[LornaParticipant]

Hi all.

The one scenario no one has mentioned is self employment. Mike was self employed when diagnosed, working as a relief salesman to cover holidays and sick leave. There was no way he could continue once his Velcade treatment started as obviously who would give him a contract when he was at the hospital 2 mornings a week for bloods followed by 2 afternoons for the Velcade plus consultant's appointments. For him there was no sick pay, no early retirement, just the hard pressed welfare system.

Lorna

[LornaParticipant]

Hi Garry

Thanks for the update. There will definitely be someone along to help with info on both treatments, although I'm no help at all.

Tom gets everywhere it seems >:-)

Lorna

[LornaParticipant]

Hi Maureen and of course the rest of the gang.

Having read so many stories of late diagnosis Mike offered to help out at our GP's surgery talking to the medical students who train there raising awareness at a grassroots level. If we want things to change we have to be proactive.

Lorna x

[LornaParticipant]

Hi Jet

I thought I'd add another one to the list while at the same time bumping this thread up for those new to the site.

http://mymyelomajourney.wordpress.com/ Written by "debontheweb" Another Deborah who was initially a smoulderer before starting treatment January this year.

Lorna A.

[LornaParticipant]

Dear Jacqui

I very rarely post on the site, but I am so sorry to hear that you have lost your beloved Glenn. I can only imagine how devastated you must be.

Lorna

[LornaParticipant]

Hi Jet

I know Emma has already mentioned her blog in another post but I thought it was worthwhile adding it to your list.

http://ejbones.wordpress.com/ (A 28 year old woman from London diagnosed Aug 2012)

Lorna

[LornaParticipant]

Hi Ali

It is very easy to join the register to be a stem cell donor. 18-30 contact Anthony Nolan Trust.30-50 become a blood donor and ask to be put on the British Bone Marrow Register. As you'll have read on this forum it's completely painless. I joined the register just after Mike's SCT and I would encourage other carers and family to do the same when possible

Lorna x

[LornaParticipant]

Hi Amanda

We live in Wolverhampton! 🙂

Mike (he with the myeloma) was diagnosed in 2010 a few days after his 55th birthday.

I know exactly how you feel about the lack of support groups and I'm more than happy to meet up for a coffee.

My email is: luvlylorna63@hotmail.com or you can find me on Facebook if you search for "Trelawna Austins" (I didn't change my surname when I married Mike last year and my first name is a pain lol.)

We also have a blog http://www.lornaandmickyour-loma.blogspot.com

Lorna x

[LornaParticipant]

Hi Sarah Jane

Have you thought of emailing Scotty and requesting an invite to the under 50s site yet? They might be really useful to you as you have said elsewhere that your SMM has progressed and you are now on the Myeloma XI trial.

Lorna x

[LornaParticipant]

Again, thank you for all your kind replies. I will bear in mind the advice you have all given.

Lorna x

[LornaParticipant]

Hi Nettie

I'll throw my penny worth in too and say Mike is nearly 2 years post SCT and his consultant still forbids him to visit a swimming pool! Oh well. 🙂

Lorna x

[LornaParticipant]

Hi Joanne

From what I understand the myeloma is in the bone marrow that produces all the blood cells and so it can stop not only red cells but also platelets being produced.

Mike my husband had platelets around 70-80 for over a year after his SCT and they weren't too worried.

Lorna x

[LornaParticipant]

Hi Sandra

Thanks for getting back to me. I remember how tough a SCT can be for both parties so you have my sympathy.

Lorna x

[LornaParticipant]

Hi Kevin

Well done! It's no easy task getting through all those dex days and the days of withdrawal that follow.

Jean, Mike (my husband)had a pp reading of 11 after 8 cycles of Velcade, Dex and Cyclophosphamide and they still went ahead with the collection and SCT. He had his SCT on Christmas Day 2010 and is still doing well.

Lorna

[LornaParticipant]

Hi Gill

I just wanted to add my voice to those before me who have said don't leave us for long.

I too have fond memories of you both and remember how much you helped me when Mike was first diagnosed.

I think us carers will always need you, Sarah, Min, Tina and others who have already had to travel the darkest path.

Love Lorna x

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