What Next?

[Aime]

Bloods okay, joints always sore,

Used to that, so accept more.

Pain under left ribs, nothing to worry,

When, to my GP, I do scurry.

Ultrasound is the best way to go,

Second now, first nothing to show.

Organs okay, look for hernias now,

Hernias no, GP a troubled brow.

“You’re very unusual” he says to me,

“Interesting, different, unique” says he.

“Your internal layout is upside down,

Not sure what that means,” he says with a frown.

“A surgical opinion must be sought,

So we know what you have got, or not.

Is your appendix on the left or right,

Or tucked away, out of sight?”

“It’s so important to know your layout,

So, a correct diagnosis comes about.

It means we were looking in the wrong place,

With your appendix pain, on previous dates.”

I tried to smile at my GP,

When he was saying all this to me.

I do, at times, feel sorry for him,

When I walk in, he must feel grim.

Oh no this patient is never easy,

To diagnose when she’s feeling queasy.

Is it her joints, or maybe her blood,

Or some condition she’s already had.

I then come home and tell my husband,

Who smiles and tries not to look stunned!

The poor man puts up with such a lot,

When, once again I say, “fine, I’m not!”

Thank you all for being there,

When times are tough and hard to bear.

It is so great to see love and care,

In a world sometimes, bereft and bare.

[Mwalimu]

Aime

I enjoyed your verse but also thought I would tell you of my experience which, of course, does not have to be the same for you. I had a very bad pain under my ribs on the left side a week ago, and have been diagnosed with blood clots in both left and right lungs. This was confirmed by a CT scan. This is now being investigated but am already feeling much better after a week of strong dose of blood thinner. An earlier chest X ray (about 2 months ago) had shown nothing. Hope your problem(s) is/are soon sorted. Sallie

[Aime in reply to Mwalimu]

Thank you, Sallie. That’s great you’re feeling better.xx😻😻

[lizzziep]

❤️❤️❤️

[socrates_8]

You are a rare talent indeed Aime...

Quite the wordsmith!

Not sure if you recall, however, I am not PV but Post ET/MF...

Platelets are always trying to surpass the 1M mark...And I am always aching all over, but it always becomes more exacerbated as the Winter months re-emerge etc...

Resorting to taking PKs is often unavoidable these days... I fight w/ myself not to take them but then yield when I must... (?) Methinks perhaps that other terminal illness might also being playing its part, (where I'm concerned), as I'll be 63 yo very shortly... :-))

Swear there were times I never thought I'd see 30...

Astounding really, as I'm still here too...

Best wishes...

Steve

[Aime in reply to socrates_8]

Hi Steve, yes we are still here! Dealing with pain drags you down. I find relief in the hydrotherapy pool, where the warm water, 34C, let’s me exercise mostly pain free. I really missed it during the pandemic.

I understand the age thing. I’ll be 65 this year. One more year until I get my pension and I’ll make the best of it once I get it! Still got a travel bucket list, so I’m hoping to be fit enough in 2023 to visit the national parks in the USA.

Take care, E hugs sent, Aime x😻

[Pte82 in reply to socrates_8]

Steve, are you a candidate for a transplant?

[socrates_8 in reply to Pte82]

Hey Pte...

Sorry about the delay, I'm not as active on the site as I used to be...

I've been Tissue Typed (TT), however I did not have a 10/10 sibling match, and at present I seem to be remaining in the "Long Burn MF" group, (& long may it remain so...)

Hence, they've adjudicated that it's best not to risk my Quality of Life , against the uncertainty of the ASCT outcome...

Initially, I thought that I would rather chance it, however, in hindsight, I am glad that I remain on the "Watch & Wait" list for now...

Best wishes Pte

Steve

[Pte82 in reply to socrates_8]

Thanks for the reply Steve. I understand your position. In an earlier post you mentioned mentioned platelets trying to surpass the 1M mark. When my wife was on Anagrelide her platelets were doing the same thing and higher doses of the drug had little effect and only increased side effects. Her oncologist approved 50mg of red palm tocotrienol twice a day. As her platelets decreased her Anagrelide was adjusted. In her case they returned to a normal range. It's interesting that annatto tocotrienol is being researched for possible benefits against various cancers. Maybe it holds pieces of the MF puzzle.

sciencedirect.com/science/a...

[Wyebird]

Love it!

[socrates_8]

Hey Aime...

Lucky you... It's 67 yo here, & they are talking about (periodically) making it 70 yo(?) They should just make it the magic 100yo & be done w/ it all together... :-)) Yes, I'm joking of course... The French are facing something similar I believe... (?)

Travel plans sound awesome... I'd love to see those Redwoods over there too... Have a sister in California... maybe someday... (?)

Anyways, very best wishes to you & yours Aime...

ox

Steve

[ciye]

I am sure that's how my gp sees me..

[EPguy]

Great MPN concert. We've all experienced some version of the tune.

This part "You’re very unusual" jibes with my recent post where Dr said "no" to my question "is that normal?"

[socrates_8]

Hey again Pte...

I shall take a look at the article you've Posted, sounds of interest to me too...

Steve