[PerkymiteParticipant]

Firstly Welcome (?) to our group and the forum, not a group you no doubt wished to join but here we all are.

I am 1 year post SCT now and I am leading a near normal life. I get tired sometimes in the afternoon, when I just sit down in my reclining chair and have a kip>:-) However, I am not really sure whether it is old age, I am 69, or Myeloma. I am in partial remission my PPs being 2.4 at the moment, 33 when this all started in July 2009. A phrase often used on this site is ?listen to your body? and I think you will find that good advice.

We had a really busy travelling year last year and we are planning a trip to Spain, to see my Brother in Law in Mar/Apr. A Myeloma diagnosis need not be the end of the road.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

My Dear Michelle, I wish I could give you a set of easy answers that would solve all your problems but, alas, I cannot.

I lost my 19 year old son in a car accident, he was on his own and he died almost instantly at the scene one bleak October night. If he had to die how I wished he could have lived just for an hour until my wife and I could have got there to be with him. Fortunately a few weeks before we had a row about his fast driving and subsequent heavy braking, I was changing the disc brakes on his car for the second time that year at the time. I say fortunately because one of the phrases I used was that the reason for my concern was because I loved him a great deal. It was a great comfort to me to know that he was aware of my love for him, something we all take very much for granted in close families.

Since I had my Myeloma diagnosis, Jul 09, I have ensured that my wife is aware of how much I love her and that I definitely do not want her to ?get off the bus of life at the next stop? when I do. We have not and do not intend to say goodbye we just cuddle and let the each other know how precious our time has been. I know it is hard for you, as it will be for my wife, but be strong ? Vasbyte.

My kindest regards.

David

[PerkymiteParticipant]

Hi Chris, I have been away at my Daughters for the Christmas period and have just found your posts. As I have said it was a pity we could not have met at the Beacon Centre this morning, however if you want to meet for a chat Mo and I will be more than happy.

Your feelings, emotions and perhaps anger at your situation are about par for the course I think.
As others have said there is, at the moment, no known cure but it is now treatable and since I have had the decease July 2009 I have spoken to people who are still surviving 15 years after diagnosis. The main contributor seems to be the person?s attitude and that has to be positive. It is a word you will start to hear a lot of from just about everybody.

I would not really spend too much time searching the web for the ?magic bullet? because if there was one it would be plastered all over this site. You will find people who will swear that they have been cured by all sorts of things from eating Cucumbers to taking Ginger etc etc? All the up-to-date information you will ever need is on this site, take a good look around it. Since I found it I have not bothered ?surfing?. Added to which if you have a problem you can always ring, for free, our resident buddy (MyelomaUK Myeloma Nurse) Helen who knows everything about Myeloma!

I look forward to perhaps meeting you.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

Hi Chris, unfortunately I did not read your post until I had returned from the Beacon Centre. If you want to meet and have a chat Mo and I would be more than happy.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Welcome (?) to the group Lynda. I suffer from Myeloma and my wife is the career however I just would like to wish you and Pete well, I am sure you will not only learn a great deal about Myeloma from this site but you will meet some really nice people.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Wendy, I have not corresponded on this discussion because it is way out of my league and knowledge.

The only information I had was that in Little Rock, Arkansas there is a hospital that specializes in this type treatment. Apparently the story is the founder of Wal-Mart, the big American Supermarket that bought ASDA, had Myeloma and he had of course millions to spend and he funded the research at the local hospital, hence Little Rock. The hospital claims big things for its procedures I believe but the only down side, I understand, is that the Hospital has steadfastly refused to allow anybody to independently check their treatment and ?cure? rate.

I wish you the very best of luck whatever you decide.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Hi Gary & Hara, Welcome (?) to the club. For me the key is talking about it when people want to talk about it and not allowing the "elephant in the room" scenario. I do get a little down some days, not so much depression just that I just do not feel my normal happy self.

I found your post very interesting Hara, 10 years remission well done. It is stories like yours that give us all hope, weren?t they still using leeches 10 years ago ?

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Sounds great well done to the both of you – now relaxe and have a very happy Christmas and New Year.

kindest Regards Vasbyte

David

[PerkymiteParticipant]

I am pleased you have an outcome that suits everybody. My very best wishes to him.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I know exactly what you mean Eve. I have had hearing problems since leaving the forces, in any group it is very trying. I cannot concentrate on what everybody is saying and miss a lot of what is said. Nowadays I try to grasp the core of what is being said and then just nod and smile. I get fed up with keep asking people what they have said, and I am sure they do as well.

I am the technophobe in my family although I have been training my wife on computers to PVRs for the last 2 years. Regrettably she thinks she can just ignore things and they will go away but off course they do not and as I do just about do everything on the internet she is going to HAVE to get on board. I insist she looks at the telephone, gas and electric accounts but it can be hard work. She is now pretty good at internet banking but because I opened up her own account and it is the only way she can get money 😀 – there is a lesson there somewhere;-)

I am glad you both have not lost your humour; Mo and I are the same. I am forever getting to the top of the stairs and then asking why I am there, we have a good laugh. Funny it is only when I have gone back down again that I remember, then I have to go back up. Do you think it is the body just giving me some exercise:-D 😀

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Yes, very interesting they were certainly upbeat about the drugs being presented and no doubt part of the progression in finding "treatment" if not a "Cure".

Thanks and a Merry Christmas and a safe new year.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Great Min, I think you are right. hey ho and away we go………

kindest regards – Vasbyte

David

[PerkymiteParticipant]

Last night I determined I would remember what happened. And I remembered I did go to the pharmacy to collect my prescription on Thursday and was told that it would be ready Friday – I then forgot to collect it. So I am pleased that I managed to sort that out in my mind.

However, I went to collect my scripts today to be told the Surgery had not processed anything for me:-S . Lucky the Pharmacist was a young lady I know and she let me have enough tabs until Monday when I can sort the whole thing out.

Checking the last time I logged in to the Surgery computer shows that I did log in 4 days ago so that was when I put in my repeat script so the fault must lie with the Surgery. So we have two bog ups one the Surgery did not process the script when requested and two the Pharmacist told me they were processing a script for collection Friday which they were not.:-0 It is a fun life:-D

kindest regards – Vasbyte

David

[PerkymiteParticipant]

Hi Keith, Both my wife and I had the chesty cough after the flu jab and I have heard of several others who have had the same 🙁 .

I hope it clears up soon for you, kindest regards – Vasbyte

David

[PerkymiteParticipant]

Human beings are such strange things, so diverse. I am totally up front about my illness with anyone who wants to talk about it, including strangers in the waiting room of life, so to speak. My wife would really rather not know I think. When I explain to her what is going on with me I always add the line, "I have to tell you this it may be nothing but if I cannot tell the Doctor you will need to know what has been happening so you can tell him plus what pills I have taken etc? etc… But I can see the reluctance in her eyes or maybe it is fear. This is in no way a criticism of my lovely wife I should hasten to add, who has been by my side and propped me up on many, many occasion during our 49 years together just the different ways people deal with these situations.

The very best of luck to Frank I hope everything turns out well Jean.

Kindest regards – Vasbyte

David

[Author]

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