Hello, I'm back again.

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Devjon
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Joined: 16 Oct 2013 16:06
Location: Poole
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Hello, I'm back again.

Post by Devjon » 08 Jul 2022 14:36

Hello fellow Forumites,
I've not been on here for what seems like an eternity. I came off Facebook several years ago, so todays Email from the MDS team, with its invitation to take a fresh look at the Forums has encouraged me to do just that.
I have put a bookmark to the Forum pages into my Browser, so it should just be a quick " click " to come back to these pages. It would be great to see a few more of us here.

Just a quick Bio, I was diagnosed with MDS MLD nine years ago, and it's ten years since I became aware of symptoms. I'm very fortunate to be under the care of Sally Killick and her team who are based at the Royal Bournemouth Hospital. I'm on what was called " Watch and Wait " which has now been rebranded to " Active Monitoring " I think.
I live a reasonably active lifestyle, I took up cycling a few years ago as I found it an easier form of exercise than jogging. ( with cycling you can stop pedalling and give your legs a rest, especially going downhill, plus you are sat on your bum which is a bonus! )

It really helps if you can get out of the house each day, even if it's just to walk to the shops and blow the cobwebs away. My wife got involved in a local council initiative a few years ago, " Walking for Health " and has since become a walk leader. I got roped in to go along to make up the numbers, I've since made several friends and really look forward to our weekly meet ups. The walks are free, usually held in local parks and trails and are always at a gentle pace. There are a number of local groups throughout the country, it may well be worth seeing if your local council is involved.
Anyway, enough of my ramblings, It's good to be back and I hope to meet a few more of you on here. I'll be checking back in on a regular basis, even if I end up talking to myself!

Kevin
chris
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Joined: 01 Dec 2009 21:52
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Re: Hello, I'm back again.

Post by chris » 09 Jul 2022 00:06

Hi Kevin
Glad you’re back! I’ve never been on Facebook ( not because I’m a Luddite-I’m actually quite IT-savvy!( but because I’m unsure about the privacy aspects and , frankly, because I’ve heard so many people say how difficult it is to wean yourself off social media platforms and I don’t want to be sucked in!!

I’ve been a contributor to this Forum since 2009 and it really helped me in the early days of my diagnosis to learn about the range of issues that people with MDS/CMML had. It helped me psychologically as well. Then after a few years, along came Facebook and fewer people posted on here! 😩

I’m probably the highest “poster”! So am very pleased that our new volunteer, Ronnie, has streamlined this Forum so we hope to attract some more users.

I’ve had CMML since 2008 and probably for about 5 years before that diagnosis. Also lucky to be on Watch and Wait and not needed any treatment.

Your activity regime sounds ideal! Listening to Dr Michael Moseley on radio 4 today. Proven that early morning walks at a brisk pace in natural surroundings ticks lots of boxes for good health!! I won’t manage the early morning bit but do spend a lot of time on my allotment so doing a lot of bending and stretching and lugging watering cans about a lot at the moment!!

Would be lovely to hear from new members. Let us know who you are and how you’re doing.

I think I’ve spotted you at some Zoom meetings Kevin and there’s a Bournemouth one coming up next week so may see you there?!
Best wishes
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Devjon
Posts: 42
Joined: 16 Oct 2013 16:06
Location: Poole
Contact:

Re: Hello, I'm back again.

Post by Devjon » 11 Jul 2022 21:33

chris wrote: 09 Jul 2022 00:06 Hi Kevin
Glad you’re back! I’ve never been on Facebook ( not because I’m a Luddite-I’m actually quite IT-savvy!( but because I’m unsure about the privacy aspects and , frankly, because I’ve heard so many people say how difficult it is to wean yourself off social media platforms and I don’t want to be sucked in!!

I’ve been a contributor to this Forum since 2009 and it really helped me in the early days of my diagnosis to learn about the range of issues that people with MDS/CMML had. It helped me psychologically as well. Then after a few years, along came Facebook and fewer people posted on here! 😩

I’m probably the highest “poster”! So am very pleased that our new volunteer, Ronnie, has streamlined this Forum so we hope to attract some more users.

I’ve had CMML since 2008 and probably for about 5 years before that diagnosis. Also lucky to be on Watch and Wait and not needed any treatment.

Your activity regime sounds ideal! Listening to Dr Michael Moseley on radio 4 today. Proven that early morning walks at a brisk pace in natural surroundings ticks lots of boxes for good health!! I won’t manage the early morning bit but do spend a lot of time on my allotment so doing a lot of bending and stretching and lugging watering cans about a lot at the moment!!

Would be lovely to hear from new members. Let us know who you are and how you’re doing.

I think I’ve spotted you at some Zoom meetings Kevin and there’s a Bournemouth one coming up next week so may see you there?!
Best wishes
Chris
Good to hear from you Chris.
Yes there's a Bournemouth / National forum on Wednesday of this week, perhaps I'll see you there. I'm fortunate to be near to a sheltered trailway ( the disused Somerset and Dorset rail line ) and also close to Heathland, so I'm spoiled for choice when it comes to walking.
We no longer have a car having given it to our daughter a couple of years ago. We use local shops as much as we can, again we're fortunate to have a good range in easy walking distance, then there's our Bus Passes. If there's anything too bulky then we book a supermarket home delivery.
All the best,

Kevin
RUSE7
Posts: 38
Joined: 24 Dec 2021 17:51
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Re: Hello, I'm back again.

Post by RUSE7 » 13 Jul 2022 16:56

Hey Kevin, you have inspired me to make my first post! Thanks for the inspiration. Agree about getting out of the house each day....especially in this heat. My refuge is under the tree in the back garden but I do try and go for a walk each day when it's a bit cooler.
I'm watch and wait too, 4 years now and counting. Hope I make it to 10 like you without the need for any intervention.
All the best, Ronnie
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Hello, I'm back again.

Post by chris » 13 Jul 2022 21:28

Hi Ronnie
Good for you on your 4 years! I’m setting the bar high at 14 years on Watch and Wait!! Is there anybody out there who can beat this?! 😂😂

Considering that a leaflet on CMML in 2009 gave a median survival prognosis of 12-18 months and I’d already had it for a minimum of a year by then, I wasn’t a happy bunny!! Goes to show how median survival (averages) can be misleading!! I consider myself very, very fortunate.

Saw you today at the Bournemouth Zoom meeting Kevin and you are looking great and still an example to us all with your exercising!!

Stay in the shade of the old oak tree, Ronnie!! At times like this I adore our 1926 uninsulated house which stays at a steady low temperature in summer and, sadly, also in winter!!

Take care both

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
RUSE7
Posts: 38
Joined: 24 Dec 2021 17:51
Contact:

Re: Hello, I'm back again.

Post by RUSE7 » 14 Jul 2022 11:52

Hey Chris!
14 Years watch and wait - that's amazing. I hope I can hold out that long. Goes to show how wrong the prognosis can be though doesn't it. We are all so much more than numbers and stats. Well here's to many more years of the same.
Ronnie
Devjon
Posts: 42
Joined: 16 Oct 2013 16:06
Location: Poole
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Re: Hello, I'm back again.

Post by Devjon » 14 Jul 2022 15:33

Inspired by the information garnered from yesterdays meeting, this morning saw me walk from home to Wimborne. The route took me along the trailway which follows the route of the old Somerset and Dorset railway, and then past Canford School and along the river Stour. It was idyllic, there were a few people sculling on the river, and a young lady Paddleboarding. That looks great fun, I'm tempted to give it a go myself.
Wandered around Waitrose and came out with 4 x 1 Litre Organic Beetroot Juice, 4 x tubs of own brand effervescent Vitamin C tablets, and a packet of Turmeric. My backpack was feeling the weight of all that Beetroot juice so I headed for the bus stop. I had to go past the Bakers, this particular baker used wood fired ovens and the bread and cakes are outstanding. Always being willing to yield to temptation, I ended up with two Cinnamon Swirls, two Cheese and Onion Scones, and a small Granary sourdough loaf. I staggered around to the bus stop and saw that there was only a three minute wait for my bus. This was a disappointment as the Tap House bar is only about ten metres from the bus stop. Had I missed the bus I'd have had to seek shelter from the sun and rehydrated with a Pint.

With regard to longevity, looking at the statistics shortly after diagnosis, I wasn't expecting to see 70. I was 73 in May. I've told my consultant Sally Killick at Royal Bournemouth Hospital that I'm determined to be her longest surviving patient to the extent that they'll have to get some extra wide graph paper to accommodate the outlier to the right of the bell curve!

To finish off, I've just made myself a cocktail of fizzy Vitamin C tablet, squash, and a small amount of Turmeric powder. It tasted quite " interesting " not unpleasant, but unusual. I'll try it with Beetroot juice tomorrow and report back.
RUSE7
Posts: 38
Joined: 24 Dec 2021 17:51
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Re: Hello, I'm back again.

Post by RUSE7 » 14 Jul 2022 17:18

I hate it when the bus service is too efficient. It takes all the fun out of life! Sorry it deprived you of your pint :lol: :lol: :lol:
Sounds like you're set up for the week with all your supplies though. Hoping all that beetroot juice doesn't turn your wee pink! (I don't want to know if it does, you can keep that mystery to yourself).
Good luck with the Vit C, squash and turmeric cocktails. I'm going to brew a batch tomorrow morning.
Ronnie
Devjon
Posts: 42
Joined: 16 Oct 2013 16:06
Location: Poole
Contact:

Re: Hello, I'm back again.

Post by Devjon » 17 Jul 2022 15:44

A quick update,
I've been drinking the Beetroot juice mixed with a little Turmeric powder. It's just about palatable to my taste buds, quite earthy. I'll probably switch to Turmeric capsules, they're easier to swallow. The effervescent Vitamin C tablets are another matter. They're very good, I put a splash of Lemon cordial into a pint glass ( I've got a cupboard full after visiting so many Beer Festivals ) top it up with tap water and pop in a fizzy tablet for an excellent refreshing drink. As an aside I had started getting headaches and it took a while to realise that they were dehydration headaches, I just don't seem to feel thirsty and have to remind myself to drink.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Hello, I'm back again.

Post by chris » 17 Jul 2022 18:52

Hi Kevin

Definitely need to drink more in this weather and two more days of excessive heat to come apparently. 🥵 I had a beetroot risotto yesterday. I really like the earthy taste of beetroot but I know some people don’t.

It’s good that your idea of fizzy “lemonade” is helping you drink more water.

Let’s hope your new regime is beneficial.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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