Hello, thanks for reading, I am new here, I have MPN JAK II Blood cancer and a connective tissue disorder called Ehlers Danlos Syndrome.
Hospital are waiting for me to agree to start chemo but I must be well enough to find accommodation as I refuse point blank to surf sofas of family and friends with two big German Shepherds.
BBC radio 2, Jeremy vine show on rental and homelessness; thousands of people like me face homelessness because we can’t afford the house prices and can’t even find a caravan in a field that will take big dogs.
I haven’t claimed disability benefits or housing and don’t see why I should be a drain on society or the Tax payer given my husband since 1996 earns a very large salary as an A&E Doctor and Surgeon, but when I got diagnosed he told me he wanted “A partner not a Patient” so he had yet another affair only this time he froze all our bank accounts, took £79,000 in our business dividends, £46,000 from Halifax savings and he ran off with yet another Nurse and stopped ALL financial support for over a year to try and force me into selling family home so he could free himself from the mortgage without my getting my financial order sorted in Divorce, he’s told the court last week he’s desperately trying to Marry this September despite us not having Decri absolute until pensions are investigated and court order gives me my half, my legal bill thus far is nearing £28,000 defending myself from his relentless court petitions despite him losing them. Once the legal fight is over and I cash my pensions i know I’ll be ok at some point just not sure exactly where that point actually is at the moment.
The sneaky reason he is telling Court he’s got a wedding is; if that court had awarded him the Decri absolute; it would have voided my right to claim my half of a pension valued at just over 1 million. He’s desperate not to lose value by cashing it in or splitting it. He literally has a million reasons to hope the Stress or cancer kills me first. Just out of Spite I’ve decided to out live him!
Do not take pity on me please as I am grateful for every second of everyday that he is out of my life, I wasn’t allowed anything bigger than a Terrier.
I am the happiest I’ve ever been, loving life despite my life looking pathetic on paper, in reality, my life is turning out pretty AMAZING! Just hope I don’t end up living in my dogs kennel because they haven’t got one!
Once I’m settled somewhere I can enjoy returning to my Art
My daughter does get rest bite and we plan to live apart, she’s wasted enough of her life looking after me in one way or another. Yet, so many don’t get ANY breaks, so many are children and so many are disabled or infirm themselves, since 2020 all charities have suffered including safeguarding and supporting the vulnerable.
Hi Ykcin321 and I see it’s your first post so welcome.
I am sorry to hear about the challenges you are having to deal with and I do hope that things can get concluded and you are able to find some stability and move into your treatment.
I was diagnosed way back in 1999 with a very rare type of Skin Non Hodgkin’s Lymphoma. I help out around our various blood cancer group and I thought I would highlight our dedicated MDS/MPN/ET/PV/myelofibrosis (MF) support group where you may be able to connect with others who are going through treatment for MPN.
Macmillan have many support platforms so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too.
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.
Give me a shout if you need further help.
Best regards.
Hi Nicky, it’s amazing what the body and mind can deal with.
My type of blood cancer is also incurable. Over my 23 years I have various levels of treatment and I am now 6 years 8 months out from my last treatment and doing great.
Up until Sep 2016 I only ever had about 9 months at a time before moving into my next treatment but I have lived a full and successful life despite my uninvited guest in my body.
You will see from my profile (hit my community name) that I have a serious amount of treatment but in the whole most was ok and a means to an end.
Keep your hopes and dreams at the front of your mind….. ours were written in the back of the note books we took to appointments where we had our questions and all the j formation we were given………. I see hopes and dreams from many years ago have bug tusks beside then and new dreams added to the list 
