Tea Party – Another MS Warrior

122 Tea Party thanks

What an amazing afternoon we had on Saturday! Thank you to everyone who contributed or attended.

It was a busy few days on the run up to the event, finalising numbers and ensuring we had everything we needed. Lots of people donated bottle bags and bottles or lent us cake stands …many thanks. If your cake stand doesn’t come back to you soon, please let us know and we’ll make sure it does ?

St Mark’s Church allowed us to use the church hall at low cost and arranged to give us the key on the afternoon. Many thanks to Ruth and St Mark’s for supporting us. It took a little over an hour for our hardworking team to get the room set up and ready for guests.

Niamh, Connor, Sophie, Callum, Glenda, Sharon, Lauren and Karen did an amazing job to get everything in place to welcome 80 guests for afternoon tea. Thank you to you all ?

Sharon was our “creative director” and prepared the lovely tea shop style table decorations. Thank you so much Sharon ?

We also had a glass of fizz available to those who wanted it ?

Meanwhile Heather and Nick has already put in several hours preparing a delicious afternoon tea, with a range of dietary needs catered for. They continued their hard work in the hall kitchen, including arranging all our many borrowed cake stands! Thank you so much Heather and Nick …you guys are awesome! ?

A couple of friends offered to run stalls at the tea party …thank you to Sheila, Emily, Gemma and Gemma’s lovely mum (apologies, I didn’t get your name!). Thank you also to Beth who came along to help. Both stalls made some good sales and added funds to our total ?

It was soon 3.30 and our guests started to arrive. It was so lovely to see so many friends from all sorts of areas of my life and friends of my children too. I really am touched that you all wanted to come and support me.

I was planning to do some sort of speech during the tea party, but was a little bit of an emotional wreck, so decided against it! Some of this post has been written using the notes for my speech.

I want to thank my sister, Glenda, for coming to stay for the weekend, helping on the day, bringing her calmness and providing me with lots of support ?

A big thank you, also to my brother, Jimmy and his family, Gill, Anna and Zeb, who travelled from Herefordshire to help and to support the event. It was lovely to see you guys, though not for long enough this visit! ?

My lovely friend, Karen, was a fantastic help on the day in getting everything ready and making sure everyone got the right food. She also surprised me with a tree of messages which guests added to throughout the afternoon. The messages are now in an envelope to take with me and I will read them at some point when I’m in hospital. Thank you so much Karen ?

Thank you to each and every one of you who came along on the day, the kind people who donated, despite being unable to attend and also to the friends who planned to come but decided to stay away, when they felt a little unwell on the day, just in case I caught something ?

The afternoon tea was delicious and I received so many compliments to send to the chefs. Niamh and Sophie were a fantastic team, making sure everyone was fed and with the right food! Thank you all of you ?

We ran a bottle lucky dip stall, which was an amazing success and used only donated bottle bags and bottles. Connor and his great friend Finley, were in charge …thank you both ?

We perhaps should have thought about making this a little more child friendly, but I’m sure there were some happy grown ups who were able to enjoy the prizes won by their kids!

It was a very emotional day for me. I initially thought I’d avoid hand shakes, hugs and kisses in order to protect myself …as you probably noticed, that soon when out the window! I was touched by your kind words, messages and cards and really did feel lifted by all your encouragement.

There were a couple of noted absences …

My dear friend Anne who has been an amazing support over the last couple of years, was needed somewhere else and was very much missed. Thank you to her family members who still came along ?

Another friend, Glynis, was unable to make it and had the best ever excuse … on Wednesday after several years of illness and regular dialysis, she received a kidney transplant. She is recovering well, but not quite well enough for tea and cake just yet! Get well soon, Glynis ?

Clearing up was thankfully much quicker than setting up and we were soon on our way home. It has taken me a couple of days to recover (which is why this update wasn’t posted sooner!). Thankfully, Glenda is a maths wiz and was able to count the cash and do the sums. Amazingly we made a grand total of …

How amazing! Thank you to everyone mentioned above, everyone who came along, donated or supported us in any way. I really am blessed ??

Obviously I am now up to my ears in finalising travel plans, packing and preparing. There has been a lot going on with that too, but I’ll save it for another post.

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122 Two weeks!

It’s just over two weeks until I fly to Russia and I’m feeling every emotion going! I’m scared, excited and slightly panicked, but mostly positive and optimistic. There seems to be a lot to do at this late stage …stuff to buy for the journey, stuff for being in hospital for a month and more stuff for when I get home. I’m in almost daily communication with the clinic and finalising visas, transfers, contract and payment …it’s all go! And it’s all stressful!

I went back to work on Monday after the half term break, but my head was all over the place and I struggled to keep focussed. I care about the work that I do (supporting children in care to achieve in education) and it concerns me a lot when I’m not able to do it to the best of my ability. I saw my GP on Wednesday and she advised me to stay off work for the time being. It feels strange to not be in work but I think it’s the right thing to do.

It was strange talking to my GP about my final plans for treatment. Obviously I have been talking to her about HSCT for a long time and she has been very supportive and encouraging, making the referral to Sheffield and discussing my options at every stage. Officially, she can’t fully support my decision to go to Russia and I sensed I have put her in quite a difficult position. She has seen my decline over the last couple of years and understands my decision to take action.

My GP’s main worry is my safety on the journey home. At this time I will be recovering from a pretty gruelling treatment and will have a suppressed immune system. I know my family are very worried about this too. I have done everything I can think of to minimise the risk …

For the first time ever, I will be flying business class on the journey home, with a stop off in Frankfurt (in the business lounge!) on the way. I’ll be very careful about what I eat and drink. I plan to wear a mask, wipe down with disinfectant wipes everything I will have contact with, to wash and disinfect my hands often and to keep them away from my face. My GP suggested keeping as far away from other people as I can. Many others have done this journey before me and I’m confident I will be just fine.

In the current era of the Corona Virus, there is much discussion everywhere, about hygiene and infection prevention. I saw something on TV the other day about hygiene when travelling. Apparently the dirtiest item you will touch when flying (in terms of bacteria and viruses) is this …

I suppose everyone puts their personal items in there, including shoes, bags, coats they have just taken off, contents of their pockets etc …and I don’t suppose they are ever cleaned! I’ll be thinking carefully about how I put my things in the tray and will use hand sanitising gel straight after.

Airport Security Trays Carry More Cold Germs Than Toilets, Study Finds

Yesterday I had my nails done for the final time before I go. I decided to go for it with the colour …

My lovely friend, Katy from Seed Beauty always does a good job with my nails and although she may not know it, has been a brilliant support over the last few months. She will be devising a facial / bald head massage once I am well enough when I’m home!

Arrangements for our tea party on 7th March are well in hand and we are all looking forward to it. If you are coming and haven’t yet paid, please get in touch with one of us. I’m looking forward to seeing lots of friends on the day. I want to send a big thank you to everyone who has helped in a host of different ways, to make this happen …I am forever grateful.

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120 29 Days!

It’s less than a month until I make the journey to Russia for HSCT …I can’t wait!

My flights are booked and I have started packing and preparing. I’m feeling really positive and happy with my decision to do this. This disease is devastating …it gradually robs you of so much of your life and totally takes control. Now I am taking back control, fighting back, making decisions for myself rather than just letting this disease take over. Mentally, I feel better than I have for a long time.

My MS symptoms continue to cause me problems. I no longer feel safe in my own home as the stairs are so challenging for me. My house was built in the late 19 hundreds and no one thought about disabled people then! I struggle every day with fatigue, pain, brain fog and a host of other low level but concerning symptoms.

But I’m optimistic. I’m taking matters into my own hands and it feels right.

I have started buying things for my trip to Russia and preparing for my return home. I still have a lot to do and my preparations also include trying to take good care of myself, prioritising my well-being and avoiding anyone who is unwell!

My family and friends continue to be a fantastic support …I really couldn’t do this without you all …thank you ?

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We are planning a tea party as a final fundraiser and an opportunity for me to see as many friends as possible before I go.

We have had an amazing response to this event – thank you to everyone who has replied, paid or offered support. I am delighted that my brother and his family are coming up from Herefordshire and my sister is coming over from Germany… it’s amazing how far people will travel for cake!

We have a limit of 80 people for this event so if you’re planning on coming, please make your payment as soon as possible (£10 for adults £5 for children). We are happy to take payments via PayPal, so do get in touch if this would work for you.

If anyone close by has a tiered cake stand we could borrow, please let us know. We’ve already been offered quite a few and I found a lovely one in a charity shop the other day. We need at least 20, so still looking for more.

It’s half term here this week …I am so relieved! This has been the longest half term ever and every day has been a struggle.

I will be doing some more Russia preparation, catching up on sleep and have just returned from a few days away with this lovely lot …

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117 MS and HSCT online roundup

I am so glad to have this illness at a time when we have access to information, opinion and support online. If my only source of information was my neurologist, my life would be a complete mess by now!

I am a big supporter of the NHS, my parents were both GPs and I’ve been on marches to protest funding cuts, but … I really don’t think the NHS has it right yet, in managing chronic illness and supporting patients with long term health problems. It is common for MSers to have a long fight to be taken seriously, to be referred to a neurologist, to be diagnosed and then to receive appropriate treatment and support.

Meanwhile, in other parts of the world, rapid diagnosis and early treatment has been shown to be the best option for patients in terms of minimising progression and disability and the most cost effective for health services.

At present, I see my neurologist for 10 rushed minutes once per year. He doesn’t even ask me about new symptoms or my opinion on anything! It’s a very deflating experience and I don’t feel at all supported (probably not his fault – what can he do in 10 minutes?). I should have had access to an MS Nurse for ongoing support and advice for the last few years, but unfortunately my neurologist forgot to refer me and I have slipped through the net (despite numerous phone calls and requests from me).

I recently had an appointment with an Occupational Therapist, which has been a really positive experience. She has given me advice, access to equipment and most of all, she has listened to how MS affects my life. She has also managed to chase up the MS nurse service and they are finally acknowledging my existence! Thank you Hannah ?

I have learnt a lot about MS through reading and researching online. The MS Trust, MS-UK, Shift MS, the MS Society (amongst others) are all excellent sources of information and guidance. Another source of knowledge is Dr Aaron Boster, who is an Ohio based MS neurologist with a Youtube channel, where he seeks to educate and empower people with MS. Dr Boster works on the premise that neurologists and other practitioners working with MSers should have the goal of helping each person to be the “most awesome version of themselves”. I love this! I want to be the most awesome version of me that I can be! Here’s a short video in which he answers viewers questions on how to manage their MS symptoms …

There are many other videos on a variety of topics linked to MS on his YouTube channel … well worth a look if you, or someone you care about, has MS.

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I have spoken before about following the journey of Scott McCormick (Gogglebox) as he underwent HSCT at Hammersmith Hospital in London. Scott is recovering well, has had no further disease progression and is now back at work and enjoying life. He is doing all he can t raise awareness of HSCT.

He has written a couple of blog posts for MS-UK to summarise his experience …

Part 1 My neurologist tried to talk me out of having HSCT

Part 2 I was told to expect the worst I could imagine, and then some

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My main source of information, advice and personal accounts of those who are seeking or have had HSCT has been through the UK Facebook support group. This is a closed group for MSers and their supporters only.

I thought I’d share the link in case any fellow MSers are interested … link

Another source of support is a new UK charity, AIMS (Autoimmune and MultipleSclerosis), which was set up a little over a year ago. A group of MSers and their partners experienced the tough journey to access HSCT and they set up AIMS as a means of helping others on that journey. They are now a flourishing charity and have started rolling out travel grants to those of us having to go abroad for treatment.

You can read more on their website here. I would recommend anyone who wants to know more about the treatment, to read their excellent summary “What is HSCT?”. AIMS also have an active social media presence and can be found on Facebook and Twitter …please follow them and share with your friends.

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On Monday it will be just 6 weeks until I set off on my journey to Moscow in an attempt to stop my MS progressing further. I’m feeling really positive about my decision and so grateful for the support of my family and friends ❤️

I’m a little tired and stressed, but this is more about the worry of getting myself and my home ready and managing all the planning and practicalities involved.

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We are still fundraising and have a long way to go before we reach the total needed to fund my treatment. A family member is kindly lending me the outstanding funds as I am worried about delaying my treatment any further. This means that I will be continuing to fundraise after my treatment so that I can repay my loan.

My journey to Russia begins on Monday 16th March and we are holding a fundraising fare well tea party on Sunday 8th March. We’re still finalising the details and will share those with you soon, but please put the date in your diary … we’d love you to come along and bring your friends and family ?

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116 Latest news …

It has been a hive of activity here in down town Edgeley this evening and I have some exciting bits of information to share with you …

My flights to Moscow are now booked! After two days of online searching and careful consideration of various options, I am booked to travel out on Monday 16th March and back on Wednesday 15th April. I will be travelling via Frankfurt in both directions and for the first time in my entire life, by business class on the journey home. I’m so relieved to finally have my travel plans in place …it’s really happening folks!

We are planning to hold a fundraising afternoon tea party before I go and hope that many of you will be able to come. We think we have a venue for up to 80 people, thanks to my amazing friend (and boot twin) Anne.

The date for this is Sunday 8th March …please put it in your diary, tell your family and friends and look out for final information coming soon.

We are planning a lucky dip bottle bag fundraiser and Niamh (with the help of Luna) has made a good start on the preparations.

Many thanks to all of you who have donated bottle bags and items to put in them. If anyone has any unwanted bottles of anything left over from Christmas, we’d be happy to take them off your hands!

If anyone has any other ideas for last minute fundraising, please get in touch with one of us.

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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

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