Well, yesterday an anonymous donation pushed me past my £1000 target! Hurray!
Thank you so much to everyone who has sponsored me so far. I know there will be much more to come too. You can go to my donations page and give to VHL UK/Ireland by clicking here.
Targets are all the rage. We want to monitor and measure everything. We see it in schools, in hospitals, in the workplace and even in the church. It’s certainly something that people with medical conditions like VHL have to get used to – constant testing and measuring and monitoring.
I’ve had to get used to it too as a diabetic. Several times a day I test my blood sugar levels and am given a number. If it’s between 4 and 8 I feel good – that’s a success. If it’s outside of those figures I can’t help thinking I’ve failed and I agonize over what I’ve done wrong. Did I miscalculate my carbs? Or underestimate my activity? Did I have one too many pints last night? What was hiding in that sauce? Sometimes I can find no reason and that’s even more frustrating.
My healthcare team at the hospital have been great and have given me a new bit of kit to measure my blood sugars constantly while I’m walking Hadrian’s Wall. Hopefully that will minimise the risk of hypos and allow me to respond quickly to problems so I feel like less of a failure.
For my 40th birthday my mum has bought me another bit of technology, a Fitbit Charge 2, and she has very kindly given it to me in advance so that I can use it in my preparation for the walk4andy. I feel like my 13 year old daughter did when she got her new phone last week! So many exciting features, so many more numbers to count and measure – my heart rate, steps, calories burnt or floors climbed. But I worry too that I’m just setting myself up for more failure if I keep insisting on measuring myself in this way. Aren’t I more than my HbA1c or cholesterol or Body Mass Index or my monthly income or school grades for that matter?
If we are measuring so we can celebrate progress, that’s great, and it’s definitely good to be able to see how much money is being raised for VHL. But there are lots of things that can’t be measured. I remember as a child worrying about how I could love both my parents and my brother the same, as if I had a limited amount of love to share out. I cried with relief the day I realized that wasn’t the case. I was free to just keep loving, confident that the well would never run dry. The things that count can’t be counted.
Headway are an amazing organisation that work to support people with all kinds of brain injuries. Andy got involved with Headway Leicester in the last few years of his life and benefited greatly from their services. Over the years he endured countless operations on his brain to deal with growing tumours, and while saving his life, the cumulative effect could be seen in his slower responses, slurred speech and increased physical disability. It was an inoperable tumour on the brain stem which haemorrhaged the night he died.
Not only did the support workers at Headway help Andy go on holiday, get out to the cinema, go bowling and do the normal things that he desperately wanted to do as a young single man in his mid-thirties, but they also gave him opportunities to rediscover his practical and creative gifts. I believe that there is something hugely important about our creativity, that it is an essential part of what makes us human and made in God’s image. I still treasure some of the things Andy made with the help and support of Headway…
I dropped in to the Headway centre in Evington this week to drop off some flyers and was delighted to have the chance to meet a lady with VHL who is now being supported there. Headway typically helps people who have had brain injuries, perhaps through accidents, rather than those with degenerative conditions like VHL. I remember one of the staff telling me it was unusual because they were used to people coming in seriously ill and slowly recovering, whereas for Andy and others with VHL it was the reverse. Like Andy though, this lady struck me as a remarkably strong and positive person in spite of her illness and once again I was humbled by the resilience of the human spirit in the face of life’s challenges and reminded of why I am doing all this.
So, another complication in my planned walk is my diabetes. In 2006, when I was 28, I was diagnosed with Type 1 insulin-dependent diabetes, just like my dad was when he was around the same age. (That should have given me a clue, but I didn’t even spot the signs when I was drinking more and weeing more, eating non-stop without losing weight, and generally exhausted – I was a teacher at the time so that seemed pretty normal!)
Thanks to the support I had at Addenbrookes, I’ve been on an insulin pump for the last five years. The pump drip feeds insulin into my body all the time and is permanently attached to my side through a tiny cannula. Here it is, my life support machine…
When it comes to walking Hadrian’s Wall, as someone who isn’t particularly active or sporty, I have tried to be sensible, planning to walk no more than about 10 miles in one day. I’ll take plenty of snacks and make sure I reduce my background insulin. Having said that, I still managed to have a hypo on one of my practice walks last week!
In the past week I’ve been to see my specialist nurse and hospital consultant to talk with them about my anxieties. They are a great team and I feel well supported. My biggest worry is not so much my blood sugar levels as my feet! They aren’t beautiful (as you can see!) and you should pity my poor colleague who had to wash them on Maundy Thursday, but as far as the walk goes they are pretty much essential. Without them, I’m stuffed.
What has amazed me is that you can live with a body for very nearly 40 years, and still be discovering new things about it! I’ve discovered this week that my right foot is more flat-footed than my left which explains why I was suffering a bit more with aches on that side after my practice walks. (It also explains why I’ve never been a great dancer, although my eldest would say that’s just being a normal embarrassing dad!)
All in all, it’s really helpful to know about these potential weaknesses at an early stage so I can try to do something about it. Good socks and boots will make a big difference but I’ll be looking for a bit of extra support for that middle part of my right foot!
Find out more about VHL and its effect on Andy’s life.
I think the moment when it really dawned on me that my brother was seriously ill was the day I walked into the bathroom to find him fitting on the floor. He would have been about 15. I panicked and hid in my bedroom, leaving my mum to hold Andy in her arms and keep him safe while my stepdad called for an ambulance.
It wasn’t the first time I had seen something like this. When I was six, my dad collapsed at the top of the stairs one morning, having the same convulsions brought on by a haemorrhaging brain tumour. I came out of my bedroom to see what was going on, saw him and ran back into my room, hiding under the bedcovers!
So when it happened to Andy, I had a pretty good idea it would be the same cause – VHL or Von Hippel Lindau disease. To my shame, it’s only in recent years that I’ve really begun to get to grips with what VHL is, essentially a genetic from of cancer. But that doesn’t begin to capture the complexity of the illness, the endless hospital appointments to see different consultants specializing in the different parts of the body where tumours can develop, the countless life-saving operations, and the constant anxiety waiting for the next hurdle to present itself.
May 2017 is VHL Awareness month and you can find out much more about VHL on the VHL UK/Ireland website – http://vhl-uk-ireland.org/.
And don’t forget you can sponsor my walk to raise funds for VHL UK/Ireland at https://mydonate.bt.com/fundraisers/walk4andy.
Of course, I can’t really know what it’s like to have VHL. It wasn’t to be my illness. I knew that for sure when the DNA results came through in 1996. And it was our parents (my mum and stepdad, and my dad and stepmum), as well as Andy’s wife for the time he was married, who lived with the daily implications of loving and caring for someone with VHL – my mum in particular for every day of the 38 years of Andy’s life.