Young and diagnosed with an MPN

Hi Hannah12 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. I don’t have Myelofibrosis but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I appreciate the challenges of this journey well.

Let's look for some of the group members to pick up on your post.

You can also look through the various MF posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

Macmillan have many support services so do check out the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. 

We also have our Ask an Expert section but do allow a few working days for a reply.

We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and normally run Monthly Hematology Support Groups.

Always around to help more or just to chat

Hello Hannah 12,

Sorry to read of your MF diagnosis and in one so young. I read that it usually occurs in older people like myself. I was diagnosed with MF almost two years ago and although my plateletts continue to rise, albeit slowly. I feel well and try to continue doing so by not focusing too much on the disease, eating healthy and exercising while possible. 

best wishes,

Naugus 

Hi Hannah12 so sorry to see you joining us, I'd rather have met you elsewhere. I don't have myelofibrosis, I have myelodysplasia (MDS) and was diagnosed in 2015 after a long time of trying to find out what I had. I was already going to haematology appointments and it was only when I was admitted to a&e after collapsing at home that my haematologist arranged a bone marrow biopsy. I was diagnosed with MDS which I had never heard of. I was 57 at the time and considered young to have MDS, but 13, wow what a shock that must have been for you

It's bad enough that your husband ignores it but for your in-laws not to believe you is unacceptable. Where is your support from within the family? Inexcusable. Can your GP help with your husband's attitude? Perhaps he could invite you both in. Does your husband attend appointments with you? I sincerely hope he does! 

I really hope your family's attitude changes however you'll find a lot of support here so keep posting Hannah. Looking forward to chatting with you. There's a group called Chat, so pop a post there and you'll meet some lovely people.

Take care and stay safe Hannah

Tvman xx 

Hi Naugus.

My platelets always rise and now my red blood cells are beginning to drop. I feel like a human pin cushion at the moment

Hi,

I think my husband blanks it out as so many of his family have had cancer before to the point where it seems normal? He has attended a couple of appointments and I am bringing to my next one on the 31st August 2022. 

My family support consists of my mum... when she isn't crying.

I find, Hannah12, that the best people who understand what you're going through as well as for good listening, are fellow cancer sufferers. Not sure about GB but in Northern Ireland the spouse of someone who has had a cancer diagnosis is legally allowed to attend an appointment. Here it's any cancer but I think in GB it's only certain cancers but of course if you work for a small company and are essential to the company then it's not compulsory that they can let you go..

Hopefully you'll be around a long time and your mum will get used to the situation

Tvman xx 

sorry to hear that Hannah12, hope you have been able to visit the sites Tvman suggested for support.

stay in touch,

Naugus

Hi again Hannah12, you are getting some great support……. have checked out the links I gave you in my first post?……. you sound as though you would benefit from some face to face support 

Hi hannah I have mylofibrosis and am getting ready for stem cell transplant.

Their is a mylofibrosis group on FB which I have found so supportive informative and knowledgeable.

It's a lonely journey, the invisible illness but its real and you need to be able to ask questions and that site will give you a safe place.

Hi Ammadores, just noticed your comment about going into Stem Cell Transplant (SCT)…… and I noticed from your profile that you are in Glasgow…… if this is the case you will most likely be having your SCT in the Queen Elizabeth.

I have had two Allo (donor) SCTs (fir a rare type of Lymphoma) both at The Beatson…. so although I dont know what the SCT unit is like at QE (Although I have talked with others who have been treated there) I know the SCT process very very well.

I see you have actually joined our dedicated Stem cell transplant group…… why not come over and put a post up and introduce yourself to the folks at n the group.