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Mothas 11 years, 1 month ago.
Hi there, Found out 5 weeks ago that I had Multiple Myeloma. Just to be a bit different, I am English but am now living in Germany with my German wife and 6 year old daughter. We're not only learning a new system because we settled here in December/January this year, but are also learning a totally different form of medical care system, here it is insurance based. So, be interesting to do comparisons. On a lighter note, I had to spend 3 weeks in hospital because I actually contracted Pneumonia which had to be treated before they began the Chemo. This allowed me to improve my German, I know words such as blood test, pain, sleep/slept, lunch, drugs, etc. Not very good for socialising though.
Our concerns – our daughter, at 49, I am below the average age for this illness. Work, I resigned in the UK before knowing of the illness, I didn't find work here either, now I can't work. I was an HGV driver but will lose my licence because I cannot pass the 5 year medical.Stuck between a rock and a hard place. The future, just like everyone else I assume. Anyway, better go and see to my daughter. Any questions, just ask.
Hi Richard
Welcome but am sorry you had to be here.
What treatment regime are you or will you be going on?? I see you put its an Insurance that will be paying for your treatment? how will that work.
How/why did you lose your licence for HGV due to your Myeloma? how will you fail it for what reason.
Its going to be a rollercoaster of a ride for you more so than mine was due to the language barrier that you find yourself in at the moment.
Just to let you know I was diagnosed with MM in 2009 had CDT then onto a Stem Cell Transplant in Dec 09, am now drug free and still in remission,
Good Luck on your Road to Remission Richard
Tom Onwards and Upwards
Hi Dick,
So sorry to read about your recent diagnosis.I to only found out about 7 weeks ago.
Haven,t started chemo yet,have the joy of that next week.
You didn't,t say what chemo drugs you are on.
It must be very difficult ,for you living in a different country.
This site is marvellous , and hopefully people can offer you lots of advice.
It's hard putting on a brave face,but with love and support from your family
It will help through the dark times
Take care
Jane :-S
HI Dick,
So sorry to hear about your diagnosis. Im sure it hasnt sunk in yet, if it ever does!! My mum is also 49 and was diagnosed september 2012. She is currently on velcade and dex and is in the myelom x1 trial. She like you was very young to be diagnosed with MM but as i am quickly learning age means nothing to this disease!!
It must be quite daunting going through this treatment in a foreign country, but im sure your wife will be a great support and im sure you will pick up the language quickly living there. Ive lived abroad myself and found hearing it everyday definately makes it easier to learn.
What treatment are you on?
Theres plenty of info on here and a very helpful extended family so whenever you need anything there is bound to be somebody here who can point you in the right direction.
Take care dick and dont hesitate to get in touch.
Lots of love
Nerys xxx
Thank you for your kind replies, I'm afraid it has sunk in simply because my daughter is so young and everything we do now will be towards giving her as much as we can in the way of love and memories for as long as we can.
Thank you Nerys for your kind thoughts, I was very touched when I read your Newby thread and the plight of your mother.
Being in Germany we are beginning to believe was a god send, I am agnostic though my wife is Protestant. We ended up in probably the best place to be for this illness, the Hospital in a university in Mannheim, 35 minutes away door to door. So far I have met 3 Professors as well as the normal doctors. All speak really good English. The town we live in has it's own Onkologist/ Heamoltologist. The doctors here are set up as a practice, if they believe there is a gap in the market, they will fill it. This guy will do the 2nd and 3rd Chemo. He's only 800 yards away from where we live. To top it all with his practice, he employs a nurse, she's German with an English mother from Liverpool. To here a perfect Scouse accent from a German nurse certainly took me back, I'm originally from Leicstershire by the way but have lived in Northants for the last 6 years. The town itself is the meeting place for the areas MM support group. First meeting for us will be the first Tuesday after Easter.
As for the Chemo, here they call it PAD,having Dexamethanon in between sessions as well. I'm still getting to grips with the terminology. The Doctor here has put me on a 31 day cycle followed by Stemcell implant. On the International classification of the disease progression I am at level 2. They were really concerned with the Pneumonia but despite that not being fully cleared they began the Chemo.
Now for your question Tom, the insurance system is like insuring a car, you have basic cover that you can add onto depending on what you feel you may need. If you work, you are insured through your employer. My wife is very switched on so she went for top whack, It's over 400 Euro's a month but that covers the whole family, my wife has a thyroid condition, our daughter is pointing her feet in so, it would still be cheaper to do it this way than cheaper insurance and paying the extra. We have to pay costs incurred up to 2% of household earnings, like paying an excess. Everything else is covered. They even cover for a temporary homehelp while I am too ill to do anything and 90% of taxi fares to and from hospital, I just get a chit from the doctor.
I will lose my HGV licence because the medical will require me to declare any major illnesses. On top of that I am not allow to drive anyway. The medical is taken every 5 years from the 45th birthday, mine is due in May so I will fail the medical. There is only a small window after it expires when you are allowed to renew. Don't think I'll make it. Now that leads onto something else, the Authorities in Germany believe that there is a proven link between MM and Diesel. There is an active chemical called Benzol they believe is the cause. Because of this, they will probably prevent me from working with HGV's again. Here, if you have a work related illness, the company has to pay your medical costs and compensation. Can't claim because I haven't actually started working here.
The language isn't too bad because English is the medics International language. The nurses speak varying degrees but I used that as an opportunity to try and learn German. We've been totally taken aback by the friendship and kindness shown by people here despite only being here for 3 months. It has made being here a lot easier feaseyjane. To be honest, I don't miss the UK, I looked at how long some of you waited for scans and the misdiagnosis that went on, again this is where the insurance system worked in our favour, the doctors run a business so every piece of kit has to pay. I was given a medical examination when I registered with our doctor including lots of blood for analysis, he spotted the drop in protein levels straight away. Within 30 minutes I was with the specialist and he had me in within a week. I had more blood test and a scan within 2 weeks. I went down with pneumonia and my doctor had me taken to hospital and onto the specialist ward the same day.
I have had at least
4 X Rays, 6 ultrasounds, 4 CT scans and an MR scan. all this with 2 weeks of being admitted. I know how caring the vast majority of NHS medical staff are but they are tied up by so much political interfering. The problem here is different, the medics run the show but their admin is very poor.
Anyway, don't want to bore you too much, Like I say as and when the 2nd chemo treatment begins again I'll give an update, unless of course you contact me.
It's been really good, thank you. I'm sure like you, we have shed so many tears over the last few weeks but as Tom says, Onwards and Upwards or my favourite mantra is:
Pick yourself up, dust yourself down, move on.
Hi Richard
Well am sure you will not be wanting to do Lorry driving through your treatment, and your Insurance sounds Top Notch
I also Like you saying "Pick yourself up, dust yourself down, move on."
Am sure that works well.
Good Luck to you Both in the road to remission.
Tom Onwards and upwards
Hi Richard and family,
This diagnosis is a real blow isn't it (understatement ha ha). And harder with a young family, I have heard from friends of friends that Germany is a forerunner in the investigation and treatment of myeloma, so you may find it was a good move.
My partner Colin was diagnosed in October 2011 and had an sct in November 2012. He has been positive throughout, as will you be…..you have lots to live for including your young daughter. Are their other jobs that you could do that do not involve driving? You could do with not worrying about work as well as the rest of what's involved,
Good luck with the treatment, and this site is a wealth of information and support 🙂
Stay strong and positive
Vicki and Colin x:-)
Ahh sounds as though you will be well cared for, i do wish you and your family well,this is such a helpful site and people are so kind, you mentioned diesel, would you know if traffic pollution and myeloma are linked ie living next to busy roads? just a thought there might be some research out there somewhere San.
Hi San, the Occupational health people here believe that the link between Benzol in Diesel and MM is indesputable, the say it can be absorbed 3 ways, ingestion, inhalation and through the skin. They also say that the active agent in Diesel is also apparent in fumes as well as in the Diesel itself.
We have found a copy of the outline report by the Authorities here, It's in German though but i can still send the link if you wish.
Thanks for your kind thoughts.
Thank you for the info dickB, please could you send me the link as i have german friends who could translate, hope that all is well with you today, my Mum is struggling but all is not lost and we are willing her to improve sadly she has myeloma in her neck area too which was'nt picked up intially and she is now having some seizures and we are not sure why but the hospital are investigating, i wondered whether it was the thalidomide, but at least she is being watched closely by staff, anyway good wishes to all and take care San.
Hi San,
Can't be nice for you or your mother. I am certain that if we'd stayed in the UK my MM wouldn't have been picked up until a lot later, like your mother. There is a difference in attitude here, it's about spotting things early so that costs are kept down later, the UK seems to be about saving cash upfront which then leads to excessive cost later.
The link is http://www.vdbw.de/fileadmin/01-Redaktion/02-Verband/Services/BArbBlBK1318.pdf.
Hope the link works and everything turns out ok with your mum.
Richard
Thank you Richard, sounds as though its the more sensible way around in Germany and then there might be less bone damage which is such a painful part of the condition, well wish that it could be different for all myeloma sufferers, every person has their own story, take care and hope that your chemo is going well, San.
Hi, sorry to hear your bad news. I was interested to hear you mention diesel as I've been heavily exposed to the stuff for years. I was also a HGV driver until diognosis in jan last year, wish I knew then what I know now!
Welcome to the club mate, bad luck!
I'm having PAD too at UCLH leading to a stem cell transplant soon'ish.
I've nearly finished my third cycle so if you want any advice or insights drop me a message.
Tom
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