Abraxane -our experiences so far

[jay]

Thinking of you Nikki and was wondering how Paul was,
love Jayne
x

[nikkis]

Hi all,
Well, they put the duodenal stent in yesterday. That went fine, they couldn't get the biliary stent in though as there was too much constriction, so he still has an external drain. They have said there are some tumour in the bowel but no large mass. We saw the second oncologist who was great. He didn't think Paul should have any chemo now, but we should wait and see how he feels once he has got over all the recent prodding and poking. He thought that then it may be worth trying folfirinox again, in a week or two.

So our plan is to get home asap and see where we go from there. Hopefully that will be the beginning of next week, but lots to get sorted before then. Pain is better controlled by syring driver with afentanil and Diamorphine for breakthrough and he will go home with these.

So not sure what the next few weeks holds, we are not overly optimistic, and at times it is all almost unbearable, but some how you just keep going,

Nikki

[sandraW]

Nikki, you have to keep going, but its such a crock of SH**, sending you all massive ((hugs)) just wish I could do more, thinking of you sandrax xx

[wackywacky]

Hi Nikki, thinking about you and Paul, are they going to try again with the billary stent once it slows down going into drain bag love wacky x

[nikkis]

Thanks Wacky,
They did say they would try again next week, but we have said no, we just want to get home and if he is feeling stronger in a week or two we might try again.
Nikki

[Didge]

rooting for you both, Nikki. Hope improvements are around the corner. x

[nikkis]

Thank you Didge and Sandra too, it helps so much knowing that others know how this feelsx

[jay]

Massive hugs Nikki, (the nurses showed me how to flush the drain into the liver, had to flush it three times a day. The district nurses when jem was sent home hadn't seen a liver drain before so I continued to flush it at home, meant I wasn't waiting on anyone)
love Jayne
x

[Fifi]

Hi Nikki,

How is Paul coping? Is he home yet?

Thinking about you all.

Leila xx

[nikkis]

Hi Leila,

Sorry to hear your Dad is so down at the moment. Paul is still in hospital. The duodenal stent is blocked but they are going to try and unblock it tomorrow. We are nearing the end now, but if he could eat and drink a little without being sick, he would be more comfortable. He actually feels he wants to stay in hospital for now, and with just the old blip the care has been good. It's just very hard at times as I feel torn between being with him, and home with our girls.

Nikki

[Didge]

Sorry to hear this, Nikki. Seems a lot of us are having a bad time at the moment. My fella couldn't have his chemo this week as they sent him for a scan instead due to worsening pain. And am well aware of the apportioning of time - very difficult. xx

[sandraW]

Nikki, sending you more ((hugs)) I just hope that Paul feels more comfortable soon, it must be so so hard for you wanting be with Paul, while giving your girls the support they so obviously need, Rock and hard place come to mind. This disease is relentless, we all keep fighting but it seems as though it just gets stronger, the more we fight it. You have been so strong, and I am sure you will continue to be so, thinking of you all, love sandrax xx

[jay]

Ah Nikki, thinking of you , paul and the girls.
I felt torn too as Jem and Jessica both needed me.
Take care and try and get some rest yourself, you have been amazing
love Jayne
xxx

[Fifi]

Oh Nikki,

I'm so sorry. I never expected you to say that. Paul has done so well, he has been such a fighter. Stubborness remember? I hope and pray that that fight and stubborness comes through him again.

Thinking of you all Nikki,

Leila xx

[sandraW]

Hi Nikki,

just wondered how you are all doing, let us know if you have time, love sandrax xx