Well, you're certainly way ahead of me when it comes to treatment but already you seem to be doing pretty well if you've got this far without any major ailments. I think, like me, you're getting pretty fed up with hospital visits, I am 49, diagnosed at the end of Feb and have already spent a total of 4 weeks in hospital. If diagnosed in Sept 09 then you've already had 3 1/2 years. Dread to think how many hospital visits that has entailed.
My wife keeps telling me that as time goes on so does research and development. Who knows what's round the corner.
Well, there's not a lot for me to add except welcome to a very exclusive club, membership criteria is high, if I remember rightly there's only about 4000 new members a year to the Myeloma Club in the UK and not all are on this website.
Think I'll begin the overseas branch.
Anyway, if nothing else, it is good to talk and there is a sense of support from the site. Get ready for a rough ride – maybe not as good as Alton Towers though but with equally as many scary moments.
Richard
Ignore my last post concerning being ok for Chemo. Had a bloodtest on 8 April prior to the chemo starting and was told my enzyme levels in the liver were way to high – 20 x higher than normal. So, back into hospital straight away where I stayed until yesterday.
The enzyme levels are still too high and they are now concerned about the MM. They will not restart chemo until they know what's happening with the liver. I was given a liver biopsy, not half as painful as taking a bone sample but still dodgy. Need to go in again for results next week. Their thinking is the liver problem is caused by the 1st chemo or by the Famvir. As for Mannheim, the put me in a special unit called the Patientenhaus in the hospital grounds. If there are any clinicians reading take note:
This is a fantastic concept. It is effectively a hotel on site with its own treatment rooms and nursing staff. It is there for those who need minimal care but cannot go home. Talk about a cost efficient way of treating people, my estimate it would manage up to 120 people without the need to go on a ward. The number of nursing staff was no more than 6 nurses during the day, the doctors came to the Patientenhaus or you went to the required department.
See this link:
http://translate.google.de/translate?hl=en&sl=de&u=http://www.umm.de/2537.0.html&prev=/search%3Fq%3Dpatientenhaus%2Bmannheim%26client%3Dfirefox-a%26hs%3Dx0V%26rls%3Dorg.mozilla:en-GB:official&sa=X&ei=G2dyUamuJMjWtAag3oD4Dw&ved=0CDcQ7gEwAA. Press google translate.
If only there were more places like this.
Chemo cancelled again, this time because of liver. My Aspartate Aminotransferase (AST) level apparently should 0-50 and is at nearly 300, my Alanin Aminotransferase was 20, now its 400. The Onkologist thinks it's caused by the red drug in the Chemo, he's done a ultra scan of the liver and that is ok.
Back on Thursday for another check. I don't want it delayed too long because i'm already at 30 days plus since the last Chemo.
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
So far, here every one has been really good, If an error is made they admit it, usually it's me that makes the error. Couple of weeks back in hospital I was asked by one of the nurses to provide a urine sample over 24 hours, unfortunately I asked for him to speak only German so I could learn, by the time I worked out when the sample was to start, I'd forgotten the rest. Hence next day they were a bit shocked when I hadn't produced anything.
Hope you have a lovely weekend.
Cheers Megan, here weekends are treated as sacrosanct. Shops close on Sundays, over Easter everything was closed on Friday, Sunday and Monday. It was great, proper quality time with the family, no chasing your tail in ever decreasing circles, proper time doing what we wanted, not what we had to. Right, rant over, orange box away… We at least got the blood test out of the way and everything is ready for Monday. I have a really good Nurse who speaks fluent English with a Scouse accent. I can have a proper weekend with my wife and daughter (see above rant)and not worry about a thing till next week.
Hope your weekend goes well too.
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.
Hi there, I'm new to this also but reading through the posts prior to signing up, I would say we are in good company. I get a bit emotional with some posts but overall it is uplifting and good to know you are not alone.
I don't know if you know your history but during WW2, young RAF pilots that were severely burnt went to a specialist pioneer called Archibald McIndoe in Redhill. He pioneered plastic surgery. Now, because there were so few of these guys and it was all experimental, they called themselves the Guinea Pig Club. I'm beginning to think that we have joined an equally exclusive and fascinating club as theirs.
Question is, what do we call ourselves?
I think now, its not so much seeing my family in a new light but taken them less for granted. Both my wife and I are probably more caring to each other, I think we became a little too complacent about our marriage because we were doing the normal marital thing including the odd argument. Now we both want the other to enjoy what we have together. As for our daughter we want her to have fond memories of the present time and not remember so much the hospital trips, the medication, me being ill. We love her no more than before but we are focused on giving her as normal a life as possible for as long as possible. My doctor told my wife that from now on it's about quality of life not longevity.
I assume your given Dexamethason in between Chemo's. I was warned that a normal side effect is nervousness, fortunately my dose is quite low so I haven't suffered too badly from it.
Hi there, I'm afraid I have just startedas well, albeit a few weeks sooner than you. I also have a young family, a daughter of 6 so I would assume your thought process will be same as mine, how to look after the children, what to tell the younger ones, the future for them etc.
As for the treatment, I am also on PAD and had my first chemo early Feb, second session is due to start end of this week. My wife is very strong and determined, brilliant at research and very logical which is really good for the family. With regard to what you can do, the doctors here told me to lead as normal a life as possible between Chemo sessions, just avoid crowds and be wary of the illnesses brought home from schools /nursery. Being in Germany certainly helps, I hadn't actually started working before the diagnosis but still have plenty of things to do admin wise and learning the language so I focus on that. There is a local Myloma support group that meets in the town here, is there one near you? I also am anxious to keep some level of fitness to help with the Chemo.
With that, my wife has been like some PTI's I had in the RAF many years ago, this Easter we did 3km walk on Good Friday, 6km in the forest on Sunday and 10km yesterday.
We have had a lot of crying and anxiety between us but we are in a good phase now, I think it helps that I am stubborn about things and won't let it beat me. My biggest motivation is I want to have those Father – Daughter discussions in later life such as 'You're not going out like that' and 'What have you brought home this time?'
Anyway, there are plenty of people out there who will support you and of course your family, as I've said before, my mantra is 'Pick yourself up, dust yourself down and move on' I think that's what we have to do when we get a little down.
Well, being one of those just stating on this journey, it's nice to know that there is success, albeit maybe partial at the end. Happy Birthday to them, I'm sure you'll make the most of things.
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.
