[dickbParticipant]

Hi Eve,

Good for you, rather than thinking putting decs up early is a little tacky, start thinking your enjoying an over exubrient German Christmas. Next week is the start of Advent so Advent decs go up first here, 0n Dec 6 is Christkind, the children get a present from Christkind (Santa to you and me). They get the bulk of the presents on Christmas Eve which officially the first day of Christmas. So not tacky, just continental.

[dickbParticipant]

Hi Luciano,

Know what you mean about the skiing, use to go for upto 4 weeks of the year but stopped long before I was diagnosed with MM, cost was the reason but I believed I would go again, now I know that won't happen. As for your diagnosis and the effect on your family, that is the same for everyone I'm afraid, after a while, clear thinking will come back and the emotions will be in check. I'm afraid based on experience, it is going to be up and down for you, the roller coaster everyone talks about but it is not the end of life, it just means your life will be different. So, keep using the forum and learn as much about MM and your own diagnosis, you and your wife will manage it I'm sure.

Richard

[dickbParticipant]

Eve, Steve,

Lets just say from a personal point of view, I never wanted to meet a Commando of any kind in a profesional manner, especially on a dark night.

I never could run fast enough, be scary enough or talk fast enough to stop them doing their job!

[dickbParticipant]

Hi Harmony,

The scared was how I felt just after diagnosis, I am not so scared now, just a little anxious sometimes. My wife thinks I am still stubborn, she says I cut my nose off to spite my face and as for living to a ripe old age, there are two reasons: First, I've paid into various pension schemes and that's my money so I want to enjoy it. Secondly, I haven't had those father daughter chats that go along the line of "your not not going out looking like that" and "what have your brought home this time". Our daughter's only 6 so I've got to keep going for a few years yet.

Richard

[dickbParticipant]

And a 'love to hate it relationship' with MM. Unlike Partners, you can rant and rave at us and we won't end up fighting with you, so I'm sure your friendship with the site will be long lasting and as fufilling as other friendships. Welcome onboard.

[dickbParticipant]

As Eve said, we all felt the same at first and a number of us have young children as well so you're not alone. It will take a while for it to sink in and you will learn to adapt. Hospital visits will become routine, fitting them in with the family will become the norm.

I am sure you will find your own way of dealing with it but it is not the end of the world and you have your children to motivate you into being positive about MM. This site is great for help and support so make the most of it.

[dickbParticipant]

Bumped for a reason – see rant in 'Off topic'

[dickbParticipant]

bumped

[dickbParticipant]

Hi there,

I have peripheral neuropathy in my feet, at best it's a warm sensation, at worst it's like walking on needles, especially bad at night with cold feet.

I suspect you are on Velcade as it is a known side effect. You will probably be on Dexymethasone and Cyclophosphomide as well. I don't use pain relief, I have the pain killers prescribed for the general bone pain and a pair of warm socks to wear in bed. Apparentley the key is to keep the feet warm and the circulation going. Hope that helps.

[dickbParticipant]

Hi Mavis,

To be fair, treatment in Germany seems to be as hit and miss as it is in the UK. We have heard some horror stories at the self help group about misdiagnosis, failure to act after a bone biopsy, patients being pressured into a particular course of treatment. We were just lucky to have two top MM institutions so close to us and a very good Onkologist in the town.

I do believe that you are kept in hospital over xmas if they start the stemcell tratment, they are very much into getting things done here, a real Teutonic trait I think. All this will be discussed with the hospital doctor in a couple of weeeks time so we wait and see.

[dickbParticipant]

Hi Angela,

Sorry to hear about Graham, hopefully they'll have some idea about what's causing it. Graham's blods being taken last Tuesday is over a week ago, a lot can happen in a week. That's the trouble with MM and chemo, the immunity system is just so compromised. My wife is dreading the next couple of months because I am more susceptible to infections. It was Pneumonia in February that put me in hospital last week, I believe if diagnosed just a couple of days later I wouldn't be here.

[dickbParticipant]

Well, had the BMB yesterday, hardly felt a thing, bearing in mind this is an onkologist with his own practice in a small town, he tells me he will do the stemcell harvest himself. After a relatively painless BMB I have every confidence in his ability.

This morning at 7:00am was the MRT. I was given a CD with the images so I can take a look in my own time, they don't mean a thing to me but I think I have spotted where the lesions are on the shoulders.

So in two weeks it's a visit to the hospital, followed by Zometa at my Onkologist and then hopefully a date for stemcell harvest.

[dickbParticipant]

Hi Ang and Megan Jane,

Thanks for your kind wishes for tomorrow. I must admit I'm not looking forward to it, not because of the outcome but because of the pain. When I had the first BMB they told me beforehand it was like going to the dentist, afterward my reply was "you must have crap dentists in Germany" Hey ho.

As for the pain in the feet, I don't get cramp Ang, just feels like I'm walking on pins. I get to sleep ok at night with thick socks and a bedcover but always wake up with the pain, trouble is I can't get back to sleep. My other problem is I tend to slide down the bed and being 6' 2" my feet then stick out the bottom and get cold. The Onkologist said he's not worried until I have pain up to both knees and my toes are red. Suppose it must be similar to having frost bite without black bits falling off.

Thanks for the info on the drugs Megan Jane, although I have mentioned to the medics the pain they haven't suggested prescribing any drugs. I'm ok with that as I believe I'm taking too many anyway and don't want anymore.

So, once I've got the BMB and MRT out the way, I'll let you know what the results are.

Richard

[dickbParticipant]

My wife and I were truly sorry to read your post and like Tom,there is nothing I can say that will help with your grief. Just remember the good times and keep her memory alive.

All the best for the future – whatever it brings.

Richard

[dickbParticipant]

So you have Myeloma, prostrate, eye problems, MM around the eyes, tumour around the base of the skull, I am sure an average person would have succumbed to all of these things by now. Remind me, were you planning to be buried in a Superman suit? Do you keep Kryptonite in the bedroom?

[Author]

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