All the Kind, Generous Folk of Our Wonderful For... - MPN Voice

MPN Voice
4,581 members β€’ 6,270 posts

All the Kind, Generous Folk of Our Wonderful Forum !

Kind Folk of Our Forum,

Last night I replied to "Running on Empty" as have done many of you..

I have been hiding my situation which is Very Similar to her sadly..

My husband has Stage 3 Aggressive Bladder Cancer and just a few friends on here know my situation in detail..

Sand Dancer being the beautiful soul she is, has supported me hugely..

Steve Australia with MPN Mates has also been of support along with Our Dear Biggles author, Peter...

Maz has and is as Always a Ray of Sunshine, Hope and Inspiration to All of us..

My reason for not posting back in May was rather silly in some respects when I think about it..

Whenever I have posted this Forum has always responded with generosity.

And I always thank individually, I didn't think I was up to the job this time around.

I simply couldn't believe that in 16 months of becoming a member firstly with ET then May 18 I got the MF Diagnosis my world crumpled at that point in time..

Fast forward to the Friday May 17th this year and my husband was told he had Bladder Cancer exactly One year to the day, Black Friday I call it..

We are going through his first round of treatment, last one tomorrow..

Then in October he will have Surgery again and if the treatment is slowing the Cancer he will receive another cycle of 4 treatments..

If it's Not working he has made the Decision to Not have Invasive Surgery and would definitely not have the Bladder Removed..

His elder brother had the same type of Cancer and he lived for 16 miserable months with Chaemotherapy, Radiotherapy and eventually his Bladder Removed..

My husband doesn't want to end his days like that, it's not for him and who can blame him..

Thus our Roles have reversed from hubby being my support system to me being Carer, Head Cook and Bottle Washer in a manner of speaking..

With MF there are bad days, and they are hard to overcome as I'm sure we can all testify to..

Sand Dancer Lesley has a wonderful Enthusiasm for Life and Moving Forward..

In fact her husband has published a book a Crime Novel titled,

"From the Past" and it's very good, I have found it difficult to put down..

Talented family, but put it down I did last night to read the Weekly Round Up from Voice..

Glad I did for then I read the Post and replied to the lady and from that came a Reply to me on a Theoretical Question ? How many folk have 2 people living with Cancer in their home,? I must say now rather Selfish of me or Naieve one of the two for sure!

I received a Reply from Garstongal this morning and her story is so much worse than my situation.

My heart goes out to her and the family involved especially with two small boys her grandsons having just lost their Daddy and now she and her daughter are faced with her husband being so ill..

Life can be very cruel and this family have had devastation rip through their lives..

Which is my reason for posting today,

" No matter how bad we think we have it, there is someone Worse Off than yourself " it's quite true..

I wish both these ladies All the Very Best and my Thoughts are with them..

I thank those that have known about us from the beginning for their support, I am truly blessed to have their support..

Whatever guides us definitely picks it's victims and timeing..

Last year for me was a Nightmare, ET MF on the Friday before Royal Wedding (Harry and Meghan ) on the Saturday a letter told me I very possibly had Breast Cancer I had Surgery in June and waited with bated breath for the All Clear in July..

I was glad to see 2018 over but hey ho we are off again this time it's the hubby..

That's the Brass Tacks of it and Maz has been wonderful as she is with All of Us..

Steve in Oz advised me to share on Voice months ago, I declined and neither did I share on his endeavours of MPN Mates Australia..

No matter where it is, help and research into the One thing that Unites us our particular flavour of MPN..

Let us hope that those who come behind us have better options open to them..

I will be attending London on the

16th November and look forward to it with Enthusiasm..

Absolutely gutted there isn't a Newcastle Forum this year, I was looking forward to my flight up North and 2 nights in the County Hotel with good old fashioned manners for guests, especially single female traveller I felt very safe indeed last year..

Hopefully someone will take over the role that Dr Johnathan Wallis has left..

I must check on the Fastnet Race on his Endeavours in Aid of MPN's...

Big shoes to fill that one, not easy for any candidate I suspect to perform so well at Forums very nice and knowledgeable Doctor with great Empathy for patients..

It's just London for me this year, maybe put faces to names of the generous folk on this Forum..

Whatever is going on with you, I hope you have a good Monday and to those In Need, I hope you get the Help you so Deserve... 😊

Mary xx

36 Replies
oldest β€’ newest

My lovely friend, BIG HUGE kisses and hugs to you and Ken, and Bart sends a 'lick' as well.

Maz xxxxx

1 like
Reply

Thank you Maz,

I send Bart a hug too he is a beautiful dog..

I trust you are well and Pete too obviously..

I know you are a busy lady and Summer in Devon brings loved ones calling..

Enjoy whatever you are doing today, I note you are as Dilligent as Ever..

You don't miss a Post, makes one take stock of their own reality, whatever that may be!

This Forum has a Beating Hart and you my friend the Leader and Pacemaker that beats out a Rhythm and keeps Pace and Fairness at All Times..

Lord help any Shinanagins trying to Pass by You 😳🀣

Have a Good Day Enjoy your Walk with Bart, have a Paddle for me..

We intend to do some Padding in Devon during this break for Summer for Ken..

M xxxx

1 like
Reply

Thank you my lovely, yes we are all well and enjoying the summer down here in Devon, bliss!!! Getting ready for the grandchildren coming in a couple of weeks, chaotic but fun with them all. Really hope that you and Ken do make it to Devon it will be great to see you. x x x x

Reply

Hi Mary - just wanted to say hello any empathise with you. I was diagnosed with PV a couple of years ago. Hubby with advanced bowel cancer last August. He isn't going to survive it, but I'm grateful he's still here and we're still able to share some fun, if a little (lot) less active, times together. Hope things go better for your hubby and you. Wishing you both well.

Liz xx

Reply

Hi Liz,

Thank you for the kind thoughts I feel for you too..

Funny how we scratch the surface and suddenly we discover many are walking a tightrope..

I have nursed so many patients after Surgery for Cancer, Bowel & Bladder and always felt for them & hopefully gave the best of care..

When Bladder Cancer walked through our Front Door, I really understood how it truly affects the wife or husband..

It's hard on the family unit totally, my husband had a Catheter in situ, and he found that so hard for 12 days..

I agree it's good to share as many happy times as possible.

I wish you the Very Best Liz and as many Happy Occasions as you Both can manage together...

Mary xx

1 like
Reply

Wishing you only good times.

Judy

Reply

Hi Judy,

Thank you much appreciated..

All the Best

Mary...

Reply

Hi Mary. I read your post. Would you consider for your husband to take part in research? I read of trials of new drugs and personalized therapies. If so maybe Maz could help with that?

Reply

Hi Kelly,

Thank you for the kind thoughts, much appreciate your thoughts on Therapy..

I have explored all avenues of therapy and drugs with him and his Consultant.

He is sticking with his current regime..

But thank you for thinking outside of the Box..

Mary 😊

1 like
Reply

All the best for you and your husband Mary. God be with you!

Reply

Mary, what a harrowing journey this must be for both you and your husband. And yet, you find the time to advise and comfort others. What a remarkable lady you are! It’s no surprise that you come from a nursing background.

Along with your story, I have been deeply touched by all the others too. How hard every waking day must be for all of you. I hope that you’ve all found some comfort in sharing your stories on this forum.

My thoughts are with each and everyone of you.

Mary x

2 likes
Reply

Hello Mary,

I have always noticed you are indeed a great councillor and help all those in need.

Thank you for the kind thoughts for all of us who find ourselves in difficult situations...

My situation is difficult but not as sad as one in particular..

My children are adults and our grandchildren have had both of us in their lives..

Our youngest two grandsons are aged 9 and 2 years unlike the two little boys mentioned earlier today who have lost their Daddy and Grandpa is now ill too...

Our grandchildren are lucky they range from 19 to 2 years...

That alone is a reality check for all of us...

Sadly Cancer strikes at will, I didn't see my MF coming and definitely didn't see it with my husband..

He has never smoked, drank Alcohol in excess and always been fit and healthy in that respect...

He is Retired Armed Forces and did break his back in three places years ago on a Parachute Jump..

His determination for 12 months in a Plaster Jacket ensured he wasn't going to be a Paraplegic..

So I stay strong for him and hopefully he can stay strong for himself...

Life throws all of us Curved Balls at times, it's how we deal with it and how we treat and help other folk...

You possess that quality of caring and saying the right things...

I believe that is all any of us can do, is to be generous with our thoughts and deeds...

Once again thank you Mary your kindness is truly appreciated...

I hope this finds you as well as possible and life is treating you kindly..

Mary xx

1 like
Reply

Hi Mary, I sent you a private message, Al

Reply

Hi mary,you are right in respect of curve balls suddenly being thrown our way in life and so unexpectantly in such a short amount of time. It makes us all realise life is precious and something we all take for granted sometimes. I hope your husband, yourself and family can get through this terrible time and somehow find the strengh to pull through. Hope your husbands surgery goes well and you get the outcome i'm sure you are all praying for. Sending you and all your family love and best wishes.tina.xxπŸ€—

1 like
Reply

Hi Tico

Thank you for taking the time to write, very much appreciated..

You are so right, we sadly do take life for granted.

Whilst we are all so very busy working and raising a family, we often do not notice time passing..

Certainly makes one take stock of life, when that curved ball bounces in.

Naturally we as a family hope for the very best outcome for my husband..

There is one aspect I am truly grateful for, we have raised healthy children and they have children of their own..

When I feel glum I remind myself of the good things, I do have in life.

We have never had a child with Leukaemia and such like.

That reminds me, that I can do this with my MF and hopefully my husband can overcome Cancer.

I'm also very lucky to have this Forum and all the goodness it generates, I agree with the concensus that, " we are a multi faceted family of sorts"...

There are a lot of good people on here, that always rise to the challenge and help by listening and supporting those in need..

We are a lucky group to have each other, and for that I am also grateful..

Many Thanks Tico, I hope this finds you well, have a nice evening..

All the Very Best to You.

Mary xx

1 like
Reply

Hi Mary,

I am pleased that you have felt able to bring us all up-to-date now with how things are for you and Ken. I am sure there will be a lot of love coming your way from us all to try to give you what care and encouragement we can in this immensely difficult and challenging time for you both. You have been a wonderful support to many of us with your thoughtful comments on the forum, and now it is our turn to do what we can for you!

Kind Thoughts and hugs,

Peter & Laura in NZ xx

2 likes
Reply

Dearest Peter & Laura,

I can but say a very big thank you, I have been immensely lucky to have your support these past few months..

You have brought Sunshine into my World, when I have needed it most..

You are absolutely inspirational and often bring warmth and humour to All on the Forum..

On that note remember to lean on us, when you are also feeling rather Blue...

So Dear Friends I thank you for all your kindness extended to me, and Always Brightening my Day with your wonderful pictures and gentle words of encouragement..

Ken is appreciative too, for him to know I have this network of friends gives him comfort..

I think we all recognise, that it is often much easier to talk to a Blood Brother or Sister of things that others Do Not Understand..

We are a Very Elite Club, and on balance between all of us I believe there is more knowledge floating around here as opposed to the humble GP that has a full plate..

I will PM you shortly, hope this finds you both well and Spring is in the Air for you..

Love Mary 😘😘

1 like
Reply

Dear Mary,

I’ve been out of the loop these last few days. So sorry to hear about your circumstances. It’s horrid what you are going through.

When I read about situations like yours it makes me realise that my job lot is insignificant and it stops me from feeling sorry for myself when I hit a rough patch.

Nothing I can say will change your circumstances.

All I can do it wish you well. Despite your troubles you have still managed to acknowledge the achievements of others. To me this shows how strong you are.

May this strength and courage continue.

Love and hugs

1 like
Reply

Hi Wyebird,

Thank you for the kind reply, I hope you have been " out of the loop" for good reasons, something nice..😊

I often see you post a reply and it's always straightforward and helpful..

It's folk like you that makes this Forum a safe haven to express our thoughts and fears.

May I say with the greatest respect,

Your job lot is Very Significant, we are all members united by having an MPN to deal with and that is significant...

Sadly along the way other things happen in our lives which adds to our situation..

Unlike many people who are suffering hardships, sadness all manner of issues, they do not have the opportunity to share their troubles as do we, on here..

I quickly realised last year that this wonderful Forum shares many tales of woe, which is only possible as someone in the drama of life has an MPN...

Thus I consider myself lucky to share my tale and very grateful for the support I have received from the good folk here...

I remain as strong and hopeful for my husband to keep things positive, his Immune System is being tested at present with the treatment, so good nourishment is hugely important.

I spend time in the kitchen cooking good food plenty of vegetables and some of his favourite meals and Desserts..

Only problem there is, my Adult Married Sons & Daugters come in home and say such nice things about the Baking and Puddings from their days, I find myself baking Double Quantities, as the grandchildren are discovering Home Baking is much nicer than shop bought..πŸ‘

Hubby is loving it and loves good old Rice Pudding with a sprinkling of Nutmeg that's his request for today..

Tomorrow is Apple Tart after a Roast Dinner for 5 adults and 2 small grandsons..

Thus the family are supporting us and I'm indulging their tummies..

When Ken is interacting with the 2 & 9 year olds it transports us back to the days when we had 4 of them to care for..

I will add tomorrow my daughters help with dishing up Dinner and they clear the kitchen afterwards..

There is not one hint of Cancer mentioned, the 9 year old misses nothing..

And I have the satisfaction of knowing I have fed my hubby and family good food and I get to sleep quite well that night..

I do our children in shifts especially now, it's too much otherwise.

Next it will be the sons and families turns in a few weeks or so, we are hopeful of getting down to Devon for a week in a hotel once the weather cheers up again..

Naturally we dine at their homes too, but at present we are more comfortable in our home and I'm not rocking that boat...

So I genuinely give thanks for what I have got and I often recall patients I have nursed, that nobody really cared about..

That is also a blessing in one sense, I know how to treat this situation sadly I have done it far too many times during my career. Which I'm not so long ago Retired from....

When I see your name I always imagine you to live in the

Wye Valley ...

If you do live there, it's a rather beautiful part of the UK and somewhere we often visit hubby and I..

We start at Tintern Abbey have a nice walk along the banks of the Wye eventually eat at one of the Pubs in the Village then make our way back across the Severn Bridge into Somerset..

(However I hail from Wales 12 miles from Cardiff, but lived here a long time.. Husband is local and Weston Super Mare is home for all of us.)

Ken's mum hailed from Hewelsfield in the Wye Valley..

If I am wrong then you now know there is such a beautiful spot called the Wye!

I hope this finds you well and you have a nice weekend despite our very stormy weather at present..

All the Best to You with Hugs

Mary 😘

Reply

So strange. I got married in Cardiff. Hail from kingsbridge near Gorseinon. Been out of the loop because I visited the Gower with my friend and reminisced my happy childhood . No signal.

I now live in Yorkshire.

Lol stopped in the wye valley over night whilst on the way to Wales.

Taught in Yorkshire for a number of years hence Wyebird. There was an owl called wyebird on television. She had a strong welsh accent. The children nicknamed me after her. I laughed with relief when I found out. Secondary children can be so cruel.

So wish I lived near you. You’d be feeding my tummy with your homemade wares too!

Reply

Hi

Our world is small, I spent many happy summers in Swansea on the beach as a child..

Our mum lived in St Helens near the Crown Court..

I have good friends in Llangland Bay and Sketty...

I grew up in Pontypridd, South Glamorgan..

Almost moved to Gorseinon as a teenager..

Knew the area well, ended up living in Llandaff North, Cardiff.

Married and ended up in Knaresborough just outside of Harrogate for a few years..

My great grandparents hailed from Swansea and their surname was Lougher !

Great Grandpa was related to the Dunraven Family at Dunraven Castle and directly to,

Lord Dunraven way back in the annuals of time and tide..

I understand how Secondary Age Children can be challenging, it could have been so much worse..

How nice to stop over in the Wye Valley and continue on to Gorseinon..

Sometimes nice to step out of the loop..

We would like to take the grandchildren to see the lights and Shop Window Christmas Displays and stay just off the Stray at the Crown and visit Betty's Tea Room not just for the Window Display we think they will love Harrogate..

Well I wasn't too far out you are Welsh...

Have a nice Evening

Mary 😊

1 like
Reply

Dear Mary,

What a beautiful but heart wrenching post.

You and your family have gone through so much it just isn’t fair.

This is a cruel and heartless world we live in so to read your post gave me hope that there are still people out there that care and comfort others no matter what they are going through themselves.

I have learnt now that it is best not to be so stoic, both for my emotional and physical well being and to let others into my PV world.

All I can say is you are an amazing, kind and caring woman and I will keep you and your family in my prayers.

Please keep us up to date with your husband as sometimes it is far easier to write words to strangers than to talk to family.

God bless you Mary xx

Reply

Hello Jilly,

You too are an amazing lady and I recall you yourself going through drama recently ?

I sincerely hope you are now doing well and all is resolved hopefully?

I agree life is hard at times and we are bitterly tested..

Last year I thought it would never stop for me, the ET info I received alone, having always had Anaemia I assumed the Haematologist wished to discuss that with me..

Like many Surgical Nurses I had zero knowledge of MPN's and walked out somewhat dazed with the information on HU in hand as I refused the Perscription..

I needed to know more before taking the Pills as such..

Like all of us I eventually agreed with trepidation and my journey began..

Next was 2 BMB again I was confident and treated it as routine to establish the facts..

You could have knocked me down with a feather that Friday morning realising I had MF..

Hubby and I were stunned, I was the one taking care of other people in that very same Hospital, not the Reverse...

I recall balling my eyes out under the Shower so nobody could hear me..

Like you being Stoic, I will deal with this attitude..

That following day when that letter arrived about Breast Cancer, I couldn't believe the timeing..

My husband trying to put a brighter spin on it quoted, " lots of ladies lose a Breast" now I realise he actually didn't know what to say to me..

I was furious, hurt, sad and battered so again I was in the Shower crying once more...

I was already a member after ET Diagnosis but didn't want to share this other aspect, a Faulty Boob is Not MPN..

I posted about MF and you kindly replied to me on both posts ET & MF...

I PM JaynieQ with Boobgate and she was absolutely wonderful with me & supported me through everything with Boobgate 😊

Jaynie was the first to respond to my ET Post and I was very grateful to her and Always will be grateful..

You know how these things drag on first Consultation in Bristol, 2 weeks later Surgery Day!

I sat with Ken in that waiting room and wished I was dead, how much more was there coming at me ?

I watched a young woman emerge Ashen Faced, sit next to her husband and I could see her say it was awful..

Nurse comes along and she puts a smile on her face and says, she was fine !

She was anything but fine, at that point I had a total melt down, crying about all of it ET, MF Boobs I didn't see the MacMillon Nurse haul me out of the waiting area, I only heard her ask my husband did he have my bag etc..

I ended up in a Private Room and I told the Nurse how this was All too Much ..

Everything I had been hiding came out in that little room, and it was just as well it did..

Reality check was when the Surgeon came to chat & she was lovely and she suggested I wasn't up to it that day..

I told her " please do it today for I cannot wait any longer " I had the Surgery and 5 long weeks later I received the All Clear..

That episode taught me much, not to stoically isolate oneself and share what you are thinking..

I simply didn't put Ken's tale on here, for he is not a member and I

always like to reply individually to good folk such as you..

I didn't think I was up to it, as usual the kind and generous folk have responded and like you it has reminded me how much goodness is on this Forum...

Our world has become very Selffish in many ways sadly..

However scratch beneath the surface and there is a lot of goodness to be found..

You are Always Generous with your Posts and I have always admired that..

Don't ever feel you cannot share whatever is hurting you, I will always be happy to hear about your PV World Open or PM, I agree it is easier to tell folk we don't know, what is really going on in our heads...

I learned the hard way to let folk in, and my poor husband had never seen me lose the plot in 40 years..

Nurses are trained to hide a degree of Emotion for good reason, you would never provide the Care Needed if you started weeping with the patients..

For me personally I hope I have always given good care and wise council..

The gentle touch of a hand and a word of understanding is essential to good care..

Now it's the turn of my hubby in that sense, he hated the Catheter for 12 days and didn't like me dealing with the mechanics of it..

I told him one night, " if I had a pound for every time I have unblocked one of these, emptied one " we would be extremely wealthy...

If it's not me then I need to get the District Team in..

His reply was, " if I have to suffer the indignity of this, I prefer it to be you"...

My reply was, I suffered the indignity of Childbirth this is like for like 🀣 He did see the humour intended...

So Yes we are Lucky in that sense and I'm extremely lucky to have you folk...

Whatever you are doing today, I hope you have a nice day with your family and husband..

All the Best to You Always

Mary 😘😘

Reply

All I can do is send you a virtual hug xx

Reply

Hi Lizzie

Thank you for the Hug πŸ€— most grateful to receive it..

I hope this finds you well and hopefully you will have a nice weekend...

All the Best to You

Mary xx

Reply

Sending love and light to you and your family Mary β€οΈπŸ’™ And to all on here xxx Carolann

Reply

Hi Carolann,

Thank you for the lovely post, it's much appreciated..

I hope Love and the goodness of Light dwells with you Always..

All the Best to You

Mary xx

1 like
Reply

'Time and unforeseen circumstance befall us all ', a bible verse tells us but some people get more than their fair share another certainly some even more than that!

Sharing like you have done is a brave, cathartic, therapeutic, caring, supportive thing. It releases a little pressure out of your head I am sure but the kindness it extends touches many levels, some which are indeed, there are those who are worse off than yourself, I am not alone in this world with these problems and on a more basic level it makes this site/forum feel like a genuine MPN family, we are spread all around the world but give this instant ( allowing for time lapse ) support which is genuinely ment, technical stuff often comes from Steve and Paul, Peter with Biggles urging us ( and himself ) on with gentle humour are just to name a few as there are so many lovely people who support MPN voice.

Of course what's said/suggested isn't always for everyone but it seems every one here so far, is a capable ,competent adult , able to sift through to see what is helpful for themselves, indeed this site with all you wonderful people have been my MPN lifeline for no one in my sphere, including the medical people knew anything about MPNs so couldn't help me.

So on that note I want to bring something different to the table, it's not for debating just personal information and reflection. When all these things happen often the head is filled with WHY WHY WHY! Why when with all the medical advancement why we are still ravaged by diease? Will there ever be a time when there Will be no sicknesses and death ? If there is a God why dosnt he do something?

JW.Org website directs you to the bible for answers , not in a boring stuffy way but with very interesting articles, colourful videos or pictures, those of you who are very technically minded will love all the scientific research. Ofcourse the main reason for the website is to direct attention to the one who designed everything first, for instance it's taken for granted but is still amazing that man can navigate across the oceans but look up the monarch butterflies migration on the website. or think of time, those intricate clocks and watches , wow they took some design but look up to the heavens at the amazing universe so precise in its movements man can send rockets to land on other planets! Could go on and on but am wasting time! Time that could be used doing more research on this amazing site.

One last thing the one who did all this designing first has a name, found at psalm 83:18 that's chapter 83 verse 18 and he has a purpose for this earth and mankind, all to be discovered if you are interested.

Thank you again for sharing Mary, hugs and xxx to you both.

1 like
Reply

Hello Bridie

Thank you for the kind reply to my Post..

Yes many things are sent to try us and no matter how the individual deals with it, we often find our way through such hardships..

Obviously some are not so lucky in their situations, we can but hope they overcome their issues...

I agree with you there are wonderful caring folk on here..

That includes an absolute wealth of understanding and knowledge and the ability to share the knowledge is wonderful too...

This Forum is a Lifeline for many and Maz is Always so Very Helpful to each and everyone of us...

Research is Paramount for the World to understand MPN's and move forward..

I support Research here in Uk and MPN Mates in Australia, there is a fundraiser taking place there too into Research for MPN's ..

Our fellow member Steve, saw the need for a Forum in the Antipodes to raise awareness into much needed Research and is indeed himself up for the Ultimate Challenge of a Cycling around Australia to raise awareness in MPN's and the need for Research All over the World to gain momentum into the necessity of the much needed funding to find a Cure..

Apart from SCT for those with MF..

All of the 3 Flavours of MPN are hard to live with..

Let us hope that those that come after us will fair better, that would be a wonderful achievement..

All the Very Best to You Bridie and Good Luck with your Endeavours..

Mary xx

Reply

I have seen your posts on here in the past, but I was so sorry to read this one. My heart goes out to you. All I can say is to take as much enjoyment as you possibly can of the time with your husband and I wish you all the best.

Reply

Hi Bluetop,

Thank you for the kind post and yes my husband and I do intend to spend as much time together as possible..

I remain hopeful that he may overcome his Cancer if he is lucky with his treatment..

We will know in October how that is going..

Whatever you are doing, have a nice weekend..

All the Best

Mary 😊

Reply

Hi Mary, I have read your post and deeply feel for you and your husband. Sending you lots of love and hugs from Australia πŸ’•β™₯️

Reply

Hi,

Thank you for the kind wishes much appreciated..

We are certainly Global which indicates just how many of us are suffering with MPN's..

How nice that you now have a Forum set up locally..

mpn-mates.com ..... The brainchild of a fellow member here that realised there is a need for Research in Australia into this real pain of an illness..

Steve is also doing a Cycling Challenge around Oz to raise funds and awareness of this condition..

We definitely do need more Research and by different countries all working towards finding a cure apart from SCT has to be Good for All of Us..😊

All the Best to You

Mary 🌏🌻

1 like
Reply

❀️❀️❀️

Reply

Hi Mary you are in a horrible situation being unwell yourself sending best wishes it must be so hard on you and I hope to go to the London forum to take care Poppy

Reply

Hi Poppy

Thank you for the lovely reply, yes it is difficult but that's how life goes..

Have you booked London to Reserve a Place, I believe this Forum will be Excellent and well worth attending from what I heard at Newcastle last year..

This is one I wouldn't want to miss personally..

I'm travelling from Bristol area, will you have far to travel ?

If you do go maybe we can say hello in person, always nice to put faces to names...

Good Luck to You Poppy.

Mary 😊

Reply

You may also like...