[TinaParticipant]

I know you will have a fantastic time Dai and you really deserve it. You have such a big heart and have been an inspiration to many. I'm keeping my fingers and toes crossed for good weather

My best wishes

Tina X

[TinaParticipant]

Hi, Gill & Susannah,

Great to hear you are both "coping" and moving on slowly. Most of Pat's ashes were interned at a beautiful forest burial ground but I have kept a small box at home – in fact in the kitchen – to keep me company. Gill, your French property sounds wonderful must be so difficult for you to be there without Stephen.

Best wishes to you both

Tina XX

ps Gill when you feel up to it why not join Susannah and Jackie Phippard for a Facebook chat on our group " a new life". It would be great to meet up one day.

Regards

Tina XX

[TinaParticipant]

Hi Garry,

Great to hear Sue is coming home for a week – that alone will perk her up.

In 2011 my late husband Patrick had Bendamustine treatment which was very successful for him for a year. He had already used up all other treatment options at that point so the Bendamustine was a shot in the dark. From what I can recall no nasty side effects were suffered. The nuisance was that the potion could only be made up when he physically arrived at clinic, this meant that on accasion there was a long wait – a pain as the infusion took only 5 minutes.
At the time of treatment Pat's PP's were on the rise, he already been neutrapaenic for a year and platelets were being given pretty regulary. So I would say even though the treatment was effective for a year I would call that a good result.

My very best wishes to you both

Tina XX

[TinaParticipant]

Hi Dawn,

My husband Patrick had two courses of Pomalidomide back in 2011 after having a very good year on Bendamustine. As far as I can remember he suffered very little side effects. Unfortunately he was too far down the Myeloma road for it too have a positive effect.

Good luck with the treatment and best wishes

Tina

[TinaParticipant]

Hi Dai,

Unfortunately low platelet and neuts are the biggest drawback of Bendamustine treatment. Hope you get your neuts up and you can continue with treatment soon.

Best Wishes
Tina X

[TinaParticipant]

Thankyou Ellen for breaking this expected but nonetheless very sad news.

Dear Sue,

Please accept my heartfelt condolences. I am so glad that you have your family and friends around you to offer love and support. Keith sounded like a wonderful man, he gave an awful lot of advice and comfort to many of us on the forum and we are so grateful for that.

Take care

Tina X

[TinaParticipant]

Thankyou Ellen for passing on such sad information. I remember Keith from the old site giving so much comfort and information to us all. Keith I am sure you knew your time was limited and hope you are comfortable and can leave this world in peace.
Sue I wish you both much strength and my very best wishes, my thoughts are with you.

God Bless

Tina X

[TinaParticipant]

Gill,

What a great find. Michael comes across as a very kind man.

Take care

Tina X

[TinaParticipant]

Hi Sue,

I had most of Patrick's ashes interned at a beautiful woodland burial park with his brother, I kept back a small amount which I keep at home with me. Maybe you could think about doing this too?

Best Wishes to you

Tina x

[TinaParticipant]

Thankyou Andy,

Having "been there" with Patrick on numerous occasions I know how easily these things can turn nasty, hopefully he will pull through and be up and chatting to us soon.
Dai, I was thinking the same too, I do hope he has someone to share with.

Best Wishes to you Keith

Tina

[TinaParticipant]

David,

Just wanted to wish you all the best with Velcade.Make sure you keep posing as it would be very dull without you!:-D

[TinaParticipant]

Hi Gill,

I am glad to hear you are moving forward with your new life it still is very early days so don't put any pressure on yourself to be or act in a certain way.
Well Gill, that's both of that's silly, I still talk to Patrick everyday even though it will be two years since he died on May 13th. I find a comfort in talking to him although like you I often cry whilst doing it.
Last week I had a major meltdown I cried so hard I had a headache all night. I just think it's normal and keep plodding on.

Lots of Love

Tina XX

[TinaParticipant]

Hi Mohammed,

Sorry your mother is suffering with painful neuropathy. As Tom says it is a well known side effect and one that is difficult to treat successfully. Reducing your mothers drug dose is definately the recommended option especially as she is on both Velcade and thalidomide which both cause PN.

Sorry I cannot give you any more help.

Good Luck
Tina

[TinaParticipant]

Dear Sue,

I gave up work three months before Patrick died to look after him at home. I am so glad we had that precious time, nothing was left un-said.
I have taken to reading a book when I go to bed until I am really tired to take my mind off flashbacks which I am still suffering.

Oh by the way I am scared of heights too! You are probably thinking of paragliding, windsurfing is like surfing but with a sail. Definately on the water not above it! mind you mostly in it!! Absailing- go for it I say:-)

I hope your GP will be of help tomorrow.

Love

Tina XX

[TinaParticipant]

Hi Sue,

Yes I am working full time. I spent approximately 7 months looking for a role nearer home after evaluating what was important to me moving forward in my new life. I used to work in the City & West End of London but just didn't want to do that anymore. I have to work as I still have a mortgage to pay but I have also been lucky enough to find a great company to work for and I am enjoying it.

You know there are a pair of Patrick's slippers in the lounge next to the sofa where he used to sit. They have been there ever since he was taken to hospital that fateful night and left the house forever, I just cannot bring myself to move them at the moment. Sounds crazy, doesn't it? Patrick would think so:-)

I do hope you are getting support from family and friends and are taking care of yourself. Are you sleeping ok?

Love
Tina X

[Author]

Posts