An appointment at last….

Well, just a bit of an update on Mum as we are back from Paris having seen one of the surgeons in Prof Belghiti’s team.

First of all….. it was HOT !!! 35C during the day which was overwhelming but I made sure that Mum kept drinking plenty of water. It probably doesn’t sound much to all of you in the US but over here in Wales we think it’s hot when it gets to 24C.

Anyway, we had an appointment for 5.30pm last Friday. I thought it was weird having it so late and that they wouldn’t do more than just look at all the notes and the scan images on the disc I took. However, due to some problem with his computer he couldn’t open the disc so arranged for Mum to have a CT scan on the spot ! I couldn’t believe it….in the UK you’d have to wait a week at leats for an appointment and then 2 weeks for the results. So he got the results back and actually seemed very positive. He said that the main problem he could see with surgery was that there might be an issue with her artery as the tumour may have grown too close to it. But he wouldn’t really be able to tell until the operation itself.
He is having his team meeting tomorrow (monday) where they will discuss Mum’s case and then get straight back to us.
I really don’t know whether he will agree to operate or not but it has certainly boosted Mum’s morale. He was so much more positive than the guy we saw at Basingstoke, who we just knew would say no.
So, more waiting (as usual) but hopefully not for too long, just a day or two. He said that if the surgery did happen then it could be in a couple of weeks which would mean a mad panic to get everything sorted out over here, plus drafting in friends of Mum’s in France to be able to visit her.
I would try to go over a bit but it is not easy trying to sort out someone to look after the children, so I am not sure how it would all work.
Still, I am not counting my chickens yet…..I will just have to try and keep sane until we hear back.

On another note, it has been three weeks since I sent Mum’s info to Prof Davidson in London and other than an acknowledgment email I have heard nothing…..

Tomorrow we are off to Swansea to see the oncologist there about starting chemo when we get back from holiday. We are keeping on with this until we hear back from Paris as if they say No to surgery then this will be the next option.

Sorry for the long rambling email but it has been a while since I have had the time to post.

Apart from all this Mum is keeping well at the moment and is just a bit tired from all the travelling.

Jemima

Thank you all for your messages.
Mum says that she drinks lots but I know that to her that means about 2 or 3 glasses a day….. I think I will have to do the bottle thing like you do Marion.
The guy in France is part of Prof. Jacques Belghiti’s team. They seem to have done a lot of research on CC so I am hoping that with their opinion and Prof. Davidson’s we may come up with something new, or maybe not and then at least we will know that chemo is definitely the next step.
Mum is feeling better this morning though which is great. Her temperature is normal and she is feeling better in herself. I think I’ll get her checked out at the hospital tomorrow though. It may not be a stent infection of course, it may have been something different but it is so difficult to know what to do. It would be nice to have some sort of guide. Is there a ‘CC for Dummies’ book ??!!

Andie, mum’s stent is plastic but she’s only had her latest one a few weeks so I am hoping it is not blocked already.
Was it the Cyberknife Centre in Harley Street you got in touch with ? I had a couple of emails back from thema nd they said nothing about having chemo first. Said to send a referral letter from her consultant and all scans etc. I know there are two in London so maybe yours was the other one ?

Interesting about the Omega 3. I’ll have to look into that if/when Mum starts chemo.

Hope your Dad’s bilirubin falls enough for him to start chemo soon. Keep in touch too as it seems like we have similar cases…

best wishes and thanks again

Jemima

Hello
Just thought I would update my Mum’s situation. Well, she had her stent changed on 1st June and after a couple of days at home she was doing really well and was almost back to her usual self. So, for the past three weeks she has been feeling OK and just a bit tired.
Then last Thursday she felt unwell, not at all hungry and had a temperature 39+. So I called our local doctor who came out to see her and has prescribed an antiobiotic – cefalexin. I don’t think it’s massively suitable but it seems to be working to keep things at bay. Her temp is lower but she is not feeling great. Anyway, we are seeing how things are going at home as she really doesn’t want to go into hospital. I will take her on Monday anyway as her consultant will be in then and we will see what he says.
It’s all a bit of a blow as it has been such a short time since the new stent.
On the 9th July we are planning to go to Paris to see a surgeon who specialises in CC so we will see what happens there.
If she is feeling well enough then we will go back to France a couple of weeks later to see all her family and then start chemo as soon as she gets back.
In the meantime we are waiting to hear back from Prof Davidson in London to see his thoughts about surgery, and we are sorting out a referral for Cyberknife.
So although there is lots going on we are still just waiting …….
I hate CC
Jemima

Thanks Lainy. The good news is that she is allowed out for the day so we will go and get her in a while and then take her back this evening so she is then in and ready for her stent change tomorrow. She is desperate to have a bath !
I hope that Teddy’s temperature comes down OK, and I will keep my fingers crossed for you both that the surgery happens.
For Cyberknife here in the UK, because it is not available on the National Health Service (i.e. free of charge) we have to pay ourselves and therefore we send medical notes/scans to them and do our own referral !
I thought maybe the place in Lille might be more experienced in CC because they have been open for longer, but maybe, as you say, it doesn’t work like that.
We will make some decisions this week once everything opens again….
Thanks again
Jemima

Well, a bit of bad news in that Mum is in hospital with cholangitis. She was feeling unwell last Thursday, cold and just not herself but we didn’t think much of it. Then on Friday she had a pain in her neck and by the evening had a temperature.
Thinking back on it I should have taken her to A&E then but she sounded bright and said she wanted to go to bed and sleep so I thought it was OK. But when I rang her on Saturday morning shehad been sick, was shaking and had a temperature still.
So I drove her to A&E and they took her straight in and put her on IV antibiotics, IV paracetamol and fluids, and oxygen.
She had reall bad shaking like I’ve never seen. The doctor had warned us about it but it was very severe and although he said it was one of the symptoms to tell us her stent was failing to be honest she didn’t start doing it until it was too late.
So she is still there as they are still monitoring her. Monday is a holiday here so they won’t be changing her stent until Tuesday but hopefully by then the antibiotics will have worked properly and she will be in the clear.
It has really knocked her back though and she had been looking and feeling so well until then.
She has only just been referred to an oncologist so we are waiting (again!) for an appointment with him. In the meantime I think we will go for a second/third opinion with Prof Brian Davidson in London and maybe also to the Cyberknife Centre in London, or maybe the one in Lille in France as it has been up and running for much longer.
I guess this is just the beginning of trips to the hospital and her being unwell, but it is horrible and I just don’t want her to go through it. She has always been so strong and seeing her on Saturday so helpless and confused (she was very dehydrated having sweated all night) it just wasn’t my Mum. I guess it happens to everyone but I just want my old Mum back