127 Bald Eagle

We may all be in lockdown, we may have our whole lives on hold and my treatment may be delayed … but the fundraising continues! 

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I’ve been meaning to write this post for several weeks now, as there is a lot I want to say, but I’m struggling to write at the moment, in fact struggling with a lot of things, so have been putting it off.  I wanted to include an update on how things are going with my MS and my treatment plans, but that will have to wait until another day.  

Thank you to all of you who have been in touch to see how I’m getting on …your support is very much appreciated.  And I’m sorry for not getting back to everyone … I promise I will soon ❤️

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On Friday 3rd April, my brother, Jimmy and my sister in law, Gill, planned to shave their heads (and Jimmy’s chin!) in order to raise funds and to show solidarity with my treatment related baldness in Russia.  They also created a new beer, which was named Bald Eagle following a vote on their Twitter page 🦅

Before lockdown, a monthly beer tasting day took place at the brewery on the first Friday of each month – always a fun day, with tours of the brewery, beer to taste and buy, yummy food and live music. It was planned to combine the big head shave with the April tasting day and a local hairdresser was even roped in to do the honours with her clippers ✂️

Then Corona Virus hit and everything changed 🦠

By this time, Jimmy’s hair was rather overgrown and he decided to go ahead with a lockdown head shave in the back garden instead.  Gill decided to hold on to her hair a little longer, so Zeb bravely stepped up to take her place, with Gill and Anna on clipping duties.  To add a bit of an edge to the event, they decided to broadcast the big shave on Facebook live 🎥

Hair cut video 💇🏼 1

It took a few attempts and stylist swaps to remove all that hair and it all took a little longer than anticipated.

Hair cut video 💇🏼 2

By the end of the night, Jimmy and Zeb were looking fantastic! 

Over the next few days, they found that having a mohican is much more high maintenance than it might seem, so eventually they went full skinhead instead.

Sponsorship money has been coming in and the big head shave has raised a fantastic £220 already.  A massive thank you to our two handsome skinheads, Zeb and Jimmy and also to our super stylists, Anna and Gill 👨🏻‍🎤

If you would like to sponsor Zeb and Jimmy for their fantastic head shave, please visit our GoFundMe page and mention them in your comment ❤️

You may have noticed that Jimmy’s beard remains untouched.  I wondered if he was keeping it in case he needed a second job in December, but he tells me he is going for a full shave when the brewery eventually reopens 🍻

Due to the pandemic, the brewery is no longer holding tasting days or delivering beer to pubs, but they are brewing a small amount of beer for home delivery to the local area, which is proving very popular. You can find out more about this on the Swan Brewery website here … Swan Brewery

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I hope you’re all coping ok with this weird world in which we are now living and most importantly, keeping as safe as you can ❤️

Swan Brewery website

Swan Brewery on Facebook

Swan Brewery on Twitter

GoFundMe

114 Feeling positive

Well, after my slightly miserable New Year post, I am pleased to report I’m over that little hurdle now and feeling much more positive.  I went back to work on Monday and had a good week. I was tired by the end of it, but not as overwhelmed with fatigue as I was back in November and December.  It actually felt good to be back with my fabulous work mates and to get back into a routine.  Thank you everyone who helped to make it a good week.

I am booked to go to Russia on Monday 16th March, which is just 9 weeks away!  I have completed my hospital registration forms and am awaiting my official invitation, which is needed in order to obtain a Russian visa.  I also hope to book my flights in the next few days.   At long last, it’s really happening!

There is a lot to do over the next 9 weeks …

  • We will be having a last push on the fundraising and have a few plans coming together (more info below).
  • I need a dental check up (it is best not to have dental work for 12 months after HSCT).
  • I need to plan on what to take with me and pack everything for a month into one suitcase.  
  • I need to think about how to prepare the house for my return with a low immune system.
  • I need to mentally prepare myself for the treatment and for a month away from home, from family and friends and from my beloved cats! 

I’m the kind of person who likes to make lists, so hopefully this will help me to get organised.  

It’s the first Vintage Village fair of the decade tomorrow and Sheila has decided to give it a go!  If you’re in the area, please pop in and say hello and grab yourself a vintage bargain. 

We are in the beginning stages of organising an afternoon tea party shortly before I go (hopefully Sunday 8th March).  This will be a fundraiser and also a chance for me to see everyone before I go.  We will let you know more once our plans are finalised. 

There is going to be a fundraising event at Swan Brewery in Herefordshire on Friday 3rd April.  My brother and my sister in law are planning to shave their heads and beard (only one of them has a beard!) and to launch a new beer to mark the occasion!  I am so grateful to them for doing this and since I’ll have lost my hair by then too, we can all be bald together! 

The lovely ladies at Seed Beauty in Edgeley are doing a sponsored walk up Mount Snowden in North Wales.  This will be happening towards the end of March and I look forward to following their story from Moscow.

As you can probably tell from the numerous requests for bottle gift bags, we also have a bottle lucky dip coming soon.

1 year ago we had just crossed the £10K line and here we are now a little over £20K.  This is such an amazing achievement and just shows what people can do when they work together.  It so good to see kindness and generosity shining through, even though we are living in such uncertain times.  I am so grateful to every one of you who has donated, responded to requests for items, come along to an event, taken on a challenge, shared or liked one of our posts, read this blog or sent a message of support …thank you all 😘

You can find out more about Stockport Vintage Village by clicking here

You can find out more about Swan brewery by clicking here

You can find out more about Seed Beauty by clicking here

GoFundMe

76 Slow recovery

Apologies for the radio silence …it’s been a tough old week for me!  I really did overdo it last weekend …on my feet for far too long, too much lifting and carrying and staying up late (for me anyway!).  I have felt overwhelmed with fatigue and ataxia** ever since and have been concentrating on work and resting. 

** Ataxia is the medical term for lack of voluntary coordination of muscle movements. In MS this can be seen as clumsiness, unsteady gait, impaired eye and limb movements, and speech problems.  In some cases, the lack of coordination is seen as tremor. 

Read more about Ataxia here …MS Trust – Ataxia

Other than that, it has been a really good week.  I’m still feeling thrilled at the amount of money raised at our evening event and still receiving donations from people who couldn’t make it …thank you again everyone. 

I was planning on taking a step back from fundraising over the next few weeks as I have a lot to do to get ready for my trip to Russia, but I’ve been contacted by a few people with amazing offers of help …

🧝🏽‍♀️ My fabulous friend, Beth, has recently learnt the art of Tarot reading, so we are planning a small evening of readings, drinks and nibbles sometime soon.  Thank you Beth xx

☕️ A local coffee shop / bar has offered to host an event …more info to follow once we have it.

🍲 A Chinese restaurant has been in touch to offer a fundraising evening.  We are at the very beginning of planning this one, but hopefully another fun evening coming soon! 

In addition, we have a few fundraisers already in the pipeline …

Glenda is taking part in a sponsored 10K Nordic Walk in April.

Niamh and a team of workmates from Stephenson’s are taking part in the Manchester Gung Ho inflatable 5K at Heaton Park on 6th April.

Alex, Connor, Gleaves and Carl are still working on their mammoth 100K (58 miles) Peak District Mountain Bike challenge. 

 Cal’s head and chin shave is coming soon!

I am planning to pay for my treatment before we fall off the Brexit cliff on 29th March, so will be borrowing the outstanding amount (and will continue to fundraisers when I’m well enough).

In other news, I have started the process of arranging Visas for myself and Karen this week …it’s really happening folks!  🇷🇺

I didn’t want to finish this post without acknowledging a big event in the MS world that took place this week.  As you maybe aware, Hollywood star, Selma Blair was diagnosed with Multiple Sclerosis last Summer.  This week, she rocked on the red carpet for the Vanity Fair Oscars afterparty, with a custom made cane, looking beautiful, fierce, vulnerable and so much more. 

She has also given a TV interview, despite being in the middle of an MS relapse affecting her speech.

Selma speaks openly and honestly about her MS on her Instagram page and has also had an interview published in Vanity Fair.

Thank you Selma for not hiding away and for your honesty in sharing the ups and downs of living with MS.  There is much happiness to share too and I’m glad that people are getting to see that. 

GoFundMe

42 Fundraising events

Well our fundraising page has been up and running for 6 weeks now and this is the grand total you have all helped to raise …

Never in my wildest dreams did I think we would be this successful and it has warmed this old heart so much to see such kindness.  I am grateful for every penny donated and am particularly touched by donations from people who don’t even know me and from friends who I know don’t have a lot.  I am aware that many of us  are living in financially challenging times, so fully understand that not everyone can (or wants) to contribute 😘

From the start, we wanted to make sure that we were doing things to earn your contributions, rather than simply crowdfunding.  All of these events need a lot of thought and organisation  – not easy when you have a full time job, a busy life and wobbly legs as well as brain fog and fatigue!  I really appreciate all offers of practical help and couldn’t have got this far without family and friends sacrificing their time ..thank you all 😘

Here is an update on events still to come …

Christmas Second Hand Toy Sale

My nieces, Kyra and Fiona, have gathered up everything they can find in their bedrooms and hidden away in the cellar and are preparing to sell it at an organised event this Saturday.  They live near Cologne in Germany, so if you’re near there and want to know where the sale is, get in touch!

Dry November 

My fabulous friend, has volunteered to have an alcohol free November.  As you can see, Julie is the cocktail queen of Stockport, so this is a big sacrifice for her! 

Although it’s not yet November, Julie has already started her ‘go dry’ challenge and has managed a fun night out on soda water alone! 

If you know Julie and would like to sponsor her, please see her in person.  

If anyone else would like to encourage Julie with a small donation, you can do so via our GoFundMe page (link below). 

Disclaimer: Julie is actually very sensible and does not have a drink problem 🥂

Wilmslow Festive 10K

Niamh, Callum, Jess and Jake will be taking part in this event on Sunday 25th November. Training has begun and thankfully, Niamh’s hip seems to be holding up! 

Head and Chin shave 

Callum will be succumbing to the scissors in early December.

Evening Event

We are still in the planning stages for this but are hoping as many people as possible will come along a support us and have a fun evening of music, food and drink.  We already have visitors travelling from the Isle of Man and from Germany to attend!  Date to follow …

Peak District Mountain Bike Challenge

The five cycling lads have had a couple of set backs and are now running out of daylight!  They have decided to follow advice and delay their cycling challenge until March of next year.  This is because they have worked out that the ride will take 12-14 hours and for safety reasons (and to preserve my nerves) it would be better to not be doing some of it in the dark! 

They plan to spend the next few months getting in as many training miles as possible. 

As you can see in the photo above, they were out on the Peaks on Sunday, with Connor filming part of their route using a helmet camera …I’ll upload some footage from this when I’ve worked out how to! 

Tandem Sky Dive

More information to follow when we have it.

we are still open to ideas and offers of help, so please get in touch if you have any 😘

GoFundMe

41 Head and chin shave

Yesterday I received a message to have a look on Facebook.  This is what I found …

Callum (the one with the long hair) is my daughter’s boyfriend and Calum is his friend (you can tell them apart by the number of l’s).

The message above says …

“Right then folks , this guy has agreed to let me shave his head and beard if we can raise £2k to put towards a great cause , have a read here. https://www.gofundme.com/another-ms-warrior If you’d like to donate please comment “ Callum’s head shave “ on this post so we know when we’ve hit the target and can get this guy looking 12 years old again 😂 Soon as we hit the target I will be posting a video for everyone to watch and laugh!”

Callum has been growing his hair for over 4 years now and has volunteered to, not only have it cut off, but to have his head and chin shaved too.  Thank you Callum (I expect I will feel guilty about this one for 4 more years!).

Callum loves his long hair and has only agreed to give it up for a price … £2,000  Money and pledges are rolling in already …going bald is clearly an attraction! 😱

The head shave will take place in early December and of course, we will update with photos/video then.

Callum will be donating his hair to The Little Princess Trust.  You can read more about their work by clicking this link.

In other news, we have launched our Facebook page today …

Please click on the image and like, share, post 😊