Weight loss – Another MS Warrior

97 Still waiting

Well another week has gone by and still no Sheffield appointment! I have anxiously awaited the post each day, but only bills and junk mail seem to have landed on my doormat this week.

I have tried emailing Professor Sharrack’s secretary but no reply there either, despite me signing a consent form to say I was happy with email communication. Perhaps emailing them the consent form doesn’t count?!

On Monday, I phoned the professor’s secretary and she was able to confirm that my scan report has arrived, but I’ve not yet been allocated an appointment. She was unable tell me what the report says, but promised to give him a nudge about my appointment.

… so the wait continues.

A while ago I mentioned that I was making a concerted effort to lose some weight. I’ve always struggled with my weight, particularly since hitting a certain age and even more so now my mobility has decreased. I’m definitely a person who is inclined to comfort eat and the emotional challenges of this disease have certainly left me in need of comfort.

Anyway, a couple of months ago I decided the time had come to take drastic action! I decided I needed some serious help this time (I have done LOTS of diets) and after some research, chose the Cambridge One2One Diet. This involves consuming meal replacement smoothies, shakes and bars and a weekly weigh in and chat with a consultant, who has helped to keep me on track. Thank you so much Julia. I am still half a stone from my target weight and a “normal” BMI but I’m feeling so pleased with my progress that I thought I’d share it with you. These two photos are taken exactly a year (and 35lbs) apart.

As well as wanting to look and feel better and improve my general health, there is another reason why reaching a healthy weight is important for me at the moment. HSCT involves the use of high dose chemotherapy, which partly destroys the immune system. Chemotherapy is hard on the body, in particular on the liver and kidneys and the dosage for each patient is calibrated to their body weight. So by reducing my weight, I am reducing the dosage of chemotherapy I will need.

If you’d like to know more about the Cambridge One2One Diet, please visit their website by following this link …

Cambridge One2One Diet

If you live in Stockport and would like to know more, please give me a shout and I’ll put you in touch with Julia.

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…

GoFundMe

84 HSCT info

I came across a video of a lecture about HSCT for MS professionals, so thought I’d share it with you in case anyone is interested. It explains the process and discusses the development of treatment protocols over time. Although HSCT has been happening for several years, large scale studies and sharing of information has been slow to progress. Various protocols have been tried and compared and this has increased safety of the treatment.

The protocol used in Russia (and in the UK and Mexico) is the safest of the three referenced here.

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Gogglebox star and fellow MSer, Scott McCormick is currently receiving HSCT at Hammersmith hospital. He is sharing his progress via twitter (@ goggle_beard) and through a video diary he is making for the charity MS:UK (available on YouTube). Scott has had his stem cells harvested and is soon to begin the chemotherapy part of the treatment.

Like many MSers who have HSCT, Scott is keen to spread the word about the treatment. He recently dyed his trademark beard purple for MS:UK!

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Today was my first weigh in following a week on my new diet plan and I’m overjoyed to report I have lost 7 pounds! I am no longer obese …I’ve never been happier to be classified as overweight!

GoFundMe