Catch22 is proving to be as thought provoking and divisive as I’d hoped when I set the challenge and in the 30 or so playlists that I’ve got so far the eclectic mix of music would not be out of place on a John Peel session whilst the reasons behind the songs cover every emotion there is. I’m really grateful to those people who’ve taken the time to think deeply about the reasons for their choices because music often reveals a bit about your soul and I’ve been laughing and blubbing away thanks to the power of song. It’s also nice to know that the challenge is bringing people together in the office at LLR with reports of near fist fights and now unbridgeable divides forced open in the creation of their list. A bit of healthy debate is good for the mind!
Today is day +6 post-transplant and I spent a lot of last night recounting the journey that it’s taken to get here. As I’ve said before, living with cancer is something that no-one, no matter how strong, could find easy and I think that the theme of tears and laughter covers my experience quite well.
Since diagnosis, there have been many days of total and absolute misery when the pain of doubt has crippled my rational thoughts and reduced me to a total wreck. I dread to think how many countless tears have been shed alone and with loved ones; Alison’s hair has been left tear soaked on dozens of occasions through my frustrations and fear and pain. These are feelings, experiences and emotions that anyone who has suffered trauma or loss can relate to. They are inevitable, natural and most of all, human. I’ve had a great many people say that they admire my strength and determination but it’s without those very people that I would not have found the will to carry on and reach this point – still precarious, still unsure – with an unbroken desire to come out of the other side. I’d like to highlight in this blog how a network of support is so vital and why I am grateful for the seemingly boundless amount of energy that people are willing to give.
Firstly there is Aison, my wife and my rock, who probably did not have this in mind when she signed the “in sickness and in health” clause but has been an ever present force in keeping my chin up and informing those who are interested about how things are going. Even on the darkest days, she’s the one who wipes her own tears away, puts me first, gets angry and with total belief insists that we say our mantra, “WE WILL BEAT IT.” A simple statement with so much power because that is the base from which every new fight begins – the belief that we will win.
My family have been so supportive without ever overbearing, offering to be with us at any time and putting much of their own lives on hold to ensure that I am best looked after. They wait every torturous minute that I wait in between test results and live every treatment by my side in a process which has drawn us tightly together.
My dad, with whom I have grown incredibly close, regularly drives the 70 miles to Huddersfield and then on to Leeds to attend appointments, often sitting in uncomfortable chairs for hours, discussing politics and food and then happily doing it all in reverse. It’s not a relaxing retirement regime but there have been so many great days out too, with walks in the hills and hot beef butties at the farm shop and beyond all of this, I look forward to building our bond even further.
Mum is a tower of strength for all of us, finding endless gifts to keep me entertained and humour at every turn, often providing a simple logic to clear the fog of emotion.
My brother and sisters have been immense, giving me advice, shelter, strength and even coining the new family motto – “Stay Strong” – by which we all stand. They shared in my despair when it was found that their bone marrow would not match mine but immediately assured me of the many thousands of other people out there who were registered to donate; perspective over short sighted panic. I’m closer to them all now than I’ve ever been and look forward to many more laughs.
They say that in situations such as mine, you find out who your real friends are and in our case, we’ve been truly blessed. We have an army of people constantly offering something as simple as a joke or daft card, sharing a bottle of wine or meal and regularly visiting to pick us up off the floor when the hurt has rained down too hard. I could write for pages about those who have visited, sent boxes of cards and packages of fun but they know who they are and they’re legends in our hearts! Never underestimate the power of a small act of kindness; it can mean the world.
Legendary too are my colleagues, friends and the children from St Mary’s in Halifax who have sent a constant flow of prayers, cards, pictures, banter and gifts since I suddenly had to leave my job. It is woven into the fabric of a Catholic school to care for others but these guys have gone well beyond the call of duty and it gives me so much motivation to return. All of the Nurses and staff here on the ward say that my room is the most vibrant and uplifting that they’ve seen thanks to you. The picture to the right shows my wall of fun which puts a smile on my face every day!
From the first Doctor I met through to the Consultants overseeing me now, every one has managed the near impossible task of balancing professional care and genuine interest. After a while you start to know one another and some Doctors have had to give me bleak news which caused them visible upset and in the same way celebrating successes with a joy that assured me I’m more than just a statistic. Much more.
Incarcerated in a room in a ward is not the most exciting place and on many days, human contact can be limited because of the need to minimise infection risks. On this ward the staff are second to none. I cannot speak more highly of them all from the cheerful, interested housekeeping staff to the wonderful, professional Nurses; the job they do must not be underestimated.
Nurses in particular go out of their way to take an interest, chat or share a joke whilst filling me with total confidence in their professional abilities. They get to know you in a way that Doctors can’t and that is invaluable.
So there’s a small sample of what it’s taken to keep my mind unbroken and focussed on the task of getting well and I’ve only just scratched the surface. The word I have not mentioned quite deliberately in what I have written is love because it’s that thread which links it all together; be it love for a person, a job or a love of reaching a goal in the form of a cure. So thank you all for the love you’ve shown me, it inspires me to stay strong and know that we will beat it.
Upon rereading this blog, I’ve realised that it’s a bit heavy so here is an ode to someone for whom I have no love whatsoever, the hospital catering manager. To hopefully make you smile….
Hospital food is a human rights abuse
From the rubber bullet sausages to the nuclear soup
Of horrific combinations they’re truly the masters
From carrots in cheese to plain chips ‘n’ pasta
Ingredients are shoddy, flavours are vague
It seems clear that the cook should appear at The Hague
Facing the wrath of the United Nations
On charges of turture through force-fed invasion!
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