Hi All, Like many peops I get random thoughts swilling around my mind and I sometimes need to commit them to paper to 'clear' em out. The following is an account of my diagnosis which I have attempted to set in rhyme. Maybe some of you will relate to parts of it. Im just putting it out there, Cheerz. Jed
DIAGNOSIS MYELO-THINGY
I were diagnosed wi' a Myloprofilo. , No a Myloferprolative . . No I were diagnosed wi' a blood 'disorder' back in 2006,
Tis still a mystery to me how I copped for it, but me bone marrow were up to all sorts o' tricks.
All that I know is that I were always worn out - whether I'd grafted or sat in me chair,
And somehow I lost a stone in weight, tho' I weren't stressed coz I didnt have a care.
A funny thing was I were very hot in bed 'wey hey there's a first time for everything' says me wife,
But this were like I proper wet the bed, and it aint normal in adult life.
So I were sent off t'd docs by 'er indoors' for a full on MOT,
I'd to provide a sample of me blood and of course me pee.
The phone rang late one sunny afternoon and me doc were on the line,
I thought 'ay up lad summats up 'ere' as I were expectin' it all to be fine.
I must admit I were a bit shell-shocked after that call and I always thought meself 'ard,
And at the hospital blood clinic I were told me bone marrow could be scarred.
Of course I couldn't tek it all in and it mostly went way over me head,
And I had to have a marrow biopsy, lying on me side ont' bed.
A week more worritin passed me by and we went to get the news,
He reckoned I summat called Myelofibrosis coz they'd gathered a number of clues.
I asked if it were worth buyin' a new suit or would I have years to go,
He said right matter o' fact ' we'll start you on a dose of these ere chemo drugs and some Allopurinol.
So 'ere I am now religiously poppin 'em down each and every day,
They help to keep me bloods in check and keep me gout at bay.
I'm the only one int' land with this Myelo-thingy I used to moan,
But I found this on-line forum so now I'll never feel alone.
So THANK YOU folks for sharing your views on your MPN's,
From a guy who is eternally grateful to have some good honest on-line friends.
CHEERZ JED
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JediReject
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Jed, your words are poetic and just brilliant!! I believe you have summed up how many of us feel. I ditto yours and Aime's comment re the forum. Thank you, Diana x
Oh Wow! That's just brilliant! It should be shown to all MF sufferers to give us all the big grins that you have given me with your down-to-earth wit! In truth though, forums have become a godsend to me in knowing I'm not alone. When first diagnosed with ET 19 years ago we didn't even have the internet at home so information was scarce to say the least. How times have changed! Thanks for sharing your great poem
Hi All - Im touched by your kind heartfelt sentiments so cheerz to ya all. Its a funny thing really but since I had that call from me doc and subsequent diagnosis I've lived only what I can describe as a 'surreal' life, it's like it is me but Im lookin in through a window as an observer most of the time, , if that makes any sense. And before you ask yes I would fail a breathlyser. Anyway it certainly aint how I had my life mapped out so it must be someone elses life Im living eh. That's how I feel even now.
Since I was diagnosed wi' Myelo-thingy I have oft gone to bed wi' it on me mind and woken up wi' it still on me mind - it's changed my being so much. I even dream about folk I aint seen for 20 or more years and I'm tellin' em I have blood cancer. Some of em were gits and say 'tough'. LOL . Bizzare tho.
At the time as a newly re-married bloke to my 'soul mate'- a year before diagnosis and after a difficult long term relationship I was earning decent brass and planned to treat us to trips away, meals out etc but i had to cease working and it weren't to be. C;est la vie. But bless her she turned out to be an angel an all. How lucky am I.
Anyway I hope Ive maybe inspired you to post up your thoughts and feelings coz I feel alot better for venting my spleen if you'll pardon the pun. .
Excellent, I was waiting for Albert and the Lion to appear .These things are not pleasant but it is the hand we have been dealt and we have to play it as we cant change it. Maintaining a good sense of humour is important. I have spoken about Myelofibrosis and transplant at a couple of MPdVoice meetings and in preparation I told Claire Harrison that I would take about ten minutes, unless I did the musical version! She said that she would like to hear it so I wrote a number of samplers for ' Myelofibrosis - BMT The Musical 'including I got you under my skin, Tainted Blood, Strange DNA etc to cover my diagnosis through to transplant. And no I did not use this at any forums!
MFBMT - I would also love to hear your samplers, Im into plays on words and was immediately drawn to 'Tainted Blood' - no coincidence was Soft Cell. Wish I'd thought of it. I'm a music lover and so thanks to you I will now have a load of new associations floating round my 'loft space'.
Dave 117 - Im pleased it made you smile mate, your post which i read this morning lifted my spirit for the day also, its often the unexpected small things which carry us along for sure.
Tombs - Im glad you enjoyed it, I'm a northern lad through and through and proud of my roots. If only it weren't so damn cold and wet it'd be grand as owt.
Loved the poem JediReject. Even more cos it's in North speak ...you're talking my language there totally understand where you're coming from . My husband has had PV since 1998 then turned into MF in 06 . Just as he was retiring aged 59(wouldn't you just know it !) All our plans of travel and sun and long walking hols in the lakes melted away as he became more unwell. But you can go nuts thinking about what you can't do so it's better to try and enjoy the things you can ( not always easy I'll admit ) .
Would love to share your poem on the Myelofibrosis support group site if you'd give me permission ?
Hi MalLing, Im very sorry your retirement plans have been undone somewhat by your hubbys MF. I can empathise as I had just got re-married and we'd got a house with a sizeable mortgage along with it and like you were looking ahead to better times than we'd both previously had but I had to give up my business and sadly it's been an uphill struggle since. Like you say the best approach is to try and enjoy the things you can achieve / afford. We do the best we can but coincidently were just saying yesterday we both felt a tad 'flat' because there's nothing on the horizon to spur us along but Im determined to resolve that.
Please feel free to share. Im unsure what site you're referring to so maybe you could post a link. Best wishes to you both.
Seems like this damn condition knows just how to pick it's time doesn't it ! Best wishes to you and your new spouse. Stay strong and love each other through these difficult times . We've been together 39 yrs now , married for the last 28 with two adult children . The thing motivating my hubby at the moment is keeping well enough to walk our daughter down the aisle next summer. He's also taken up bread making and baking with fantastic results ! Well fantastic for his sense of achievement that is but not for my waistline !
The support group I mentioned is on Facebook . There are one or two on there but the one I joined is the Myelofibrosis support private group. The people on there are a good mix of patients and carers from all over the world with an amazing knowledge of MF . Very supportive , caring group and a bit more down to earth than some of the other groups . I've learned lots from them and there's always someone who understands what's going on . I also joined the sister group Women of MF -The Steel Magnolias. That's for women only , either with MF or their carer and family. We have some laughs on there , and what's said on there stays on there so it's a good place to unload if you need to . Worth considering anyway
I`ve just joined the forum, literally, and having been newly diagnosed (Feb `13) with ET reading some of the blogs I suddenly feel less alone in this situation. JediReject`s poem struck a cord, and as a Yorkshire Lass made me smile, nay laugh out loud. Therapy indeed, just what I need - hey that rhymes too!!
Welcome sksar, , I'm pleased you enjoyed my ditty. The forum is useful but has dried up a tad of late poss due to fact that numerous 'common' topics have been discussed and many related ones. It might be good if peops posted up the positive things that keep them going day to day or simply what has brightened their day which is why I was happy to read your comment. Hope you're keeping well. Cheers
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totally understand where you're coming from . My husband has had PV since 1998 then turned into MF in 06 . Just as he was retiring aged 59(wouldn't you just know it !) All our plans of travel and sun and long walking hols in the lakes melted away as he became more unwell. But you can go nuts thinking about what you can't do so it's better to try and enjoy the things you can ( not always easy I'll admit ) . 
Has anyone had a bone marrow transplant who has PV? 
Diagnosis confirmed this weekend
Polycythemia Jak2 negative
Should I push for another Bone Marrow Biopsy?oh and Happy new year everyone
