jemima
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Hi Tom
My Mum and I were in the same situation as you and Ben, earlier this summer. Before she was diagnosed we had planned a trip to France with my daughters to see lots of family. By the time we had seen various surgeons for second and third opinions the opportunity to start chemo coincided with the trip to France. However, we decided that the emotional benefit to her of seeing friends and family would far outweigh any benefit of starting chemo there and then. As it was she had the most wonderful two weeks in France, came back pretty relaxed and refreshed, and so much better prepared to then start on the chemo.
What with various appointment timings and things she didn’t actually start chemo until another 3 weeks after we got back… and so far so good ! She is tolerating the chemo very well with only a few manageable side-effects. Of course we don’t know yet whether it has had any effect on the tumour but we will know soon. That’s the scariest part…..
Good luck with your decision, and I hope you both have a wonderful time in Denmark if you decide to go.
best wishes
JemimaAndie
I am so sorry to hear this news about your Dad. I can only begin to imagine what a devastating blow it must have been. My thoughts and prayers go out to you and your Mum and Dad.
It sounds like you are not giving up though and certainly getting the Cyberknife referral and a second opinion from someone else is a step forward.
Is there no chemo that he can try, even with raised bilirubin levels ?
Thinking of you
JemimaOh Andie, I am so sorry that your Dad did not get his procedure done today. That must be so frustrating, for all of you. I am angry for you too ! I will keep my fingers crossed that it happens on Friday.
best wishesJemima
Hi Andie
I am keeping you all in my thoughts for Wednesday and the stent procedure. Your Dad sounds like he has such a great attitude.
My mum is doing really well on chemo. Apart from fatigue she has no real side effects. The odd spot of nausea which is easily controlled with medication and that’s it. I don’t know whether it’s because they are giving her a half dose each week instead of the full dose in week one, but it seems to be doing the trick.
She is just worried that because she doesn’t feel too bad that it’s not working. But I don’t think that’s that case…at least I hope not.Good luck for you dad tomorrow
best wishes
Jemima
Hi Andie
I am so glad to hear that your Dad has had no change in his CT scan. With not having had any treatment it must have been a worrying time.
Mum will have a scan in a few weeks after her chemo has finished and I am just dreading it incase it hasn’t worked.
I am keeping my fingers (and everything else) crossed for a successful stent placement so that he can get that pesky bilirubin level down and start on his chemo.
all my best wishes to you and your familyJemima
Hi Kim
Thanks for your info. Mum has only just completed her first cycle and yes she is having blood tests the day before she is due her chemo and so far they have been fine. No sign of reduced wbc yet but obviously that may change.
So they have gone straight for half-dose without even trying full dose. But I guess that they know what they are doing !
I am pleased to hear that your Mum did so well with the chemo. That is what we are hoping for as her tumour doesn’t need to shrink much to be able to be re-considered for resection.Andie
Hope your Dad is getting on OK. Mum is doing fine now she is on her anti-nausea meds and is even having a friend over for supper tonight.
I will ask the oncologist more about it all when I take Mum in next Thursday.Jemima
Andie
Sorry can’t really help on the bile question but I am so sorry to hear that your Dad’s chemo hasn’t gone ahead. I really feel for you all. I hope that they manage to find out why his bilirubin levels have gone back up.
My mum had her gallbladder out about 40 years ago and no-one mentioned this affecting the bile. Her current stent is now 3 months ‘old’ and I am just dreading what will happen to her when it starts blocking. The chemo is not affecting her too badly at present but as we all know things can change so quickly.
I hope that they manage to sort out your Dad’s stent tomorrow if that is the problem and that he gets his chemo soon.
best wishes
JemimaHi Andie
I am keeping everything crossed for your Dad, and for you and you Mum, for Thursday. It’s great that he is feeling well enough to garden…and finally we have the weather for it too !
best wishes and all my thoughts will be with you on Thursday
JemimaThank you Calida for those beautiful thoughts about life. I face the prospect of losing my mother to CC and cannot imagine what it will be like. You are right that there is humour in any situation and I love the idea of pennies being from those in heaven. It’s very comforting.
best wishes
JemimaHi Pam
That sounds like great news. It must be a relief for you and your sister. I have not heard of the ammonia thing. Is this common ? My mum is now on chemo but no-one has mentioned this…is it part of it ?
best wishes
JemimaThanks Lainy and Andrea for your messages. I know that it won’t always be like this but it is so nice for Mum as she was so scared before she started chemo and her feeling OK has calmed her state of mind.
Andrea, yes Mum was in from 9am to about 3pm for her first day of gem/cis but next dose will only take a couple of hours so they say. I stayed with her for about an hour but then she told me to go as there didn’t seem any need for me to be there and the nurses kept her smiling, brought her drinks, biscuits, sandwiches, magazines etc etc ! I just went back to fetch her at the end of the day.
I really hope that your Dad starts his chemo on the 2nd. It is so good to finally be getting something done….best wishes
Jemima
Hi Andrea
I am so glad to hear that things are finally looking up for your Dad. That ‘s such good news and I am keeping my fingers crossed that all goes well for September 2nd.
I think that trying to keep things normal when that is possible is the best way so it’s great that he was able to go to the Sound of Music and out with your son. I keep trying to get Mum to do less but of course she wants to keep busy, and it does do her good !
best wishes for those bilirubin levelsJemima
Dear Lainy and Teddy
You are in my thoughts and prayers. It was your posts that originally drew me into this forum and I can only thank you for the inspiration that you and Teddy are to me.
All my best wishes
JemimaHi PGTips
I am in the UK too and my mum was diagnosed with CC in Feb 2010. After 3 second opinions (if that makes sense !) we accepted that she is inoperable and she has now started on chemotherapy (just last week). So it has taken us 6 months to get to this point and a lot of ups and downs on the way. Initially I wanted everything to happen as quickly as possible but then we were in the same position as you and we had booked to go to France for the summer holidays so decided to postpone the chemo start date. I don’t know whether we will ever know whether it will have made a difference delaying it by a month, but I do know that Mum had a wonderful holiday surrounded by family and friends. Sometimes state of mind is more important than anything.I hope your Mum does get to go to Wales, if she is up to it, and that you have a great time.
best wishes
Jemima
Dear vzimarino
I am sorry to hear about your little brother and that you have been put in the situation that you have to find out about CC. None of us wish that we had to but this forum is the best place I have found for help, advice and support.
Being so far away must be really tough for you. Both my brothers live far away from our mother who was diagnosed in Feb 2010. They often ring and email for information and I try to give them as many details as possible as to her treatment and how she is doing.
I think if you are a long way away then it is good to be as informed as possible so that when people are telling you things then you can relate to them a bit better and know what is going on. Have you been able to visit at all or will be able to in the future ?From what I have read on here radiation for bone mets seems to bring help alot so hopefully your brother will get some relief soon.
My thoughts and best wishes are with you and your family.
Jemima
