Myélome multiple. Bone marrow cancer

[Ann]

Hello to you all
I don’t often participate in general discussions as sometime they get a little “hairy” - lol
However I do find many topics and discussions very interesting…
it’s great to see and read different opinions on different subjects.
For the very first time i wish to share my experiences here in France for my illness named myélome multiple. It’s in layman’s term … bone marrow cancer
The symptoms came very slowly, weight loss ( come on Iol i am a a woman lol. This was great ! Lol )
Then pains in my ribs… slowly pains in my sternum whereby it was a battle to do zips, buttons on trousers and omg to put on a bra a😊
I waited until the busy period of my work calmed down. Mipim market, miptv market, Film festival, lions festival, in Cannes , very important time in my job, eventually I visited my Gp, he actually knew that the symptoms were serious, he prescribed blood test, irm test, syntiographie test, more irm tests, 4 doctors questioned me about a car accident whereby I had had an airbag shock… as every bone I. Ribs, sternum and at the bottom of my spine were fractured…

I had never been in an accident in my life !!

My gp sent me to an oncologist in hôpital bonnet Frejus… doctor Guetneve ( bad spelling ) lol.

I had a file 10 cm thick with x rays, blood tests etc… he looked at ONE x Ray and immediately said Mme you have an illnesss myélome multiple. !! Okcome on how many of you have heard of that !l so… I asked is this a cancer, yes he replied le moelle osseux… so please doctor let’s say cancer not your term myélome quelques choses lol lol …

That was on a Monday. He left the room for 10 minutes-came back with a lovely smile and said hey it’s good you can start the chemotherapy on Monday next he was a happy man lol lol …

This was on the 22 August … I had chemo injections until November in 2016. Then I had chemo tablet until March whereby I had an autogreffe in March 2017. There I had big big chemo to kill all cells good and bad… painful. Hair loss. Pains all over the body … The autogreffe unfortunately did not work and the cancer cells went up… 4. Weeks in à stérilised bedroom in Nice. Terrible terrible side effects wow anything in to tummy just passed through…

Following this I had a tablet treatment and fortunately this worked… it lasted for around 4 months until my “pic” came down… I am now on a chemo tablet revlimed for the rest of my life! This week for the first time I am on remission, there are no cancer cells in my bones.

Now this is important for all who read this post to the end

I had no medical bills to pay, the security sociale paid 70% of my wage , my mutuelle paid the 30% of my wage. I had holiday rights during sick leave. I touched my 13th month during my illness. I was fully covered in every aspect during my illness.

The chemo has very badly effected my fingers and I have no nerves only pain severe pain in the fingers and toes…

I have contacted my mutuelle concerning une aide à domicile, my mutuelle can give me lol lol lol 20 hours … for the rest of my life lol lol ( not actually complaining they paid a years wages at 30%) however I am on my husbands mutuelle too…they wil pay an aide a domicile 2 hours every fortnight… as long as I send my prescriptions for the chemo regularly…

Both mutuelle s suggested that I can also contact my assurance habitation i am apparently I also covered for an aide de ménage on that policy also !

I finished work in the 11 November 2016 and returned to work on the 12 November 2017. At 50% therefore my company paid 50% and the sécurité sociale paid me 50%. In French temps therapeutic, after 6 months the sécurité sociale passed me onto the Mdph and now I am working 70% and the 30% is paid by the security sociale, it in another regime.

I have the rights to disabled parking, which I have refused to take as part of the treatment is to walk and exercise, far be it from me to take a place of someone more needy. …

The points that I wish to make are the following;

Pains, weakness, unexplained weight loss… see the doctor
Rights… learn and k ow your right, I was so naieve… so innocent
Be strong and do t let any illness overtake your life
Cancer is as much in the mind as in body
Positivity is the most important factor when fighting cancer
My illness is ongoing never cured, however I live very day as I did before I got Ill. No… alll that shit ooohhhh let’s go on a cruise, let’s go to these glorious places… no home, my children, my grandchildren, family friends and love

Let’s be grateful that we who live in France have a welfare, and medical situation second to none… we are so lucky to be able to have first class treatment and first class care following the illness whether large or small…
let’s be thankful and live our lives to the maximum and let France keep this marvelous system for alll of its habitants

Thank you France

Thank you to those who read this post

Hugs Anne Marie xxxxxxxx

[Sandy_Hewlett]

Anne Marie … I was stunned to read your post and can’t imagine what you’ve gone through. But what shines through is your strength and fortitude in coping with this awful disease and your positive attitude in fighting and overcoming it. Thank you for sharing this, I’ve learned a lot, particularly about how the French health system and mutuelle would deal with this situation, and I never realised that home care might be available. I’ve certainly taken on board everything you say and filed it away for the ‘what if’ that might happen. You’re one heck of a courageous lady, hugs and best wishes to you x

[letstryagain]

An attitude that I admire Anne Marie. I hope you are comfortable and thank you for your history. Attitude is everything. I for one fully appreciate the excellent healthcare and social assistance that we are lucky to have here in France (yes, I realise there will inevitably be exceptions) although I have been fortunate enough not to have to call on it for anything serious. However, your history and those of friends are always greatly reassuring. Let us hope that France, though not perfect, succeeds in maintaining its social structure.

[anon92567933]

Thank you for sharing this and I applaud your humour and attitude. I hope you are able to stay well for many many years to come.

My hubby is very ill and he qualifies for l’APA (l’allocation personnalisée d’autonomie) as he is over 60. I attach a link below. He has been assessed as level 2 which means he is eligible for 52 hours per month of help plus any medical equipment not reimbursed by the secu. As I am fit and healthy we prefer not to use the full 52 hours so just have an aide à domicile twice a week for cleaning, ironing etc. We could also have someone who does the shopping, makes meals etc etc.

We also have a nurse come every morning which has been prescribed by our MT and is fully reimbursed by the secu.

Our MT is superb and will usually visit within 24 hours if we need her.

I can only be grateful that we are living in France and that hubby’s care is exemplary. I dread to think of the situation we would be in if we were in the UK.

Allocation personnalisée d'autonomie (Apa)

[Peter_Goble]

Thank you for sharing your story, Anne-Marie, it’s a wake-up call for me. Why do I let precious time trickle through my fingers when there is so little of it left to me? Your testimony is amazing, and that’s an over-used word, isn’t it? But not in your case, Anne-Marie, you are truly exceptional in your positive attitude to your cancer, and your future. Bravo! Live well, love life, and show us how to do that through your example.

PS my wife and I love the French state’s approach to health promotion, which is now sadly missing in the UK.

[Ann]

Many thanks to you all for your lovely replies. I think that the lady Margaret inspired me when she lost her husband very quickly, her courage to be able to use this site so openly really inspired me. My heart goes out to this lovely courageuse woman.

It’s so much easier to say these things on line to “strangers” many people avoided me when I went back to work, or then the others who “sympathized” I did not need that, all I wanted was to go back and do my job lol lol.

All was made clear within weeks, I am fully open to share my illness symptoms as I want people to réalisé that this is one cancer if found in early stages can be put into remission quickly and painlessly, I unfortunately due to work left it too long and had the big chemo

It’s a pretty rare illness as far as I gathered, well in comparison to other cancers. However I just cannot say enough about my wonderful doctors, especially my GP who had an inkling straight away considering the symptoms.

Mandy I am so looking forward to having a lady or man why not hhhmmmm lol lol , come and iron for me, I have not ironed for over 2 years lol, the colder season is coming and I really do need help!
I am so sorry to hear that your husband is ill, however I am so pleased that you are getting help and that you use it. Nice also to hear that you only use it for what you need and don’t exaggerate… I think that’s very British hihihihi😊

Peter, yes I agree we let life trickle through our fingers that’s what we do, I still do it now lol, I forget for weeks that I have been ill then I crash… and remember that I have to make the most… every single year since I have been in France I go to my brother in Sweden or my sister in the UK, this year no…I took my holidays here at home ( I live in the south) and went to the beach, swam in the sea, took the grandchildren. I had a whale of a time made a big difference.

My hubby is a chef, so no time off for holidays in the summertime however on his days off, we went to the beach together and loved it we also bought a pool …
A hors sol. We have used it to the maximum believe me lol lol. Yes make the most of your family and friends, just have fun.

Damien and Sandy… it’s great to know that you are aware of the possibilities, and I say to all, I am not an expert in the rights as I have never had to use them, but if you need advise, don’t hesitate, it’s all for our own good.

Thank you again so much for the lovely replies, it’s just nice to be able to be open, it’s hard to talk to close family as they worry if I say too much lol lol , therefore just writing down the feelings and the information… well it just cleared my head a little lol lol

Hugs to all

[cat]

Your post has just made me cry and I have told James to read it now. You are such an amazing and positive person. And how brilliantly practical your advice is too. Thank you for posting on behalf of EVERYONE who reads SF and might not post; your advice is priceless.
I am raising a glass to you now and sending you a virtual bottle of champagne. You more than deserve it.
Big hug xxx

[John_Scully]

You’re very brave Anne Marie, I wish all the best.

[Ann]

Oh dear I did not want tears lol lol. So if my words make YOU cry, understand why it’s nice to have this website…saves making the close ones cry lol lol… thank you for the champagne by the way. all gone now lol…
keep up being there and thanks once again to Margaret who has been so brave and open with her feelings.
Very inspiring woman
Thank you for your heart warming reply x

[Ann]

Thanks john lovely to have a reply positive x

[Dewi_L_Morgan]

Well done on putting a fight against this terrible illness. I wish you well for your future

[Ann]

Thanks Dewi, you are very kind xx

[barbara_deane1]

Yes me too I am happy for you.
You have found a way to win and carry on with your life.
I got a second chance too !
I agree that we do not need flashy cars and clothes just spending time in this wonderful
country with the people we love.

[Ann]

Barbara
Lovely to know that I am not alone in thinking flashy cars, holidays and cruises are not important haha, family , then if I ever get fed up of them haha…cruise lol
Great to know that you too have a second chance make the most, we are very lucky

I watched a film the othe night with Ms Streisand, and I noticed that they spelt her name Barbra, I was a little confused… I then did a crossword puzzle. The answer was Barbra, clue a star is born actress, but… it’s the strange way her name is spelt? Am I wrong? Lol lol
Hugs

[Peter_Goble]

Barbra is a bit unusual. I had a run-in with the Registrar for Births in the early 1960s when we decided to give our daughter Sophie a hippy middle name, Elinor. He refused to accept that spelling, saying it must be Eleanor. We insisted, and he had to climb down. You are as brite as a buton as yoozhul, Ann! A reel tonnnick to an ole git lyke mi.

[Rosie_Savage]

Dear Anne Marie - I read your article with a large lump in my throat. Your courage is incredible, but it has brought home to me how lucky we all are to live in France. I too had a nasty fright in April this year, as I was diagnosed with Cardiomyopathy - the only symptoms I had was the aftermath of the horrible flu bug left me short of breath - this apparently was the indication that all was not well. Fortunately for me my local medicin sent me quickly for Chest Xray - all clear, then to a cardiologist as an emergency where the problem was diagnosed, followed by an angiogram and two stents fitted into my heart. There was still a blockage, but hopefully with the medication I take it will clear in time (hopefully !)
CPAM sent me a letter informing me that from now on all the treatment for my condition will be finance 100% by CPAM, even a taxi service if I need it to and from the hospital, which is one hour from where I live.
How is that for service ? Fantastic is the word I use
I know if I had been in the UK perhaps I would not be so lucky. I can only now send you dear Marie
a big Internet hug, and wish you every success and hope for your treatment. You really are an inspiration.

[Aquitaine]

My daughter Eleanor was born in Germany where her German godmother insists that she’s called Eleanore, here in France a friend says it’s Aliénor. She answers to Ellie.

[Ann]

Hi Rosie
Many thanks for your lovely reply, I am sorry to hear that you too have been poorly, what a fright that must have been, the not knowing!
Yes we are very lucky to be in France for the healthcare and attention, have you been in touch with your mutuelle for an aide à domicile? My young lady came today for the first time. She did my ironing as I have no nerves in my fingers and thumbs due to chemo.
You in your case only have to call your mutuelle and they provide this service …
Don’t be proud, I was for over 18 months!! However my kids insisted that I had rights, well… one phone call. 2 scans of papers to them and wow lucky me a young girl … lady lollol came to my home. Ooohhhh the sweetness of clothes ironed, I had not ironed for 2 years, going to work in creased class thes, not my style lol…
I really hope you improve health wise and be positive in outcomes, as mention in previous messages, the moral goes a long way to a cure
So lovely to hear from you! Keep in touch
Xxxxxxx

[Mary_Bonham_Carter]

I have just read your article on MM. You describe a very positive outlook which is good. We too have been down the same road. We live in the Vaucluse and have come across one other person with MM in our area. Tim my husband was diagnosed in 2012 when he was 71 so too old for a bone marrow transplant. And like you we so very grateful to the Health system in France. He gets such good care at our local hospital although his consultant is in Avignon. His treatment included radiotherapy and kyphoplasty to his vertebra, two of which had collapsed. And as you say the treatment will now be long term. I have found a site on facebook a support group for MM and this I found helpful for discussions and reassurance. Thank you for writing this article and pointing out the various things that the mutuelle covers, we had no idea it would cover an aide domicile or de menage (?cleaning I presume). We shall make more enquiries. Keep being positive and as you say enjoy each day to the full. would love to hear from you or anyone else who has come across this cancer. cheers Mary

[Ann]

HHi Mary

Where are you from in the UK? I think that there was a family of Bonham Carters in our school lol lol

So happy that my article helped you, that’s really great, I must be honest that throughout my illnesss when it was announced and during the hard part, I was very good I never ever looked it up on the net. I decided to just trust the doctors I really do hope that you contact your mutuelle as my aide à domicile came yesterday and did 2 solid hours ironing for me what a relief !! I was also informed by my mutuelle that the house insurance can also provide this service. Personally I ave not yet checked, I will let you know. Please let me know how you get on, I will be interested.

Is your hubby ok now? I hope that the terrible terrible pains have gone, because that is one painful illness when it really gets bad !!

I have a brother in Sweden, a sister in Australia and a sister in the England , my brother was actually on holiday here in France when I had my first ever appt with my oncologist, of course he was very very upset at the news, that was hard for me, as when I went to the oncologist I did not even know he was an oncologist!! My GP had just rang the hospital, made me an appointment and told me to go and see doctor Gutchnev !! So obviously arriving there both my brother and I were a little shocked that this was a cancer unit lol lol.

So back to the internet, instead of phoning family and friends to tell about my illness I decided to send an e mail, it’s so hard to talk about this… I wrote I remember a beautiful e mail and ne of the things I wrote was the following :

“I know this is hard for you all and I also know that you will want the best for me… I want you all to know that I have not and will not look this illness up on the internet, you of course are going to. please do not come to me with facts and information that you have found on the internet. I will refuse to listen. I will also refuse to hear stories of people you know etc… who have the illnesss. This is my illness and I am going into a bubble to get well again. “

Sounds harsh? Maybe however when someone came and told me I was going to HAVE to have radiotherapy! I just replied been on the internet? And I did this to everyone, they soon stopped telling and asking. I wrote an update every single week on the treatments etc… which they tell me now they loved

We are an extremely close family even though far apart, my brother from Sweden came over every 4-6 weeks for 10-15 days which was a great help to my husband. My sister came from Australia for 2 weeks which was brilliant, my sister from the UK also came over … fantastic family and so very very kind to me . I have been extremely lucky in the love that surrounds me…even if they did go on internet

Ohhhhh this will make you all giggle I knew that I had to go into sterile isolation for 3-4 weeks, so I asked only my closest friends and family to buy me a pair of pyjamas or nightdresses, so that every day when I had showered and dressed I could think of friends and family and do you know they supplied and I did think of each one during my stay in isolation. A good tip for you all because it’s a lovely feeling having these nice thoughts when alone in room

Look it was one way also to get loads of beautiful pyjamas from all over the world and very cheap for me hahaha, I still wear them and obviously still think of the giver, this can sometimes give me a nudge to call , so that nice too…

Sorry for gabbling on

Hugs xxxxxx