Abraxane -our experiences so far

I've just caught up with you guys and I'm very sad to read how unwell Paul is. I hope there has been some sort of positive turn of events for you. Rob x

was just wondering how you are doing, always in my thoughts nikki,

love Jayne

x

Sorry folks, but as you all know I am sure, you have to be in the right frame of mind to put things down sometimes.

Anyway we are still in London. They failed to unblock the duodenal stent and then they did plan to do a venting PEG, which means a tube from his stomach out to his skin, that would mean he could drink at least, and then everything could be drained out. They then realised they couldn't do that as his stomach is actually under his ribs as a result of surgery. So now he has a naso gastric tube and is being fed intravenously (which will carry on at the Hospice and then home). If I say it has been a hard few weeks that would be a bit of an understatement! We still manage to have lots of laughs though, the care has been good, quite a lot of the staff outstanding, so that has really helped.

Currently the plan is to go to our local hospice next week, and then hopefully home from there. I have been staying in London for the last 10 days, so am desperately keen to get him nearer home for at least some of half term. The Professor still thinks more chemo is an option, but we will review that in 2 to 3 weeks, not something we terribly convinced he will be up to, but we won't rule it out either.

Rob - I noticed that you and Carl are back to London in a couple of weeks, presume you are back at L.C.,which is where we are now. Paul was very disappointed that our visits won't overlap as he would have liked to have met you!

Take care all,

Nikki

Hi Nikki,

Sorry I didn't mean to put you under pressure to post, but was just wondering how things were going. It will be so much easier when you get Paul back nearer home and I know he was settled when he was in the hospice before so that's all good, just glad to know things have improved a bit for you all.

Probably a good thing you didn't meet up with Rob and Carl they might have taken Paul out shopping with them in his dressing gown too!!!

Great to hear from you love to you all sandrax xx

Sandra, I didn't feel under pressure, it's lovely to know people are thinking of us!

Nikki

Hi Nikki,

Really hope that Paul can have some chemo, and that you get him home soon. I am sure it will pick him up being in his own home, his own bed.

How is he in himself? We are all thinking about you Nikki.

Please send Paul my best, my Dad hopes he gets home soon.

Leila xx

Thank you Leila, and Paul says to say thank you to your Dadx

Hi Nikki,

I've just read your last posts. I am so sorry to hear that you are having a very difficult time. I really hope that Paul can go back to chemo soon.

I am thinking of you all!!!

Love,

Susanna xxx

Hi Susanna, hope you are ok, and those lovely boys of yours are keeping you busy, I am sure. I am always thinking of you too,

Nikki

Hope Paul gets home soon Nikki,

massive cyber hugs to you all,

love Jayne

x

Thanks Jaynex

Hi nikkis, sorry to hear Paul has been going through some trials of late. I hope his issues can get resolved and you can get him home, where he belongs.

KBO

Julia x

Hi Nikki

Fingers crossed things improve. It's pretty unrelentless at times and exhausting isn't it?

You will be in my thoughts

Cathy xx

Yes it's a massive shame we miss each other. If he's in the LC at least he's getting looked after well. We are down on the 2nd march, which I think is two weeks tomorrow. For your sakes I hope he's home by then though!

Rob

X

Nikki,

I'm really worried about you and Paul. I know you can't post all the time, and that sometimes it is just so hard to do.

I don't know, just really thinking of you both.

I really hope you both get a break, and things turn round and we get to see you post.

Leila xx

Hi,

Just a quick note to say Paul is now in the hospice, 10 minutes from home. I have been in London with him for the last fortnight, which has been incredibly hard as it is 2 hours from home and our girls. He felt happy for me to come home to sleep tonight, so I am appreciating sitting in my own bed, just wish he was with me.

Thank you all for caring so much,

Love,

Nikki

I'm sure you do Nikki but its great he isn't too far away. Try get a good nights sleep.

Cathy xx

Thanks Cathyx

Hi Nikki,

So glad Paul is back nearer to home for you both, it will make it so much easier for you, try to get a lovely night's sleep and then you will hopefully feel refreshed. The girls will be glad to get you back home and their dad nearer, so that they can visit, thanks for letting us know, love sandra xx

Thinking of you Nikki. Hope today is a good day (as far as they can be). Sending lots of love, Didge x

So glad Paul is nearer home. Hope you got some sleep,

love Jayne

xxx

Hi Nikki,

So pleased Paul is nearer to home. Must be so easier for you. Do you know when he will be able to come home?

Leila xx

They are struggling to get on top of his pain at the hospice at the moment, so until that is better controlled he will stay there. I desperately want to take him home, but as we know from the experience of others that is not always possible, so I am prepared for that. It is good to be able to spend time with our girls though.

Nikki

Nikki, It is good to hear that you are able to spend some time with your girls, but no doubt Paul is never out of your thoughts. I hope they can get his pain stabilised and that he can get home soon.

Take care

Steve

X

Sorry to hear Pauls pain is so bad, I hope he gets the help he needs asap. For your sake I'm glad he's in the hospice closer to you, 2hours away must have been tough!

Rob

x