one of the oncologists assistants came in to see my husband and i was not allowed to stay, she didnt treat him just talked.
When she came out I asked her if he had understood as he doesnt speak much french. she said no prob as she spoke english.I said we had a few queries and we went back in.My husband has really bad toothache so we talked about that, he can go to the dentist but mustnt have any invasive treatment before checking with the hospital. We asked a couple of other questions, then asked if she could explain a few things from the letters which the oncologist had given us. Just to explain the letters were various ones between doctors but contained the results he had never been given.We were given copies at the end of a previous visit and did not go thro them with the oncolgist. They have many errors in them eg husbands age 47, he is 63. frequeny of chemo 42 weeks, in fact it is 42 days, i could go on with a catalogue of errors but you may all fall asleep. It was also agreed at the previous appointment that a dermatologist would come this week to see my husbands severe and debillatating skin condition. He has had this a year now and no one can seem to decide what it is for sure.
At this point the doc got the 'hump' and said talk to your oncologist, I said fine where is he, response hes too busy.
I left my husband to it and returned to pick him up later. The oncologist had come in spoken only in french, he is nearly fluent in english, looked at his skin and tersely said that the dermo would come on thurs.
I am really concerned now that by asking these questions and voicing our concerns, I may have made matters worse for my husband.
Are these levels of errors really accepted in France as normal, can we really not query things we are not happy about.
Bearing in mind my husbands treatment is decided by a panel who rely on the accuracy of his notes to make decisions.
Who would any of you suggest I talk to about this or would just let them get on with and to hell with the consequences, I really am at a loss to know what to do.
My poor husband just carries on the best he can, with little sleep due to the itching and burning of his now scarlet face and neck, which varies in severity and can swell to the point where it cracks and bleeds.
I would just make a few notes of the mistakes you have found, and you have the right to see your husbands dossier whenever, so check what else is wrong..then you will have some concrete things to show them when you finally get to complain.
You have made great steps since you first started this subject and we are all still behind you with support, I hope this will give you strength.
If you are worried about complaining, (in case, heaven forbid, there is a knock on effect on your husband's care) why not go back to your GP who has been so helpful? Bearing in mind that your husband is being treated "from afar" and doesn't see the doctors who make up the Renatan team, it would seem imperative that the notes are up to date and correct. The age confusion seems common in France where people ofetn give their age by quoting their year of birth rather than their age. Your husband was probably born in "47" making him 63 now, but that difference could be significant in his treatment and needs to be right.
You have made so much progress, don't give up now!
I am so sorry to read of your on-going frustrations. As theothers have said, don't give up - you are doing all the right things, and you are well within your rights as a patient's relative.
When I was in Paris at a conference run by INCa in June, I flagged up some of the difficulties that have been expressed here, and gathered together the information below. There are stepped procedures for expressing concern, all of which you are entitled to follow. I think contacting your GP, as was suggested in an earlier reply is an excellent idea, especially if (s)he is supportive and understanding of your concerns.
As far as the secondary conditions are concerned, there may be help/information available on the Cancerinfo website run by INCa. I think I posted the link to this on the Links section of the Forum. There is also a 24h helpline : 0810 810 821
Steps to follow
1.Talk to the treating specialist or chef de service (you have been doing this)
2. If there is a relevant Maison des Usagers or other similar organisation at the hospital such as an ERI centre, contact them for help. (N.B There are English-speaking staff at the ERI centre in Angoulême and at Rouen, both of whom are very willing to help. ( I'll post the link on the Links page).
3. Petition the ‘Commission for patient relations’(CRUQPC) by writing a letter to the director of the hospital.
I have a number of links which may be useful, but I will have to post these on the links section. I'll open a new thread on making complaints.
If all else fails, we can contact our Patron on your behalf and see what help he might be able to offer.
If you would find it helpful to talk to us at the National CSF Office, you are welcome tot ring: 05 45 89 30 05 Remember there is always someone available on Tuesday mornings 10h00-12h30.
Hang in there Lottie!
With every good wish,
I have talked to someone from here on the telephone and she was fantastic and somehow has given me re newed strength to go on with this.
I am going to the hospital tomorrow with a friend, hubby will be in all day for chemo and I am going to seek out the leaflets and info.
Interestingly enough in the waiting rooms in the oncology dept there are no posters about the hospital or patients rights at all!
He is seeing a dermatologist about his skin today, he has had the problem in various degrees for 15months.It is clear from my research and contact with other neuroendocrine sufferers in america(noids) that this is a common problem with those who have developed carcinoid syndrome, it is caused by high chemical levels secreted by the tumors and circulates in the blood. In my husbands case he has a very high level of seratonin.
I have tried to explain this on several occasions but have been met with,
I think he has sunburn! its dermatitis! its an allergy. When it has been severe he has ended up in urgences with his face looking like the elephant man, cracked and bleeding.They give him potions and creams which incidently are not re emboursable.
Today I have sent him with a print out in french from Rouen hospital, detailing symptoms, causes, treatment etc. I have not gone myself as I hope this will diffuse the situation a little. If she wont read it we will then find out what the blood test is and get it done ourselves, if for no other reason than to rule it out.
Sorry to go on so but thanks again and I will let you know the outcome
bon courage to all x
Keep up the good work AND the courage of your convictions. I have posted lots of material on the LINKS section of the forum. Hope it gives you added power to your fight.
With every good wish,
after the chat we had with the oncos assistant about the high level of errors, husband came home wit his protocal de soin!
42 weeks was corrested to 42 days, but as the onco assitant pointed out the error was not grave!
far more worrying was the dosing sheet for chemo he was sent home with, the oncologist had filled in the diagnosis box as pancreatic. this now begs the questions
does my husband now have pancreatic cancer and have they forgotten to tell us
is it another error
i emailed him on my husbands behalf asking all the questions he didnt have time to answer as well as the latest bombshell. i have also asked him to make an appointment with a neuroendocrine specialist.
we sent it last wednesday and so far no reply!
so once again we wait and see
So ring the department today and ask. They will probably say they will ask the consultant and ring you back..ask when so you do not worry all day and let them know you will ring back if they have not answered by a set time (like 4.30). It may help if they know you will keep ringing until you get a result.
Worrying about things like that are not good for you or your husbands response to the chemo...by the way, I was rough too for about 10days after mine, especially the "fragile" days 7-10 after the start. The only thing you can do is rest so the hospital says, mentally and physically. Do not feel guilty at getting out of bed, shower and breakfast, then lay down on couch or bed for the rest of the morning! Thats the way it goes until after the treatment..once the treatment is finished is the time to enjoy life! good luck!
she had a letter from the oncologist saying that my husband had been to see him after the first chemo about his skin.
he told her that they are reducing the rest days to 35days, they didnt tell husband just gave him the appointment!
they are possiblby going to reduce to 28 days.
the chemo period has been increased to 6 treaments x 5days.
he put pancreas because one of the tumors is behind the pancreas altho the pancreas is clear.
he may go on to have 'ciblé' or he may have surgery.
its so bizarre, this letter was sent before the second chemo! but the oncologist said nothing.
my doc has advised us to wait till the end of the chemo and then to get a second opinion
we still have not received a reply to the email and the oncologist is too busy to speak to anyone, including our dentist who rang him for advice, was told he was too busy, dentist made an appointment to ring him the next day at 1400, he was again to busy, dentist rang next day and secretary said, get a blood test then oncologist will decide.
the dentist, who is a lovely man, said 'he is far too grand a man to speak to the likes of me'
As you have done, stay with and cultivate those who respond to you and your husband with understanding and empathy.