[PerkymiteParticipant]

Hi Eve, better late than never as they say! Well done to both of you I will envy your trip to New Zealand, always on our agenda but never got there.

That is good news about Dia Tom, thanks

kindest regards – Vasbyte.

David

[PerkymiteParticipant]

Sorry Tina, just joking about the shorts and sandals etc… Although I will be using the Shirt my Daughter bought for me.

My wife and I talk generally about the funeral arrangements but she does not like to get into the nitty gritty which my Son/Daughter will handle.

However building my own coffin has opened up everybody?s minds to what is ahead not only for me but for them. My daughter recently said to me that it had made her and her husband stop and think about the future. It has also, and this is the important thing, been the source of a great deal of fun, laughter, banter and jokes in my family.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

My instructions to my wife Tina are:

I will be dressed in a very colourful silk shirt that my daughter bought me some years ago. I feel really comfortable in it.

I am vertically challenged, ok I am a short guy 5ft 7 1/2 inches, well now I am considered short but in my youth I was average height which was 5?7?, but there you go. I like short shorts, used to be tennis shorts, my wife insists I wear the latest fashion ¾ length trousers etc?.. I am going to be buried in my favourite cut off jeans and they are short!

Lastly I am wearing white socks with sandals, I want St Peter at the Pearly Gates to understand I am an English man and bl==dy proud of it. Ok my paternal granmother and paternal great granmother were Scot but I am sure he will forgive me!

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Hi Tom & Min, It is in bits in my workshop at the moment Tom but I am going to start final assembly soon. I am not in any rush because I feel great at the moment, I have my 3 month Myeloma appointment this Friday. My Son and Daughter are finalising the pictures we are going to put on the coffin, we have selected 6 at the moment and need two more.

No, I must have missed that programme when was it on? I would never take offence Min everything you say is always said with the very best of intentions.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Just what you need Andy, I had a great week in Menorca. Whereabouts are you in Greece?

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Dear Min that is totally incredible I am sure Peter would be so proud of you I know I am! Have a great time.

Kindest regards ?vasbyte

David

[PerkymiteParticipant]

I do not know whether I have my wires crossed here because I am way behind on the posts, I have been so busy lately. I had my one and only SCT in Nov/Dec 2010 and I have not had any maintenance drugs since then, just Loron for the Dee Old Bones. Probably not relevant but there you go!

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

I am on loron and have been since July 2009. I recently had a problem with one of my teeth and I was told that for an extraction I must stop taking loron for 1 month and could not start it for 2 months. As it happened the dentist managed to fill it in and all has been ok ever since.

Kinde regards – vasbyte

David

[PerkymiteParticipant]

Thanks Gill for letting us know about Stephen?s final moments.

I have said to my wife and family that I do not want to be drugged up to the eyeballs when my time comes, pain relief is one thing but total mental oblivion is quite another. Stephen clearly looked Death straight in the eye with two fingers raised, good on him.

I wish you all the very best in the world – vasbyte

Love

David
x

[PerkymiteParticipant]

Dear Gill, I am so so sorry for your loss. Your post brought tear to my eyes. Stephen will rest in a pain free peace.

My love and thoughts are with you

David

[PerkymiteParticipant]

Hi Andy, Sorry to hear that you cannot go down the Allo route. There is a train of thought that it is overrated anyway and the pure drug route gives more remission – I have not got a clue I leave all that up to the experts:-D .

Enjoy the Lakes Mo and I had a great walking holiday there many, many years ago. The weather was terrible but we still had a great time, just got wet outside as well as in ! 😎 .

Kindest regards – vasbyte

David

[PerkymiteParticipant]

You are not "ignorant" my friend.

I have a South African branch to my family and four years ago when I was originally diagnosed with Myeloma, and things looked real bleak, one of my Nieces sent me an Africans word to hang onto "Vasbyte". Its literal translation is grit your teeth. But she informed me that in South Africa it is used more to motivate you to tough it out and fight real hard whatever problem you are facing.

The word fits well with me I spent 15 years in the Parachute Brigade and it relays exactly the attitude of an Airborne Soldier. Every time the going gets tough I think of that word, mutter it under my breath and simply refuse to lie down and die!

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

My impression is that Myeloma is undetectable in the initial stages unless you are lucky enough to have a really switched on Doctor!

My MM was diagnosed after it ate the 4th vertebrae in my neck, however the Consultant, after studying my medical records, said that she thought I had had it for at two years. Two huge clues which were missed were; persistent urinary tract infections and having a DVT for no apparent reason. There were other smaller clues which would have helped to build the big picture but nobody was looking!

Myeloma UK were running a Doctor Awareness campaign in 2009 and I got 36 of the leaflets and personally address one to each Doctor in Taunton, Somerset, my home town. It may not help me but I am hopeful it might have helped others.

That campaign is starting again I think and I urge everybody to take part, not only with your GP but [u][b]every GP in your town[/b][/u]!

Kindest Regards ? Vasbyte

David

[PerkymiteParticipant]

Hi all, Thanks for all the support Guys and Gals, I will say it again "you are a bunch of diamonds".

Peter, I was told that they are two separate trains going down adjacent tracks and as such treatment should not overlap. The question of course is which one will hit the buffers first Having said that they are apparently just starting to use bisposphates to treat Prostate Cancer. Nuclear Body Scan next Tuesday.

I loved the letter from the Consultant to my Doctor. "He has High Grade prostate cancer" Nothing cheap or tatty for me then

Must dash I am off to Newquay for a boozy weekend with my skittle team leaving at 9:00 a.m. this morning. (Well, it wont be that boozy we are all over 65 now!, how does the song go Dai ~ "Those were the days my friend………………………..)

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Charlotte, Sorry to have missed your post earlier but I have been busy lately and have just come back from a nice week in Menorca with my Grand children.

Firstly I recommended that you do not go surfing the web for info and cures. All the information you want is on this excellent site. Have a look at the personal stories. Most Stats are way out of date so ignore them. Lastly, I am sorry to say there is not a magic bullet out there waiting to cure you, since I was diagnosed I have seen all sorts from Red Wine, Cucumber to Cumin recommended, and if it gives you some support why not, but when the Haematology team tell me to start taking it I will believe it.

I had a single plassee whatsit in my neck. It ate the 4th vertebrae and it was discovered when I broke my neck getting out of be one day !! I had a SCT etc..etc.. . but my pp level never disappeared as yours seems to have done, it remains around 2.8, the last check. My head is held up by internal scaffolding but you would never know it I have full movement and the scars are at the back of my neck. That was some 3 and half years ago.

I feel fit and I am very active. My wife and I decided to ?Go where we have never been? and I have just returned from an excellent trip to the Scilly Isle. Although 3000 ft mountains are not on my list – well done you 😎 .

My tip would be to keep positive, do not give up and just keep going no matter what. Put Myeloma into the back of your mind and get on with your life. I go for my next check up on the 29th.

Must dash off to Newquay with my Skittle Team for the weekend this week and I have got to sort things out.

Kindest regards ? vasbyte

David

p.s.. Welcome to the site 😉 😀

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