[PerkymiteParticipant]

Hi Lisa, Sorry to hear about your Dad, 56 is so young for this Cancer.

Since 2009, when I was diagnosed, this subject has raised it's head several times. From the posts "the Consultants" seem to firmly place themselves in the non-hereditary camp. Whilst Patient's raise patterns within their families. It could be that we the Patients are just not seeing the big picture i.e. off 4000 diagnosed Myeloma patients in the UK per year how many have a hereditary link? I do not think there has been a definitive study of this and perhaps it may by be something that Myeloma UK could tackle?

The other point is that I think everybody is now noticing how Cancer is rearing its ugly head more and more nowadays. The big killer in my father's day was Bronchitis.

Kind Regards – Vasbyte

David

[PerkymiteParticipant]

Hi Chris, My pp went to 1.7 prior to SCT and then hovered around the 2.3 mark for 2 years. I was told at the time, of the SCT, that they expected it to start rising after approximately 18 months. You have hit one of the big problems in trying to obtain insurance "the interpretation of the results" :-S . As they say you only have a partial result, i.e. did not go to Zero, but, Partial or full they both have a limited "shelf life".

Kind regards – vasbyte

David

[PerkymiteParticipant]

Just popped on to wish you and Chris the best of luck. Sorry, I have no experience of your situation. Please keep us posted.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I am useless at ticking boxes which I tend to see as an unnecessary complication. I fill my 7 day boxes up with tablets to be taken every Monday morning, Black medications & Pink pain killers.

I look at the box if the pill is still there I have not taken it – end of story, no question of "did I take it and not tick the box" etc…

It was the mental problem I had with the boxes at the start I think – I saw them as something old people did 🙁 Once I cleared that hurdle I was on a home run. Never forget a tablet. The other good tip I picked up on here was Toms' idea of filling 6 x 500ml bottles up each morning and putting them somewhere you could not miss them to be drunk that day; always now drink my 3 Litres(6 pints) a day.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Yes you are so right Dai, what would we do without our partners 🙂 And, you hit the button with stiff words and the occasional stiff arm once or twice I found it hard going. We had organised the trip into sections to allow for this and everybody we were visiting was warned I might have to break off the trip but with genital encouragement, like a kick up the A@@s>:-( every now again we made it and I am so very happy.

I have a short break then we are off for a weekend, Friday, in Pars, Cornwall to celebrate with my Daughter and her husband, her 47th birthday. I think I have a wedding to go to in July then a longish break before we are off the France for a week, in August, with my Son and his partner.

Just gotter keep taking the pills, although I have not got any better looking 😎 .

Kindest regards ? vasbyte

David

p.s. somewhere in all this I have some medication to take for something or other:-D 😀

[PerkymiteParticipant]

Hi Tom, unfortunately, not as far as I can see 🙁 . I can trace my Marriott family back to 1666 and I come from a long line of peasants, well stocking knitters to be precise from the Ashover Derbyshire area, I am afraid. I did have one uncle who lived in California and one Aunty died in a shot out in a speakeasy bar in Chicago 😎 . However, the name does make them jump a bit when I book into a Marriott hotel 😀

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Goodbye Keith and thanks for your company.

Thanks Andy for representing us.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Myeloma UK ran a programme to inform GP's of the symptoms to watch out for, in fact I think they are still doing it. It comprises of a letter and a flow chart to diagnosis Myeloma. If you have not made sure each GP in your local surgery has seen it I urge you to do so. I did all the GP's in the Taunton Area, with a personally address note attached.

When I was eventually told I had Myeloma, following a broken neck getting out of bed on the 9 Jul 2009, I was told that I probably had had Myeloma for 2 years already.

I agree you have to be proactive. We are so ready to believe a person in uniform or a white coat!

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Gill and Eve, I for one am not upset by your posts. I read them as I would read my wife's posts in the future if you can understand what I mean. I have said to Mo she must carry on and live a another life and when with luck she kisses my great Grandsons/daughters head I will be there, my spirit will not leave her side. And, I am sure, that Slim and Stephen are by yours, cannot help when the sink gets blocked but they can have a chuckle as you try to fix it 😀 😀

kindest regards – vasbyte ladies

David

[PerkymiteParticipant]

Hi Guys and Gals, I do not know where I lost this post but reading it I have missed a whole lot of questions —:-| Sorry. All seem to have been answered by other more generous souls – thanks.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Jan, I actually use 2 pill boxes. One I keep for pain killers and the other I use for medications.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Yes, you are so right Jan.

I have found the same,it is really a series of little things that are said and on passed on. My wife actually asked what I wanted doing with my rings actually. But there are other silly little (you might say) things. For instance my Granddaughter (9 years of age)went to a great deal of trouble to pick me out a little stuffed teddy to go on my key ring (it is about 4 inches long). It was a lovely thought, she had obviously picked up in the adults conversation that I was "losing things". I was so touched I said I would carry it everywhere with me. So I left an instruction with my wife that it is to be in my hands at the time of burial. Just another little thing that will make my day perfect!

kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Ladies, Yes I saw the Palliative Care nurse today and she has now switched me onto Morphine based drugs, but retaining the Paracetamol. I take 40mg every 12 hours which is a lot easier. My backup has changed to zormorth which I place under my tongue when in pain. Hopefully this will hold it all in check until my next assessment on the 10th when we are doing to discuss radiotherapy on the troublesome lesions.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

I am going across to the hospital for a Blood Transfusion this morning. My HB has dropped below 10.

I think they were going to leave it for awhile originally but I have a trip planned to London, this Sunday for one week, I am going to see War Horse, a boat trip on the Thames and the London Eye before dropping in on my Sister for her Birthday. Then we are visiting friends on the South Coast before making my way back to Taunton.

Problem at the moment is Bone Pain. I am taking Tramadol/Paracetamol every 6 hours, Tramadol slow release every 12 hours and Morpheme as and when and it still b****y hurts 🙁 It has just got to get better in the next 4 days, got to, got to —it dam well will:-D

Kindest regards – Vasbyte (big time)

David

[PerkymiteParticipant]

I wish Keith the best of luck and my thoughts will be with him.

May his God walk beside him now.

Kindest regards – vasbyte

David

[Author]

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