Hi All, I know its been awhile and I’ve been trying to keep you up to date with shared blogs… There’s some great blogs and bloggers out there… 🙂

Too be honest a subject i’ve covered before, honesty that is… lol…

Im struggling…

As you will know if you’ve read my other posts, last year my partner who is my carer started having problems with his knee… nothing to serious the Drs said just a strain… months of Physio no better… Mmmm must be something else cracked cartilage maybe… X-rays and MRI done…. Mmmm you do have a cracked cartilage but ‘Thats the least of your problems’… You have undiagnosed white blobs in your bone… Hu?…

We are referring you to the Nuffield Orthopaedic Centre in Oxford and getting the tumor specialists to look at it… ‘ but dont worry it wont be a tumor or any thing sinister’… ‘we are just being careful’…

Three months of up and down from Cornwall to Oxford…(I had no idear how costly that was going to be) We need a biopsy we dont know what it is… Biopsy done…

We need a bigger sample we still dont know what it is… ‘We have the top Four tumor specialists in the world looking at it… they dont know what it is’…

Bigger op, big scar…. Larger sample obtained… silence………… GP has results…. ‘It’s a benign tumor… nothing to sinister’…

New appointment in Oxford….

Err… ‘its NOT BENIGN… ITS CANCER… and needs to be removed’…GULP!

Op arranged to completely remove the knee and some bone above and below the knee joint…. Op performed total knee replacement 13 cm above and 3 cm below the knee removed… massive scar… partner on cruches with a cricket splint…

Home…

one week later back in hospital with phenomena and two blood clots in his lung… Put on Warfren to thin his blood and remove the clots…

Home…

Finally he gets a diagnosis… Psedomyogenic Hemangioendothelioma…. Breath!  (Dyslexic Panic Over) one of the rarest cancers in the world… (he couldn’t just pull a muscle like everyone else…)

All things being equal we are hoping he continues to improve now… fingers crossed…

So I have been on a massive stress induced learning curve… How do you organise adult social care… what adaptations do we need… what funding is available… what funding can he apply for etc etc etc………….

Macmillian where great and continue to be very helpful…  the Carers Uk have helped as well giving me some idea about who to contact regarding help, Adult social care have been amazing if you google adult social care and your location you should be able to find out how to access your local services for care support and occupational therapy… for gadgets etc..

Although now we have reached the limit of our free emergency allocation it will now depend on our income as to weather we continue to get help, not sure how we will cope with out, as my health is nose diving fast…

And through out all this i’ve been juggling the finances, being a disabled person myself  our income was always limited but now my partner cant work and probably wont be able to for several months more, money and how to pay everything is becoming an increasingly difficult juggling act… So what do all these agency’s recommend as far as finances are concerned seeing as Statutory sick pay is approx. £700 short of his usual income… Apply for DLA they all say… apply for DLA… like its easy… like it’s going to be the answer to everything…

trouble is…

with his splint and his cruches he can walk, not far and not for long… hopefully we can get an application in under the PIP wire… but im not sure if thats possible or not now… So lets say we apply and hes successful… how long will it be before hes re assessed as a relatively short term health problem as not deserving because he can stumble 20 metres regardless of how much pain he is in and what equipment he needs to achieve it… He wont be able to say, but i cant do it reliably, repeatedly, in a timely or safe manner because these previsions are not protected in law, and are just airy fairy guidelines that any assessor can choose to ignore…

And all this will be repeated sometime in the next three years when they reassess me for my tiny £20 a week low rate care that i use to get to work… at which point i will most likely have to give up my job and close my business… really looking forward to that and destitution… hopefully hubby will be back to work by then with no more cancer problems and i can live of his income, have no income of my own and be completely dependant on him,  because he earns enough to feed us all… not… this is Cornwall… we are some of the lowest paid workers in the country with one of the highest costs of living… oh the joy thoughts of the futre bring…

Alternately you can help me fight the PIP criteria, that significantly reduces the chances of anyone qualifying for help, with a range of disability issues that they face everyday…

ways to help… visit Fibro girls blog at act-now-to-fight-for-your-independence

or got to the We Are Spartacus website at pip-emergency-act-now

Our chance to fight the changes to the PIP criteria is time limited we need to make a big noise fast to get lords and Mp backing our claim that 20 metres is to short a distance to asses people with a variety of disabilities by and we need RELIABLY, REPEATEDLY, SAFELY  and IN A TIMELY MANNER protected by law so it will be applied routinely in every case not just occasionally applied when an assessor remembers to do it…

Sorry for the rant needed to vent… normal activity will resume ASAP…

and just incase you are wondering how far 20 metres isnt… heres one of the pictures I made earlier… 🙂

Bus to Bus PIP1

FIGHT NOW… SO SAY WE ALL… Dxxx

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