[GillParticipant]

Sorry you had to join us but welcome. There is not a great deal that I can add to the advice you have had from others. Eat when you can and eat everything you fancy.

HEY Pig out sometimes 🙂

Gill xx

PS what does HAKA mean in English

[GillParticipant]

Hi I have been off line for so long I ended up with withdrawal symptoms (moan for another day).

But now I am catching up I just wanted to say the very best of luck for Bruce's SCT.

Everybody has given you great advice. The only thing I wish I had done differently was I wish I'd kept a diary when my husband (Stephen) was in for his SCT.

I always thought I would remember every minute and, for a while, I did. It soon faded when he came home.

I did write a kind of blog on the old site but despite requests the webteam seem unable or unwilling to retrieve the information on there.

Good Luck to you both Gill xx

[GillParticipant]

We have already had our flu jabs. We have had them every year since Stephen was diagnosed with mm (aged 53) I did not qualify for the jab automaticaly at that time as, although Stephen is my Toy Boy ;-), I was only 58 HOWEVER I qualified (found out after a bit of research)because I lived with Stephen who has a compromised immune system (I am not a medic but I saw it that if I got flu and Stephen and I shared a bed, kitchen, air etc. I could make him quite ill)

Pneumonia Jab??? I have a feeling that once given it lasts for quite a few years. We have both had it (again when Stephen was diagnosed) and we were told it lasts for 10 years.

I hope this may be of some help

Gill xx

[GillParticipant]

You are not a burden Mari I am so sorry that Steve did not have better news but hold on in there the figures might change. When do you see the consultant again?

I am sure that we all have our cyber fingers crossed for you both.

Do keep in touch Good luck and love from Gill

[GillParticipant]

Yuck Roz I hate kedgeree 🙁 But what a great word for the game

ERRONEOUS was my first try but, thinking it might be a bit too racy, I thought of ERSTWHILE.

I leave it to others to choose whether to be racy or not 🙂

[GillParticipant]

I too believe that treatment is cost led to a point. Our health insurance would only fund Stephen on 3 lots of Zometa this time round as they had already paid for Velcade during the past year. Gill xxx

[GillParticipant]

I am So Pleased to hear your news Dai. Long may it continue. Yes do make some plans that's what people do when the sword of Damacles (sp) has moved away for a while.

much love Gill xxx

PS you owe it to all of us on here to go and have some fun 🙂 xxx

PPS I think the Ether Elves are still about I have lost this thread (or the plot) twice now

[GillParticipant]

Congratulations Nettie. What a brave lady you are. Well done xxx

[GillParticipant]

Hi Terry

We must indeed be almost neighbours, as we live in the last road on the right at the bottom of Poverest Hill. We are about half way along where the semis are. (The one with the iron gates).

Stephen hasn?t attended Kings since his last SCT so it was not us you saw. Mind you I just love the idea that we have doppelgangers that are the same age as we were in that picture as it was taken about 5 years ago and, not only are we older in my case fatter and greyer.

Stephen is also under Prof. Schey. Although he has only seen him once or twice I know that Schey attends a case meeting on a Friday where Stephen may be discussed by his oncologist, radiologist etc if necessary.

Stephen is seen at Chelsfield Hospital but has also attended Fawkham Manor, Darenth Valley and Maidstone. His oncologist is Dr Tariq Shaffi and Dr Visioli organises his radiology. Stephen has never been allocated a "specialist nurse" either and the Mac Millan staff have never been in contact with us. We do have numbers for the Oncologist (both his office and mobile) and the Chemo Nurses and the nurses also have a mobile "out of hours" number so I think Stephen is covered (fingers crossed).

I do hope all goes well for you. Do keep posting I just know you will get a huge amount of support from everybody on here

Best wishes Gill x

PS to apologies to non Kent/London Dwellers us Southerners have taken over the site 🙂

[GillParticipant]

Gosh Eve. He is cute but for a moment I thought it was you 🙂

[GillParticipant]

Hi Terry and Welcome

If you are attending Sidcup you cannot be very far away from us we live in Orpington. Stephen (husband with mm) was diagnosed in 2008 and has relapsed after his second SCT failed. He is under Prof Schey at Kings.

I am not very up on the success rate of all the different drugs, but I don't think velcade is a last resort. Stephen did have velcade but starts on revlimid soon. This used to be thought of as an "end of life treatment" and not sanctioned in a lot areas at one time. But Stephen's oncologist is saying that there are another couple that can be tried even though his prognosis is not too good at the moment.

Good luck Gill

PS I know very little about the drugs used but the reason I mentioned revlimid is that when Stephen's mm was first diagnosed there was a huge hoo ha going on regarding allowing the use of revlimid when needed. Typical NHS too expensive for the average extra time it can bring.

Good job things like penicillin and children's vaccinations got through wasn't it 🙂

[GillParticipant]

Hi Etta and Welcome

It is my husband Stephen that has mm (diagnosed 2008) You will get a great deal of support and information on here, there are even silly games and jokes cracked sometimes.

Don't trawl the internet too closely would be my advice. Most of the information is out of date and can be quite scary. There are trained professionals on this site who can answer your questions as well as general tips from all of us.

One of the good things about the people who post on here is that I have never come across any posts that suggest weird and wonderful "cures". Yes sometimes people give tips on something that they have found that helps with symptoms, but it is always something quite practical or, in the case of a food supplement easily obtainable and not suspect.

OOPS I just remembered I forgot to recommend snake oil:)

As Eve said you may have some anti sickness pills in your bag of "goodies" if not do contact you hospital and ask for help.

Good luck and best wishes from Gill x

[GillParticipant]

I do hopr you had a great day Jo I think I must have missed your original post.

46 years! Fantastic. I am sure your right. Keep squabbling. I know it keeps us on our toes 🙂

Love from Gill xx

[GillParticipant]

TENACIOUS

I am quite pleased with that for this time of night

OUS is next

[GillParticipant]

Hi Min

I thought I had replied to your post but the Ether Elves seemed to have grabbed my reply. I too have posted regarding another category being added to the site. What a good idea.

Much love from Gill xx

PS Sarah enjoy France especially driving your convertable and quaffing Champagne. Not at the same time obviously xx

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