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Abraxane -our experiences so far


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Dear Nikki,


I just wanted to say that I am thinking of you, Paul and the girls! I hope they will find the cause of the pain soon and it can be sorted out.


Lots of love,

Susanna xxx

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hi nikki, hope they've got on top of Pauls pain, (pethadine helped jem, had to get it from maternity , he was also on iv, morphine, buscapan, paracetamol,and a sedative)sorry for shocking spelling,

massive hug nikki

love Jayne

xxx

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Thank you All, your messages mean a lot. Paul is quite comfortable during the day, but becomes very agitated at night. They are increasing his sedation, but of course that is also hard as he is sleepy all the time, and I already miss him so much.


The Drs today said they have never known a patient with Paul's level of disease do anyway near as well as he has, which is interesting, as I see Jeni has commented on how exceptionally well Jim did as well. We are all such fighters here, and know that every extra day you can have, in spite of this cruel disease, is a precious one.


Nikki

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Nikki, what a star Paul is, a real fighter, my heart goes out to you, having to cope with all this, sending love and hugs to you all. I hope your beautiful girls, and you yourself, are coping as best you can because Paul is so strong, you have no choice but to be too. take care of yourself love sandrax xx

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Hi Nikki,


I feel for you so much. Your posts to others are so beautifully written and caring. In your own posts, they are so sad, and I can truly feel your pain in your words.


Ditto 100% at what Sandra says, I couldn't say it better than her but agree with her fully.


Thinking of you.


Leila xx

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PCUK Nurse Jeni

Nikki,


You have been such a support to others on here. I am thinking of you now as this gets harder, and harder for you. Its very hard when your loved one starts sleeping a lot - I know others have commented on this and find it upsetting.


Its been such a journey for you, and Paul especially. I would imagine that he has baffled everyone medically - we still battle with the "negativity" afforded to pancreatic cancer, but it goes to prove that medics are not always right, and that statistics can be tested.


Hope Paul feels less agitated soon Nikki.

Take care,


Jeni.

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We had a much better night last night, Paul didn't stir until 4 am, and then the nurses came in and gave him some Diamorphine and we both went back to sleep.

The hospice staff are very supportive of whatever I want to do. We can stay here, or they will arrange equipment for him to go home, they have even said if at the last minute I want to take him home to die, they will arrange an ambulance crew to get us home and put him in his own bed within the hour, amazing. My one wish is that everyone could have the care we have had, and been able to make choices right to the end.

For now, I think we are better staying in the hospice, but I know I can change my mind at any time. The Dr's have said that they think it will only be a matter of a couple of days, but they know what a fighter he is, so it may be longer. Most of the time it just seems so unreal. The girls are being incredible, the eldest is taking her mock AS levels, and is still going in for those. My youngest said to me the other day that she had thought her Dad was invincible, and I think he thought that too, but that belief has kept us all going over the last 2 years.


Take care all,

Nikki

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Nikki,


So hard to read your post. I am really truly sorry. I hope you all get to spend some quality time together, and to tell one another how much you love each other. Like I have said before, I believe it is his stubborness that has help keep him going. He has such a strong mind. You're amazing too Nikki, being a Wife and a Mother at a time like this, well, I don't think I could split my time. You're girls must be proud of you.


Thinking of you all.


Leila xx

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Nikki,


Just wanted to say we will be thinking of you all and sending love and strength, you are being so incredibly brave, a real inspiration to us all. Glad the girls are managing so well, children/teenagers are amazing in the way they handle things, they stay strong for you, and you for them. love to you all sandrax xx

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Nikki just to let you know Im thinking of you and you both had a settled night. Your girls , and Paul have been so strong and of course you . It just feels like a bad dream we are all going to wake up from... we have all been so lucky having such wonderful husbands and Dads,

love Jayne

xx

(If you ever want my e mail address just ask the moderators,)

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Been reading quotes from Winnie the Pooh,


"If there is tomorrow when we're not together... there is something you must always remember, you are braver than you believe, stronger than you seem and smarter than you think but the most important thing is even if we are apart... I'll always be with you."


"I think we dream so we don’t have to be apart for so long. If we’re in each other’s dreams, we can be together all the time.”


xxxxxx

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I know Jayne, it is all spot on isn't it? I believe these quotes about loss were about Christopher Robin going away to school and leaving his friends behind, knowing he will be changing, but they would still be the same, but it is thought the words were written with deeper meaning behind them. Very lovely words, and they must be especially poignant to you and Fiona (and perhaps Amanda if you see this) who have such young children.


Paul had a very settled night. The hospice have done an amazing job,


Nikki

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Hello Nikki

We also found our hospice fantastic and it makes it a very special family place where you can laugh and cry in a calm and peaceful place, so unlike a hospital environment.

Thinking of you all at this time xx

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My wonderful, handsome, clever husband quietly slipped away in the night. The girls and I could not have wished for a more loving, pretty near perfect husband and father. I consider my self incredibly lucky that he chose to spend his life with me. Paul would have put up with any amount of pain, and undergone any treatments if it meant he could spend more time with us, but in the end he could not beat this darn thing. The last two years have been so hard but we have had so many good times too, I am grateful for every extra day we have had as a family.


Thank you my fellow posters for all your love and support. I would never have imagined that I would post on a forum, but you all being there has made me feel so much less alone. Paul never posted or read anything here, but he knew about you all, and was always keen to hear about your opinions and experiences.


I have put this quote from Winnie the Pooh on Fiona's post but I just wanted to finish mine with it, as it is amazing how such few words can sum up exactly how I feel-


"How lucky am I to have something that makes saying goodbye so hard".


Take care all,

Nikki xxx

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Hi Nikki I am so sorry to read your post you are a wonderful family and this has reduced me to tears. Thinking of you all at this very sad time. Take care. Love Sue xxx

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I'm so sorry Nikki, I'm shedding a few tears for you all now but also I'm glad Paul's in no pain any more. I feel incredibly close to you and your story for obvious reasons, so it's a hard thing to read and my heart goes out to you both.

All my love

Rob

X

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