[TinaParticipant]

Dear Gill,

So glad you got through the funeral with a few laughs in rememberance of Stephen who I am sure would have appreciated your style! he sounded like a wonderful man. As you join those of us that have lost our loved ones I hope that you continue to let us know how you are doing from time to time.

Love from Tina XX

[TinaParticipant]

Well there will be no mistaking you! So good that you have had the conversation with your wife – I think she may be right about the short shorts though:0)
I sent a smiley photograph and a short story about my husband with him to the undertakers so that they could meet the man he used to be. They contacted me expressing what a good idea they thought it was.

Tina

[TinaParticipant]

Hi Toma,

Have you decided what you are going to wear? You got me thinking about this same conversation I had with Patrick before he died. He said "just wrap me in an old sheet" I replied " when you arrive at the pearly gates wearing what looks like a toga you might be a tad under-dressed!" we thought this was very funny.
I love your labels idea.

Tina

[TinaParticipant]

Hello Gill,

I confused humanist with celebrant too! But actually now I really think about it the chap that read out my eulogy was an ex priest who left the fold many many years before and ran the Woodland Burial Park. He was super cool, extremely understanding and carried out all my wishes for the ceremony without any raised eyebrows. The service was a real celebration of Patrick's life the ups and downs included.
I am sure your chosen celebrant will be much more receptive to your needs.

Best wishes

Tina X

[TinaParticipant]

Dear Gill,

I am so glad that you will have some family with you for support at this difficult time. I had a humanist funeral for Patrick too at a Woodland Burial Park and was proud to write the eulogy myself including many funny stories which bought laughter and rememberance of a much loved man. I love your choice of music, I'm sure that would bring a smile to Stephens face.
Such a terribly sad time for you Gill, nothing I can say will relive the pain.
Lots of love to you and farewell dear Stephen you were loved and you will be missed.

Tina XX

[TinaParticipant]

Dear Gill,

You have been in my thought over the past few days and after your last post I knew the time was very close for Stephen. Try to take heart that he is no longer in pain and suffering the anguish this disease brings. You clearly shared a wonderful relationship and Stephen loved you very much he may have left you in body but you will continue to hear his voice and laughter for many years to come.

So sorry for your loss
Hugs and best wishes

Tina X

[TinaParticipant]

Dear Gill,

I am so very very sorry to hear of your news, I do relate to the situation as this is what happened to Patrick. I believe amongst the gibberish and confusion Stephen will have moments of lucidity therefore please keep talking to him I am sure he will take in some of what you are saying. He will be made comfortable and will no doubt be sedated so will not be in pain. Gill if you need to understand end of life procedures please let me know and I can talk you through it slowly.
I know you will find a way to get through this as I did. Patrick too was my whole life.

Love Tina XX

[TinaParticipant]

Hi Gill,

My late husband suffered badly with hypercalcaemia and recieved Zometa on a regular basis. From what I understand it is not used unless a necessity because of the cost which is high. Pamidronate and other biophoshpates are usually tried first.

Best Wishes

Tina

[TinaParticipant]

Hi Teresa,

I did not reply to your first post as I truly did not have the words to describe what I wanted to sayhowever I have been thinking of you as I often do about those on this forum who have lost loved ones. Whilst Peter wonders through your mind Patrick whispers in my ear from time to time especially when I am doing something the wrong way again – I hear his dulcit tones and it brings a smile to my face.
Five weeks is such a short space of time and as long as you take your time and accept that there is no right or wrong way with dealing with grief you will get through this awful awful time.
Wishing you much strength and love

Tina X

[TinaParticipant]

Dear Gill,

I have not posted before as I did not know what to say. I am hoping that the Wizard has managed to control Stephen's pain and he is comfortable at least. It is good that you were are able to give up work and spend time looking after him, preserving his dignity and generally being together which I am positive he appreciates more than you know.
I have been thinking about you both and send love and big hugs.

Love
Tina X

[TinaParticipant]

Hi Scott,

Similar to you my late husband Patrick had a very bad time with Velcade. He used Bendamustine 2 years ago for a year before it ceased to make a difference and suffered no side effects at all. You are right in saying that it is not a new drug and therefore has been well-tested.

Best of luck to you
Tina

[TinaParticipant]

Hi Jaqui,

My husband Patrick had IgA lambda light chain myeloma and we [i]were[/i] told it was an aggressive form of Myeloma. Patrick was in remission for only 10 months after SCT and unfortunately did not respond to Velcade very well at all. But after Revlimid failed he did have a very good year on Bendamustine which from what I hear on this forum has been dismissed by many consultants.
In my humble opinion I think you should go for it.

My very best wishes

Tina

[TinaParticipant]

Dear Gill,

I am so very sorry to hear of your news, I know what a very difficult time this must be for you both. Following your posts for so long now I know that you will be strong and will cope with everything to come. Stephen's journey may be nearing the end but it's not here yet – so enjoy each others company each day even Stephen's short temper!

My very best wishes to you both

Tina XX

[TinaParticipant]

Hi All

I may have posted this before but – I have been following the fantastic trials and tribulations of Lonnie Nesseler for many years. He is an American suffering from Myeloma and has come back from the brink on more than one occasion. He has survived an allogenic transplant from an unrelated donor and is currently doing well. A great blog to learn what the Americans have to offer

http://nesseler-medical.blogspot.co.uk/2012_01_01_archive.html

Best wishes to you all

Love
Tina

[TinaParticipant]

Dear Carol,

I too lost my dear husband of 34 yrs to Myeloma, 12 months ago. "Will this pain ever go?" I personally agree with David, the pain for somemone you have loved and lost never goes away. Whilst I am now able to talk about Patrick without immediately breaking out in tears the pain I feel seems to have found a place in me to hide occasionally but rears it's ugly head still to bring me crashing down. Everyone says "try and think of the good times" I am only now able to do that albeit only very occasionally.

But Carol, you will be able to enjoy life again, just a different one in a different way. I have taken up windsurfing and found a whole bunch of new friends, I have also just earned a Diploma in Photography. Keep busy and yes, take each day as it comes – you will make it.
Love and very big hugs

Tina X

[Author]

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