and 'thank you' feels inadequate …..
After a challenging and roller coaster of a year it is difficult to find the words that sum up our feelings.
We had the wonderful experience of taking Nick home from Harefield Hospital on the 22nd November! It was wonderful in a number of respects. He had survived possibly the most severe of operations and he looked so well and happy. He was leaving hospital after almost one year to the day. He coped incredibly well on the homeward journey by car and ferry much to our surprise but, most of all, it was wonderful to witness his children's reaction to finding him in the lounge when they came in from school – they have their Daddy back!
An incredible day for all of us!
All this was possible just five weeks and one day after his heart transplant – simply amazing and full credit to him, the surgeons, doctors and nursing staff at Harefield Hospital. Nick now has a new future which was otherwise likely to be denied him.
All of this could not have been possible without the gift of a heart from the doner and the family. During a time of loss and grieving they had the strength, vision and care to donate organs for transplant. How can we ever find the words to express how we feel about that? Again 'thank you' seems completely inadequate.
Nick continues to make progress at home and is looking forward to getting out and about more and enjoying every day with his family. This next year will not be easy. He has to go up to Harefield Hospital every week to check his progress. Possible rejection of the new heart is strongest in the in the first twelve months following the op. However, all the signs are positive right now.
This is likely to be our final Blog on our family's journey over the last year and we wish to thank everyone who has supported us in so many ways, many of whom have never even met Nick but have been touched by his story and his inspirational attitude in dealing with his heart problems over the last twenty six years. Without your support we would have found it difficult to achieve what we did and I know that Nick feels that support very deeply.
For all those people who supported us financially we can reveal that the final total raised for the Harefield Hospital Transplant Appeal was £4,732 – very different than the £500 we initially hoped to raise! Thank you so much to everyone who supported us.
Maybe it is appropriate to finish our Blog with a comment from Nick on his discharge...
"Well the day has arrived to finally get my butt back home to my family. It's taken 344 days of remaining focused, keeping myself as positive as possible, fighting the boredom and monotony. Struggling against having no identity. I came in a father, a husband, a brother, a son, a Pharmacy Technician, and slowly all those roles got chipped away leaving me feeling I had no purpose however I refused to become a patient as such. The nature of being an inpatient meant I became "Nicholas Culshaw, 4024046" and my purpose was to go where I was told and when, to be available to be be prodded, poked, taken to theatre, etc at the drop of a hat at any time often with no notice. I've had to fight to stay fit, up and out walking 5 miles a day in all weathers at 07.30 and going to the gym to maintain a level of fitness that would give me the best chance of survival for my transplant and give me some hope of some control in my situation.
To dig deep and smile every day and have banter with the staff when all you really want to do is crawl in bed and feel sorry for yourself. It takes its toll and I'll never really be able to verbally explain how it really feels. That's why such strong bonds are made with fellow long stay patients as they are the only ones with a hope of understanding how you really feel.
I'm so grateful to all the staff at Harefield Hospital from the catering and cleaning staff right through to the consultants. They have all been an amazing support and have become like friends and family over the duration. Saying goodbye today will be genuinely very hard and emotional. I leave today but will be tied to the hospital for life and although that poses a lot of logistical and financial implications, it's a comfort to know they have my back. I'll leave worrying about friends still desperately trying to recover from surgery in ITU and HDU. For another friend who so richly deserves his chance but it's still digging deep after a year of waiting. It'll come they always say but it is of little comfort.
I am grateful too for all those people who supported Dad and Annette on their amazing challenge and helped them raise money for the hospital. It meant so much to them and to myself too. I am so very proud of their achievement. The money raised will enable more transplants to be undertaken in the future and I know they have helped raise awareness of the need for organ donations.
I'm just so happy that today my family will be released from the glass cell they've largely been in behind my phone screen via video calls. To be able to hug and kiss my children again and my wife is a gift a total stranger has given me and I'm truly grateful for. It's a gift I will honour and do my absolute best to look after and do justice to and reward it by filling it with love as means of my gratitude.
Here's to home, family and friends. The ONLY things in life that matter folks." ❤️
Bob Culshaw
PS
After our challenge, like Chris Gooderham who also rode End to End, we ask ourselves has it been worth it?
Months of planning and training and three weeks of torture for possibly three and a half days of joy. Okay, so the glory will be with us forever but after the ride days turned into weeks and weeks turned into months. Life has become getting up, housework, shopping, television and sleep once again.
We can't carry on with this, we have tasted the exhilaration of the challenge and it tasted good. We need more, we thought of the options and kept coming back to the same conclusion – we need to go on another bike challenge!
Soooo, .......we are now planning on cycling the Coast to Coast Route across the country from West to East next year!
Watch this space...