs,when he had septic pneumonia,the cat scan showed mass blood clots plus wedge shape…[Read more]

Hi Peggy
Do not know how you managed it but you have two post in General with same title one very up beat,other one not so,!!!! just found this one,as i was looking to see how you were managing:-)
I do not know if anybody has mentioned it,but drinking water is so important for your kidneys,if you find it hard drink anything you like,you may find…[Read more]

Hi Dai it still shocks me just how long you have been kept waiting for a potentially life-saving procedure that takes minutes to do !! I think Eve may have a point about publicity if only to highlight a very serious problem in the dire lack of resources in this area On the other hand as you said until now you have not had any complaints about…[Read more]

Hi there Dai
You have a large leg but still keeping your sense of humour.:-P
May I say Dai your a man who is very good with words,so why not use this gift,you must have a local paper!!!!,copies to executives plus,to paper,hate to say it,but works wonders,like a pain in there side.
Other option is to pay privately it should not cost very much…[Read more]

Well i hope they get it sorted Dai and you are soon on the road to recovery.
Thnking of you
Gina xx

Sorry we missed your post Lara. Its my mum that has myeloma and its hard to see someone you love go through this disease. I cant really help with your question but i know there are lots of lovely people on here that will be able to give you some good advice.
I just want to say hello and will be thinking about you and your dad
Gina xx