MATEs FORUM

Hey Katie...

Excellent news to hear that you Jerry & Jo will be coming along too... Super! Great to have an excellent support network.

Yes, bloods are looking great and all bleeding has now stopped completely, (I hope?)

Still things are looking a tad stable with my bloods for the first time in a while...

Looking forward to our Cafe Catchup, and you will be able to meet Warwick who is definitely coming along too. Hopefully, Michelle from the Central Coast will be along as well...

See you there...

Best wishes

Steve

Hi Steve,

Not bad at all. That is a great early Christmas present. I hope it continues for you and it's great to hear that you are feeling mentally positive. A hard thing to do sometimes. Keep up the good work and you never know the fatigue may settle down as things stabilise.

Cheers,
SilverET

Thanks Silver ET ...

Yes, so far so good, as they say...

Fatigue hit me again today while out riding, although... it was really quite a bad smokey day, and perhaps that also contributed to my fatigue via oxygen deprivation... me thinks?

Have a happy & safe Xmas for you and yours too...

Best wishes

Steve

Thanks Steve. I intend to try and have a relaxing Christmas break and maybe even get this running happening properly.
Cheers,
SilverET

Hey everyone...

Just the latest MTX Trial update:

Hgb: 119
Hct: 0.37
RBC: 3.83
WCC: 5.0
RDW: 16.9
PLts: 903 (up 100)

Interestingly, I have had a couple of dental procedures in this period and I'm curious as to whether Novocaine might cause an increase in Blood Platelets?

I shall have another FBC in two weeks to see if levels have reduced any etc...?

Watch this space...

Best wishes all...

Steve

***QUICK UPDATE***

My previous bloods also retested for my VWS levels, and returned with a suspected increase in VWS & speculation that I am now Type2 (Acquired?) VWS...

As of this morning, (& as recommended), I was retested again using a different Pathology collector, to see if the results are any different etc...???

We shall see I guess...

***WATCH THIS SPACE***

Hello Steve,
Post speaking to you last time, I dropped my phone. We were still under a degree of lockdown here, so I couldn’t get another one until yesterday.
Sorry for the delay in replying.
My first visit here and I see that you are experiencing some back pain. I don’t know if it will help, but I occasionally get back pain and find that if I hang on to something elevated with my feet off the ground, my body weight seems to stretch out my spine.
It usually works after a few tries and gradually gets better. Sort of traction I suppose.
I hope it helps you.
I am exploring your site and find it very interesting.
Thanks for inviting me to join.
Gosh you really are a serious cyclist. Well done you!
Could you put a lavender pillow underneath your normal pillow. Even if it doesn’t help you to sleep, it smells wonderful.
I can identify with your experience with your English teacher. I had an equally obnoxious Maths teacher. I’ve hated maths to this day.
I constantly tell my grandsons that one doesn’t need to like their teacher to learn from them, but I didn’t take that stance and I am the poorer for it.
Fortunately they seem to like all their teachers.
Thanks again for all your help.
Really hope your fatigue lessons and you are feeling good again soon.
Kindest regards,
Marcia

Hey Marcia...

Sorry to have taken so long to reply...

But after my last email back to you, I was hoping that you were going to make a NEW Post to 'Introduce' yourself to MATES etc... ?

Anyways, it's no biggy... Just hoping to create greater activity via our Posting community is all...

We seem to have loads of people visiting and reading the Posts, but very few actual Posting contributions. Hence, I am always grateful for all who do... Just makes my task a tad easier is all...

Thanks for all your health Tips too...

Unfortunately, most of my pain is in my bones & joints... And it is always worse in the colder Winter / Autumn seasons. I am afraid that it is all just a part of being me today... Everything always aches...

I might be entering a new Clinical Trial here shortly. It comes up in August. However, and after reading through the Consents Forms and associated information... It appears that they will NOT agree to allowing me to have complete copies of all the tests and results...

... And if they will NOT, then I will NOT be a part of it... I have been keeping all of my own personal medical history and Testing regime results ever since this started Four (4) years ago... If I do not have any records of what I went through, I might never be able to protect and defend myself should something go awry etc...

Pity though, as it did sound promising w/ regards to lowering my always higher Platelet regime.

Anyways Marcia...

Stay safe & well you and yours...

Best wishes

Steve

Hello Steve,
Sorry to have taken so long to get back to you.
How disappointing for you that the doctors may not release the complete copies of the test results to you. I guess if others are involved, they may have data protection issues. Nevertheless it would have been very exciting to be a part of it.
I really hope that your bone pain has lessened somewhat and you are able to continue with your wonderful cycling regime.
I will get to introducing myself, but truth to tell, when it comes to posting info about myself, I tend to retract into my shell.
Anyway, my little grandson is off for his day in hospital again today so lots on my mind.
Have a lovely day Steve,
Stay safe,
Kindest regards,
Marcia

Hey Marcia...

Firstly, I hope that your grandson recovers very quickly... Most important...

I am grown used to my levels of bone & joint pain, although it would be much nicer if that pain did not exist at all... My experiences compared to that of many others, I suppose might be viewed as minor... (?) Our MPNs are so diverse in so many ways...

However, my cycling regime and my diet really do help... However, I am worried about the day, (when it comes?), when I cannot manage to keep cycling... It is taxing and one day... I might be forced to stop due to my body no longer being able to support my efforts to continue to do so... (?)

Introducing yourself on MATES Marcia, does not need to be more than simply being conversational...

"Hi how are you? My name is Marcia, I have ... etc"

However, the choice about how you wish to share is always up to you of course...

Sorry, no pressure is/was ever intended...

Best wishes with your grandson again for a speedy and complete recovery ...

Steve

Hello Steven,
Thank you for your concern and very kind email.
I’m afraid that Stefan’s condition is chronic. He will always have to go to the hospital for a day on a drip every three weeks.He has grown very used to it now and seems not to mind the needles and the drip. I’m sure he finds it difficult sometimes, but he never complains. He is a wonderful sunny child and very brave. We are so blessed with him.
I pray for a cure for him one day as I do for all of us with am MPN. One that doesn’t involve a bone marrow transplant, would be wonderful.
I’m so sorry you have a lot of bone pain. That must make life difficult for you at times. I must say though that I really admire your strength if character. Well done you!
I’ll put something on my profile if I can work out how to do it. I’m not very techy.
Can I ask if it’s possible to send a donation monthly, perhaps on a standing order.
It won’t be a big donation i’m afraid as I live on quite a small pension. However, I would like to help a little if I can.
Thanks again for your reply.
Have a lovely weekend.
Kindest regards,
Marcia

Hey evening again Marcia...

I am so sorry to learn about the struggles that your young son Stefan, must have to face... That must be a sad thing to have to contend with as his parents, in particular... Obviously, very tough for him too, no doubt... But very hard for the two of you too, I am sure...

Yes, wouldn't it be just a wonderful world if we could all start doing things, just because it's the right thing to do...? (money, and more of it currently remains our current paradigm - sadly)

Finding a cure, for all of these diseases will one day be a simple thing, into the future...

You do not need to make a donation to be a part of what we are all trying to do here Marcia. Besides, I am sure that you guys would need every single peso / euro to take care of yourselves...

However, if you really would like to, and ONLY if you have have anything to spare, naturally, it would always be most welcome Marcia... irrespective of any amount...

However, please never do so, before taking good care of yourselves, that's all I ask...

Here are our Banking details.

St George Bank

Account name: MPN-MATE RESEARCH FOUNDATION

BSB: 112- 879

ACC: 479702741

By the way, we had our first MPN ZOOM Meetings scheduled for tonight...

Sadly, the Tech. somehow managed to make it all quite a difficult experience, about a dozen groups turned up... However, no one could actually enter the First meeting... and ... (the icing on the cake?)...

Well, even I, (the Host), could not get into the 2nd Meeting although x9 others did...

Doesn't matter, apparently they all had a very good time:

From the Land of Oz, to New Zealand, to Austria, to Ireland, and England of course...

There was another from Texas, who also could not make it into the Room on the night...

But I shall try again soonishly... Perhaps after I complete the Bicycle Mechanics Course that I had just started this past weekend... ?

Anyways, stay safe & well Marcia...

Very best wishes to all of you in Grand Canaria...

Steve
ox