Tag: Bald Eagle

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

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.  

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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!  

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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

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