Dear Incredible Hulk AKA Bridget,

I am sorry you feel so wretched. Stephen is on Dex at the moment. He looks like a chipmunk, has lost his taste and has swapped his personality for that of Atilla the Hun.

It got so bad over the weekend that I lost it and shouted "I don't care if it is the Dex talking, you talking or the evil one from the…[Read more]

Hi Keith

Try contacting the web team they helped me when I could not get on the new site

Gill

PS talking of eye candy where's your photo8-)

Hi All

We live in Orpington Kent. It is my husband Stephen who has mm, diagnosed November 2008 after the doctors first thought he had a trapped nerve. He had CDT and then a SCT in June/July 2009 in King's College London but sadly after @ 18 months remission Stephen has relapsed and is now on Velcade and the dreaded dex. We are hoping he will…[Read more]

Stephen also has a PICC line in the crook of his elbow. It has not caused any problems and it means that blood can be taken and medication given through it without having to put a further needle into a vein

Gill

Thankyou Gaye,
With regard to the low neutrophil count, Patrick has had extremely low counts for over a year now. Mostly the count is 0.5 but has dropped down on occasion hence the number of stays in hospital last year with neutropaenic sepsis.Similar to you Patrick has a low platelet count too.
He is also suffering with more pain this time in…[Read more]

I too have this on our office wall. At the bottom it states Caius Petronius AD66.

I have no idea who Caius Petrnius was but agree that nothing much changes

Gill

Well done you. Hope it all goes well xxx gill

I am so pleased that the biopsy fairy was there for you. Fingers crossed that your results are good Gill xx

Hi Jo,
Yes, Patrick was on Bendamustine with Thalidomide for almost a year with very good results. The only drawback was that the Bendamustine appeared to knock back both his platelet and red cell count, I will say however that this was also a similar scenario with Revlimid previously.Patrick did have to take anti-sickness tabs before and on the…[Read more]

Stephen has not been too well, he's now on velcade IV with dex as a side line !! It is all taking its toll but we collected the puppy yesterday

It was a good move in our life to get the puppy but very tiring. Our 2 year old westie, Echo (short for Ecosse) has always adored visiting dogs. Well what went wrong here??? She is now waiting for Anya…[Read more]

Oh you rotten lot! I have only just picked up on this thread and am so moved by everybody's thoughts that it is hard to see the keyboard through the tears.

I too would like to say thank you to everybody on here for support, encouragement and some smiles.

Love from Gill xx

I am really sorry Ron I am guilty as charged it was me that started the "made up" word of dexatude to describe the horrible attitude my mild mannered kind and caring husband gets when he is on the dexamethasone. I am truly sorry if I misled you. I do know that when I asked one of Stephen's chemo nurses about the mood swings he gets she told me…[Read more]

Hi Bridget

Hope you are feeling better bit by bit. I remember Stephen being told that the RT would not help the pain much to start with and did take a while for it to diminish.
love gill xxx

Good luck to Peter with the revlamid hope he does very well on it and good luck to you with Peter taking the dex. Stephen is on a rest week (no bloody dex thank goodness!!!)

Gill xx

PS like the new hair colour on your photo but not sure about the lolling tongue:-)

Hi Laura

I am so sorry your mum has been diagnosed with mm. What a shock for both of you. It is my husband with mm (diagnosed 2008 aged 53)

There is an under 50s site on here that may be of some help to you and your mum (I don't think they are that fussy about a year here or there around the 50 mark:-) . Can you talk to whoever is…[Read more]

Hi Gaye

I have not been able to post for a while (must have been gremlins in my computer) so am catching up. I do hope you are getting on better with your round of drugs.

As for your NIMBYs I am nowhere nearly as charitable as you are. I hope these NIMBYs DO need a hospice at some stage and there is not one for them as some other ar**h**e…[Read more]

That is very clever