NEXT 'MATES' ZOOM CAFE CATCHUP

[MPN-MATE Admin]

CAFE CATCH UP – Virtually on ZOOM of course...

MATES CAFE catchup.png

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Hey and evening everyone...

Hoping you are all of you staying safe & well in our "new Normal" world of CV–19 ...

Now, I believe, (well at least I hope so), that I have ridded myself of all the bugs, and solved my inferior Tech.' issues by acquiring a new Laptop...

Hence, I am setting the next date for our MATES ZOOM CAFE CATCUP:

DATE: Saturday 5 September (Will try to have two (2) Meeting Times at 6 & 7PM - each meeting lasting only 40 minutes)

Naturally, I will send out email invitations in due course, therefore this Post is just a quick 'Heads up' so to speak...


CV-19... still pervades our new normal... so I guess it will always be a Topic for discussion. However, just a brief template 'Agenda' more or less the same as the last:

1. Brief Introductions – I will start w/ a brief introduction of myself and then ask the next person to do the same etc...

2. Discuss if anyone is having any urgent treatments, where they might need some advice if any of us are able to provide of course

3. How is everyone coping with their CV-19 restrictions, fears etc...?

I doubt we shall fit much more in on this particular occasion however, we shall try all the same I am sure... 8-

I hope to see and meet many new faces out there...

Stay safe & well...

Steve
On Behalf of
MPN-MATE RESEARCH FOUNDATION

PS. 6PM AEST (Australian Eastern Standard Time – about 09AM in London Town)

[JackLina]

I'm really confused now. I thought I was joining a zoom meeting but I registered and there is nosign of any meeting.

[JackLina]

Still confused but please include me in future invitations to meet.
All the best
JackLina

[Kinsale]

Thanks for organising this Steve. I look forward to it. Mark

[MPN-MATE Admin]

Hi Penelope...

Really happy to see you here...

The Post is just to advise of when the Next Zoom Cafe Catchup is taking place:

SATURDAY - September 5 - From 6PM & then a short break before another meeting at 7PM

Pop it in your calendar for about 9AM (London Time)

And BTW, welcome to MATES Penelope...

Best wishes

Steve

[Alkemist]

Hi Steve
Good that you are arranging another Zoom catch up, but please accept my apologies for not joining with you all this time as it clashes with my regular tennis (this is one of my strategies for reaching 84 .). Hope it all goes well.
Allan

[MPN-MATE Admin]

Hey Allan...

Great to hear from you...

Yes, all exercise is a MUST, in my view too...

I shall remember this for future bookings...

Stay safe & well my friend...

Steve

[MPN-MATE Admin]

Hey there Merry...

I know your Post is not on the Forum but I have your email advising that you will also be attending... COOL...

Looking forward so much to seeing all those unfamiliar faces too...

See you soon... Stay safe & well...

Steve

[Lady in Red 01]

Hi Steven,
I would have liked to join this Catch Up, however I don’t seem to have the required Invite to log in as such..?
You did kindly reference it, in our last email chat, as you are painfully aware I am not ‘great’ with this medium.

I hope all goes swimmingly well, hopefully Peter will be in attendance etc, I know Maz is unable to attend this time..

Please include me in all future Invitations, I realise I have been very much off the Radar of late and undoubtedly missed the Invite on both Mates & Voice Forum’s..

As you know I’m rather under the weather at present
Platelets just entered the Million Club, Haemocrit is raised, Venesection next week.
MF Bone Pain is a real pain in the butt at present

I collect Ruxolitinib & Hydroxycarbamide on Tuesday next. I commence Ruxolitinib on
10 mgs Daily & Hydroxy drops to 1 Gram Daily, at least for the first five (5) weeks..

I’m hopeful Ruxolitinib will ease things for me, right now I am “ just existing “ I have Zero QOL, hopefully it can only get better..
I’m hopeful my Dance with my three (3) flavours of MPN will be a “long slow dance“ .

Hopefully all my fellow MPN Sisters & Brothers are doing as well as possible & Staying Safe in these very dangerous times that our World is facing..
Enjoy your Springtime my favourite time of year, sadly the UK was in Lockdown for our Spring..
My beloved garden had to suffice, but missed being out & about as such..

We are most definitely entering Autumn & Winter will be here in a jiffy..
Along with the Cold & the added perils of Covid escalating...

Enjoy your Summer folks, ours has been rubbish sadly. The Sun was here throughout late March, April, May..
Come June it simply disappeared only occasionally giving the odd day of Sunshine throughout all of Summer..
September is very wet but rumour has it, we shall see the dizzy temperature of 23c next week but still Rain persisting...

I look forward to 2021 with hope for All of Us.

Enjoy the Catch Up, I look forward to seeing you all very soon..

Good Luck Steve, should be absolutely fine with the New Lap Top Etc..
You built this amazing Forum from Scratch as I watched you pour hundreds of hours into it’s Conception and here we are today!

Zooming and such like will become every day work, adding to your huge workload that exists already ...

What an Amazing Achievement and Contribution to the World of MPN’ers..

Stay Well & Safe to All..
Maria

[MPN-MATE Admin]

Morning from a sunny Sydney Maria...

Yes, it was a good meeting and you were missed... Maz also managed to make it along after all as well...

We were down on a few numbers this time around, and I still had a small bug w/ my new laptop, (My video camera would not function), whichj I am very happy to announce it is now 'Fixed!'

All one needs to do to jon the Zoom meetings Maria, is just 'Click on the Link'...

Maybe ask Sarah to help you get started next time around, which I will be Booking in again shortly... (Probably an October Sunday?)

There were quite a few who may have forgotton about the meeting or simply confused the dates for same etc...? A few others, provided their apologies on this occasion, but otherwise I think the meeting still went quite well...

Anyways, stay safe & well... And hopefully we shall see you next time around... (?)

Best wishes Maria

Steve

PS. Good news about your Med's too... very well done!

[Lady in Red 01]

Evening Steven,
I’m so glad it went well, it would have been lovely to have seen new faces, and nice that Maz made it, I would have really liked to have caught up with Maz etc..

That sounds good to me, “just click on the link” you will send out, thank you.

I read the individual’s Stories including your good self, yes much of it I knew from our chats, but to actually read it in one sitting so to speak is rather different...

I found everyone’s ‘Story’ of interest it also gives that insight into how us, as individuals respond to the life changing diagnosis...
It has made me take a long deep look at my own situation..

Reading about depression and anger that can take hold of us and possibly grow, if we nurture those feelings long enough, made me realise that I personally have never aired my innermost thoughts of my situation..

It was only two (2) weeks ago that I shared just a tad of what I am feeling emotionally with my Haematologist...

Which is very much a first for me, I have never allowed the “ Mask of Calmness “ slip especially in the Hospital that I was a Nursing Sister RN throughout my working years..

Thus I intend to write My Story and truthfully express my sadness, frustration, anger that I have buried deeply for 2.5 years..

Reading all the Stories was both Sad & Congratulatory that the Author had put those feelings on paper, very brave in my humble opinion...

I can see the merit in doing so & I feel that my buried thoughts need to be aired, in a place where one can understand how our individual MPN’s affects our lives..

In general for me it’s my daughter Sarah that, “gets it” with me..

Thus I sincerely intend to tell my story very soon, once I write it ( Word Document) then post...

What do you think of my Dosage of Ruxolitinib ?, I did request the lowest 5mg but got 10 mgs along with 1 Gram of HU Daily..

At least for the first 5 weeks, I will see what happens then..
Hopefully my Platelets may decide to leave the Millionaire Club 🥵

All the Best as Always
Maria

[MPN-MATE Admin]

Hey Maria...

Yes, I asked Maz if she had heard from you too... As I was half expecting to see you there as well...

Not to worry the Next Cafe Catchup is coming in mid-October I believe. Naturally, I will send out all the invitations, then it's just for others to join in if they're free and they wish to of course...

Your 'Story Telling' is most welcome. Once you have completed it, just email it w/ a Picture or two, and I will Place it on the website etc...

I look forward to receiving it soon Maria. Remember, circa 2,000 words. No need to be concerned w/ any type of Formatting as I will reformat for the website page in any event...

Anyways, stay safe & stay in touch and I hope to hear from you again soon w/ your story etc...

Best wishes Maria...

Steve