It was brave but cruel battle, that ended peacefully on the 14th of May 2017 (Mothers day)
The prospect of being a truly single mother of 4 is incredibly daunting but we have plans and we have hope.
...However, I do have a request for you all. Charles is currently sitting on a shelf at the funeral parlour and I can´t get him as I am struggling to pay the funeral fees.
I have calculated that if I can find 165 of you lovely people to donate just 20 euros/pounds/dollar I can pick him up and finally lay him to rest.
Obviously I have the Funeral parlour asking for their money. They were absolutely fantastic, really helpful, kind and have been very patient but they need some kind of intention... I have an appointment with them on the 10.10.2017
I have no way of getting to this amount of money in such short notice without asking for your help....
For those of you who dont know us or the full story, this is Charles in December of 2016
Initially when diagnosed in 2014 Charles had a tumour of quite significant size. (12x8) After 3 rounds of chemo and a months worth of Radiotherapy he was doing well. A solid man, powerful and impressive he took the treatments well, with a calm and light-hearted manner, always looking out for and after his fellow patients
During all this time, we had been warned of the possibility of the Cancer spreading to the brain and to look out for signs of confusion, dizziness and so… but all was “normal” and over two yrs he was continually given the “all clear” … tumour inactive.
Last summer in July, Charles, who had repeatedly told his GP during visits, of a pain in his right thigh and lower back, lost all feeling in his leg. Again, he went to his GP, who told him it was a muscle problem and there was little she could do. In fact that was the general opinion (even a brief visit to the a&e) amongst many, Charles unsure and knowing that he had to go see his Oncologist that week, left it and continued working for 4 days.
On the day of the Oncologists visit, things began to develop rapidly, he was sent for a brain scan,… and told to go home, BUT should there be any developments, to return to the hospital immediately.
That afternoon, his left leg started to give way.. and by the evening Charles had no feeling in either legs at all and was taken to hospital - The Cancer had not travelled up to the brain, but down his lower back and onto his spine, causing a blockage to the cluster of nerves that serve the lower body.
This is a rather rare development for Lung cancer patients but not unknown.
"If lung cancer spreads to the spine, it may put pressure on the spinal cord (spinal cord compression ) which can be a medical emergency. This may cause weakness or tingling in your legs or difficulty walking."
The signs were there but had not been taken seriously. It left him permanently paralyzed from the waist down. A truly cruel fate for anyone and especially for an active and incredibly social man
Charles battled on for 8 months, throughout which time we experienced many heartfelt and amusing moments, he maintained his funny and witty outlook on things, always making sure that those around him felt good.
As Charles and I were officially divorced and he was in Vienna as a freelancer, we encountered many different types of financial crisis on top of the everyday.
Eventually with regards to his medical coverage, and in our opinion due to the fear of Brexit, Austrian bureaucracy began to dispute his eligbilty for finance towards his home care or any chance of a bed in a care home It was insisted that he apply for a “Daueraufenthalts titel” – Permanent Residency, which included making a personal visit to the department and taking an exam in German. A ludicrous demand for a paralyzed cancer pateint, but nevertheless one that they seemed to see no problem with.
So the last 5 months were spent at home, making me his full time carer
- 3 of those months he was at my mothers, with the help of mobile nurses and careers, whilst we tried to apply for this residency.
- And the last 2, at mine, with just myself, the children and his wonderful sister, no daily careers, no nurses, as we had been refused … we did have access to some very wonderful palliative care, a voluntary organisation for which I am incredulously thankful for and would love to find a way to support in the future.
Charles was no saint by any stretch of the imagination
driving nurses (and some Drs) insane with his overzealous and eagerness to keep moving, to pretend all was “just fine”.
Something I continue to find difficult to understand, was his inability to give up alcohol or to stop smoking, it breaks my heart, for my children, for me and for him.
He was only 57. A man who possibly saw and experienced more than many of us put together. A man tormented by his fate in life .....but overall he was a wonderfully kind, sensitive, funny father and partner, who is greatly missed.
We would like nothing more then to put these last few years behind us, to lay Charles to rest and start our next journey.
We sincerely thank you for all your support and encouragement so far. It truly means the world to us.
- Jason Winer
- Mike Coughlan
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