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

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

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hi Keith,

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

Regards

Tina

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

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

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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