[GillParticipant]

Dear Siobhan

Although I spoke to your mum on the phone I never met her in person.

You have thanked people on here for being her friend but believe me she was a true friend to all of us and will be sadly missed.

Like others I have cried buckets since hearing of your mum's death. She was always one of the first to greet you when you suddenly found mm touching your life and you logged in to this site for the first time. She offered support to everybody and very often brought a smile with that support.

I hope whatever service you hold for Bridget is a celebration of her life and a recognition of her ability to give comfort and support to others

With love and sadness Gill xxx

[GillParticipant]

I am shocked and saddened to hear of Bridget's death. She was a friend to all of us, an avid poster and will be sadly missed.

We maybe saying goodbye to her but I am sure that we will always remember her. I know that she was an avid knitter of headgear and crotchet She made hats for many people on here for when their hair was not their crowning glory due to chemo.

I am sure there are now lots of angels with very pretty hats

Bless you Bridget for all your support and friendship

Gill. xxxx

[GillParticipant]

Dear Dai

Thank you for your reply. Stephen had shingles a little while ago and was in great pain so I am sorry to hear that Bridget is suffering with it and having it effect your eyes must be horrendous. When Stephen was told by one of his chemo nurses that some people get it in their eyes he felt very lucky that it was only down one leg and on one side of his bum.

I am not very good with facebook. I did look up Min and got the wrong lady She very kindly accepted me as a friend but was a 45 year old black lady who looked nothing like "our" Min :-/ I obviously need more practice

Stephen has now relapsed for the fourth time so we have both been pretty down. He seems to sprout a new plasmocytoma (sp?) every day. He is having radiotherapy as I speak on some of the sites and his Drs hope that starting bendomustine next week will help chase off some of the smaller growths. But they have warned us that the prognosis is not very good.

MM is a funny beast Some people manage to carry on for a long time with it and for others, like Stephen, it is so aggressive that nothing seems to touch it.

Love from Gill

[GillParticipant]

Thanks and apologies

Thank you all for your good wishes and sorry for my bad language.

I very rarely use those words (never anything worse) but when angry enough well— you saw the sort of thing I burst out with and believe me I am so so angry. This illness is such a horrid insidious thing. It does bring out anger.

Thank you to the moderators too. It's a wonder they didn't ban me from the site from now on I'd better be like this :-/

[GillParticipant]

It sounds as though you are moving on Roz.

Good luck for the future

Gill x

[GillParticipant]

I have not been on here for a while as we were away and Stephen (mm person ) was not very well.

I was concerned not to see Bridget on here.

I do hope you are feeling a little better Bridget. Do post if you can and I think I speak for all of us when I say we are thinking of you.

Much love Gill xxxx

[GillParticipant]

Gosh such memories SCT, Prof. Schey, Davidson ward, limited allowable foods (a great many eggs hard boiled for 10 minutes, salad cream and a few other bits) Always a daily paper.

We are not too far from Kings (we live in Orpington Kent) but still a darned long walk from Denmark Hill station to Kings.

Good luck to everybody with SCTs coming up and fingers crossed that you all get a good long time from them.

Gill x

[GillParticipant]

So nice to hear from you Min

I am pleased that you moved on but have missed you no end, especially missed someone to moan about regarding our 2 naughtie little Westies (I swear they get worse and Stephen spoils them more and more)

I hope your sight remains OK (I am very, very short sighted and know one day I will be told to stop driving etc so I recognise how scary it can be) I hope you continue to march on and feel stronger. Do stay in touch sometimes if you can bear it

[GillParticipant]

Hi

We have been in France for the last few weeks and Stephen (mm husband) was not very well but although we have internet access it is not always there (blinking French countryside!!)so I am only just catching up with the posts on here

Gail your post really hit home. Dexemethasone is the most evil drug in the world. It does a great deal of good but the affect it has on people turned my teddy bear husband into a nasty, bad tempered, verbaly spiteful person.

The only time I have been angry with Stephen's wonderful team of medical peeps (people) is over the Dex. I was told that they do not warn people of the possibility of "Dexatude" (I made up the word to describe the affects) as "not everybody suffers from that" Yeah try looking on the mm uk site.

When he was put on a lower dose to try and steady his mm the mood changes were still there, but at least he knew it was him and not me. He would calm down quicker and say sorry not scream "It's not me It's you!!!"

I dread to think what happens if someone who is already abusive is prescribed dex. Stephen has always been so laid back, calm and quiet that to see him so cross and loud was horrid.

I knew it was the medication but it still hurt badly. Good luck and Fingers crossed that your husband's medication (husband' s name?) knocks his mm into touch soon and for a long while

Good luck Gill x

[GillParticipant]

Hi Eve

Thanks for replying. I don't expect everybody to contribute I just thought I'd flag it up. Good luck with yor fundraising

Love from Gill x

Hi Teresa Thanks to you too.

In answer to your query LBC is the London Broadcasting Company (more commonly called London's Bigest Conversation) They started up in 1973 and I've been listening ever since. Every year they fund raise for Help a London Child and we don't usually take part as we sponsor a third world child. However this year it is for children with cancer and in particular blood cancers.

You are forwarded to the Virgin site because LBC are using Richard Branson's Virgin Bank to pass the money onto the charity.

I hope this answers your questions

Love from Gill x

[GillParticipant]

Sorry to hear your bad news Mavis fingers crossed for CDT to kick the beastie into touch

Gill x

PS Stephen also has holes in his bones in fact he has what is known medically as a " pepper pot" scull the x ray of it was aweful having a very sick sense of humour he jokes that his scull would make a darned good hanging basket for geraniums

[GillParticipant]

Hi Terry

My husband Stephen is the mm person here. I pull his leg constantly about feeling the cold. This South East London builder who wore T shirts all year round and moaned about everyone else wanting the heating on etc. now wears my Snuggie in the evening and cranks up the heating

I don't know why mm ers seem to feel the cold but it does seem to be a common side effect for many.

Stephen also felt aweful after SCT the doctor did tell him that he woul make him feel worse before he made him feel better and boy oh boy that was the truth

I wish you the very best of luck for a speedy recovery do keep in touch

Kind regards Gill x

[GillParticipant]

Goodness Dai 10 months makes Stephen's 16 months a lifetime:-)

It is heartbreaking to find that things aren't holding back the mm. I love your positivity Dai a lesson we can all learn from

Stephen has learnt to never ever talk about "when I'm gone" I am not in denial but can cope with "well if I go first" any others out there as silly as me?

Love to all Gill x

[GillParticipant]

I don't know how I missed your post at the start a belated welcome from me
Gill x

[GillParticipant]

I am so pleased that everything went well and you all had a chance to celebrate Derek's life as well as mourning his death

Kindest thoughts Gill xx

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