Hi Dai

I just can't understand why you should be having such a difficult time – one d–m thing after another. I do feel for you and Janet. Will keep everything crossed that you get on the active arm of the trial.

Good job you are both the sort who won't give up. I will also keep you in my prayers.

Lots of love.

Mavis x

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 Nicola good to hear your dad is home again and having a break from treatment Sometimes a short break is just the thing to get your strength back ready to fight the next round . I laughed out loud at your dads name for myeloma so tell him thanks from me for making my day ! Enjoy the time doing ordinary things together, the eating sounds good,…[Read more]

Hi Glenn
I turned 40 this year,when I got brought into hospital last year i had compression on my spine which could of stopped me using my legs.(I had just been mountain biking and walking in north west Scotland)Had radiotherapy and now on RCD pathway (Myeloma 11 trial).Upper back still aches but Thats about it and went into remission in…[Read more]

Hello Dai
Sorry to read about the short remission but you are a positive bloke hopefully this new combo will turn things around.
I two had a blip over Xmas & new year not related to Myeloma directly.I went for a gentle cycle along the canal near home just to keep things moving after the Xmas glut. Anyway came to a arch bridge going over…[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]

Oh Dai it really does seem unfair that your hard won remission was so short! It sounds as if your excellent doctors are really on the ball thoughwhich helps to take the sting out of it a bit though . I will cross everything for you to get the Carfilmozib on the trial Hang in there Dai your strength and wonderfully positive nature will get you…[Read more]

Hi Eve & Slim
Great to hear the good news and a positive 2012.
Paul

Thankyou all for your replies and kind words I really dont know what I would do without all my lovely cyber friends lots of love Bridget xx

Hi Helen and welcome I am glad you felt able to post on here to get some support , there are so many lovely people on here who may be able to help. Sorry I am not aware of links between myeloma and prostrate cancer though. Your fiance has certainly been through the mill and I am sure the future must seem very bleak at the moment but hopefully he…[Read more]

Hi Nicola it must be a reief for you that your dad has managed to go to the loo Hopefully as the build up clears his depression will ease Its hard to imagine how awful constipation can make you feel , my bowels stopped working for several weeks before I was diagnosed although I was lucky not to have a painful blockage With you by his side I am…[Read more]

Hi David how right you are when you say it puts things in perspective people are just amazing in giving to others when no-one would blame them for concentrating on themselves. A huge loss not only to her family but to so many others love Bridget x

Hi May I am glad you got up courage to post I am sure you will find it easier to cope with support on here. As I am sure you have realised myeloma is a very individual illness and we all react differently to the treatments so its hard to compare one person with another . Try not to get too down that the treatments your mum has had so far havent…[Read more]

Was it this programme?
http://www.bbc.co.uk/iplayer/episode/b019760l/Nicoles_Legacy/

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 Eve

So glad to hear that Slim had been told this marvellous news. Do hope you manage to plan a cruise soon.

All best wishes.

Mavis x

Hi Nicola

I am so sorry that your Dad is having such a difficult time. It must be so hard for you too. I would urge you, while not giving up hope, to take seriously what he is saying. Maybe he has had enough. If things don'ty taker a turn for the better maybe you should be speaking to his medical team about paliative pain control and care…[Read more]