I too do not look at the site very much these days. My darling husband died in May 2011 and I remenber every last detail of his last few days alive just as if it was last week. Pat is definately looking over my shoulder I can hear him telling me off only too often?
I always wondered what you were giggling about in your photograph, now I…[Read more]

My late husband Pat did very well on Bendamustine in 2010 for over a year with very little side effects. Unfortunately he was a long way down the treatment road before he started it, who knows, it could have worked for longer if he had started earlier.

Good Luck

Tina

I too don’t visit the site too often now since my dear husband passed away in May 2011.

So sorry to hear your news. I hope you get the support you need from family and friends.

Take Care

Tina XX

Tina xx

Tina XX

If you are referring to the area of Buckinghamshire I can certainly recommend it. My husband had very good treatment in both High Wycombe and Stoke Mandeville Hospitals. There never appeared to be an issue with trying new treatments or spending money on treatment.

Hoipe this helps

Best Wishes

Tina

Unfortunately low platelet and neuts are the biggest drawback of Bendamustine treatment. Hope you get your neuts up and you can continue with treatment soon.

Best Wishes
Tina X

Just type "in a new life" in the search optionof…[Read more]

Dear Sue,

Please accept my heartfelt condolences. I am so glad that you have your family and friends around you to offer love and support. Keith sounded like a wonderful man, he gave an awful lot of advice and comfort to many of us on the forum and we are so grateful…[Read more]

God Bless

Tina X

What a great find. Michael comes across as a very kind man.

Take care

Tina X

I had most of Patrick's ashes interned at a beautiful woodland burial park with his brother, I kept back a small amount which I keep at home with me. Maybe you could think about doing this too?

Best Wishes to you

Tina x

Having "been there" with Patrick on numerous occasions I know how easily these things can turn nasty, hopefully he will pull through and be up and chatting to us soon.
Dai, I was thinking the same too, I do hope he has someone to share with.

Best Wishes to you Keith

Tina

Just wanted to wish you all the best with Velcade.Make sure you keep posing as it would be very dull without you!:-D

I am glad to hear you are moving forward with your new life it still is very early days so don't put any pressure on yourself to be or act in a certain way.
Well Gill, that's both of that's silly, I still talk to Patrick everyday even though it will be two years since he died on May 13th. I find a comfort in talking to him although…[Read more]

Sorry your mother is suffering with painful neuropathy. As Tom says it is a well known side effect and one that is difficult to treat successfully. Reducing your mothers drug dose is definately the recommended option especially as she is on both Velcade and thalidomide which both cause PN.

Sorry I cannot give you any more…[Read more]

I gave up work three months before Patrick died to look after him at home. I am so glad we had that precious time, nothing was left un-said.
I have taken to reading a book when I go to bed until I am really tired to take my mind off flashbacks which I am still suffering.

Oh by the way I am scared of heights too! You are probably…[Read more]

Yes I am working full time. I spent approximately 7 months looking for a role nearer home after evaluating what was important to me moving forward in my new life. I used to work in the City & West End of London but just didn't want to do that anymore. I have to work as I still have a mortgage to pay but I have also been lucky enough to…[Read more]

Keeping busy has definately worked for me I would have gone to the dogs [i](only way I [/i][i]could get the word dogs into this post)[/i] if I hadn't started my photography and windsurfing. At times I do feel terribly alone and quite often…[Read more]

I am sure Michael was a much loved man and friends and colleagues supported you saying your last goodbyes.

You are now at the begining of a whole new life. But for now just take each day as it comes, no doubt it will be tremendously hard at times but you just like others left behind on this site, have the opportunity to live – and…[Read more]

If you need help with anything at all please let me know.

Thinking of you

Tina XX

So very very sorry to hear your news, God bless you both. If you ever want to to talk please contact me at any time. I wish I was there to give you big hugs and the assurance that you will be ok. You are so strong and like me our husbands were everything to us and your feelings of loss will take you through a myriad of emotions – it is…[Read more]

I am so very sorry that you are going through this pain. Somehow you need to think of the tiniest positive thought to get you through. Michael is no longer suffering pain and believe that he is no longer feeling fear or worry. He is being looked after and at the very least his final days will be calm and with you at home.

I wish…[Read more]

I think you are right to be concerned about your cocktail of meds especially if they are coming from different sources. Your consultant however should be aware of all the drugs you are being given and should be available to explain everything you need to know, unfortunately it seems you don't get told unless you ask. I would be…[Read more]

I am so glad you now have support from the district and Macmillan nurses. Although I feel you should demand an explanation for Michael's treatment (which you are surely owed) I feel you are doing the right thing focusing your attentions on Michael. You will benefit from this in more ways than you know.

Love Tina X

As Gill says it's great that you are getting some help the Mac nurses are just the best.
I am sure you will find you are not as stressed now that you do not have to worry about work. I gave up work to look after Patrick when given his prognosis and I am so grateful for those three months with him.
Sue it makes me so angry that…[Read more]

I have been thinking of you on the Bendamustine treatment and have my fingers crossed for you and all others on this journey.
It's strange to think that when Patrick was having Bendamustine treatment 2 years ago it was not very well thought of. In fact I remember suggesting it to one of our gang and she said that her Doctor had told her…[Read more]

Mainly because of Patrick's ulcer caused by what turned out to be a terminal bacterial infection District Nurses visited every other day. I will say this reduced the strain and worry I was goibg through – they were just so helpful and understanding. They supplied me up with end of life drugs which were to be used, by them, when Patrick was…[Read more]

As Tom says you must call 999. I usually called the consultant on the Haem Ward at Stoke Mandeville where Patrick stayed plenty of times and they always told me to bring him in straight away. But the night he developed chest pains, the day before he died, I called 999 They wanted to take him to the local A & E but I was having none…[Read more]

I can only describe this period you are going through as the very worst feeling in the world, I so want to give you a big hug and make it all go away.
At the very least Michael's pain is controlled a little better now, I hope he is not too distressed and you are able to talk to him about your fears as well as he is about his own, this…[Read more]

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…[Read more]

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…[Read more]

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

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 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

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]

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]

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]

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]

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

Regards

Tina

Tina