jemima
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Hi sallypa
I was in your situation in February when my mum was diagnosed and never having heard of CC either (not many people have of course) but I found this website such a source of information, advice and comfort and I am sure that you will too.
Gem/cisplatin is the standard chemotherapy combination for CC. If you could tell us where you are then I am sure there will be someone who can either recommend someone locally or nationally who you can go to for a second opinion. In this disease it is so much better to go to a doctor who specialises in CC.My mum is about to start gem/cis next week 6 months after diagnosis but we went for three opinions from different surgeons and unfortunately they all said no but we are hoping that the chemo might shrink the tumour enough to make it an option later.
Sending you my thoughts and best wishes
Jemima
Hi Andie
What a rough time you and your family are having. I am sorry that your Dad is having all these complications. I have been in the same place in terms of things not progressing. My Mum was diagnosed in Feb this year and will only start chemo the first week of August (I know that’s partly our decision but still only made a couple of weeks difference), but it’s 6 months ! However, looking back on it I guess we have done quite a lot (3 surgical opinions) and learned a lot during this time. I am sure that if you look back there has been been progress – it is just not always obvious at the time.
I have always confided in my Mum about things but now I can’t either. Do you have any other friends or family who can help (apart from all of us on here of course), or who you can talk to ?
As everyone says on here make sure that you look after yourself as well as your Mum and Dad.
I am sending you hugs and positive thinking for Friday and hope that you get good news for your Dad. Keep us posted and know that we are always here for you.
JemimaHello Jan and welcome to this wonderful place where everyone is so supportive. My mum was diagnosed in February this year aged 77 and we have just heard from our 2nd opinion surgeon that he also thinks it is inoperable. So Mum will be starting chemotherapy in August.
I have found this site such a help in terms of emotional support and knowledge and I hope that you do too. I am sure that your family are doing all that they can but it certainly does help to be able to speak to other people in the same situation.
Can you tell us more about your experiences ? You say that you feel nauseated all the time. Do you have jaundice still or are you having chemo ? They should be able to give you drugs for the nausea.
Sorry I can’t help more but welcome to the forum and my best wishes go to you and your family.
JemimaThank you all for the good wishes. We are going to enjoy the holiday and then come back and concentrate on Mum’s chemo.
Kristy – she will be having gemcitabine/cisplatin on a 2 weeks on, 1 week off cycle for 4 cycles. I just hope that she tolerates it well….
Will be lurking while I am away as I have to take my laptop for work so I’ll be checking up on everyone
best wishes to you all
Jemima
Hi Lainy, yes it will definitely be more fun for my mum but I will still be in the car with the children while she relaxes in the train !
Hi Marion, no we don’t taken the Chunnel as our car is converted to run on LPG and they won’t let us in ! So it’s the ferry for us. Also, as we live right over in the West of the UK it would take 6 hours of driving first to get to the Chunnel port…… Oh the joy of holidays !
Thank you both
Jemima
Hi Andie
Sorry I can’t help with the wording on the report but just to say that I am glad to hear that your Dad is home and feeling better. it must be lovely for you and your Mum to have him back with you.
best wishes
Jemima
Well, we got the news from Paris yesterday and it was a big fat NO…
They decided that because of the artery involvement that they weren’t prepared to take the risk and so we are back to the chemo option. Mum took it really badly but I have been trying to make her focus on the chemo and how that might help. Infact the doctor in Paris did tell her to come back and see him in 4 months or so if the chemo does shrink the tumour so there is a very faint spark at the end of the long tunnel.
On Monday we went to see the oncologist at Swansea (Dr Askill) and he was great. Yes, you are right Linda, how they are does have a big effect on us. Mum did not like the doctor at Basingstoke at all and all she remembers is that he ‘told me to go home and wait to die’, which is not what he said.
Dr Askill was very straight talking but in a real person to person way, not condescending at all. Anyway, it turns out that Mum can have her chemo at the hospital where she has her stents done which is only 45 minutes away instead of Swansea which is 1 and a 1/4 hours away.
It doesn’t sound like much but it will make all the difference to us. The doctor there is part of Dr Askill’s team anyway so it is all working out well.So it has been another rollercoaster week, along with trying to organise our holiday to France. I think we now have a plan. I just have to convince Mum to do one section by train instead of spending 3 days in a car with four young, bored, tired and very active children ! I keep telling her that she needs to stay well before starting chemo but she is worrying about me driving by myself…….Mothers !!
Thanks for listening and sending everyone my best holiday wishes for the summer (or winter for those in the southern hemisphere
)Jemima
Hi Kristy
Thank you for your reply. I told my Mum what you had written and along with the fact that it is just a lot closer she has decided that she will the chemo at Singleton.
We are off there tomorrow (monday) to meet Dr Askall for the first time and to get everything set up so that she can start her chemo as soon as we get back from holidaying in France.
This is providing that the surgeon in France that we saw last week does not decide to operate. We are waiting on tenterhooks for that news but hopefully it won’t be too long.
I hope very much that your partner is still feeling well with the chemo. I expect that you don’t have much time to get on here but I just wanted to let you know that I have been thinking about you.
thoughts and best wishesJemima
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
Hi Andie
I am so sorry to hear this about your Dad. It must be such a blow for you all that this has happened and he can’t start his chemo as planned.
I am sure that they will sort out how to deal with the infection, even if, as Kris says, they just keep trying different antibiotics.
I hope that he manages to keep eating and that he feels better really soon.All my thoughts and best wishes
Jemima
Hello Christine and welcome to the website officially ! You have been on here longer than I have but it is such a great place to get information and support that I couldn’t help diving in straight away.
What an amazing woman your Mum is to have such a great attitude and to be surrounded by so much family. My mum was diagnosed in Feb 2010 but has not yet reached the angry/fighting stage which I would so love her to have. She has been such a strong person all her life but this seems to have beaten her at the moment.
I am sure it will come eventually and in the meantime she has family and friends who are fighting for her. Especially me as I am closest to her physically (only 500 yards away !).
As the others said getting a tape recorder so that everyone can hear what the doctors say about your mum would be a great idea. Whereabouts are you and who is your doctor ?
Ask as many questions as you can even if they sound basic. I got the doctor to draw diagrams and things so that both Mum and I could understand where things were and what is going on.
Have they said no to surgery for the tumours ? You mention her gallbladder. It is always worth getting a second opinion or even third (it’s what we are doing) if you want to go down that route.
best wishes to you, your mum and your family
JemimaThank you Wabals for this great news. It gives me hope for the second and third opinions we are seeking for my mum.
Congratulations and best wishes to you and your husband.
JemimaDear JDH
A few months ago I was at the stage you are at now, but as Marion has said first the crying then the fighting. I am definitely at the second stage and I am sure that once you get your head a round it all (if that is possible) then you will be too.
My mum has been deemed inoperable by one surgeon but we are going for a second and third opinion. If this doesn’t work then she is lined up to start chemotherapy (gem/cis).
My mum first presented with jaundice and was diagnosed mid Feb 2010. Once they got the stent put in she felt so much better as before that she was bright yellow, nauseous all the time and very itchy. Her first stent lasted nearly 3 months until she got an infection and had it changed. Again she felt better soon. At the moment apart from getting tired more quickly she is like she used to be.
I would definitely ask your mother’s doctor to get the stent sorted asap if it is possible. Has she been prescribed any meds for the nausea ?
Whereabouts are you ?
I am sure that someone on here can recommend a specialist in your area where you could go for a second opinion on surgery.
I have found this forum such a mine of information and support and would not have been able to deal with half of what has happened without it.
My thoughts and best wishes go out to you and your family.
JemimaThat’s great news that he is booked in although not so good that he is going yellow. It is crazy that the doctors have let him get to this stage without doing something sooner.
Anyway, I hope that he carries on feeling OK until the stent is changed. And yes, if he does get worse then I woudl definitely take him to A&E even if it is before Tuesday. If he starts itching etc then they can give him meds.
best wishes
Jemima
