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jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Abraxane -our experiences so far

Postby jay » Mon Feb 23, 2015 8:54 am

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Abraxane -our experiences so far

Postby nikkis » Mon Feb 23, 2015 2:54 pm

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

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Abraxane -our experiences so far

Postby sandraW » Mon Feb 23, 2015 4:05 pm

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

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Abraxane -our experiences so far

Postby jay » Mon Feb 23, 2015 4:28 pm

Try and get some rest Nikki, its amazing where we get our strength from ,
love Jayne
xxx

Fifi

Re: Abraxane -our experiences so far

Postby Fifi » Mon Feb 23, 2015 8:38 pm

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

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Abraxane -our experiences so far

Postby Didge » Mon Feb 23, 2015 10:28 pm

Sending you a hug, Nikki xxx

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: Abraxane -our experiences so far

Postby PCUK Nurse Jeni » Tue Feb 24, 2015 3:10 pm

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.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Abraxane -our experiences so far

Postby J_T » Tue Feb 24, 2015 3:20 pm

Hoping Paul stays comfortable and thinking of you all.

Julia x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Abraxane -our experiences so far

Postby nikkis » Tue Feb 24, 2015 6:02 pm

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

Fifi

Re: Abraxane -our experiences so far

Postby Fifi » Tue Feb 24, 2015 8:45 pm

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

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Abraxane -our experiences so far

Postby sandraW » Tue Feb 24, 2015 9:10 pm

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

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Abraxane -our experiences so far

Postby jay » Wed Feb 25, 2015 9:45 am

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,)

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Abraxane -our experiences so far

Postby jay » Wed Feb 25, 2015 10:28 am

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Abraxane -our experiences so far

Postby nikkis » Wed Feb 25, 2015 3:35 pm

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

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: Abraxane -our experiences so far

Postby Birchen » Wed Feb 25, 2015 5:11 pm

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