Hi Denis,
My wife and I actually live in Germany and not Wiltshire, but you've picked a nice part of the country to live. As for a support group, my wife and I are members of a group here. They keep up to date with all the advances in science and everyone who attends the monthly meeting gives a run down on their condition and treatment so far. There is always someone who has been through it before. They organise activities such as walking – we live on the edge of national park forest – not the Black Forest. This gives all exercise and a sense of support.
What it doesn't do is help with government admin, e.g, what financial support is available, who local contacts are if we need help, dealing with government bodies such as the German equivalent of DWP, NHS, DLA etc.
Hope that gives a few pointers on what could be useful.
Richard
Hi Marie,
Our background is similar to yours, we were married early 2008, we have a young daughter and I was diagnosed with full MM in February this year. Our lives were also complicated by a move to Germany, my wife had work and I was supposed to find some. I was diagnosed 2 months after we moved and on top of all the hassle of a complete life change. My job in the UK kept me very fit and healthy and we believe the strength in my muscles as well as the increased strength in my bone structure helped to prevent bone breakages despite having lesions in my shoulders back and hips.
Like you we went through a very emotional few months and now I am almost blase about it, I do have Chemo twice a week, the bone biopsy scares me and I am a little anxious about the Stemcell transplant but while we can we are trying to lead a normal life. We are doing this more for our daughter than for me really because I can't ever have a really normal life.
For you, you will get into the rythem of things, no one knows how long Chris's MM will smoulder for, it could be 10 years maybe or longer and then treatment will put him in remission for years after. Medical science has moved quickly in the last 10 years and is likely to do so in the next 10. The MM support group in Germany we joind has a couple of people who have been in remmision for 11 years. So if you do the sums, that's up to 21 years, that takes him close to projected retirement age. He may very well be around a lot longer. I've paid National Insurance for the maximum required for a full state pension and I'll be buggered if I don't get some of that cash back.
The really good news is that it has been detected at the smouldering stage, many are not diagnosed until after a lot of damage has been done. So, to be informed is to be prepared and now you can plan on how you work with the Myeloma before Chris moves out of the smouldering stage. Plan accordingley and please don't let Chris feel like he will be an invalid,or a burden, he can still do and will partake in a lot of things.
Hi Illona, nice if you to join us but unfortunately for very sad reasons. There are a few ex-forces people on here with MM so probably can relate to how your father has changed. As for treatment at least he is getting it. I'm afraid misdiagnoses by GP's seems to happen a lot. Why won't they do automatic blood tests and a 'wellbeing medical' for over 45's? Early diagnosis will be so much cheaper for the NHS.
Anyway, there are plenty here who have had the same experiences and emotions that you and your father will encounter. There are also some who are having treatment at Leicester so there will be help and support for you and your father. Don't believe all the horror stories that are thrown up by the internet, yes, it is a horrible illness but there are still those who are leading a fairly normal life after treatment. As you're probably aware, it is classed as incurable but for me that means quality of life is far more important than longevity and I think that's what you need to focus on for your father.
Hi Beverleys,
We've just had a few days in Paris, we didn't take out extra insurance for me because we knew we probably wouldn't get it and secondly, where we live in Germany we can get the TGV direct to Paris and be there in less than in aound 3 hours, therefore short of breaking anything we would be ok. What was ironic was that we were both concerned about my health – always packed hand gel, took face masks for use on the Metro (didn't bother with them)packed additional clothing each day – but it was my wife who had a stomach upset. My biggest problem was constant tiredness which made me very irritable sometimes. We will do it again.
Bandityoga, I'm afraid Ian has to motivate himself, if he's like me, being told to do things can get his back up. As part of the treatment for cancer here, the doctors offer counselling, is it worth looking at the same for Ian because it could help him with self motivation.
Hi Eve, lol I've got a six year old I can blame, trouble is she pipes before I do and tells the whole world it was me!
Hi there, we are the reverse of you, I am the father with MM and my daughter is 6, I am a bit older than your father though. I think about death and my daughter and how it will affect her when I'm gone, the thing is we don't know whhen that will be and I intend it to be a very long time from now.
As for how we deal with her and the illness, as Eve says, we try not to let the MM get in the way of a normal life for her. She knows I have to go for treatment and that I will go back into hospital but we tell her things on a strictly need to know basis. I am lucky, I still ride my bike, I don't have excessive pain at the moment and apart from being out of breath possibly caused by lung damage from the Pneumonia, I feel ok. Don't get me wrong, I do have bone lessions, reduced immunity and the chemo has knocked me about a bit but they are my problems, not my daughters.
I think it helps that she is so young, her world is so simple.
I find I only get hiccups after take Cylophosphomide, never had them with Dex despite being prescribed it since March. If you think Hiccups are bad I suffer from flatulance, anytime anyplace. I don't even know it's coming. The nurse tells me it is a side effect of the drugs but I don't know which one. I just have to stand still if I sense something happening and hope no one hears.
Employment in the UK whilst very well protected compared to other countries is still insecure. The rights of the employee are being erroded again and being on long term sick makes an employee a natural target, especially in a depressed economy. I have no doubt that if I still lived and worked in the UK my employers would have got rid of me very quickly. If I had stayed I would have only had a maximum of 4 weeks enhanced sick pay and then the remainder on SSP. My previous employer would have given me up to 6 months.
However, here in Germany, because I left my job to live here with my wife – she had found work here at a far higher renumeration than we could have hoped for in the UK – and I was diagnosed before I could find work here, I get nothing. Nothing from the UK in the way of jobseekers allowance or disability benefit and nothing from Germany because I have not contributed to the system.
As someone said previously, once you have this illness, expect all your savings to go because you will not work for a very long time, if ever.
Now back to employment in the UK. We have to remember that companies are not charities, the private sector is there to create wealth for the investors. The public sector is accountable to the tax payer and the government is doing everything to reduce costs at the moment. It is a very lucky employee from what ever position in the hierarchy to have an employer that keeps them on. Before anyone thanking their good fortune, they need to wait until everything is overand they are back in full tiome work.
'It's not over until the fat Lady sings'
It is perfectly normal to want your old life back but impossible. I would guess that they may have been some bad times or some boring things going on as well, do you want those back?
As for feeling guilty about wishing a better life, we all do that but as I've said before, the MM sufferers feel guilty as well because we feel as if we are destroying someone elses life and dreams.
So enough guilt, time to assess what you can change and how you can do it.
Good morning, glad you could join us, although not a very pleasent place to be. As for your father, take things one step at a time.
The mood swings and aggresiveness may be because he's been prescribed a steroid called Dexymethosone. They are known side effects as well as being hyper and not sleeping. You can usually tell who's taking Dexy because they are posting in the very early hours of the morning. It isn't nice stuff but very necessary.
The frailty, tiredness, anger, emotional rollercoaster and fear are all normal. I would say all of us here have suffered one or more of these symptons. I'm sure you've done your research and noted how MM damages the body's immunity system as well as bones and Kidneys.
Now as for you, you have your degree to concentrate on. Only he can fight the MM and part of that will be psychological – having a Positive Mental Attitude. He will probably be bolstered by seeing you go off and do something with your life and that will help him no end.
So, there are a lot of people on this site with little bits of info that add up to a lot experience with MM. There are a few stalwarts on the site who will offer very good advice when needed and some that won't hold their punches, so make the most of it.
It took at least two months before my liver behaved itself, the upshot is I cannot have PAD or Revlimid because of the concerns that they may cause more damage. The Celcade is working without the side effects. Hopefully things will get better now for you
Hi there,
The majority of us I would guess have spinal lesions, it's the severity of them that's the issue. How are you feeling, have they pick up any damaged vertabrae? Do you have severe back pain? If they are talking lesions only and no surgery then you are doing OK. Just be careful with what you do and lift.
There must be some link to fitness levels because there is a chap here in Germany in the support group who has just celebrated his 80th birthday. He also was diagnosed about 10 years ago but doesn't take anything for MM, he has not had Chemo. What he does is keep himself fit and active and that he believes is what helps.
Hi husbandof and Maureen,
There is a lot of guilt about because your partners probably feel guilty that they are ill and they are affecting your lives as well. Guilt is a pointless emotion, it smoulders and stops you being who you are. Whilst things will never return to how they were you should try and be as you were for that possibly helps the sufferer by seeing that they are not a burden to you. After all, we all want to see our partners being happy and alive.
Well here's hoping, if not for us because of the time it takes to complete research, produce a drug, have it tested then accepted but for the future generations who will have it.
