Sheffield here I come!

Last weekend, Matt Stevens took on the challenge of swimming a mile of Lake Windermere.  Matt is a keen swimmer and a member of Droylesdon Sub Aqua Club.

Here is Matt’s account of his day …

“As you’re all aware, I was swimming the Great North Swim this year for a very very worthy cause … I was helping raise funds for Vicky Swan (Niamh and Connor’s mum) for her MS treatments.

We arrived at Windermere on Friday night, in the pouring rain.  The wind was howling and quite honestly I didn’t want to do the swim, the organisers had talked about cancelling the event on Saturday due to the weather, so we all had a few drinks for a little courage.

On the Saturday morning we got to the swim site and were met with horrible weather.  Cold water, strong winds and driving rain made the organisers cut the swim short this year … down from a mile to about a kilometre.

The below picture does not do the waves, caused by the wind, justice …

For the first half of the race, we were swimming directly into the wind and waves.  I tried to swim crawl but ended up swallowing too much water (I thought that the ferries would be beached If I continued) so I was forced to swim breaststroke for the first half.  Ducking through waves as they came at me.  When we turned the corner after the second buoy the wind started assist, so I switched back to crawl … a bit easier and a bit less water was swallowed.  I was able to make a bit of time.

I made it back!!!

I’d like to thank all of my sponsors, without you very kind and generous people, I probably would have bottled out this time.  Talking of sponsors, I am now collecting money.  So if you were kind enough to sponsor me for this … I’m coming to get ya J LOL

See you soon and thanks again xxxx”

Well done Matt! Fantastic achievement and you have inspired Sophie and Niamh to think about doing it next year!

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A few weeks ago, I mentioned in a blog post that I was planning to make a determined plan to lose some weight.  There are lots of reasons for this – I want to be healthier and fitter and I want to look better and feel more comfortable in my clothes.  Perhaps the most important reason of all , is that when I receive the chemotherapy element of my HSCT treatment, the dosage will be calculated on body weight.  Chemotherapy can be very challenging on the body, particularly on the liver and kidneys, so getting the dose to as low as it can be, is definitely a good idea.

Anyway, I am pleased to report that in 6 weeks I have lost 21lbs and 5 inches from my waist!

The internet is full of useless information!

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I also have another exciting piece of news to share with you …

A while ago, I mentioned that I had discovered that there is soon to be a UK trial, comparing HSCT and Lemtrada (a high efficacy DMT). See blog post “Decisions, decisions” dated 4th May, for more. 

To cut a long story short, I have an appointment this week with Professor Sharrack (Neurologist) and Professor Snowden (Haematologist) at the Sheffield Hallamshire Hospital.  Most exciting of all, the appointment letter says this is an “HSCT Clinic”!

I have known about this for a few weeks now and although it’s a huge step towards accessing treatment here in the UK, I am trying very hard not to get too carried away just yet.  Hopefully there will be more to report soon.

In the meantime, I have been busy gathering all my medical letters, obtaining scan reports and producing a timeline of my disease history so I can arrive looking as if I know what I’m talking about!

So, please cross your fingers and toes and wish me luck. If you’re the praying kind, please do that too. I don’t think I’ve ever been so anxious for a medical appointment as I am for this one.

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You can find out more about Droylesdon Sub Aqua Club by visiting their website here

If you would like to sponsor Matt, please click on the link below and mention him in your comment…

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Just keep swimming …

This has been a tough week for me. I have been feeling physically and mentally low and seem to have forgotten how to sleep!  I’m not sure what the root cause of all this is.  Life just feels very unsettled at the moment. 

Thankfully my lovely friend was there to catch me when I was at my lowest point (thank you Parveen ❤️), I had a better night’s sleep last night and have felt much more positive today.  I hope to rest up over the weekend and be fighting fit for Monday! ??

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One of the fabulous Stephenson’s team, Matt Stevens has volunteered to take part in the Great North Swim to raise money for our funds.  The event takes place at Lake Windermere over 3 days in June and Matt will be taking part in the 1 mile swim. 

This is an amazing challenge and I am so thankful to Matt for taking part.  If you would like to support Matt, please donate using the link below and mention him in your comment.

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I watched Eastenders this evening (sad, I know) and was sad to see the character, Dinah, apparently take her own life, feeling unable to cope with impact of her advanced Multiple Sclerosis.  The character was brought in specifically to take her own life and create a story line for her daughter. We never got to know anything else about Dinah.

When MS is depicted on TV, they only seem to show extremes – those who are impacted very severely or those who bounce back after short illness, with their MS never mentioned again!  In Coronation Street, Johnny had a brief period of illness, was diagnosed within a few weeks, recovered and carried on as if it had never happened!  

I wish MS was depicted realistically on TV …it’s so hard to help people understand what it is like, without adding fiction to the mix! 

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