MATEs FORUM

Steven, I sincerely hope that you join the ranks of us that have been lucky to receive the Booster ! You and I are similar with our flavours of MPN & we both have the ASXL1 mutation. We are both at risk of TIA and I firmly believe that we actually cope very well with our journey on this precario...

Hi Everyone, Here in the UK it’s quite a Bun Fight to get the Booster Vac.. I was met with absolutely infuriating nonsense at my GP Clinic ie; Did I believe I was Vulnerable ? and so forth.. Lost my cool with the Surgery and took my correspondence confirming that I have MF .. I was told that what su...

Hi Rosie, Welcome to Mates, I am ET, Jak 2 +, MF & PV with AXSL1 mutation, like you I quickly learned my elevated Platelets had been overlooked sadly, however neither did I have symptoms... My story started in March 2018 & yes it’s a real shock to say the least.. I had virtually just retired...

Evening Jacqui, It’s lovely to meet you too, thanks for the kind reply.. Yes Fatigue is hard to adjust to, however you will get to know your limitations & the pre curser to a Bad Day . You will however have so many more GOOD DAYS to come.. This illness just doesn’t respect our Feelings and Wants...

Hi Jaqi, Firstly welcome to Mates & MPN Voice really glad you found us.. Like you I was very taken aback shocked when diagnosed with ET.. I had a BMB couple of weeks later and Lo & Behold I have MF too.. I am also JAK 2 + like you, I am classified as Intermediate 1 on the Scoring Schedule.. ...

Hi Steven, As you know we have followed your progress from several years back to this particular Conclusion.... You have done so wonderfully well in achieving this very Forum which was simply an idea in your head back then..😬 Next the “Ride” never forgetting Mum and the wonderful care you provide.. ...

Leg Three (3) Foster — Port Macquarie It’s 07.30 with you and I am confident you are off or ready for the off. You prefer early starts, especially if hot weather.. No matter what, Take Care of Yourself on this leg.. I will drop by tonight to see how you are. As Always Stay Safe Steven, Hugs to You &...

Evening Steve, Day 2 Stockton Lakes to Myall Beach, just a tad shorter ride thus I am hopeful you will be able to settle for the night earlier than last night... We are thinking of you on this long awaited journey... I suddenly have opportunity to speak for those of us blighted by the true ramificat...

Hey Warwick, Just wanted to wish you well on this journey, I have asked Steve how you are doing ? Like you I have MF & Stem Cell is the only answer, Well Done to You ! Kind Thoughts & Wishes to You & Yours, Absolutely Brilliant you’re Sons having matching Hair Jobs.. It may become a fash...

Hi Steve, Well as promised I am watching & supporting you from the UK. It’s approaching 5pm with you and I am very much hopeful you have arrived in Somersby ? I know you have had warm weather on the ride, as ever I am thinking of you’re Hydration & Electrolytes.... Keep on top of this to rep...

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 y...

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 a...

Hi Steve, I would very much like to catch up, I think it’s a rather splendid idea.. Shame we don’t have the same here in the UK. Will be nice to drop by and say hello, I see there are folk interested on Voice.. No matter our location, we are all on the same journey with our mate MPN.. You are always...

Wear a Face Mask or Not. Personally as a Registered Nurse RTD I have been wearing a Face Mask from the beginning in UK.. Primarily to protect others, if I should be carrying any Bacteria / Virus etc.. Having MF, PV AXSL1 Mutation and the obligatory ET ,”the starting point” I hope to give myself a fi...

Hi Steve,
I personally don’t think 2 mtrs is enough, especially outside of the domestic environment..
I see you are busy as usual on here, hope all is well with you and yours..
Maria x

Hi Steve, I know I have been absent for a long time with issues far too many to mention here. Now my husband is recovering from his Tripple Heart Bypass, life is slowly getting better. As you are aware much has taken place in my world. It is so good to catch up with Mates and so nice to see you at v...

Hi Warwick, That is quite some history there, I didn't realise that you have lived with MPN for 16 years until I saw your acceptance to the Cafe Catchup. You are way ahead of me in the duration aspect. I have sympathy for your Migraines, I have suffered them from childhood. Squamous Cell Carcinoma (...

Hi Warwick, Oh dear you are in a difficult situation with Pain in Extreme and Work situation.. Clearly you are in greater need than I with the Bone Pain.. I do suffer on occasion with Lower Back Pain, absolutely not on the same level as what you described.. Powerful Drugs are the same throughout the...

Hello Katie, How nice to hear from you, although I am rather sorry to hear of your Ulcer on the Ankle. With good care and time it will heal, but as you say not easy whilst still taking HU. Yes it does bring to mind the " Hole in the Bucket Song" same applies to me on occasion.. You must ce...

Hi There, I have suffered Bone Pain for approximately 5 months, at present it is in the Extreme range due to me having developed Bronchitis after having my usual Flu Vaccination last Saturday.. Coughing is the current enemy naturally, however I consulted a different GP.. This time around I wasn't in...

Absolutely fabulous idea to have Cafe Catch-up, really wish we could have the same here in UK.. You are fortunate to have a Far Thinking Founder, who understands what really matters.. Whatever you decide, have another Enjoyable Gathering.. Always nice to chat with folk who are on the same journey ab...

Hi Steve Just taking a look around at new members etc, are you burning the oil late ? I see Natasha is a very interesting case lstudy.. Lucky lady to have diagnosed herself so young.. I would love to have a Cafe chin wag with you and other Forum members, if only I had a magic carpet to transport me ...

Hi Steve Found this interesting timeline perfect, I was told exactly one year to the day yesterday Friday that I have MF... My husband was told yesterday he has Bladder Cancer, how advanced we will not know until he has surgery sometime during the next 2 weeks.. During that time he will have a Scan ...

Hi Steve Many thanks for editing my post and getting it in the correct place.. I very much like the Forum but I wasn't sure where to post it.. Perhaps you can point me in the right direction please, never have been good with Navigation... Sorry to hear you are presently taking a break from the Cycli...

Hi Folks Last week I received a letter from Professor Harrison at Guys London telling me the results of Gene Panel Test... Sadly it has been confirmed I have the AXSL Mutation.. Thus I am now ET JAK2, AXSL, MF Intermediate 1... This came as quite a shock that I have 2 mutations ... I'm currently on ...

Hey Guys, What Fabulous News, Australia has a Forum for MPN... I think it's a great site with Huge Potential to grow into the "Number One" go to site for help, understanding, knowledge, last but not least the opportunity to talk with Mates.... As it grows and expands in numbers there will ...