Hi
I was diagnosed back in October following a fall downstairs (bleed on the brain, top lip hanging on by a thread) and they found the AML. I also have the NPM1 mutation.
I’ve had 2 lots of Fla-Ida which seem to have put me in remission, I’m just waiting for the results of my last bone marrow regarding the NPM1 levels as this will determine whether I have to have the Allo Stem cell transplant.
Im struggling with memory and concentration issues - triple whammy of head injury, chemo brain and menopause brain! And I also find myself getting very emotional over stuff. Slatting the PIP application form across the room because it was making it all very real just how much I’ve been affected.
I’m craving normal - and I’ve got to find a new normal I know. But I long for the days when I was just Lins - mum to my 2 fab kids, and Sister on my hospital unit. I really don’t like being the patient!
How have you all coped?
Hi Lins and welcome to the Community but always sorry to see folks find the Community.
A blood cancer journey can indeed be full of twists and turns and from your first post and profile you have had your full.
With regards to completing benefit paperwork - you should get help from a professional so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing or even use our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
I have been through two Allo Stem Cell Transplants for a rare type of NHL so you will find our Stem Cell Transplant group a great help if you find yourself on that road and we do have a number coming from an AML with children background.
Looking at the long game and having to deal with having patience will take on a new meaning.
Always around to help out as best as we can.
