Tag: Swan Brewery

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

125 Isolation

What is this strange world in which we are now living?  Nothing is as it was and it’s very unsettling.  

This has been a really tough week for many of us and I hope you are managing ok and doing all you can to keep yourself and others safe.  

Last Monday, I should have been flying to Moscow for HSCT.  I’m so disappointed to not be having my treatment and the emotional shock of this change has been very difficult.  For me and my family, everything has been building towards that day and that one aim, so it knocked us for six when it didn’t happen. 

As we have moved though the week and the threat of CV19 has increased, and all the necessary restrictions have been put in place, I have become increasingly thankful to be at home and to be feeling relatively safe.  The thought of trying to travel home from Russia in this situation really scares me … so I’m going to sit this out and see what happens when life gets better for us all. 

I spent most of Monday and Tuesday in a state of emotional shock about this big change, with the rapidly evolving CV19 situation as the back drop.  On Wednesday I had a telephone appointment with one of Professor Sharrack’s team in Sheffield.  I have to say that this was the best neurology appointment I have ever had!  He really took the time to ask me how I am, what has changed since my last appointment and how my symptoms are impacting on my life.  He was also pleased to find that I was still here and not planning to go to Russia anytime soon.  I’m not sure what my rights are to choose my own consultant, but I intend to find out and choose this one if I can.

The upshot of the appointment is that I should have had a brain and spinal cord MRI in January and no one seems to know why it didn’t happen.  So, I am to be referred again and will have a further consultation when the findings are known.  Obviously I have no idea when this scan might take place, but at least I’m still in the system somewhere!  I was also informed that the hospital in Sheffield have suspended their HSCT for autoimmune diseases because of the risks presented by CV19.

There was another devastating blow this week when we realised that the Swan Brewery head shave and Bald Eagle beer launch event cannot go ahead.  Jimmy and Gill have worked so hard for this and are now having to work doubly hard to protect their small brewery business from the current crisis. 

If you are in the Leominster area and would like some good beer as an occasional isolation treat, check out their collection or drop off options here …

Swan Brewery

On Monday, I discovered that both Niamh and I are on the government list of vulnerable people – me because of my MS and Niamh because of her asthma.  

I decided I need to “socially distance” and self- isolate as much as possible ..something I found very upsetting and depressing to begin with.  On Wednesday, we made the decision that we should not be together.  Niamh lives part of the week with me and part of the week with her boyfriend, Callum and from now on, will be living at Callum’s.  It was incredibly upsetting for us both when she came home after work to collect a few things, blow kisses and say goodbye from a distance …but it was the right thing for us to do.  

Yesterday Niamh dropped off a food parcel after work.  I thought I’d feel upset and it was hard not to hug her, but it really did give me a boost to speak to her and to see her in the flesh.  

On Thursday I went back to work.  When I say “went” I didn’t actually go anywhere at all, but worked from home.  All of my team have been working from home since Tuesday and both my employer and team manager have been amazing at ensuring everyone is safe and able to work.  We have a work WhatsApp group and are keeping in constant touch with each other, which is great.  I didn’t want to go to the office at all, so a colleague collected a few things and brought them to me and we even managed a short socially distanced chat, with me on the door step and her on the pavement!  It’s good this is happening at a time when there is a break in the usual rainy weather!  Thank you Jan and lovely to see you ?

On Wednesday evening, the government announced that schools in England would be closing to most pupils from Friday afternoon.  It’s actually incorrect to say that schools are closed – most are, in fact, open and will be providing care for the children of key workers as well as those who may be vulnerable.  I work with children who are in care and who automatically come under the vulnerable heading, so it’s been a hectic couple of days trying to ensure everything is in place for them as it should be.  The task was made more difficult because of both the lateness and vagueness of government directions and the variety of ways in which these were being interpreted. 

Most council staff who are able to work from home are now doing so and our IT systems weren’t designed for this level of remote demand, so there have been challenges, but we are doing our best. 

All in all I have enjoyed being back at work.  It has been good to have something different to focus on (other than on myself!) and to feel I am doing something useful. I am absolutely exhausted though!

I’m glad it’s now the weekend and plan to catch up with friends and family via Skype, messenger, Facebook, whatsapp, text and good old fashioned phone call. How would we have ever coped with this situation without technology and access to the online world?!  I’ve even been invited to a virtual pub lock-in!

I also plan to make some lists of things to do whilst at home and create a bit of a timetable for myself.  I definitely function best with a bit of structure and purpose in my life.  In addition, I will be reviewing my food situation and having a stern word with myself … if I continue as I am, I may well avoid the virus but I am likely to become a very fat alcoholic, which I’d also like to avoid.

The government and NHS websites are being updated regularly with advice and guidance on what we should all be doing to protect ourselves and each other and I am also checking various MS/CV19 pages too …

NHS COVID-19 page

Coronavirus (COVID-19): what you need to do (Government page)

MS Society COVID-19 page

Professor Gavin Giavannoni’s MS and COVID-19 Microsite

So this is my life for now.  Living and working in this little house on my own, with two crazy cats for company. I hope to keep in touch with the people who matter to me and I hope to get myself into some sort of routine that also includes time outdoors.  I am dependent on others to do my shopping and bring me what I need …this doesn’t sit easily with me but I’m going to assume that no one will offer help unless they genuinely wish to provide it. There is an amazing local community group emerging where I live, offering all sorts of help, home deliveries etc. so I’ll be making use of that too.  Most human beings are fantastic in crisis!  (We won’t mention the virus deniers and panic buyers for now!)

121 To wig or not to wig?

As you already know, I will almost certain to lose my hair during the chemotherapy part of my treatment.  When I first started researching HSCT, I was pretty horrified at the thought of being bald.  I like my hair and as a woman, feel it is part of my identity.  As I have travelled further along this road, I have changed my view on this and am now viewing the phase of hair loss as a positive symbol of my body responding to the chemotherapy and regrowth as a symbol of recovery.  

A couple of people have asked me why I won’t be wearing a cold cap during treatment.  The cap can be worn during chemo to reduce blood flow to the head, so that there is a reduction in the concentration of harsh chemicals getting to the hair follicles.  Many people having chemotherapy for cancer have successfully preserved their hair in this way.

During HSCT, the purpose of the chemo is to partially ablate the immune system.  As immune cells exist throughout the body, it is important that the chemo drugs are able to circulate everywhere, in order to maximise their impact.  In short, wearing the cold cap could cause a few immune cells to hide in the scalp area and thereby avoid the chemo.  

So, I have accepted that I will lose my hair!  And I feel ok about that.  

Over the last 6 months I have adopted a shorter hair style to prepare myself a little for what’s ahead. I have surprised myself by actually quite liking having shorter hair. When in Russia, there is a point in the treatment schedule when patients shave off their hair. This is because shedding hair can present a potential infection risk to those with a compromised immune system, so it’s better to shave it off before this happens.

I must admit to being slightly intrigued about what I will look like with no hair!  I have followed many others online through treatment and notice that many people actually look really good bald!  I’m not expecting to fall into that category, but I’m not planning to be too obsessed about it either. 

I have bought a few scarves and chemo sleep caps to wear during the early stages of my baldness and have also started to look at head wrap instructions online.

For anyone who is anticipating hair loss, this website has a lot of good advice … Headcovers Unlimited.

What I haven’t worked out yet, is whether I will be happy to rock a headscarf until my hair has grown back sufficiently, or whether I will want to wear a wig.  

It seems there are lots of places one can buy wigs these days and I’m not sure where to start.  There is a huge variation in cost, from under £50 to several hundred pounds.  Some are made using man made fibres and some from human hair.  I understand that it is possible to buy a refurbished wig and that there are organisations that provide refurbished wigs for those who have hair loss due to medical conditions and treatment …but I’m struggling to find out how to access this service. 

So, if anyone out there has any wig buying knowledge or experience they are able to share with me, please get in touch.  

—- ??‍???‍???‍? —-

Jimmy and Gill are planning to shave their heads to raise funds for my treatment … both seem totally unfazed at the thought of being bald, which I find quite inspiring. The head (and chin) shaving will take place at Swan Brewery in April, when they will also be launching a new beer to celebrate their baldness.  

I am back at work tomorrow after a week off for half term.  I am quite worried about how I’m going to manage, as my head is all over the place, I’m not sleeping and I’m terrified of coming into contact with germs!  

—- ??‍???‍???‍? —-

It’s just 3 weeks (tomorrow) until I travel to Russia …I can’t wait!  Plans for our final fundraiser are well in hand and I am looking forward to seeing friends and family before I go …I’m sure it’ll be an emotional day.

Swan Brewery

 GoFundMe

110 Ups and downs

Well it’s been another week of ups and downs here at Warrior Towers.  After a week off work, feeling physically and mentally low, I managed to pick myself up in time to get myself to work on Monday.  It felt good to be there …I work with the most amazing team of kind and supportive people and I love the work we do (supporting children in care to achieve in education). 

Unfortunately, by lunch time, I was struggling.  The pain in my right hip, both thighs and left lower leg got worse and worse through the day and I found the noise and lights in our busy open plan office to be a challenge to my ears and eyes.  

By the afternoon, I was struggling to follow conversations and to process information.  “Brain fog” is a real and frightening symptom commonly experienced by those with MS.  The brain is working so hard to deal with the attacks and damage to the central nervous system, that there is little left to deal with the extra challenges of life …or of work.  

I went home on Monday and cried.  Never have I felt such a failure …and a fraud.  I care so much about the children I work with, but they are so important and deserve the very best support, not someone who isn’t functioning properly.  

I decided not to go to work on Tuesday.  My GP has provided a sick note, which has gone some way to alleviate my guilt for not being at work.

Like all of those working in the public sector, we are over stretched and under staffed.  I know that me being off work will add additional strain on my colleagues, at a time that’s already challenging, but I don’t feel I can be at work when I’m not able to do my best, or at least do a good enough job.  Thank you to my wonderful team for everything ?

I have spent the week mostly resting and not doing much at all.  The trouble with being off work is that it gives you too much thinking time …not good for an over thinker like me!  I have managed to relax a little and to live in the moment rather than worrying too much.  I use a meditation app called Calm, which has really helped and I’m starting to feel a little more level. 

On Wednesday I went to a lovely pre-Christmas event at Seed, my local ethical beauty salon and returned the next day to have my nails Christmasified!  Small things, but both lifted my spirits immensely.  Today I met my lovely friend, Anne for lunch and girl friend therapy, so tonight I’m ending the week feeling more positive than I did at the start.

A few other things have happened this week …I discovered I have a routine appointment with my usual neurologist on Monday …lucky timing for once.  I’ve had telephone contact with Professor Sharrack’s secretary to try to get my appointment with him moved forward (from February) …no answer on that one yet.  I also have an appointment with Occupational Health next week, to talk about work and the support I will need in the future.  I really want to continue working …I love my job and my team, I believe in what we do and when I’m well, I believe I do a good job.  With all these phone calls and appointments, being unwell is becoming a full time job! 

Today, I received a letter from the DWP.  I knew this was likely to be the outcome of my application for PIP (Personal Independence Payment.  With sweaty, shaky hands, I opened the envelope, fully expecting my application to be rejected, only to find I am to be granted lower level PIP!   I am delighted with this outcome.  For those of us with additional difficulties, life becomes more and more challenging and it also becomes more and more expensive.  I have had to reduce my working hours because of MS and this payment goes a (very) little way towards addressing the shortfall.  So the week has ended on a positive note and I’m very grateful.  

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Some of you may know that my brother, Jimmy and his wife, Gill, opened their own brewery a few years ago.  Since then, Swan Brewery has gone from strength to strength and they already have a number of awards under their belt.  

The brewery holds regular and popular open days and Jimmy and Gill have decided that the focus of one of these days will be for them both to have their heads shaved to raise money for my treatment fund!  Jimmy is currently sporting a rather impressive beard and this too will be shaved off!  To commemorate this occasion, they will also be launching an exclusive new beer …they have been running a customer vote on Facebook this week to choose the name of the beer …head over to their Facebook page to find out the winning name.

This Sunday we have our stall at the Merry Little Christmas Fair at Stockport Vintage Village.  Thank you so much to Sheila and Alan for their support.  I will be there for an hour or two, if I am up to it and would love to see you there if you can make it.

The lovely ladies at Seed Beauty are pulling a plan together to climb mount Snowden to raise money towards our treatment fund.  They have been persuaded to delay this until spring, when the weather will hopefully be more favourable.  More info on this at a later date.  

Thank you to everyone who has responded to our Christmas card appeal – making a donation instead of buying Christmas cards …I am touched by your kindness.

We have a few other fundraising plans in the pipeline, but will let you know about these once we have more detail. 

Read more about MS “Brain Fog” on the MS Trust website here … MS Trust

you can find out more about the Calm app on their website … Calm They are also on social media.

You can find out more about Seed Beauty on their Facebook page (Seed – Beauty Therapy) or Instagram (@seed_beauty_158).

Apply for PIP here … PIP (Please seek support with this. I plan to write a more detailed post on the whole process at a later date).

Find out more about Swan Brewery here … Swan Brewery (or on their Facebook page).

Full details of Stockport Vintage Village can be found here … Vintage Village (they are also on Facebook, Instagram and Twitter).

Thank you once again for your ongoing support.  The last few years have been tough and fundraising is a daunting task, but one thing I have discovered is that people are mostly kind, supportive and generous and for that I am eternally grateful …thank you ?

GoFundMe


74 A few thank yous

With just one day to go until our fundraising evening, it’s time for me to thank a few people.  It’s been really hard work to put this event together and in particular, to do so with minimal expenditure.  We have had so much amazing support and I am truly blessed to have so many kind people in my life.  

I’d like to thank the following for their amazing generosity…

  • McCann Manchester for letting us use their fabulous venue.  A special thank you to Joe for arranging this for us.
  • Sharon from Spoilt for Choice, Cheshire for decorating the room.
  • Dave Gilmore from David Gilmore Design for all his hard work with the tickets, slide show and various other graphics.
  • Swan Brewery for providing all the beer and lots of other help and ideas.
  • Heather and Nick Chick, chefs extraordinaire, for preparing the food.
  • Our wonderful musicians …                          

Ashleigh

Dan and Chris

  • Everyone who has donated raffle prizes.  We have received so many lovely items and we are touched by your kindness.  The following businesses have also kindly donated …

Essence Hair Studio, Heaton Chapel (find them on Facebook and Instagram)

Seed Beauty, Edgeley (find them on Facebook and Instagram)

Droylsden Subaqua Club 

The Vintage Village, Stockport

Inspire Travel

The Bun & Bones Club, Hazel Grove (find them on Facebook).

Many friends and family have pulled together to help get things in place, but I’d like to give special thanks to Connor, Niamh and Sophie who have given up a lot of their time to take the pressure off me and make sure everything is in place for tomorrow.  They really have been amazing!  Also, thank you to Glenda who has travelled over from Germany and to Jimmy, Gill, Anna and Zeb who have come up from Herefordshire for the weekend …your help and support is very much appreciated.

Lastly, thank you to everyone who has bought a ticket and also to the people who are unable to come but have made a donation.

See you there! ????

GoFundMe

68 Tickets, ticket, tickets!

The tickets for our fundraising event are finally ready! 

I’d like to thank Dave Gilmore for designing and printing them and Niamh for cutting and perforating them. 

Tickets are £10 each, children under 10 are free (please let us know if you are planning to bring children so we have an idea of numbers).

The evening will start at 6.30pm and will go on until midnight.  We have a few live music acts lined up – dancing and singing along most welcome!  There will be a bar, selling Swan Brewery beer and various other refreshments. 

We have a few items that we plan to auction – this will begin online in a couple of weeks and end during the evening (more info to follow).

Raffle tickets are also now for sale.

We have had lots of amazing raffle prizes donated, with new items coming in all the time.  Raffle tickets are 50p each.

A small selection of raffle prizes


If you have anything you could donate or know of any shops or services who may be willing to provide a voucher, we’d love to receive them …the more prizes we have, the more raffle tickets we’ll sell and the closer we’ll get to our fundraising target. 

All business donors will be mentioned in this blog, on our social media pages and on the night.

If you would like to see more of Dave’s fabulous work (including the Manchester bee paper straw design) please see his website …

davegilmoredesign.com

You can find out more about Swan Brewery here …

swanbrewery.co.uk

If you would like to make a donation to our fundraising account, please do so here …

GoFundMe

Please spread the word!

Thank you again for all your support ?

59 Christmas recovery

I hope you all had a wonderful Christmas and are recovering from the festivities. I know I have a few readers with MS, so I’d like to give you a special mention – I hope you had a restful, stress free Christmas.

I spent Christmas at my brother’s house, where we managed a bit of a family get together …14 of us all together on Christmas Day was just lovely ❤️

It was my birthday on Christmas Eve and I started the day with my niece and nephew, Anna and Zeb for company.

Later, we all met at the brewery, where we had picnic lunch and a good chat about beer!

After a couple of mulled wines in the village social club, we made our way to the annual Christingle service in the village church, before going home and welcoming late arrivals, Connor, Niamh, Sophie, Callum and Odin. 

Christmas Day was full of joy, presents, noise, laughter, food and drink.  The weather was mild and we managed a muddy walk, with Zeb as our guide.  Sophie has been learning the proper way to use trecking poles, so after a quick lesson, I was off! I even had to remove the ferrule protectors and use full “spike mode”!

After this much exertion, a visit to the village pub was needed, then home for more food, more drink and a few rounds of our new favourite game “Werewolf”. 

Thank you Jimmy, Gill, Anna and Zeb for looking after us so well and an extra thank you to Zeb for giving up his bed for me! Thank you also to Glenda, Axel, Fiona, Kyra and Max (honorary family member!) for helping to make this such a lovely Christmas.

My family are all wonderfully supportive of my fundraising efforts and I received various donations from them …they really are an ingenious bunch! (See latest donations and update on my Go Fund Me page for details). 

My amazing children have both cut back on Christmas purchases this year and instead made generous donations to the fund …thank you both for your kindness and for everything you are doing to support me ?

The next fundraiser is the Run Through Victoria Park half marathon on 5th January …Go George Go!

A date for your diaries …

Our evening event will take place on Saturday 23rd February.  We are planning to make this an evening of music, food, drink and fun! A silent auction and raffle are planned and we will also raise funds by making a small ticket charge for entry. 

More info will follow nearer the time, but in the meantime, if you are able to help in any way, please get in touch.  We would also welcome anything you can donate to raffle or auction …unwanted Christmas gifts, bottles, services, vouchers etc.

Fundraising page … GoFundMe

You can find out more about my brother’s brewery here … Swan Brewery 

Werewolf … PlayWerewolf

Details of the half marathon can be found here … Run Through UK 

40 Cakes, cakes cakes! ?

Yesterday, the Herefordshire arm of the family held a coffee morning, cake sale and raffle to raise funds for our campaign.  

Jimmy and Gill have a brewery business and have been selling raffle tickets to brewery visitors for a few weeks now.  They managed to gather some super prizes from the local community, as well as donating some of their own produce.  

 

Gill is renowned in our family, for her amazing culinary skills, which she seems to have passed on to Anna and Zeb!

 

The event took place in their lovely home and it looks as if it was lots of fun.  Anyone who follows Swan Brewery on Facebook will know that Gill never misses an opportunity to dress up and this was no exception.

And just look at those amazing cakes! 

There were a few cakes left at the end of the morning so Anna and Zeb packed them up and sold them to some of the spectators at the village football game in the afternoon. 

Today, they have managed to count all their takings (including a jar of pennies donated by their neighbour!)

The grand total of all their hard work is …

This brings our grand total past the £6,000 mark ..I am so grateful to everyone who has helped us to get this far ?

Thank you for all your efforts Anna, Zeb, Gill and Jimmy and also the people of Wellington and customers of Swan Brewery ?

You can find out more about how Swan Brewery was born, their environmentally friendly ethos and their amazing selection of beers here …

www.swanbrewery.co.uk

They are also on Facebook and Twitter. 

In other news…

The cycling lads are out in the freezing Peak District as I am writing this …I’m just hoping they manage to avoid the snow that has fallen there over the last 48 hours! 

We now have so many local musicians volunteering for our evening event in the new year, that we may need to have two events! 

We are planning to contact local media at some point but things are already starting to happen without us doing anything!  I have been contacted by a company who are making a documentary for Channel 4 about people funding their own medical treatment and Niamh has established a contact at Smooth Radio.

In the meantime, please follow us on Instagram and Twitter and share with your contacts.  Thanks again for your continuing support ?

gofundme