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The Butterfly Hospice Trust are delighted to announce that the East Region New Look ladies fashion stores have chosen them as their annual charity for 2014.
The region chose the Butterfly Hospice as one of their employees in Skegness has been a long term supporter of the charity.
The east region stores cover an area from Boston up as far as Bridlington and Scarborough, taking in Lincoln, Louth and Grimsby plus others. Each store will be organising various fund raising events in their area. It is hoped that our Annual Butterfly Release this year will incorporate multiple releases throughout the east region stores and raise awareness of the Hospice to a much wider audience.
New Look have kindly given the east region store managers the opportunity to get more personally involved with the charity by allowing them 2 days to work with staff and volunteers at the hospice.
I want to share with you the reason why I started the charity "Nick's room" at the Butterfly Hospice.
It all began for me in 2006 . Until then, I now know, I was absolutely blessed with a care free life, a bad day for me would have been to break a nail or get stuck in a huge queue in my dinner hour - you know the irratating stuff we all deal with. My world fell apart on November 12th 2006 when after a few tests on what we thought was a pulled muscle we were told very coldly that my beautiful son Nick, then aged 23, had cancer and the prognosis was he had approx 6 weeks to live. It was 5pm on a Friday evening and we were almost pushed out of the consultants office so they could all begin their weekend. We were given no support, no advice and I had no idea where to turn. I remember thinking on the drive home, this can't be right where are the people who pick you up after this sort of news and guide you, well unlike on the tv, they never materialised.
After a very short time it became apparent Nick's cancer was very aggressive and he deteriorated rapidly. His pain was immense and no one seemed to be able to control it, after various spells in hospital and days spent waiting to see a doctor he would be discharged in as much pain as before.
I was going out of my mind trying to find a way to help him when we got a lifeline in the shape of a MacMillan nurse. She immediately suggested we needed the services of a hospice, at which point I completely broke down, I thought this was where you went to die and I wasn't ready to let him go at that point. She managed to secure him a bed and assured me it wasn't a one way trip just the best place to assess his needs.
The nearest hospice to us was a 90 mile round trip but within 2 hours of arriving he had been admitted, seen a doctor, had a treatment plan established and for the first time since diagnosis he was pain free. It was 2 weeks before Christmas and far from what I was expecting the hospice was a bright cheerful place where, unlike the hospital, everyone seemed to smile, sounds silly but this was so important. There was a real family environment too, no rules on children visiting and you didn't get asked to leave at certain times.
I had been desperately dragging him around most major teaching hospitals in the country trying to secure him a place on a drug trial as there was no other treatment available under the NHS, when I told the hospice staff they managed to organise an appointment with a consultant who had been refusing to see me. To say I was grateful doesn't even come close, for the first time someone cared as much as I did enough to give Nick a chance.
The downside was the distance, it was exhausting driving every day and I was lucky to get 4 hours sleep as time was so precious. I was trying to juggle the impossible, a dying son in Lincoln and an 8 month pregnant daughter in another hospital 35 miles away, who was still in shock over her brothers diagnosis. Many family members couldn't get to see Nick at all due to distance and work etc.
Once he was settled into a pain management plan he was discharged unlike the hospital which sometimes felt like a prison to get released from.
Nick was determined he wanted to end his life at home with us, but towards the end the pain was unbearable and the day before he died he was admitted to hospital, as regrettably no hospice beds were available.
He was one of the lucky ones he had the dignity of passing away in a single room. During the many times he was in hospital I witnessed quite a few people pass away in a 4 bed ward, some during visiting and one didn't even have the curtains closed. This was so distressing it took the staff 20 minutes to even come and check him which I found disgraceful, I had at this point closed his curtains - poor man.
The wards were full of, and aimed at old people as it was a rarity for young people to be on the oncology ward, thank goodness. There was no one his age to talk to and the staff didn't know how to be with him, often avoiding him or treating him either like a child or an old man both of which drove him mad.
Having seen both hospital care and hospice care it is so important to get the correct care for the patient and relatives. In the hospice we felt supported as much as Nick did and that took the pressure off me and allowed me to just be his mum and enjoy the time we had left together.
None of us know what the future will bring and we are told that 1 in 3 of us or our loved ones will be touched by cancer at some time.
Before Nick died he wanted to make a difference and stop others having to go through what he had experienced. He had a vision to have a room in a hospice in the heart of a community that would cater for younger people and offer facilities such as laptops, games systems etc and to be able to get fresh air. The ward he was on was on the 7th floor and he had really bad panic attacks towards the end, all he wanted was to get outside, but hospital policy was not to allow this unless you could get out of bed.
Such a simple wish to get fresh air but I couldn't grant it to him.
So that was where my journey began to fulfil my sons dying wish, it has been a long journey and it isn't over yet but thanks to many people who have fundraised along side me we have built the hospice, funded the room and have a plaque with his name on and I'd like to think he's looking down thinking "mums done good"
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