[PerkymiteParticipant]

An interesting post well worth a discussion I must say.

I go to my local hospital the specially built cancer centre at Musgrove Park Hospital, Taunton Somerset called the Beacon Centre. I am very, very pleased with my treatment and the staff could not be better, so of course I would recommend them.

However, unless you are going private I would suggest that all English NHS hospitals? basically follow a proscribed pathway, you might have heard of the Liverpool Pathway for the terminally ill, that has been in the news lately. There is also a pathway that lays out the treatment for a Myeloma Patent and I had a copy of it in 2009, when I was diagnosed, but changes of computer mean I cannot find it now. How you proceed down the ?Myeloma? pathway is dictated by the patients symptoms and how Myeloma presents itself, could be bone pain to kidney failure. There will also be some difference in patient?s treatment depending on their personal health, fitness and age but again this would be the same in any English NHS hospital you went to. Myeloma is an individual decease and overall survival rates for each hospital would possibly be the only way to tell one from another. I will be interested in your findings and the data to support them if you would like to share them with us.

When I first started on this site, 2009, I used to say to newcomers do not bother looking for the magic bullet on the Net because there isn?t one. If there was, rest assured, I would have been first in the queue. I did not do that to frustrate, deflate them or be negative but I believe there is more self destruction from believing some hype only to discover after you eaten a ton of Cumin, drunk 20 gallons of red wine and eaten Asdas stock of cucumbers (all of which have been "the latest thing" during the last 3 years) to find it does not work!

I wish your father well.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Real good news Helen I am so pleased for you, with regard to feeling guilty about posting good news. Please do so more often 😉 😀 . I am sure it gives people starting out on this road a lift not depresses them. Have a great Christmas and a happy happy new year.

Kindest regards ? vasbyte

David

p.s. My 3 month appointment is on the 21st Dec at the Beacon Centre Taunton, almost 2 years from when I was let out of hospital after my SCT.8-)

[PerkymiteParticipant]

Hi Keith, I had NS when I was in hospital recovering from my SCT. It appeared after they took out the Central line very, very nasty. My wife went out and bought a £40 electronic thermometer to ensure that measurements of my temperature, when I came home from hospital, would be accurate.

Kindest regards ? vasbyte.

David

[PerkymiteParticipant]

Just hang on in there Phil. I wish you all the best of luck. Keep posting.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Great post Andy. I wish you all the best.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

They set up an account as you did. This is a hoax /scam of that I am sure. Annoying, frustrating but best completely ignored.

The Moderator does allow us to the freedom to develop what we want but at the end of the day that sort of thing will be removed ASAP, have no fear.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Stuart will delete them when he comes in on Monday no doubt.

Kindest reagards – vasbyte

David

[PerkymiteParticipant]

Hi Sue, Firstly welcome to the site, not a thing you ever wanted but the people on here are good people and you will get lots of support I am sure. Secondly if you have any questions about Myeloma you have three avenues. One, the site forum, two, the site itself which has bags of UP-TO-DATE information and lastly the Myeloma UK Nurse – her number is on the site and it is free.

You will quickly learn that Myeloma is a very individual decease and whilst everybody is on the same road we are all in different avenues on that road. Having said that there are a number of points where our avenues either cross or are the same for a period.

I would guess that his personality change is due to the drugs especially if he is on Dex which we call Dex-attitude because it does change your personality whilst you are on it. Moody, depressed, angry for no reason – they are all related to Dex.

I was diagnosed in 2009 and prior to my Stem Cell Transplant I did have emotional problems with the various drugs I was taking. My wife just said it was not me and ignored my by bad bouts. I am at present on a low plateau Paraprotiens at 2.8 (never got to full remission)and I am drug free, our life is back to normal. There is a light at the end of the tunnel it is rather dim to start with but it will brighten up I am sure ? just stick with it.

Kindest regards ? vasbyte (it is a South Africans word which means grit your teeth and tough it out/get stuck in)

David

[PerkymiteParticipant]

I can only offer my support Emma.

3 years ago I faced the possibly of becoming a Quadriplegic. When the surgeon came in to discuss the operation I said to him, ?if it all goes tits up don?t bring me around, I am not having my wife wipe my bum?. He just said, ?fair enough? and walked out. The next time I saw him was sitting on the end of my bed just after the operation with a big smile, and he said ?she won?t have to wipe your bum!? You have to take these gambles in life.

I wish your Mum all the very best she sound a real fighter which is what she will need to be.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Tom do a search for "Musings from ward 9". I did a post whilst in ward 9 at Musgrove Hospital and I up dated it every day during my SCT. You might find it interesting.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Just a quick welcome Tom, Got to take the wifey in to her "Xmas Lunch with the Girls".

I was diagnosed Jul 09 with a Single Plassewhatsit. It ate the 4th vertebrae in my neck and my head is now held up with internal scaffolding ? brilliant job. I have gone through the Sct, Nov/Dec 2010, and I am now on a plateau at 2.8 pp, I never did go into complete remission.

I note you put ?3 months recovery of immune system?. Can I urge you to take great care at this stage you just simple cannot be too careful at this critical point in your recovery. No visits from people with colds and go completely over the top with hygiene. [u]Follow the instructions [/u]you will be given when you leave hospital.

There is still a lot of life after diagnosis so I wish you all the very best in your treatment.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

John, I just curled up at that, my level of humour to a T. It has got me in so much trouble in the past as I expect it did your Dad.

When I was being told I had Advanced Prostate Cancer I said to the Consultant, ?Can you keep me alive until Myeloma kills me?. He answered very seriously, ?Yes, I am sure we can?. It then dawned on him what I had actually said. We both had a good laugh.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Sorry Charlie I cannot help. I had a PE from a DVT in my leg about a year before I was diagnosed but that is no help to you. Have you tried the Myeloma Nurse?

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

There has been much discussion whether it (6 pints of water) includes tea and coffee etc… Some say it does others it does not.

When I was diagnosed in July 2009 I was told in no uncertain terms that it is 6 pints of water a day and that means water and that was by the Consultant! Being an ex military man(and well trained by the wife) I am good at doing as I am told, I have ever since then drunk 6 pints of water a day (273 gallons a year- no wonder there was a water shortage LOL). Look at it this way it cannot do you any harm but it might do a lot of good.

I think it was Tom who gave me a good tip and that was to line up 6 x 500mil bottles on the side in the kitchen first thing in the morning. This way you know how much you have drunk, and, can pace them throughout the day. At the moment I am sitting at my computer with my pint glass of water which is my second of the day, my last pint would be about 9:30/10:00 p.m. When I travel, which has been frequently this year, I take my bottles with me,

As you can imagine with advanced prostate cancer as well I am just about peeing for England!

Kindest regards ? vasbyte and drink the water 😛

David

[PerkymiteParticipant]

And a big APPY birthday to them as well Tom. Mine are now 2 years old.

Kindest regards – vasbyte

David

[Author]

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