That’s all folks

cheers

This is going to be my last blog post about my 2013 London Marathon adventure. It’s been emotional!

I started this blog because I wanted to capture the experience of running a marathon and fundraising for charity. I happen to have Ulcerative Colitis and Dilated Cardiomyopathy which (until now) I’d never really told anyone. I hoped that I’d raise awareness of the diseases that effect me and my family and in turn possibly help others suffering. I didn’t expect to have quite so many things to write about and would never have imagined the blog to be as popular as it has been. I have always hated the way that I write and have very little confidence in it but I would recommend blog writing to everyone, just jump in and do it!

I want to say one final massive Thank You!!! Thank you if you’ve sent me a nice message, sponsored me, asked me about the diseases, donated to the auction, cheered me along the marathon, cuddled me at the end of the marathon, hugged me when I’ve been upset or if you’re one of the thousands of people who’ve read my blog. I’ve never felt so supported in my whole life and I can’t believe the power of a blog!

The PR is still coming in and we’re hopefully going to be in some women’s magazines in the near future, so look out for us! I’m going to have a little break from silly exercise challenges and fundraising for a bit and work out how best to focus on the things I’m most passionate about when it comes to hearts: organ donation (opt out campaigning), heart screening of young people and research into turning heart disease around. I’ve enjoyed the blog so much that I’ll start a new blog soon, probably called ‘Lucy Lives Life’ – watch out for it on my social media.

Please don’t forget that when this blog’s long gone, there’ll still be young people dying of heart problems every week and there’ll be people dying while waiting for organs that are out there, just not on the donor list. Please continue to spread the word and use my family’s story as an example of how tragedy can be turned around simply by filling in an online form and telling your guardians. Today is Jack’s 3rd anniversary of his heart transplant and just writing that has made me burst into tears quite hysterically. You’ll never know how meaningful that silly organ card is until it happens to you, so please keep talking about it.

Thank you and bye for now xxx

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We did it – thank you.

It took us 6 hours and 47 minutes but we did it. Boy did I underestimate how hard that would be! Much like our walk, this blog post is a long one! Let me try and explain the experience.

Me and mum at the start - looking cocky!

Me and mum at the start – looking cocky!

Getting off the DLR at Greenwich with thousands of other participants, the atmosphere was electric with nerves and excitement. On the walk up to the runners entrance in the beaming sunshine we saw an old friend Nat who I’ve not seen for a few years. Boost number 1! We left dad as we went into the runners area – sneaking mum in with us as she should have been at a different start. As we queued for the loo (for 20 mins!) we spoke to other runners all excited and nervous just like us. We dropped our bags off, snuck into the same starting pen and before we knew it, it was 10 minutes till the start of the mass race! Next came a really beautiful moment where the whole crowd of runners and spectators fell absolutely silent for Boston. At the end of the silence there was a huge roar and applause. It was very moving and a beautiful tribute to those that were injured and lost their lives last week.

Before we knew it we were crossing the start line. I gave Ben a big smacker on the lips and he was off, running into the distance. And our race began. It was pretty amazing being overtaken by thousands of runners. It took till about mile 8 before the actual runners stopped overtaking us. Then we were with the runner/walkers and the real walkers. It was a lot quieter and the atmosphere was different. By this time mum and I had already removed as many clothes as we could because it was so hot. ‘Those poor runners’, we kept saying. To this point the crowds had been amazing. We’d had our names shouted hundreds of times already. Loads of Eastenders shouting so passionately ‘go on Lucy, go on Sharron’. Lots of small kids holding their hands out for high fives. Mum loved it! If you ever take part in a marathon you must put your name on your shirt, it makes the experience unforgettable.

Now the whole time I’d had a headache and had also been feeling extremely tired and light headed. I put it down to these new pills. I’d been moaning a bit to poor mum but wasn’t really telling her how I was feeling because I didn’t want her to worry or make me stop. I was holding out for mile 12 as I knew London Bridge would be an epic site to see and would lift our spirits. And it was beautiful!!! The London Marathon is worth doing for that view alone. Amazing crowds and stunning views. Coming off the bridge we knew we were half way and that we were very likely to see Ben pass us in the other direction. That was worth walking for! At mile 14 Ben crossed past us (he was at mile 22). We had a quick chat and a cuddle and off he went looking strong! We walked on, at this point entering into the Docklands.

Tower Bridge!

Tower Bridge!

The crowds were still quite strong all through but we knew this would be the quieter bit of the marathon. The sun also went in which was disappointing! We just kept going at our 15 minute mile pace. At this point I checked my phone and saw I had something like 120 Facebook notifications, twitter messages, texts and missed calls from all of my amazing friends and supporters. I didn’t realise there were so many out there!!! You kept us going, thank you so much. Mum and I quickly agreed that mile 16 was a big moment, only 10 to go and that when we got there we’d feel better mentally. By mile 16 we’d been walking for 4 hours.

The marathon kept rolling on and we kept walking, stopping for a brief loo break and a chat on the phone with dad and Ben. We started moaning a lot around mile 19. Our feet were really sore and mums hip was really starting to hurt her. Again I hadn’t told mum but I felt very faint. By the time we hit mile 22 I was looking out for St Johns ambulance in case I needed to stop. I remember walking past one around 22.5 miles and questioning whether I should actually stop and get my blood pressure tested. I didn’t – instead I had some juice to drink and I felt a bit better.
Then it was the moment I’d been waiting for, seeing my best friends. Corinne and Megs were about half a mile apart from each other. I hugged them so tight and bless them they asked ‘how is it?’. I said ‘its horrible!’ so we moved on quickly as not to lose momentum. Keep walking I was chanting, as we’d both developed bad blisters and mums hip finally went and she started to limp. At 25 miles we saw dad and his friends and mum cried (so cute!). And that was the best bit, that final mile. Past Big Ben round the corner and onto the home straight. There were still beautifully thick crowds of people telling us how strong and amazing we were. As we turned the corner Buckingham Palace to our left and the finish to our right we started to well up. For me, all those months of training, the ups and downs, the friends and family that I knew were a very short distance away, so close. We crossed it, we paused for pics, had a cuddle and cried a lot. I will never forget seeing my mum get a London marathon medal placed round her neck and her saying in her high pitched south London voice ‘I don’t believe this!’.

Mile 22.5

Mile 22.5

The marathon had been tough but beautiful. I’d gone from feeling like a fraud for walking it to feeling proud for completing it. I definitely couldn’t have completed it without my amazing mum, who at this moment is still limping around with a badly damaged hip. All of the messages our supporters have given us in the lead up and through the race genuinely kept us going and nothing showed this better than our next experience.

We walked out into the crowds where I met Benny who hobbled his way over with his sister Cecsa, her husband Chris and kids Georgia and Harry. They all gave me and mum such great cuddles. My friends Bob and Nick were there too. Bob had waited around all day to see us come in: legend! We strolled up to the British Academy, walked in and I couldn’t believe it, all my work friends and the Oxfam volunteers were on the stairs cheering us. Me and mum just burst into hysterical tears! It was such a brilliant thing to see. Definitely one of my favourite marathon moments! Erika, Kate, Aggie, Alex, Kulzum and Suz all came over for a cuddle. It was amazing (I know I’ve said that a lot through this but it all was so amazing!).

Hugging Suz at the finish.

Hugging Suz at the finish.

So it’s done. Ben’s completed his first (and probably only!) marathon. Mum completed the marathon at 59 years old. I’ve done my second London marathon, completely differently to my first and my stupid diseases didn’t stop me.

If you think we’re worth a sponsor you can donate here. I’m going to rest now and I’ll write one final blog post sometime this week. Thanks for your support.

12 hours

In 12 hours I’ll be in Greenwich waiting for the marathon to start. Crikey! It’s been a roller coaster. Back in October 2011 when I got my ballot place I decided I’d run London again in 2013. I’d done the marathon that year for Oxfam and The Brompton and raised £20k. I don’t think I could ever have imagined it turning out like this. When I wrote my blog title ‘ups and downs of my marathon journey’ I didn’t think it would be this up and down!

In October last year I encouraged Ben to sign up to London and we started training together. Every weekend we’d do our long runs together which slowly grew from 6 to 13 miles. We ran through shit loads of snow this winter and were really excited about achieving this together. We raised money through cake sales, handbag sales and an auction of promises. We’ve had an amazing amount of generous sponsors throughout our marathon.

March 8th we ran 15 miles and felt strong. March 12th I was told I couldn’t run the marathon. I didn’t know what to do with that information but within the space of a week we had a place for mum, lots more sponsorship, PR coverage secured, mum and i had walked 13 miles and Ben had done his first training run alone.

I’m not one to be openly soppy but…I am so proud of Ben. Through bad knees, bad news and bad weather he’s trained for this marathon. He’s got to get up tomorrow and run 26.2 miles with all of the amazing 30,000 other runners. When he crosses that finish line he will have achieved something absolutely amazing and I’m sad I won’t be there to hug him. But he will have his family and his Oxfamily there to look after him. Ben’s looked after me so much through all of this. He is amazing. Please look out for him if you’re cheering. He’s hard to miss at 6ft 7 with a bright green Oxfam vest on. Go Benny!

To everyone who has sent me a nice message, hugged me when I’ve been sad, walked with me, sponsored me, donated a prize to the auction, a cake or a lot of handbags (!) – THANK YOU. I feel like I have a massive group of people behind me pushing me through. Soppy but true.

Speak to you tomorrow!

A set back

I’m currently on the train on my way to the London marathon expo. I wanted to try and explain my emotions at this point but first, an update on my heart.

Yesterday I was at a conference at the Nectar head office when the lovely Bethan from The Brompton called. I ducked out of the room to find somewhere quiet to take it. Bethan told me that my 48 hour ECG results had come back and had picked up another abnormality with my heart. She explained how I would have to go on new heart drugs as a matter of urgency. I’d also have to change my marathon plans and instead of walking it fast, walk it very slowly. As you can imagine I was quite overwhelmed at this stage to be hearing that there was yet another problem and another change to the plan. Especially when I was just starting to come to terms with what the weekend was going to be like for me and my family. A lovely nectar lady called Anna found me and looked after me with a cuppa and a cream egg. Legend!

This morning Bethan contacted my doctors and I’ve already started taking these new drugs. I’m also booked in for more tests in the near future. Bethan’s called St George’s (who look after all medics for the marathon) and told them about me and mum. Hopefully it’s quite clear to see how absolutely amazing The Brompton and the staff there are. Just fabulous.

So the good news is that we know about this other problem and we wouldn’t have known if I wasn’t doing the marathon. I’m also on drugs that should stabilise my heart rhythm and protect the heart. The bad news is that there are side effects (like with any drugs) and this may have an impact on my day to day life – it may not. It’s likely to make Sunday a bit harder for me as my blood pressure will be very low.

Enough of the serious stuff, it’s time to get in the zone. I’m going to walk into that expo hall with Ben. We’ll both be proud to be doing the marathon and will celebrate with the Oxfam crew on stand 170.

Over the next few days I’ll post lots of photos of my experience on here and on twitter. You can follow me @lucyfenner or search for the hashtag #lucysmarathon

Thanks for all your support, donations of prizes and money. You’ve all been brilliant.

1 week to go

This time next week I’ll be in a hotel in London preparing for the marathon which will be the very next day. It may seem surprising but since I was told not to run the marathon I’ve not really thought about the event itself, I’ve been much more focused on the fundraising and awareness, making sure that I use this opportunity to get as many people as possible to get their hearts checked and sign up for organ donation. The good news is, it’s working. We’ve raised our target of £5000 and the PR has been going really well. Of course I want to raise more and get even more PR!

Sophie my PR friend has done an amazing job of sharing my story and subsequently I’ve been interviewed by The Surrey Advertiser (out this week), Elmbridge Guardian, Oxford Journal, Harefield Gazette and The Daily Mail. It’s been a super weird experience being interviewed about such personal things, especially talking in detail about what Jack went through with his transplant. It’s paid off though. I’ve had lots of contact from people with cardiomyopathy, people that have very sadly lost loved ones because of heart conditions like cardiomyopathy and various charities who are pleased to have more coverage of this subject out there. So I’m going to keep going as long as it lasts.

48 hour ECG recording

48 hour ECG recording

As you may have read in the coverage, I’m really passionate about heart screening in young people and want to tell you about the brilliant work of a charity called Cardiac Risk in the Young (CRY). They do free ECGs for anyone between 14 and 35 across the UK. If you anyone you know suffers from any heart symptoms at all; breathlessness, palpitations, water retention – especially when exercising, please speak to your GP or book in for an ECG with CRY. Around 12 young people die of possibly preventable heart defects every week, if they’d been screened their condition could have been managed, like mine is. I’ve spent 2 days this week wearing an ECG monitor (right). I’ve had to sleep with it on, go to work and attempt a run in it too. The Doctor’s are just watching how my palpitations change over this time to see how serious they are. I should get the results next week. It’s obvious but I’m going to say it – without my screening I wouldn’t have these tests or the drugs that I’m on and I’d be in much more danger than I am now. Get screened if you’re worried.

So now it’s time to focus on the main event as it creeps up! I need to get in the zone and start to imagine walking the marathon patiently, it taking 7 hours (not the planned 4!) with me and mum wearing our t-shirts declaring our dodgy hearts (below).

No matter what, I know that it’s going to be an amazing event with thousands of people taking part for thousands of special reasons and I can’t wait to be part of it again!

Our marathon t-shirt design

Our marathon t-shirt design

She’s in!

We’ve got mum a place! Thanks to the lovely Katie and Oxfam, mum is going to be able to do the marathon with me. It’s exciting! We went for a training walk on Saturday not knowing whether she’d get a place or not. It was snowing the whole duration of the walk. Mums hands went numb and swollen by the end but we did it. We walked 13 miles with no training! Pretty good for my (almost) 60 year old mum! Legend.

Before the walk - already freezing cold!

Before the walk – already freezing cold!

While we were walking we started to plan race day. One of the things we want to make sure of is that people know we we’re not able to run the race. I don’t think I can handle the ‘keep running’ cheers. So, we’re going to get t-shirts saying ‘my heart won’t let me run’. I’m going to make a banner saying ‘our hearts won’t let us run’ and the logos of the charities we’re supporting so that when we walk past the telly cameras we can put up our banners.

At work I’m continuing with the fundraising. I’ve had some extremely generous sponsors giving money as well as promises. Yes that’s right, promises. Some friends at work are doing Trailtrekker in June and we’re holding an Auction of Promises. We’ve had donations such as ‘a cake every month for 6 months’ and ‘a week in a holiday home in the Alps. On 8th April we’re holding the auction offering a free lunch to thank those that have donated and bid on the promises.

12 miles in. Cold, snowy and bored!

12 miles in. Cold, snowy and bored!

I know I’m always asking you lovely people for things but this is another important one. A great charity called Cardiac Risk in the Young have a petition to get change policy on heart screening of young people. Over 600 young people (under 35) die suddenly each year due to heart conditions like mine. If young people are screened for these heart diseases their lives could be saved. You can sign the petition here, it’ll take just 30 seconds.

And as always if you haven’t already, please sign up to the organ donor register.

Thank you all for your continued support and sponsorship. It’s amazing!

walker not a runner

It’s with great sadness that I have to let you know that I won’t be running the London marathon on 21st April. I had final tests at the Brompton yesterday and while I’m ‘extremely fit’ (had to get that in there) my heart’s not good enough for me to run the marathon, or any marathon or half marathon ever again. It’s time to hang up my running shoes after a pretty good career. I’ve had the pleasure, yes pleasure, of running the London Marathon, Barcelona half marathon, Royal Parks half marathon (twice!), Reading half marathon, Run to the Beat, the Great North Run, Great South Run and Bupa 10ooo. I’ve got a good collection of medals and I’ve still got cartilage in my knees so there are some positives to this news!

The delightful exercise test I took yesterday.

The delightful exercise test I took yesterday.

You may wonder why, if I’m fit and have done all these runs in the past why I can’t continue my hobby. I’ll try and explain the technical health bit…

I have dilated cardiomyopathy which means that my heart is weak and enlarged which means it can’t pump blood as efficiently as a healthy heart. Since I was diagnosed in 2008 my heart’s steadily decreasing in function and yesterday I found out that it’s got to the point where they need me to take drugs to try and limit it getting worse. If we now add in my ulcerative colitis, which causes weird electrolyte activity affecting the heart, as well as limits the amount of nutrience I can absorb from my food it becomes more serious. I lack in a lot of crucial vitamins and iron, which often makes me feel very tired, dizzy and faint. These are also vitamins that the heart needs to function as best it can.

So, even though the rest of my body feels fit to run, my heart can’t hack it and it’s very dangerous to strain it by running silly distances. People always say to me, ‘oh you’re a natural runner’. I can tell you now, I think we’ve proven that I’m not and I find it bloomin’ hard lugging myself round a half marathon course, let alone a marathon!

What happens next? Well while I explain the health bits easily and joke about it, I’m crushed. I don’t know whether it’s the marathon, the loss of running or just knowing I’ve got these diseases I can’t control. I’ll moap about a bit and feel sorry for myself. I’ve lost my favourite hobby and as silly as it sounds I have to morn it. I have to accept that my ticker’s worse than I thought and decide what to do about the marathon. I want to keep going, I want to walk it (that’s been given the nod by my heart doctor for those worriers). Ben and I have raised £2.5k and I want to keep fundraising. I just have to work out whether I’m mentally strong enough to get over the not running. Training up till now, running 3 times a week since November, running 15 miles on the weekend and constantly gearing up for the marathon is engrained in my brain. Stopping now and giving up would be easy but I like to make my life that little bit more challenging. I can see myself walking it, raising more money, getting more people signed up for organ donation and raising awareness of the diseases. While it’s hard for me, remember there are thousands of people with this condition that are much worse off. They need organs RIGHT NOW. They can’t get out of bed, let alone walk a marathon.

Trying to understand my echo results.

Trying to understand my echo results.

I’ve cried all the way through writing this. Please appreciate that it’s hard for me to share this and I’m not normally someone to publish this sort of information. This blog’s been a challenge for me. I’m doing this for the reasons I listed above and would love it if you could:

1. Sign up for organ donation

2. Register to give blood

3. Tell your friends and family to do number 1 & 2

4. Sponsor me and Ben

Thank you for your support. Please share my story.

Fun-raising

The training’s still on hold so I’ve been using my time to maximise the fundraising! And what fun it’s been! It’s a fundraisers dream to be given items to use for fundraising and I was lucky enough to be given an amazing donation of over 50 handbags from a high street favourite.

Sales going well last Thursday!

Sales going well last Thursday!

We decided to hold a handbag sale in Oxfam House with the stock we had. With over 700 people in the office we were hopeful we’d sell a few bags. With a little bit of design, marketing and word of mouth we were set to go. The sale was due to start at 11.30 and at 11.25 we had colleagues looking at the bags wanting to start buying. The image to the right was taken at 11.35! Women were surrounding the handbags and they were flying out of our hands. It was amazing! Within 20 mins we’d sold 90% of stock and made £900. Ben couldn’t believe how much women loved handbags – he finally believes it’s not just me!

We want to say a massive thank you to our anonymous donor who made it possible as well as thanking everyone that came and bought a bag. We hope that you love your bags!

So that’s £2500 raised now, half way to our £5,000 target. If you’d like to sponsor us and keep us going while we can’t train please click here.

Next up it’s an Auction of Promises at work with some colleagues that are walking Oxfam’s Trailtrekker. If you don’t work at Oxfam and would like to make a promise let me know on l.fenner@hotmail.co.uk. Promises currently include things like cake baking, picture framing, dinner parties, dog walking, babysitting. Promises will be auctioned in Oxfam House on 8th April.

Thank you everyone.

On track

Another 10 miles run on Saturday and after last week’s 14 miler Benny and I are feeling like we can actually do this marathon. I’m please to report no chest pains or heart symptoms although the UC is making running and general day to day not so good. It seems that long distance running means I have a permanent flare up. I’m not giving up though. Through stitches, stomach cramps, blisters and needing the loo on our 10 miles this Sat we invented our team moto; Team Fenben: we don’t stop! And we didn’t.

Runs are getting so long now I’m getting bored of the music on my iPod. So I’ve started listening to a new album every run. It’s expensive but it works. I zone out and quickly get into my ‘plodding state’. That’s when I run so much that it becomes so natural just to keep putting one foot in front of the other and rock along. I’ve never meditated but I’d imagine it’s quite a similar feeling.

We’re at that midway point where running’s ok and the distances are bearable, we’re also getting faster. The next few weeks will start to get tough as we become exhausted by our training. I’m already waking up everyday with the dull ache in my legs knowing that I’m going to have to run again that evening. My list of reasons to be motivated is right by my bed!

Motivation always comes back to the fundraising and charities. This week I had 40 leather bags donated to me by a very generous high street retailer. I’m going to do a handbag sale at work and
hope to raise around £750. At the moment Oxfam could use the money we raise to buy blankets, stoves and hygiene kits for Syrian refugees who’ve fled war and are living in freezing refugee camps this bitter winter. Oxfam’s work is literally life saving for these people. Real refugee stories on the Oxfam website have inspired me to go out and run in the cold this week. The work is amazing.

11 weeks, £4,200 to raise. Sponsor us here: http://www.virginmoneygiving.com/fenben
Find out more about Oxfam’s response in Syria: http://www.oxfam.org.uk

All clear!

Yesterday I visited the Royal Brompton hospital in London for my 6 monthly MRI results. This is the magical place that has looked after my brother along with the rest of my family on so many occasions.

In 2008 my brother was fitted with an ICD. Much like a pace maker, this mini internal defibrillator works to monitor heart rate. If the heart dips below a certain bpm it’ll shock it back to life. In the same year The Brompton started monitoring mine and my mum, dad and other brother’s hearts too. This was also when we started helping with research into inherited heart conditions.

In 2010 my family spent a month going back and forth to The Brompton while my brothers health was deteriorating. Whenever I visit I remember the day he was moved by ambulance to Harefield hospital where he’d later have his heart transplant. He was so ill then that he could have suffered cardiac arrest on the journey, so they whisked him through London to Harefield. What a day! Luckily he got there fine and that’s where he stayed for the next 2 months waiting for his transplant.

Sometimes people forget that heart disease is the UK’s biggest killer. These 2 hospitals work to look after those suffering with the disease and undertake ground breaking research. Hopefully you can see why it’s so important that we support these hospitals and want to fundraise as much as we can.

Yesterday I met my consultant who talked me through my most recent results (and showed me an MRI of my whole body which was in sane!). The bad news is that my heart has got weaker again but they want me to keep exercising. So much so I’m allowed to run the marathon – as long as I take it easy and watch out for certain symptoms. Wahoo! High on this news, I went and walked down The Mall to get me all pumped up for race day. It bought back memories of last time I ran the marathon and really put the fear in me!

So with the all clear and a new found fear of this 26.2 miles, it’s all about cranking up those miles and getting that fundraising pouring in. Just 12 weeks, £4.5k to raise and over 350 miles to run!

You can sponsor me and support the Brompton and Harefield here: http://www.virginmoneygiving.com/fenben