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Cancer Treatment in France


Grecian
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Things were very much as Norman described and delays are just the same on the other side of the channel at top London hospitals. It's sitting in the waiting room and seeing what cancer can do that's a very sobering thing and puts things into perspective. The waiting doesn't seem an issue then.

Hysterical no, emotions run all over theplace with the news and it becomes hard to focus. Just be careful with anger it can also upset those who you love the most and those are also going through it.

Just keep in touch, there are plenty routing for you, it was about the stage you are at when I was determined to finish the bathroom just in case, channeling the energy into that kept me sane whilst all the waiting and meetings took place.

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Again thank you all for your support, I really do appreciate it. I never thought I would be 'spilling my guts' on a public website whilst dealing with a very personal battle I have to take on, but I am finding the experience very uplifting, so thank you all very much indeed.

Norman, a big thanks to you, you have been absolutely brilliant in the way you have laid out what lies before me. We have moved on a stage this morning after receiving the paperwork for my CT and MRI scans, and this has knocked us back a little, trying to plough through what is required from us to organize ourselves. I received a phone this morning from the secretary of the specialist and they have arranged to bring forward the MRI scan to 5th Nov at Angers, at the place you have flagged up Norman. Whilst Angers is about 70 miles from us instead of the 25 miles it would have been for the original scans, we are going to take the appointment at Angers, she is ringing tomorrow with the CT scan appointment, again at Angers. It looks like the place to have treatment, if or when it comes to it, although it will be difficult for my wife, although she can drive, she surrendered her driving licence some 15 years ago, as she is unable to drive safely with her disabilities. If I understand the situation correctly, hospitals in France offer the facility of a room for her to stay overnight whilst I am in hospital, could anybody confirm that for me please.

Regarding all the things we need to organize ourselves, Norman you mentioned the need for a chest x-ray, ECG and arrange an appointment to see the anaesthetist, it will be no problem with the x-ray, as we have a unit close to us that we have used every since we lived in France, but how would I go about arranging an appointment for an ECG please, would that be at my local hospital, and would we need a letter from either our own doctor or the specialist? I presume we leave the anaesthetist until last obviously, as that will depend where I decide where to have my treatment if required. Another thing we our confused about regarding the paperwork we received this morning, it is asking us to bring a letter from the specialist indicating what the scan is for, we have not been given any such letter from him, and as I do not have another appointment with him, should I contact him asking for the letter. As I said we are seeing our own doctor next Tuesday so we will ask him if he gives us the letter or go back and see the specialist.

As I have stated it is our choice to live in France, and are happy to abide by their rules, but I can't say the system they operate under is a patch on the system used in the UK. Having to organize everything for ourselves whilst under considerable stress is not really what we want to be going through. Even down to having to have a prescription made-up and remember to take it with us, for the dye they will inject into me. Obviously in the UK once you are referred, everything is done for you. So we are finding it we hard battling both the illness and system at the same time. I will contact the cancer support group again if we really become stuck and can't cope.

Benjamin and Theire, thank you both for commenting on your own experiences, I guess Benjamin is going through what I am the moment, and Theire has come out the other side, so thank you both for your comments. And to everybody else just thank you for your kind words and support. We took Mint's advice last night and had a bit of a blast on the red wine, it brought out the tears in both of us for the first time, so I think it helped to move us on a little bit.

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Grecian: Don't wait until you really need them. CSF will do any telephoning and organising for you, that is their aim. They have seen it all before and can walk you through it. Our local group have been wonderful with several of our friends.  They are also good for just a shoulder to cry on. Do the group in your area not have open days at a centre each week with coffee etc.?

Good luck

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All operations in France seem daunting at first Grecian, the best thing to do is perhaps go and see your local GP and ask them to explain how everything works and who does what and when and in your case where. And if they are not sure ask where you can ask.

That list you posted, write it and take it with you.

Your GP after all will be involved in your follow up anyway.

I know that I turned up with our son for minor surgery once (one does not make that mistake a second time) and no one had told us about seeing the anaesthetist first. Everyone was helpful and sorted us out.

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how would I go about arranging an appointment for an ECG please, would

that be at my local hospital, and would we need a letter from either our

own doctor or the specialist?

This will probably be arranged when the appointment is made to go into hospital. I suggested that you scout around to know who to approach in advance, but you are not yet at  that point. It's just good to know who you will see. You can contact the cardiology department at your hospital if the town is too small to have its own heart specialist with a separate practice.

In my case I had a letter from the specialist once the appointment at the hospital was confirmed but you could also  your GP when you see about the 100% cover

 I presume we leave the anaesthetist until

last obviously, as that will depend where I decide where to have my

treatment if required. 

I
f you can get into the Angers centre I would recommend it. I was treated in the equivalent centre in Montpellier

 Another thing we our confused about regarding the

paperwork we received this morning, it is asking us to bring a letter

from the specialist indicating what the scan is for, we have not been

given any such letter from him, and as I do not have another appointment

with him, should I contact him asking for the letter. As I said we are

seeing our own doctor next Tuesday so we will ask him if he gives us the

letter or go back and see the specialist.

I am a bit surprised that you weren't given this by the specialist's secretary since he knows best what he requires

I would phone the secretary and ask, although your own GP should by now have a letter from the specialist outlining progress, so he could also give you the letter. He should at the same time have given you the prescription for the product that will be injected during the scan. If you have that is it possible that there is also a prescription for the scan lurking with it? It might just say something like MRI abdo pelvienne, which is enough to tell them what is needed.

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Thanks again Norman. I have been investigating the centre at Angers, where I am now going to have my scans, and I am very impressed with the whole set-up. You mentioned in a reply that I could switch specialists if I wanted to, if I stay with the specialist I am seeing at the moment, until all scans have been done, and all information collated, would I then be at liberty to demand that I wish my treatment, if necessary, to be performed at the centre at Angers, or would I have to switch to Angers now?

Also if I have all my treatment at Angers does anybody know if I would be able to use the ambulance taxis, for transport to and from Angers which is about 70 miles from us if I were to be having chemo? As I assume I would not be able to drive after a chemo session, unfortunately my wife would not be able to drive me.

Do all hospitals have the option for my wife to stay at the hospital overnight or several nights, whilst I am in hospital?

Grecian

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1)The transport issue is the reason why it is very important to get the ALD (100% cover) sorted out ASAP once the biopsy result is known.

If you are treated at Angers you can have the transport covered. (You ask for a bon de transport from the Doctor and a bulletin de situation from the recption at each visit and give it to the Taxi/Ambulance, also known as a VSL)

I had 40 return trips for radiotherapy, many hospital stays and many consultations with all transport costs met.

2) I would continue with the scans as planned and at the same time get an appointment at Angers then take the results there. ( you could say you would like a second opinion) That way you have both options open. Your present specialist can't insist on treating you, but there may be a question of whether the Angers centre has a place. That I can't advise on.

3)Most places I have been treated in offer the option of having an extra bed in the  room rather than a separate visitors' room.   This might have posed a problem in the chemotherapy ward, but nowadays most of that is done in day visits rather than in overnight stays.

4) Don't forget that hospitals have a medical social worker. Once you know which one you will be going to, contact the one at that establishment outlining your wife's problems as well as your own and asking for advice and help.

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Could anybody point me in the right direction as to where I might find any comparison league tables for the treatment of cancer in France please. I like the look of the centre at Angers, but would like to know what my options would be a ittle closer to home.

Many thanks

Grecian

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I strongly echo the advice to get in touch with CSF, support for people in your situation is what the exist for and they will know what options are available and exactly how things work in your area. They will also know all the people you are likely to encounter during your treatment.

They are also an informed but sympathetic shoulder to cry on.

My OH was the president of the local CSF group for 3 years and is still involved as a trainer so I know of what I speak.

Bonne chance and FWIW I'm off for a colonoscopy next week although from the battery of tests I had before my hyperthyroidism was diagnosed, and since, the one thing I'm pretty sure of is that whatever's going on in my insides isn't the big C

And BTW any of you macho blokes reading this who isn't doing the poo tests they send you - WAKE UP !

It takes a minute and can save your life.

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Hello Grecian

As a member of the 'C' club, I can tell you the following (in no particular order):

* Cancer Support France is worth contacting.  The advisors can talk you through so many of the issues that you have raised in this thread.  If you are concerned about privacy, you can be put in touch with advisors from other parts of France.

* This part - the waiting, the not-knowing - is truly one of the worst times.

* The health care in France is really good.  True, you are responsible for booking your own appointments etc but the upside is that, from my experience, you have more control and more information than in the UK (I had treatment on both sides of the Channel).

* It is a bit daunting being English in a French hospital.  But so many of the doctors and nurses speak English.  If you have weak French and are on a ward, they generally try to allocate you a nurse who can speak English.  When I have been in hospital, I have been grateful that I am English and not a speaker of a minority language.

* Research medical vocabulary before each meeting.  Norman H has produced a list of useful words for general use.  You will need some more specific ones for your own condition.  Reverso Medical has specialised vocabulary.  http://dictionnaire.reverso.net/medical-francais-anglais/  Make yourself a list of words that you can keep with you in a special notebook.

* Consider recording the important meetings.  I bought a hand held dictaphone and asked the oncologists and the anaesthetists for permission to record what was said and placed it on the desk between us.  I then played it back when I got home and took notes.  Only one anaesthetist was cagey about doing it but when I pleaded, he capitulated.  All the others had no problems.  My main oncologist took the dictaphone with him as he proceeded to walk around different parts of the room so as to ensure that everything was recorded.

* It was amazing how much of the consultations that I would have forgotten or missed the point of, if I had not had my dictaphone.  This is despite my husband being in the meeting with me.  I think that you tend to be a little shell shocked in the meetings and so recording it really helps.

* If you do not understand something, do NOT politely pretend to understand.  Make sure that you say that you do not understand and get them to repete it.  In my experience, none of them ever mind and in fact, it gets the medical staff to slow down when speaking to you.

* If admitted to hospital, have a pen and notebook by your bedside and ask them to write down anything that you do not understand.  You can also write down questions that you might want to ask before they come in to see you.

* In France, the surgeon comes to see you on his/her own, or with just the nurse, which is not so intimidating.  They generally give you a lot if bedside time.  [In the UK, it is often a whole team of staff that do the ward round and this can be more unsettling.]

* Always greet every single medical person with a 'bonjour' or a 'bonjour. j'ai besoin d'aide' or 'bonjour, desole de vous deranger' before launching into questions.  Greeting is a very French thing and it works a treat.

* Cancer does not have to be a death sentence.  It is something that you can learn to live with.

I am sure that there are other things that I ought to say but it's the early hours now.  I shall post again if I think of anything else in the next few days.  Please continue to let us know how you are getting on.

Bon courage, Grecian.

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A belated thanks for the info supplied Norman, and Kitty your post has helped a great deal. Got to admit feeling very low at the moment, I am thinking this to be the lowest point, unless given some really bad news after all the scans, as you said Kitty the waiting and not knowing. Both myself and my wife feel very isolated, we are not great mixers and have no English friends, our French neighbours are all very nice, and I am trying to find the right time to tell them, I am sure that they will rally round. For us at the moment having to organize everything ourselves, which in the UK would be done for you is very daunting, trying to make sure we have all the prescriptions made up, and blood test done, but at the moment we have not received the paperwork for all this from the specialist I am seeing, if it does not arrive tomorrow will have to go into his office and try and sort things out. I am in contact with CSF who have been very helpful to date, and are making 3 telephone calls for me tomorrow.

Having thrown a bit of a wobbly with the specialist regarding the length of time I was expected to wait for my CT and MRI, we have had them all brought forward to 4th, 5th and 12 November now, but all three scans in different places, the CT at our local hospital at Bressuire, which is only about 9 miles away, the MRI at Angers which is about 70 miles away and a echo sigmoidoscopy at Thours, which is about 26 miles away. Whilst it is beneficial to have earlier dates the logistics of the MRI at Angers is a problem, without putting too fine a point on it, I have operations to carry out 3 hours and 1 hour before the MRI which are causing a problem. Hopefully I will have my ALD and transport paperwork sorted out in time, and if I am able to use a taxi to take us to Angers it would be a big help.

I think the biggest problem we have after all the scans have been completed, is not knowing what happens afterwards. I have re-read all this thread again.

If I have this correct after reading what Norman has kindly posted, after all my scans and sigmoidoscopy have been completed, take everything back to the specialist who has been treating me to date.

Is that correct?

 He will decided as to how to proceed, I also have the option of seeing another specialist, which my choice would be somebody from the centre at Angers, so if this is the case, I must make an appointment to see that specialist myself?

After the consultations with either one or both specialists, what happens then?

Does the specialist then make the referral to see an oncologist?

Will the specialist send all my scans, sigmoidoscopy results and biopsy result to said oncologist, or do I have to organize this? (I sincerely hope not)

Does the specialist decide as to which hospital I am sent to or do I get a say in the matter? If I am seeing the specialist at Angers then I guess all the process will be integrated.

I know that my local hospital at Bressuire can carry out the operation that I may require, and would be more convenient for my wife, but as the centre at Angers is a specialized unit, and has the 2nd highest survival rate in France, although a lost more hassle regarding the distance to travel, this would be my preferred option.

Sorry for such another post, but if I can get the process sorted out in my head, I think it will help to calm me down a little.

Grecian

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Can't help with what France does but in the UK once the results are back the specialist assembles a team to look after your wellbeing from Oncologist to aftercare.

Personally although more awkward for your wife I woud go for the specialist unit. My local UK hospital could have carried out my surgery and the surgeon an older lady is very well respected by all of her colleagues but they couldn't offer keyhole which I wanted so transfered to St Thomas's and the surgeon a specialist in keyhole surgery was trained by the lady at my local hospital and was incredible. I was up and around eating breakfast the morning following the operation it was so well carried out so centers of excellence if available should be utilised.

I can well cast my mind back to how I felt at the time and understand what you are going through so don't appologise, there were days where my head would just spin and I couldn't focus.  keep posting if it helps.   

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Once you have all

the scans and the results of the biopsy you will have them in paper

form with probably a CD of the scans.

You take these to

see your specialist who may well have a copy if he asked for them to

be done, but they belong to you and you should keep them secure.

You can then discuss

any treatment such as an operation and if so which sort and by whom.

At the same time you

can go to see your GP and ask for a letter for an appointment at the

clinic at Angers, saying you would like a second opinion

(Note: I cheat and

phone for an appointment, saying that I have a letter, knowing that I

will get one later. This lets me have an earlier appointment so I am

ready to go as soon as the results are though)

Then once you have

seen these two specialists you have the choice of what they have

suggested.

If it is at Angers

you will probably find that all is taken in hand by the centre.

If it is your local

specialist he will suggest either himself or another person he

recommends and that may be at a Hospital or clinic where they

practise habitually.

Depending on the

results of your tests you may need to see a surgeon, oncologist (if

they think chemotherapy is needed) or radiologist.

In the clinic I

attend there is a team of all these who work together. Nobody can say

as yet who and what will be needed.

In my case I had a

first minor operation to remove the cancer passing by 'voie

naturelle' I. E. up the bum, but the cancer came back 18 months

later and I had a major operation followed by chemotherapy, but each

case is different. Don't be mislead into thinking that you experience

will be the same as someone else's was.

There are a lot of

people with their experience who will believe that theirs is THE way

things will happen, especially on sites dedicated to illness where

the posters tend to be obsessed

As for the paperwork

you just take your folder with all the results to whichever person or

place you go to.

All my tests and

results for the last 7 years (I also had prostate cancer 2 years

before the rectal cancer) are now in the computer system of the

clinic and as all my follow up tests are done there they are all

together, but back at the beginning I had to take all that to my

first appointments.

Remember what I said

about a medical social worker. In your case with the worries you have

with your wife and visiting/staying when you are in Hospital I would

make contact with them

see here

http://www.ico-cancer.fr/les-soins/parcours-de-soins/les-soins-de-support/

soutien social

Site Paul Papin : secrétariat 02 41 35 27 00 poste 4825

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Thank you both for your replies.

Still a little woolly here Norman, if I stay with the specialist I have been seeing, who may well be a very good specialist are you saying he would also be the surgeon that would carry out any surgery necessary, or are you saying I will be passed on to a surgeon at a hospital? I was under the impression like the UK once all test results etc have been collated a team at which ever hospital I decide to use will discuss my situation, and offer me my options. Sorry to seem a little dense. I can see that if I used Angers things would all be taken in house so to speak, and would probably run a little smoother.

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are you saying he would also be the surgeon that would carry out any

surgery necessary, or are you saying I will be passed on to a surgeon at

a hospital?

I don't know as I don't know his expertise.

In my case for the prostate cancer I could have been operated on in a clinic by the local specialist who ordered the tests.

He does this often with very good results.

However for the rectal cancer the local man wouldn't have been able to do the particular operation I needed the second time.

This is something you need to discuss with your GP and perhaps CSF, but you can't yet because so far the results of the tests aren't in.

Sorry to keep saying this as obviously you want it all cleared up, but until they have done the biopsy and typed it and the scan to see how deep the tumour is in the tissue ( 'staged it'  to see size depth etc)  nobody can be precise about what you need doing.  It's not 'one size fits all'.

The first operation I had was relatively minor, but the second involved cutting out a chunk of rectum, closing it off for six months while it healed, during which time I had a temporary stoma bag, which was later taken away and the healed rectum put back into service.

This obviously requires a very skilled surgeon who has a lot of experience and he used a sort of robot arm.

Both the man and the machine were only available in the large centre, but that was a second attempt and so had to be more radical.

A friend recently had a similar operation but he didn't even need a stoma.

Horses for courses

If you have an operation the surgeon will send a sample of what he has taken away for further analysis and it is then that they can decide if chemotherapy follow up is necessary...

I had the Folfox chemo mentioned here, but as you can see the various options depend on the results of the tests:

http://www.colorectalcanceralliancecentralma.org/colon-cancer-treatment.html

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One point about transport for the tests.

Until you have had the tests and the results you haven't officially got cancer. (I hope you haven't), so you don't have the right to  the ALD and 100% cover by the Sécu.

On the other hand your Mutuelle may make up the difference so it is worth looking at the contract to see if transport is included. Many don't, but some do.  ( http://mutuelle.dispofi.fr/remboursements-mutuelle)

If the results come back positive it is then that your GP can set the wheels in motion to ask for the ALD

I mention this because I have a lodger who was sent all the way to Perpignan from here so that she could have an earlier scan and the taxi/ambulance (VSL) wasn't covered at 100% and she didn't have a Mutuelle.

I have a feeling that it may be possible to ask for retroactive reimbursement if you later get ALD status but I am not sure of this and can't lay my hand on the regulations.

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Thanks again Norman, sorry to seem like a complete coward here, but really finding it difficult trying to fathom out how things work in France, let alone getting to the stage of actually having any treatment, just want to get it clear in my mind how we progress..

Agreed it has not yet been officially confirmed, I would think the biopsy results will appear this week. Regarding the ALD situation the specialist said last week he will inform my own doctor to set it up, and as I have already said we have an appointment to see him tomorrow, so hopefully something will be sorted out.

I have looked at my mutuelle and I have 100% cover for transport, not sure if 100% will be the full reimbursement, but I really need to have transport organized for the appointment at Angers next week, as I do not want the stress of driving on top of everything else. Would you know if I can use the VSL and pay if necessary without any paperwork from the doctor.

Grecian

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You can book  the taxi firm (make sure it is approved 'conventionné' by the Sécu) and then get a form from the Doctor 'un bon de transport'. it has to be signed by the Doctor who wants the tests done. It can't be given by the technician who does the scan

If you have an appointment at a Hospital you also ask for a 'bulletin de situation' from the reception

The taxi firm will want all your details at some point.

Number of Carte Vitale/Sécu

Mutuelle

etc

On later visits  to the Hospital you ask the nurse to organise it, including getting the 'bon de transport'.

You are not at all a coward. You are in shock.This is not a weakness and no-one is making any judgements.

We all want  you to get better and I want to help as much a possible. At the same time I found it helpful to cut off and go into 'mechanical' mode, just concentrating on the practical issues. That was my way of coping but many people can't do that.

I'm afraid I am not very good at the 'touchy feely' things, but then I doubt that you would want to be touched or felt by me [:-))]

The practical side is very different here as it is tied in to the various people getting paid which is not something that comes to the fore in the UK.

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Grecian, NH has given you good advice.

But you know, I have already mentioned that I believe that you need to sit down with your GP because I reckon you need to actually sit down with someone and go over things. Tell them that you are anxious, (because you sound as if you are very anxious)....... and you do not know how the system works, so different from the UK. So you want to know the  A-Z of what happens when and where and by who.......and how you arrange it all, including transport........ and where you get the paperwork.

And as I said before, your GP will be involved when all the hospital visits are over anyway..........

 

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Thanks again Norman and Idun, yes you are right very anxious at the moment, and really feeling isolated. Hopefully our GP will burst into action tomorrow and give us some answers, to date nobody has told us anything.

CSF have sorted a few things for us today, but still a big logistical problem with the MRI at Angers having to perform an unpleasant task 3 hours and 1 hour before the MRI, I have been informed there is no special facility to carry this out, so will just have to try and cope the best I can. We went in to see the specialist's secretary this afternoon asking why we had not received any referral letters for the scans, she assured us the all the letters had been faxed to the relevant places. Had a blood test that was asked for, for both the CT and MRI, and had the prescriptions made up for everything I need to take for the scans. So have done my bit up to date, at least I am organized.

Quite or should I say very concerning was when the lady from CSF telephoned to cancel my appointments for my original CT and MRI at Fontenay Le Compte, she was informed that no record of my appointments were in their system, I can't even start to contemplate what I would have done, had I gone there to be told there was no appointment for me. The CSF lady is going to pursue the case tomorrow, as obviously if the appointments do exist, they need to be cancelled and offered to somebody else as soon as possible. She has confirmed my appointment has been booked at Angers, but is unable to confirm Bressuire, as nobody was answering the phone today.

You are right Norman, I think mechanical mode is called for now, but it is going to be a long wait until next Tuesday before something finally starts to happen.

I am sure you would be very good at the touchy feely bit Norman, and when this whole nightmare is over I look forward to a giant hug.[geek]

Grecian

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I am very relieved to see that you are swinging into action. Getting organised is one way of starting the cure and it shows that you are fighting back step by step. Much of the battle is mental even with treatments as technical as these.

My own explanation for the Fonteney situation is that the person who got you the new appointments also cancelled the old ones, but that is just a guess.

I have often been worried by apparent casualness only to find hidden efficiency of a different style. Don't forget the people doing this are doing it all the time.

That is one reason for poor communication. They know what they are doing but they don't bother to show it to the patient for whom it is a one-off situation.

Hold on to the fact that if it is a cancer it is a relatively slow-growing one, over years and months rather than weeks.

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