Last night nerves

I can’t quite believe that I have just one more day to walk.  After months and months of planning, the walk4andy is finally coming to an end.  It will all be over tomorrow bar the collecting of sponsorship monies for VHL UK/Ireland.

Or will it?  Because I don’t want it to be over.  I know that I have come a long way but I don’t think I’ll want to stop walking after this.  Right at the start I had people asking me what I might do next and I surprised myself by answering with a few ideas I had already been mulling over.  Someone said I’d catch the bug!

One of the most interesting things about doing a long walk like this is the changing scenery you get to enjoy.  I have moved from marshes to hills, from towns to wilderness, from lowlands to city streets.

Today, the penultimate day, it has been particularly noticeable, starting out at the Robin Hood Inn and walking by vast fields of rape seed just on the cusp of flowering.  And then today’s journey ended by walking through the outskirts of Newcastle, past the sub station and industrial estate (including the sweet-smelling Warburtons factory) and into a large residential area.

This journey has been peppered with transitions, and then there was my big transition into my fifth decade just before I started.  Times of transition are both an opportunity and an occasion for grief.  2013 was a massive time of transition for me.  The external change was sudden but the internal one has been much more like the gradual move from fields to factories, from hills to houses.

It is a commonplace to say that every ending has a new beginning but it is so because it is true.  For a new chapter to begin, the old one must come to an end, even if it does so with a bit of a cliffhanger.

I am more than a little nervous about how this chapter will end and what the next one will look like.  As I said at the beginning, I want it to be different, I’m just not sure how.  But I know there are new things I have learnt on this walk4andy that I hope will be sown like seeds in the soil of whatever God has in store for me on my return to Leicester.

I’m reminded of a well-known hymn …

Through all the changing scenes of life,
In trouble and in joy,
The praises of my God shall still
My heart and tongue employ.

 

Number crunching

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?

Need a few more steps to hit today’s target!

 

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.

Sorrel4Andy

Mountsorrel Butter Market with Andy’s flat behind

Andy and I grew up in the village of Mountsorrel halfway between Loughborough and Leicester.  Although I didn’t appreciate it growing up, the village has a lot going for it with the Butter Market, Soar Valley Leisure Centre, canal, farm, quarry and newly opened heritage railway.

It also has a great church.  We didn’t go to church much when we were growing up but when Andy moved back to Mountsorrel he decided to do an Alpha course at Christ Church.  The friendly folk he met, especially Christine and Mick Butcher, had a massive impact on him and he made the decision to go back to church.  Here he is talking to Bishop Tim back in 2009 at the Cromwell Road Coffee House (he appears with his mouth full about 7 minutes into the video!).

For Andy, friendship was always important (as well as food!).  Through the human contact he experienced as part of the church family at Christ Church, he had a profound and life-changing experience of the love of God.  In fact, he told his friends there that he thanked God for his VHL because without it he wouldn’t have met Jesus.

And just as his new-found friends had an impact on him, he had a lasting impact on them too.  He is still fondly remembered, and I am so thankful that the church in Mountsorrel are holding two events to support my walk and raise money for VHL.

The first is a Quiz4Andy on Friday 5th May at 7pm, probably with lots of questions about cars that I wouldn’t be able to answer!

The second event is a Coffee/LunchDay4Andy on Saturday 13th May 10am-2pm.  There will be lots of Andy’s favourite food including bacon sarnies and chocolate cake.  I’m planning to join them on the Saturday, walking from Evington to Mountsorrel (about 10 miles) to be there in time for lunch.

St Paul talked about the church family being like a body where if one part hurts the whole body suffers.  I love the fact that I still have brothers and sisters in Mountsorrel who feel what I feel, will pray with me when I’m finding things tough and who want to do their bit to help.  Thank you to all of you!

Headway

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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.

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Andy on a Headway holiday

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…

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Andy with some of his creations

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.

Andy and VHL

Find out more about VHL and its effect on Andy’s life.

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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/.

600437_10150899926198867_496076084_nAnd 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.