Search this site
I am not bad with driving through the snow J I am Polish so we used to it. J Gregory is still in the hospice but finally he seems to be better with the pain control and vomiting. He has also started eating better about for about 2 days. He had a blood transfusion yesterday and had a line put for the chemo. He decided to postpone chemo and get more strength as he was not able to do it so far because of all these symptoms. He will get it probably on 20th or 22nd. NHS refused to pay for Cetuximab as we expected. So I will be appealing as the oncologist suggested and then if the appeal if rejected I will be negotiating with the hospital to pay only for the drug not for the service. This was advised by the oncologist too. When Gregory feels better I feel stronger too.
Patrick I will keep fingers crossed for you results.
I am sending warm hugs to all of you…
Many thanks for your good wishes for the results of my CT scan which I had today.
Interestingly I am having Cetuximab but I'm not sure how it's being paid for. I think it's one of those trials which if it works then it's paid for by the NHS otherwise not. I do hope it works - I've now only got days before I find out what it's doing.
I do hope they manage to stabilise Gregory and get him onto some chemo. I'll keep my fingers crossed for you both.
Hi all!! Well what a cold snap you are having there! I hope you are all keeping warm... mmm we might have a BBQ here for tea tongiht... he he he Don't worry all, you can pay me back in our winter! Patrick, good luck with your scan results. I don't know about you and your wife, but I find that waiting on scans absolutely frightening! But as my Dad says, what will be will be. I sounds like you are doing pretty well, with chemo symptoms on this regime - that alone must make you feel a little more human again. Court - yes such a bummer about Cetuximab not being funded, seems so unfair depending on where you live you can get it funded (Magda, you too are feeling this same thing!). Dad always hs problems with his postassium levels too, can make him very wobbly and confused if they get too low. At least we know now and they keep a good eye on it. Magda - great to hear from you. Magda - great to hear from you. Sounds like Gregory is getting stronger and good news that he may be able to have chemo soon. Good luck and wish him stength. And as I mentioned there, so unfair about Cetuximab - it really does bloody annoy me that it's not funded to all. Laurpat - We haevn't heard from you here for a while, I hope you are doing OK. Well all love to everyone, and keep warm!! ...... = ) Jules
Of course I want to know the results of my CT scan but I take the view that it will be whatever it is. If it's disappointing then I've got to hope that I can be put on another lot of chemo that will work. Perhaps a lower dose of XELOX - assuming I can tolerate it. It would be a very high risk strategy as it put me hospital last time but I know it began to shrink the mets in my liver. I do hope I don't have to go down that route but if needs must be...
I have at long last managed to write something down on the tread. I read each one when it comes through on email but never seem to get onto the site to reply.
Everyone seems to be "getting on with it" at the moment except poor Gregory, I really hope that he will get to have the chemo soon as he does appear to be getting really good care at the hospice and getting stronger. Thinking of you Magda and Gregory.
We have a scan coming up on the 5th January and if it shows a good result then Alex will be given a 3 month break to allow his body to recover from the chemo. I started up a new tread as well as Alex seems to be a different person on this round of treatment compared to the last and I fear that it might mean the treatment is not working this time. Apart from the one treatment when he was sick all the way home (even the docs think he caught a bug as son was sick the next day) he has had hardly any side effects from the chemo. He does struggle to get out of bed in the morning but he is usually up at 8.00. He used to not be able to get up until 10 and then went to bed at 9.00pm. He used to be washed out after day 4 of the treatment and now he seems pumped full of adrenaline and is bouncing off the walls. They did up the anti sickness but cannot believe it could have this much difference. Hopefully everything will be ok.
I think I have done nearly all the christmas shopping as I only have one more week and then the boys finish school.
Anyway, keep well eveyone and hopefully we will all get the news we want with the scans coming up.
Hi Jash - Great to hear from you. Yes I know what you mean about worry when they are feeling good, does that mean the chemo is not working?! So hard, I really don't think there is any hard and fast rule. Just sometimes the symptoms are worse than other times. I also think, if you are like me, then you just worry about anything... you know 'eek Dad is feeling good - chemo might not be doing it's job!' 'eek Dad's as crook as a dog, must be diesease progression!' Oh everything is a worry really isn't it!! But the fact that Alex is feeling good, that is fantastic... try to enjoy it and let the worry subside for now! I am just thrilled that Alex is doing well, looking like a wonderful Christmas for you. I see your winter over there is pretty horrific, keep warm and keep smiling and let the good times role! Also love and luck for your scan coming up. XOX
Take it easy all - Jules
I've been pretty unwell over the last week so havn't kept up.
Nice to hear from you Jash, hope Alex is ok. Nev has a scan soon and we get the results on 5th Jan. He has been really well throughout so I have often wondered if the stuff is doing its job, but then I think if it wasn't would he feel well because he certainly didn't before chemo started, nightmare isn't it!
How are things with Gregory?
Hope everyone else is ok
Love Ann xx
Thanks for asking how Gregory is feeling and how I am.
He is still in hospice but we have been going home for some hours almost every day recently. Gregory is feeling a bit stronger now. His symptoms seem to be under much better control. But because he had to take such strong painkillers doctors offered him nerve block for pain relief. It is quite risky but Gregory had agreed. He had it done yesterday and everything went without complications. We have to wait couple days to see if it helped. Gregory is going to start chemo on Wednesday if everything is ok. He will have FOLFIRI. NHS rejected to pay for Cetuximab and they said that they will pay if they see only liver mets. Because Gregory has also lungs mets they refused. I am going to appeal but we do not expect positive decision. So I will be starting to look for money for the drug and negotiating with the hospital to pay only for the drug.
I am feeling a bit stronger at this moment. Also Gregory’s mum came and she will stay a bit longer with us. I am trying to concentrate on every day without thinking about the future and it definitely helps me…
How is everybody now? I hope there is more good news that worse ones…
Patrick do you know your Ctscan results?
If you have any questions about our organisation our Macmillan team would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2010
what are these?