Abraxane -our experiences so far

Good for you Nikki, always go to the top, and so glad that the care has improved, and that your stubborn man is feeling better, and because he is feeling better also feeling more positive. Fingers crossed that the crisis is passed and things will slowly but surely improve for him now. Hope you have a lovely sleep and wake tomorrow with renewed strength.

Leila hit the nail on the head when she said how we take everyone's bad news to heart but equally rejoice when the news is better. love to all take care sandrax xx

Thinking of you, Nikki and hope things continue to improve x

Hi Nikki

I'm sorry you have both been having a hard time and am crossing fingers that the procedure brings relief. I know how exhausting all this is so try get a bit of rest yourself where you can (not easy with children too I imagine).

Here's hoping the fact Paul is starting to feel better brings options going forward. You're doing great and well done on escalating things when you did.

Much love

Cathy xxx

so pleased Pauls pain is getting better and you spoke to the matron to sort things out, when jem was in hospital during the summer his care wasn't that good until I threatened to lodge a formal complaint, I started to log everything down , the care soon improved !!!Take care , I hope you are getting some rest and eating,

love Jayne

xxxx

Hi Nikki.

Pleased Paul's pain is improving. Really good to read he is ready to carry on the fight. Also pleased you went higher to get better results, that is one thing we should never be scared of doing. These are our loved ones, and we will fight fir them.

(Sorry to interrupt the post, I just wanted to say to Jayne, what you said about Jem writing the 60 page document, I think that's the most beautiful and special thing I've ever read. It did make me smile about the passport, but wow, what a special man to think about and do that for you. Just think that's so lovely. )

Leila xx

Up and down we go, good day, bad day. No hope, a little hope. They think there are some tumours in his bowel, only small ones, but combined with the complexity of his plumbing following his surgery, they are causing problems. So they are going to try and put a duodenal stent in to help his stomach empty, as eating causes pain, and he was being quite sick. Currently Paul has a drain into his liver, draining away the bile, and they are hoping that at the same time they can also replace this with a stent. It sounds very tricky and involves a gastroenterologist and a radiologist, but they are fairly confident they can sort it.

We are waitng to see another oncologist For a second opinion. The current one knows this and is making a real effort. His thinking is, they will take some biopsies when they go in, and depending on the results of this, he may either try him again on Folfirinox, or continue on Gem/ Abraxane. It so difficult as I don't want Paul to have false hope, but at the same time, I know how much he wants to keep on fighting this and anymore time is wonderful, but then, I also don't want him to spend a lot of the time he has left in hospital, an hour and a half from home. Oh for a crystal ball to know what to do for the best.

My daughter had a lovely birthday. The girls and I stayed in a posh London hotel near the hospital Friday night (Paul was coming with us but didn't feel up to it) and then when we arrived at the hospital the ward staff had a cake for her. The one advantage of Paul being in hospital was that I didn't have to have 7 Loud teenage girls for a sleepover as originally planned!

Thank you all, nikki

I hope the op gives him some quality time. As you say, oh for that crystal ball! I never thought we would have got this far but here we are still so hope Paul rallies and carries on. Thinking of you and hope things improve this week. Sending you lots of love. xx

Hi Nikki,

What a nightmare for you all, I understand completely where you are coming from, just lets hope for a lot of luck this week and that they can get Paul sorted and get the stents in.

These decisions are all so difficult, and yes the crystal ball would be so handy.

Glad your daughter had a good birthday, and how lovely of the hospital to get a cake, you might have escaped the sleepover for now, but I am sure its only postponed!! sending you love and big cyber ((hugs)) sandrax xx

Billary sent duonenum stent, drain bags were a dab hand at these you will be catching us up with the sents. Seriously though paul should see a big difference when stents are in. Think you may have to see dietician after duodenum stent as been put in, see if they mention crackers, that's all they seem to have said to us eat crackers, we did follow everything to rule when stent first inserted but these days beloved just seems to eat what he wants, and touch wood we are ok. Hope things get better for you love wacky x

How is Paul getting on now Nikki? Have you seen another Oncologist?

Please let us know when you can.

Leila xx

Thinking of you Nikki and was wondering how Paul was,

love Jayne

x

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

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

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

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

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

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

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

Hi Nikki,

How is Paul coping? Is he home yet?

Thinking about you all.

Leila xx

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

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

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

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

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

Hi Nikki,

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