[TinaParticipant]

Hi Sue,

So good to hear from you I have been wondering how Michael was doing, I'm so sorry he has been unwell and in hospital – so very draining for you both.
You have no doubt been by Michael's side throughout all his treatments and procedures which from my own experience comforted me as I always wanted to be around if something were to go wrong. But, of course you will now be sitting around worrying which is perfectly natural – Michael clearly worries about you so the best you can do is collect him with a hug and a smile.
Is there any sign of treatment at all?
Love
TinaXX

[TinaParticipant]

Dear Gill,

So sorry to hear the Revlimid failed. Has Stephen been treated with bendamustine or Pomalidomide? Patrick survived almost another two years after the failure of Revlimid on these drugs and the consultant was amazed.

Like Mari, I feel you should do what makes you both happy if that means travelling to France then get going and enjoy your time together.
Love, hugs and best wishes
Tina XX

[TinaParticipant]

Hi Dai,

Amatriptyline is a widely used drug and has many uses. I suffered very badly with muscle and nerve pain and was given amatriptyline many years ago as a muscle relaxant. Patrick used it in a low dose when he had trouble sleeping and it really helped.
Patrick was also on 185 mg of SR morphine a day backed up with Oramorph, I never noticed any zombie-like effects in fact I didn't notice any detrimental effects at all. He had to stop when his kidneys failed but very starngely after that did not feel any need for it?
Love to all

Tina X

[TinaParticipant]

Dear Michelle,

Strength and love to you Michelle, God Bless you Phil

God saw you getting tired,
When a cure was not to be
So he wrapped his arms around you
And whispered ?come to me?

You didn?t deserve what you went through,
So he gave you a long-earnt rest
God?s garden must be beautiful
He only takes the best

When I saw you sleeping that day,
So peaceful & free from pain
I could not wish you back to me
To suffer that again

Tina X

[TinaParticipant]

Hi Sue,

I find it hard to believe that it's the drug company who is witholding the Pomalidomide. If it's a matter of cost that will be down to the Health Trust covering your area – and not fitting the criteria? what is that all about? – have they explained this to you?
Patrick recieved Pomalidomide on compassionate grounds, as you would expect, as there was nothing else to treat him with at the time and yes it could have made him worse but that was his call to make.
If you have the energy and Sue, I know you do, try getting in touch with your local MP, make a noise.
Best Wishes to you both

Tina XX

[TinaParticipant]

Dear Jo,

So very sorry to hear of the loss of your father I am sure he put up a brave fight against this B * disease. I lost my husband last May, we were together 34 years and I know how hard it will be for your mother. It will take some time to just remember the good times- but you will, believe me. As Bridget says stay strong and you will get through it.
Best Wishes
Tina

[TinaParticipant]

Hi Sue,

My email was down for a bit but is up and running now. Hope to speak soon.

Tina x

[TinaParticipant]

Hi Penny,

My husband had a SCT in Dec 2007 and much like Elizabeth sailed through and did not suffer with either sore throat and diarrohea. His main suffering was due to boredom!! Patrick was up and running in about four weeks.
Best wishes to you

Tina

[TinaParticipant]

Hi Sue,

Great to hear you don't have to go through with Chemo – brilliant news. If you ever want to private email me don't hesitate – pa.davis@virgin.net

Keep on harrassing the medics for treatment for Michael I am sure something will come along soon. I know how draining it ca be but in the meantime stay strong and look after yourself.

Love Tina X

[TinaParticipant]

Oh Sue I was really worried about you both, thankyou for taking the trouble to let us know how you both are doing. What an awful few months you have been having although not just the last few months I know. Have you asked about Pomalidomide for Michael or is he too unwell at the moment for any treatment?
What about you? do you have a treatment plan yet? I do hope you have family and friends around you to give any support you may need. I know you are strong enough to keep the flag flying so dig in deep and don't lose your get up and go.

My very best wishes to you both.

Tina XX

[TinaParticipant]

Hi Tom,

I love your song choice – have you heard the Platters version?

Tina

[TinaParticipant]

Dear Chrissie,

The feeling of anger is normal and I am certain that it will pass, having experienced the same emotion for many months after my husband died. Pneumonia is a very common cause of death in MM patients, it develops very quickly so David may well have had the beginnings of it on the Wednesday but so insignificant that the x ray didn't pick it up.
My husband slipped into a coma before I could say my final goodbye and for many months I was convinced that the coma was drug induced. I was able to talk with the consultant about it and although I wasn't completely convinced I was hearing the truth I felt less angry for talking to her. Have you thought of councelling?It may help.

As Roisin says try to take one day at a time. I try hard to focus on the good times, I know it is very difficult when we have so many memories of our loved ones in mysery and pain.But all we can do is keep trying. After eight months I still bawl my eyes out Patrick is the first I think about when I wake up and the very last before I go to sleep and he is always in my thoughts. The positive side is I am coping better now, as will you.

My very best wishes to you

Tina X

[TinaParticipant]

Dear Dai,

You sound so much like my darling Patrick and I have felt that your relationship with Janet in many ways is much like ours had been. If you have said to Janet all the things you have written I believe she will find comfort in your words when you have gone.
I am so thankful that Patrick and I were able to speak openly about our feelings and worries – he about his pending death – and me about how I would cope with my life without him. I strongly believe that being open in this way has helped me through some very difficult times. Patrick's words and jokes have been my "small white pills" jolting me out of misery and giving me the strength to get on with my life.

Yes it is natural to worry about Janet but I genuinly feel you can help by giving her some ammunition to fight the hard times – no regrets.

Love to you both

Tina XX

[TinaParticipant]

Dear Chrissie,

I am so very sorry for your loss and truly I am feeling your pain right now. Davis sounded a very brave man and to be together so long you must have loved each other very much.
My darling husband Patrick lost his battle against MM eight months ago and it feels just like yesterday.
I wish I could give you the answers you seek.How can you move on? I believe each of us who have lost our loved ones will have a different answer to that question. Patrick loved life and never gave up on anything he did and I feel it my duty to not waste my life and move on as best I can. I feel him around me all the time, I talk to him, ask him questions when I am not sure about things, I feel him watching me which has urged me to do the very best I can – he said he wouldn't leave me and he hasn't.
You will most probably remember his last moments over and over and relive the times he was in pain and you couldn't help him and it is [b]unbearable[/b] You will cry and then cry some more. Whenever I am crying I look at Patrick's picture and see him shaking his head telling me to stop. I am sure David would not want to see you suffering so much.
Maybe talking to a bereavement councillor will help? Give it some thought.

Love and best wishes to you

Tina X

[TinaParticipant]

Dear Sue,

So sorry I missed this post and to hear your bad news, I have just replied to both you and Bridget on another.

Isn't Pomalidomide an option for Michael? I have also read that low-dose melphalan has been successful. I would definately ask for a second opinion.

Do not lose hope just yet I am certain there is treatment out there.

Thinking of you both
Tina XX

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