[GillParticipant]

It certainly is addictive and I did not realise before just how bad my geography is!

Gill xx

[GillParticipant]

Blow you under 50s lot If there is any any anarchy going I want to take part and I am 60 🙂 🙂

[GillParticipant]

Hi Jon

Sorry that you have been diagnosed but welcome to a site that nobody wants to join but is sooo supportive. It is my husband that has mm but although he is really interested in everything that is posted on here he is a moron when it comes to computers (brilliant carpenter but technically challenged)

Good luck with your treatment (and your head gear:-D ) Do keep us all posted as to how you are getting on

Gill

[GillParticipant]

So pleased that you are doing well. I remember letting Stephen come to Tescos with me when he first ventured out after his first SCT. I insisted that we go very late at night to avoid people, and he was as excited as a child being given a special outing to do something "normal" (didn't last long we have gone back to sqabbling (sp?) over who pops out to Tescos for bread, milk etc)

Gill xx

[GillParticipant]

Goodness

I don't look for a couple of days and everyone seems to be under the weather. C'mon you lot all get better. Stephen has also had a health scare displayed all the symptoms of a heart attack. Would not go to A&E and mentioned it "in passing" to the chemo nurse when he went for his velcade infusion the following day.

Had all the tests and they are now looking as to whether it might be Angina but doubtful. More likely an "unexplained blip" whatever that is.

On a lighter note regarding the trots (I am sure I have told this story before but one repeats onself after 60) I worked with a woman some years ago whose husband was a teacher. He received a note from a mum that told him that little johnny had been off school with dio dia dre dier all crossed out and she had then written the quick sh*ts

[GillParticipant]

Hi Eve

I do hope your husband's treatment goes well. When my husband was on his first cycle of CDT I designed a chart based on "publisher's" calendar. Changed to weeks and days rather than months

I have tried to attach an example and a template here but the system keeps telling me that they have an "invalid extension"

I managed to email to myself so could try to email it to you if you want

Kind regards Gill

[GillParticipant]

PS site would not let me type the poo poo word hence the stars

[GillParticipant]

Hi Norman

Stephen (husband with mm) had his SCT at Kings College in south London. They were great he has to go back in for a further SCT and this time he wants to try and organise a daily newspaper as he really missed it.

The food was the usual c**p and the big mistake was that he wasn't offered a neutropenic diet. Mind you he did not want to eat and I took up things he might consider. He had his own mini fridge so could keep the bits I took up. Good gracious what a trudge it was from Denmark Hill station to kings with a bag of goodies covered in heavy ice packs and loads of bottled water!!

It is a pity that the webteam have not archived the stuff from the old site. I wrote a sort of blog/diary when Stehen was in Kings and, even if I say it myself, I know that some people found it really useful.

Best of luck Gillxx

[GillParticipant]

Glad you are doing well Shirley. Word of warning re puppy our 10 week old is only JUST learning to poo and pee in the correct place. She looks so proud as she squats on the middle of the kitchen floor!! Her KC registered name is Courageous Cutey. Well she certainly lives up to that but we call her Anya.

I hope your GVH is very mild and you continue to feel well All the best Gill

[GillParticipant]

Hi Min

Stephen's "hump" is not his spine but a mound of fatty tissue at the base of his neck. I googled "Buffalo Hump" and I think it is the nickname for cushings. He has been told it should go when the steroids stop.

He does have tummy slide He never actually had a beer belly but was way off having a 6 pack the tum he had round his middle now goes over his belt.

love Gill

[GillParticipant]

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 Excorsist STOP SCREAMING AT ME". He then said "OK no need to shout"!!!! I explained in a very shouty voice that I wanted to shout as I was so cross.

I felt aweful afterwards but peace is at home again for the moment So to Qote Tom Onwards and Upwards or OAU

Love and good luck from Gillxx

[GillParticipant]

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-)

[GillParticipant]

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 have a second SCT later this year. MM has left him with permanent spine damage and it has now spread to his ribs but, thanks to the treatment he has already had, he no longer relies on crutches or a walking stick although his mobility is still limited.

I will be 61 next month and Stephen will be 56, and although I claim he is my toyboy my daughter informs me that a toyboy must be at least half your age!!!

We have 2 West Highland White Terriers One aged 2 years and one aged 10 weeks. We were spoilt with the older one as she was very clean right from the start. Anyone want a very cute 10 week old poop and wee machine that does it anywhere???

We are closet Francophiles and the thing that has upset Stephen more than anything about relapsing is that the Velcade treatment will take around 6 months and we usually go to France 3/4 times a year for a few weeks at a time. He feels as though he has been grounded for the next 6 months.

Next Please

Love Gill xx

[GillParticipant]

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

[GillParticipant]

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

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