[TinaParticipant]

Dear Susan,

So lovely to hear from you. How am I getting on? apparently much the same as you. Patrick's passing seems just like yesterday, I relive all of our conversations and his anguish and confusion during his last week with me almost every day.
When people ask me how I am I really do not know how to answer. Like you I try to keep busy which allows me to shut out the pain. With all he was going through Patrick was worried for me more than himself so I owe it to him to be strong and get on with my life.
I hope that you may find the strength to keep going and be as positive as posible.

Best wishes

Tina X

[TinaParticipant]

Dear Sue,

I know exactly how you must be feeling and I truy wish I could say or do something to make the pain go away. Michael is the love of your life and the very thought of not being able to enjoy the future together is absolutely devastating. You must roll with all your thoughts and feelings don'tever feel guilty for even the strongest will find this time too much to bear.
You have been very strong throughout Michael's illness and I know that alone can sap your strength from time to time but you will find the strength to carry on, I know you will.
Michael should definately not be in pain – this is completely manageable, maybe your macmillan nurse can help?

All my very best wishes to you and Michael – if you need to talk antytime please contact me pa.davis@virgin.net

Tina XX

[TinaParticipant]

Dai,

Good luck with the Bendamustine.

I mentioned to Keith about getting a PICC line fitted to avoid having to have cannulas,Patrick had one in his upper arm no problem.

Regards

Tina

[TinaParticipant]

Hi Keith

I meant to ask – do you have a PICC line in place or are you still being stabbed evry time you have bloods / platelets etc?

A PICC line avoids all that pain and bruising and is just a simple procedure.

Tina X

[TinaParticipant]

I'm keeping everything crossed for you Keith
Love Tina X

[TinaParticipant]

Jet,

I had been following Lonnie Nesseler for a number of years and your news that he died earlier this year is such a shock. He was a true pioneer.

God bless you Lonnie.

Tina

[TinaParticipant]

Dai,

Yes, almost a year on Bendamustine and hardly any side effects. He did actually have one course of Pomalidomide, which I hasten to say was readily available to him at that time. Unfortunately the infection became more of a threat that MM so there was no point in continuing with it.
Patrick was neutropenic for almost 18 months.He was left with scarred lungs after a number of infections which turned into blood clots forcing numerous transfusions per week.
Patrick never gave up hoping even two weeks before his death he was refusing to accept the inevitable.
The Americans certainly are ahead of us Brits in MM treatment and you are right there are several treatments in the pipeline – bring it on!

Tina X

[TinaParticipant]

Keith,
I do not remember Patrick taking anything at all along with the Bendamustine treatment.He did have to have regular platelet infusions and never recovered from neutrapenia which began with the short-lived Revlimid treatment.
I agree with you about the bubble. I regret that Patrick continued to take super amounts of antibiotics when he contracted what was to be his final infection. He would have enjoyed the last weeks of his life so much more albeit a little shorter.
Tina

[TinaParticipant]

Hi Keith,

Back in 2010 Patrick had Bendamustine treatment for almost a year with very little side effects. He was, in fact quite "well" during this time. Similar to Sue's comment Patrick did have issues with platelets being very low however this was an ongoing issue before he began the treatment. Bendamustine is unlicensed but not apparently expensive, Patrick was allowed this treatment as there was nothing left to try at that time. He did eventually have Pomalidomide but contracted an infection that eventually brought him down. Keith I do not remeber Rev or any other meds being taken at the same time as Bendamustine. The only hassle is that the infusion has a short shelf life so that it cannot be made up until you arrive for treatment – can be hanging arouns but no change there:)
The very best of luck to you

TinaX

[TinaParticipant]

Hi Sue,

I am still very up and down, trying to keep as busy as possible thankyou for asking.

I would most definately ask the question regarding Michael's prognosis. PP levels are only just one indicator of this complicated disease. As the it progresses some signs can go un noticed by us carers. For example Patrick developed clots on the lungs and kidney failure which all came to a head very very quickly quickly. Your consultant will have seen some of these other signs worsen and chose not to, for whatever reason, share the details. If you need to know, which I suspect you do as I would, please do not hesitate to get on the phone and ask.
Tina XX

[TinaParticipant]

Dear Gill,

The way I coped and still cope 18months after Patrick died is to keep busy. I have taken up windsurfing, taken a Diploma with the Photographic Institute and basically fill as much of each day as I can. I find strangers and new friends can talk to me about my loss easier than family and old friends. I came home from a week's holiday yesterday and really thought Patrick was going to be home when I turned the key in the door. Lot's of tears last night it is still really hard to think only of the good times. Gill after only two months I would not expect you to feel any different than you do now as Sarah says the ache does improve but not a lot else.
Like you Patrick and I were two peas in a pod – we did everything together and now everything that we built together is a constant reminder that he is no longer with me.
A big hug from me
Tina

[TinaParticipant]

Hi Keith,

No problem at all. Anytime I have some useful to say I will be here to support you all.

Regards

Tina

[TinaParticipant]

Hope you get some action and quick. When Patrick was alive and having treatment I always went with him to see the consultant questioning everything they did and didn't do. I believe I achieved a better standard of treatment behaving this way.
Regards

Tina

[TinaParticipant]

Hi Keith,

Patrick suffered badly with bleeding gums and ulcers in his mouth. Platelet transfusions stopped the problem almost immediately.Yell at the haem team if you have to, you should not have to suffer what is so easily fixed.
Tina

[TinaParticipant]

Hi Sue,
I have only just come onto the forum after a break and read your sad news. You were always so supportive of me when Patrick was fighting his battle and I wish I could find words to help you through this dreadfully terrible time.
As many have said, talk, talk, talk I am so very glad that Patrick and I had that opportunity even though at the very end I was robbed of a chance to say goodbye. Spend as much time together as you can, I am sure Michael is comforted when you are close by. I stayed at the hospital with Patrick everytime he went in as he feared dying alone and in any case I could not bear to be apart from him for a moment.
Sue if there is anything I can do for you please let me know. Your daughter looks lovely and I am sure she is a great support to you. All my very best wishes to you and to your loving husband Michael.
Tina XX

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