An appointment at last….

Discussion Board Forums General Discussion An appointment at last….

Viewing 15 posts - 1 through 15 (of 53 total)
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  • #37981
    jemima
    Member

    Thank 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

    #37980
    lalupes
    Spectator

    I really hope the chemo works well for your Mum, Jemima. My best wishes to all of you.

    Julia

    #37979
    kr15ty
    Spectator

    Hi Jemima,
    Sorry to hear all didnt go tp plan in Paris but glad you liked Dr Askill in Singleton, like i said he made time for us on his day off to go through all the questions we had, did he say what Chemo he would start your mum on?

    Good luck and hope you all enjoy your hols you deserve it,
    Thinking of you all

    Kristy x

    Jemima wrote:
    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

    #37978
    andie
    Spectator

    Hi Jemima,

    Sorry to hear that surgery is a no go at the moment but hopefully that may change once your Mom has had Chemo. At least now you are no longer in limbo and can focus on the Chemo starting.

    Is your Mom having Gem/Cis? I’ve started my Dad on Omega 3 1000mg super strength from boots, as I’ve read that it can help with the Cisplatin. My Dad was also told to take Ciproflaxin(sp) antibiotic to help keep bile duct infections at bay whilst on Chemo. Hopefully my Dad will start Chemo soon, he had a rough time with his last stent change and ended up with a bad bacterial infection. We have an appointment to start Chemo w/c 2 August but I don’t think his bilirubin will be down enough now. In a way he needs to build himself back up in time for the chemo as being in hospital as resulted in weight loss again.

    Have a lovely holiday in France, it will do you all good to have a break.

    Best wishes

    #37977
    gavin
    Moderator

    Hi Jemima,

    Sorry to hear that your mum can’t have the surgery and I hope that the chemo will go well for her. Please stay positive as who knows what might happen in the next 4 months and hopefully you will be going back to Paris again to see that doctor. And I hope that you all enjoy your holiday to France.

    Best wishes,

    Gavin

    #37976
    katja
    Member

    Hi Jemima,
    Sorry to hear about the surgery but you sound so positive and strong for your mum. Fingers crossed about the chemo. Will it be GemCis?

    I really think you are mad taking four children in a car?!! Are you trying to convince your mum to travel by train in France? Their trains are amazing, so fast, clean and not at all like our rickety old things. I think she’ll be much happier by train. In fact when we go to France in August I might suggest I go on the train and my partner takes the baby and dog in the car? I wonder…

    #37975
    marions
    Moderator

    Jemima….LPG is not allowed then. I wonder why that is.
    Have fun on your holiday.
    Best wishes,
    Marion

    #37974
    jemima
    Member

    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

    #37973
    marions
    Moderator

    Best wishes to you also, Jemima. Have a great time. I am wondering, do you take the Chunnel when crossing over to France?
    Marion

    #37972
    lainy
    Spectator

    Jemima, you have a plan! Good that is half the battle. Also a good decision on traiun vs car. Would probably be more fun as well. Have a wonderful Holiday, you all deserve it.

    #37971
    jemima
    Member

    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

    #37968
    linda-z
    Spectator

    Jemima,

    Just wanted to send you all my blessings and well wishes for good news from France too. Funny how the manner of the doctors we see spreads to us. If they just knew that, they would have a big start on helping their patients. Oh and by the way….I have been known to be very wordy on this site and I haven’t heard any complaints! So keep on! Let us know how things are coming along with everyone. So glad you got more than one opinion and have more than one option right now.

    Linda

    #37970
    katja
    Member

    Jemima,
    Do they every mention chemo/radiation to shrink the tumour before surgery? Might be worth asking the surgeon, your mum could have some chemo and hope it shrinks the tumour away from the artery?

    Keeping fingers crossed for you.

    #37969
    marions
    Moderator

    Jemima…..thanks for the explicit update. Hopefully, you will receive an answer soon. Regarding the disc: generally specific programs are used preventing others to download the information. We encountered the same problem when we forwarded ours to several physicians for review. I believe you had mentioned for this physician group to be quite familiar with this cancer. Still, I suppose I would want to know as to how many patients they have treated.
    Hang in there, Jemima. I also wanted to mention that the size of the postings do not matter because, it takes what it takes to convey information. No apologies are warranted.
    Hopefully, your Mom has had a chance to recuperate from this exciting trip. I am sending all my best wishes and crossing my fingers for positive news coming your way. .
    Best,
    Marion

    #37967
    lainy
    Spectator

    Hi Jemima! THe most important thing is that you nowmay have several options and that is a good thing. Good luck on it all and what ever decision is made it is the right decision!

Viewing 15 posts - 1 through 15 (of 53 total)
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