[TinaParticipant]

Hi Sue / Bridget,

Bridget, you are so naughty venturing out with a cold! I really hope you feel better soon.
Sue, Patrick's consultant took a risk with our consent and continued with Bendamustine depite his low platelet counts. Her view was that he could be given as may platelets as he needed and that it was the myeloma needing treating most. I am thankful to her for the resulting extra year with Pat. He did have transfusions regulary sometimes up to three times a week until the myeloma settled down.

Good luck to you both
Tina XX

[TinaParticipant]

Hi Roz,

Good to hear that a positive action came out of your visit. I do believe, from personal experience, writing things down definately helps it unscrambles your brain leaving you free to include positive thoughts which we need to get on with our lives.
I was struggling in particular with the events of the last three days of Patrick's life and it wasn't until I wrote down everything I could remember during that time that I came to terms with events and they stopped rolling around in my head and dominating my life.
Roz,you must look after yourself first, Rachael's time will come of that I am certain.

Love

Tina X

[TinaParticipant]

Hi Bridget,

I often wondered if we humans could fall asleep standing up – I may try to use this technique when I can't get a seat on the train!
As Patrick did not suffer with the tiredness in the way you do I can only guess it is because of the Thalidomide which he was not taking as part of his treatment with bendamustine.
I am interested to know as you cannot rely on blood tests and a major drawback of bendamustine is low neutrophils and platelets how do you manage this side of things? by physical effects only?

Sue, how is Michael managing on the treatment

Love to you both
Tina XX

[TinaParticipant]

Hello Roz,

You mentioned that your session was fine, but did it help you? and are you going to continue with more sessions?

Thinking of you

Tina X

[TinaParticipant]

Hi All,

Pat and I lived, and I still live in Buckinghamshire and love it to bits.
Roz, I can tell you that Vasbyte in South African means "bite down" not sure what Davids meaning is!!

Tina

[TinaParticipant]

Dear Roz

So sorry to hear you are having so much trouble getting the help you need. Simlar to Sarah, I was offered councelling by Iain Rennie who's nurses had been visitng everyday to provide medical treatment during the few weeks before Pat died. I turned it down.

Have you tried speaking to the Citizens Advice Bureau? I know it sounds like a long shot – but worth it I think, they may be able to help.

Best Wishes
Tina

[TinaParticipant]

Hi Bridget,

Sorry, I missed your posting.

Patrick never suffered with a rash during his Bendamustine year, but glad to hear yours is clearing up now.
He was having regular platelet transfusions as Sue says – a major side effect.

best wishes

Tina XX

[TinaParticipant]

I attended a memorial service yesterday for my sisiter in law's sister. Three weeks ago she went to her GP with a pain in her shoulder and neck and by day seven she had died of double pnemonia I spent lots of time with her poor husband who was still in complete shock sharing his pain and understanding his grief.
Even with MM there are those who are unable to plan and talk about the inevitable – Patrick was not, I am grateful to say, one of those people but he did go through and awful amount of pain both physical and emotional throughout the years with cancer and I am therefore not convinced a long uncurable illness is preferable. That said if Patrick had been given the choice he would have chosen MM.

Tina X

[TinaParticipant]

Hi Bridget,

Good to hear thay you are not suffering too many side effects from the Bendamustine. I do recall Patrick taking anti sickness pills an hour before the injection which seemed to work for him, the low neutrophil counts seems par for the course for this treatment so watch out for any signs of infection.
Best of Luck
Tina X

[TinaParticipant]

Well done Debs,

You must be kn***ered! definately time to put your feet up. Sorry I couldn't make it, but in a way glad I couldn't as the clutch went on my car!
You do such a great job raising money for MM – fantastic

I was invited to a birthday party held on sat night in Wycombe by the staff nurse who looked after Pat at both Wycombe and Stoke Mandeville. It was so nice to finally thank her without getting overly emotional. There were half a dozen nurses from the Haem ward who also got to know Pat well over the years and it was strangely nice to see them.

Take care
Tina

[TinaParticipant]

Dear Sarah,

I would agree with you about grief getting worse. With me I think it is the realisation that Patrick is gone forever, he is not coming back. In the beginning it was so very hard to believe and that I was living a nightmare but hoping I would wake up and he would be there to comfort me.
I think you are right though – another death in the family does not make things easier for you. I too have just lost my sister in laws sister who died after just seven days of being diagnosed with pneumonia at 51yrs old.
After 5 months I have made a small step accepting but like you have flashbacks and I do cry everyday especially during the hour long car journey to work. I just keep remembering how Pat would have hated me to be unhappy and I do not want to let him down.
I adored my husband and never believed all those who say time heals but with the one small step I have made I have hope that maybe one day I will
be coping better than I do now.
It is not too late to have councilling- maybe it will help.
So sorry to hear about your young ram

Tina X

[TinaParticipant]

Hi Sue,

Good to hear from you again and so sorry to hear you have the added strain from work. I expect they won't consider voluntary redundancy?
Although Patrick did not suffer with the side effects experienced by Michael on Bendamustine he did have similar effects after the huge amount of antibiotics taken with so many infections – it really is so very upsetting and I know you must feel helpless at times. If his PP levels are not moving you can say this is positve news? I hope Micheael gets to stay on the trial. I will be thinking of you both.
Thankyou for your kind words- always guaranteed to make me cry!

Take care
Tina XX

[TinaParticipant]

Roz,

You didn't get it wrong at all.
It is still early days yet and as you say you can't turn your feelings of just like that – wish there was a switch to flick to dampen our sorrow. You have always sounded like a strong person to me and I am sure you will regain that strength as time goes on.
Hang on in there

Tina X

[TinaParticipant]

Hi Roz / Min

Pat died unexpectedly too. I called an ambulance for him one night as he developed a chest pain and he ended up in A & E for 11 hrs as there was not a bed available for him on the haem ward. His chest pain went away but he had taken morphine for the pain which he had not had for a while due to kidney failure earlier on. The morphine resulted in hallucinations and agitation which got worse over 24 hrs and eventually he slipped into a coma. I was robbed of the chance of saying goodbye but I sat by his side holding his hand until he eventually left me.

I had given up work in March as he deteriorated and I needed to care for him at home. It was at this time and May that we talked and shared our most inner thoughts. I remember us both sitting looking out of the window one cold morning watching the sun come up and he said then that "it won't be long now" and he was right two days later he died.

Love and strength,
Tina XX

[TinaParticipant]

Hi Min,

I didn't find returning home anymore difficult than any other time I walk through the front door and Patrick is not there to talk to.

Just days before he died, Pat told me that he would never leave me, he said he would always be there whispering in my ear and watching over me. I take great comfort in this and speak to him all the time. He hated to see me upset and when I find myself crying, which is often, I look at his picture and hear him say "pull yourself together" which I do.
We talked openly about how I would cope when he was gone and through these discussions he gave me the strength which I now draw on every day.
I have only now, five months after his death, managed to stop continually replaying in my mind the last two days of his life and I feel a duty to Pat to continue with my life in a positive way and make him proud as painful as it is at the moment.

I am happy to hear you have found a way to help you through some of the pain. Enjoy your holiday.

Tina X

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