[GillianParticipant]

Hi All,

I'm Gill 54, married with two daughters and have just recieved my devastating news. All such a shock and not really had time to take it all on board!!!

Found the site though and can see how useful this is going to be…….I can't stop reading!!!!

[CarolBradley1Participant]

Hi Gill

Truly sorry that you have had the rotten news – you must be shell shocked and everything a blur.
Please take heart – things are moving at an incredible rate in this field and in the almost six years since I was diagnoesd there have been huge steps forward and progress has been incredible.

There are some lovely supportive people on this site with good positive attitudes which is a big plus when your facing this situation.

Don´t hesitate to ask – someone usually has some really good practical advice you just have to pick which is most suitable for your own very individual situation.

Thinking of you

Carol xxx

[eveParticipant]

Hi Gill

Welcome to the site,Its either you so shocked or it is a relieve that at least you know have a name to your illness,sorry you have to join us.
Ask any questions you need answers for,or thing you do not understand,look on it as a big learning curve.
I wish you a good journey eve

[MinParticipant]

Hi Gill
Welcome to the merry band of MMrs. Sorry you find yourself here and can understand entirely how shell shocked you must be. B
You about to step onto a roller coaster and might feel like throwing yourself off from time to time but bare with us/ it. We may not have all the answers but someone on here will be at the same stage as you are or just ahead of you and with our shared knowledge and your curiosity you will know by now its not the end of the world, look at it as part of lifes rich tapestry.
Your on a steep learning curve, and in no time at all you will know all you need to get by on the mixture of whatever tablets or medication that you have or are about to be put on.
Most important of all is to stay positive and look forward, set yourself small easily achieved goals. Like not losing your temper at the length of time you sit around in hospital waiting rooms. LOL Take a note book and pen write down all the questions that will go out of your mind when your sitting in front of the consultant. Make little annotations that will jog your memory when you get home to be able to recall what was said.
Often a nurse specialist will accompany you in the consultation and she/he will be able to interpret for you as the terms used are alien to begin with. They will also be able to turn the the consultants words into laymens terms until your familiar with them.
Good luck on your journey and keep us informed when your able or come and have a moan if needs be. Scream if it helps we have all felt a little of what your feeling. Though not me as I am a carer for my husband diagnosed 2 yrs ago when he was 56yrs
Im sure your husband is just as fearful as you are and about to join you on the roller coaster. We are here for him too and family if they need support.
Regards Min

[GillParticipant]

Hi from one Gill to another. My husband has mm and I learnt very early to read posts and advice on here and not trawl the internet.

Gill xxx

[brochoParticipant]

Hi Gill you are on the right site for info and lots of support from people who understand what it feels like At the moment it probably feels overwhelming but as your treatment begins it will all start to make sense You will have a specialist nurse who will be available , usually more so than consultants although a lot of them are very good at keeping in touch Take things a step at a time try not to worry too far ahead Good luck and let us know how things are going best wishes Bridget

[kaychappersParticipant]

Hi Gill
Sorry you have to come here too. It is a bomb shell when diagnosed, but as everyone has said this site is wonderfully supportive, and there is always someone who has been through it, going through it or will be joining the journey with you. Ask questions as the hospital and take someone with you who can be your added ears. Let us know how you get on. One foot in front of the other.

Best wishes. Kay

[BADGERParticipant]

Hello gILL
What a shocked state you must be in it took me at least three months before I could come to terms with it I just didnt want to speak about it.
the phone line to myeloma uk is so valuable, there is a specialist nurse to talk to I found it such a help because you feel so alone when you go to the specialist take a pad with all the questions you want to ask, you never remember everything and write down the replys. Check with Myeloma uk
if there is a support group near you its so helpful to actually speak to someone who also has this horrid condition
Take care love Jo

[tomParticipant]

Hi Gill

Well what a great lot of replie's you have 😀 and am sure I cant add anymore to this great advise you already have.

BUT am a Mere Male and you know we have to have our penny's worth 😀

First am sorry you had to join this great site, but also to let you know its also the best, its a roller coaster but to make it short, I am now 56 was diagnosed in Jan 2009 went on CDT then had Stem Cell Harvest, then the Stem Cell Transplant in Dec 2009 now in remissin and back at work (light dutie's) and doing great.

Not all of us have the same treatment, as you will find out it will be tailored to you:-D

Good Luck and dont forget take one day at a time and dont push even a little bit hard, that bit of dusting will do till tomorrow 😀

Love
Tom "Onwards and Upwards" xxx
Ps not bad for a "mere male" thats got nowt to say Lol xx

[BADGERParticipant]

TOM
You will never be just a mere mail hows the young bride, still keeping you in check

Love Jo:-P

[tomParticipant]

Hi Jo

The young bride is doing great, and as for keeping me in check (just looked behind me to see she aint their;-) ) well she has a hard job doing that Lol.
Take a look at the photo and see how much I spoil the young bride (tom looks over his shoulder to make sure she cant see)

Hope your Doing Ok Jo xxxxx

[Gill20Participant]

Hi Gill

I can empathise with you, I am another Gill (59)recently diagnosed and haven't really got my head round everything yet. I am having my skeletal survey done tomorrow and then seeing the doctor to discuss treatment. Like you I feel this site will be very useful and the support from others in the same position seems to be great. Maybe we can support each other Which hospital are you under?

Gill

[mhnevillParticipant]

Hi Gill

Just to say we will all be rooting for you.

Keep strong.

Mavis

[GillianParticipant]

Hi Gill,

Nice to hear from you and I think supporting each other sound a good idea. My treatment is at Airedale nr Skipton North Yorkshire. I was admitted on a 999 call, after I collapsed with the pain ( I had been suffering with a bad back for several weeks) I have now been in hospital 5 weeks!!! I have had a lot of trouble with pain & sickness, which they are still trying to. stabalise. So I have had a lot of the tests done my skeletal survey being one of them. This was easy and did not cause any pain. As to the results, I am not sure – it showed the myeloma in my spine and other areas but it just won't sink in. I feel as if Im watching the story of someone else. My consultant is really nice and she visits me once or twice a day, to check the pain etc. I started chemotherapy last week which again has made me so sick, but again they are working to control this.

Next week I am having Radiotherapy so I will let you know how I get on.
How was your Myeloma diagnosed? And how long did it take?

Thank you for all the support I have received already from members.

Gill

[BADGERParticipant]

hi Tom

thanks I am still doing ok last paraprotien in a band to fient to measure so onwards and upwards I always have someone looking over my shoulder Geoff my husband he TRIES!!! to keep me in line
Lots of love Jo8-)

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