the continuing saga!!

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lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

the continuing saga!!

Postby lottie13 » Sun Oct 28, 2012 9:08 pm

My husband finished PRRT in January after a gruelling 2011.
Briefly after a scan, ct, meeting with the prof, who said treatment hadnt worked, scan in Rennes, they CHOSE to use a product that was not on prescription, result eventually that husband only had main mesenteric mass that we knew about, we were so happy but it didnt last long
next day the prof rang, wrong scan so pete went all the way back to paris for the right one, which revealed multiple lesions.
prof eventually rang, we now know that when he says a couple of days he means weeks!
anyway he decided that the only treatment left for pete was temoda/xeloda.
so he started a 4 month 'cure' in June.
cure 1 blood test, prof rang to say ok to do the chemo, at home, tablets, very complicated but we managed it.
cure 2 blood test,no one rang, tried to ring couldnt get through, emailed no reply.finally got a locum gp to come round to check pete out, ok to start
cure 3 blood test, no one rang, surgery closed for 2 weeks, went ahead anyway
cure 4 blood test no one rang so hassled paris until I got to speak to prof, went ahead, he also was sorry that pete was off the radar and arranged ct scan oct 2
ct --- no reduction, put him back on somatuline, we have been asking for 2 years to try to help his skin and diarrhea, no chemo, surveillance BUT rcp meeting next day and would ring in a few days to confirm.
wrote to MT to confirm above.3/10
didnt ring, but managed to track him down, emailed him, emailed his secretary, rang secretary, never answers! emailed his blackberry, found the no.he rang,12/10 decided on chemo , will post prescription through, in fact his secretary faxed them through to our pharmacy, but didnt keep MT IN LOOP. sO LAST TUESDAY i WENT TO SEE MT FOR MY STRESS AND TOOK COPIES OF THE PRESCRIPTIONS, she was very shocked as she had received a letter from the prof, dated the same day as the fax, 12/10 compte rendu of the rcp meeting, saying NO CHEMO.
She said she would ring the prof the next day to see what is going on. So I rang the sec to request a rdv for her, and got the third degree, very rude and anyway the prof was away till monday and no one else could help.
doc rang the secretary, got nowhere, but finally got a phone slot tomorrow to discuss with the prof
I am feeling so ill and am on tranx now so I rang the hospital in Paris and asked if there was a translater who could be an intermediary between my husband and the secretary for a short time to give me a break, answer we don't have anyone!
Emailed Apted the support group for my husbands cancer and got no reply yet, on facebook the president suggested I email the secretary!
Finally got a call from The ligue, a man is coming tomorrow to see what he can do.
I really once again feel pete has been totally let down with so little support, he doesnt even have a personlised care plan, just a fax presription and no one calls in during the chemo to check his other health issues,stroke, diabetes, gout, horrendous skin
sorry for the rant but just feel pretty low and don't know what to do for the best

pennycsf
Site Admin
Posts: 592
Joined: Sun Jan 24, 2010 7:19 pm

Re: the continuing saga!!

Postby pennycsf » Tue Oct 30, 2012 5:59 pm

Goodness gracious, Lottie, it gets worse and worse! I have read your post about La ligue too, so won't bother hoping that they can help. :shock: Your médecin traitant sounds helpful, could you ask her to do the follow up of your husband whilst he is at home? At least then someone would know what he is having to cope with and when action needs taking.

I don't have any suggestions to make with regard to the French system and all the problems, I think you have already tried all the routes that I could think of.

For a translator, I can pm all the members of the forum and also CSF generally in case there is anyone who could be available in Paris. Do you have a date? We sometimes have bi lingual members in the Paris area.

So sorry that your health has now been so badly affected by all this, however hard, you need to step back somehow to recharge your batteries. You cannot support your husband otherwise.

Penny

lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Re: the continuing saga!!

Postby lottie13 » Tue Oct 30, 2012 6:18 pm

Hi thanks for the reply.
our medecin traitant finally spoke to the prof yesterday, she had made a rdv at 5pm as she was in the surgery all day with patients every 10 minutes had booked a slot, she had to ring 3 times and be told the prof was far too busy! before she got through.
outcome is meeting notes should not have been sent to our MT as the prof has over ruled the rcp decision.
the chemo MAY stop the tumors evolving for a bit, but there really is nothing else, so my husband has decied to try this last 4 'cures' and then call the treatment a day. he has had no quality of life during the past 6 years so maybe he is right.His mgmt level is 160 and marked as elevée so this is fighting the chemo, but cant find anyone who can tell us at what level the chemo would be useless. My daughter is a medical student and was told any expre"ssion lowers the efficacy!
Its not a meeting that we need help with its just someone to ring the secretary on my behalf when making arrangements, as I almost have a phobia against ringing her as she is very mean and uncompassionate person.she told my doc I am short with her and my doc has pointed out very strongly that I am speaking a foreign language and have a very sick husband who I have fought tooth and nail for for 6 years, and just maybe she should cut me some slack.She also told the prof of the many errors the secretary has made!
Also our doc is sending in the local nurse 3 times week during chemo to check my husband out, so she has been very good, but it really shouldn't take such a fight from me.If I could find someone in any area who speaks good french I could ring them when I need a hand, normally a phone call and of course I would be happy to pay for their time and charges, I feel it would let me step aside for a bit from the secretary and may diffuse things. The 2 people from the ligue were not interested really, said all they could offer was a french speaking psyche, asked for a donation then left, in fact they never even asked how my husband was feeling!

pennycsf
Site Admin
Posts: 592
Joined: Sun Jan 24, 2010 7:19 pm

Re: the continuing saga!!

Postby pennycsf » Tue Oct 30, 2012 7:41 pm

Well, it does seem that your MT is taking some positive steps. I'll see what I can do re giving you a hand with calls etc.

I admire your husband's attitude, as well, of course, as your enormous ability to fight on his behalf. You must be an amazing woman with huge reserves of strength, it is hardly surprising that these have run a little dry recently!!!

Your daugher is very brave going into the medical profession after all you and Pete have been through!

Penny


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