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…[Read more]

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…[Read more]

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…[Read more]

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.…[Read more]

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…[Read more]

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…[Read more]

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

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

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…[Read more]

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

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

Hi All,

Just back from my two week hols in the Red Sea. Intended to scuba dive but learnt to windsurf instead, something I will be taking up in the UK from next March. I did get weepy as this was the first holiday I have had without Patrick and missed him so much. He would have been amused though as I can often get gung ho about sports and this…[Read more]