thank you – 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.

GoFundMe

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.

GoFundMe

PayPal pool

103 We have made a decision!

It has been a stressful and emotional few weeks for me, which have come to a head this week and led me to make a decision.

As you know, I have had the HSCT clinic in Russia on hold whilst pursuing the possibility of being treated in Sheffield, here in the UK. Today we made the decision to rebook Russia and start fundraising again. Lots of things have contributed to this decision…

On Thursday I had a meeting with a psychologist who works with my team. Amongst other things, she has occasional meetings with us to advise about difficult cases and talk about anything that’s bothering us. She is also a friend and knows about my health situation. I’ve been struggling the last few weeks, feeling very low, physically and mentally. Anyway, we spent most of our time talking about it all. It was so good to explain it all in words and acknowledge how difficult I have found this situation. She was so good at helping me to focus on what’s important and what I need to do. I think one of the reasons I have felt so down is that it feels everything is out of my control and all this waiting is really stressful … and I don’t even know what I’m waiting for!

That evening I fell at home and really hurt my foot/ankle. My leg gave way when I stood up and my foot kind of folded awkwardly under me. It’s the first time I’ve had a bad fall at home and it really scared me (and terrified the cat!)! It reinforced the realisation that I need to DO something now, before I get any worse. If I wait for the Sheffield option to run its course, another 6 … 12 months or more could go by and it could still be a NO.

On Friday I received a letter from Professor Sharrak’s registrar, regarding the outcome of my MRI scan, which took place back in June. It describes numerous lesions in various parts of my brain, but no active inflammation. I’m not sure if any of the lesions are new, as I don’t think they’ve been able to compare to my last scan (which was at a different hospital). Its worth mentioning that 4 years ago, I had no brain lesions, then some “tiny white spots” were found and these then increased in size and number between each scan. The letter is really unhelpful! And no change to my appointment (5th Feb).

I met with my lovely friend Anne on Friday afternoon and talked to her about everything – she told me how hard it is to see me gradually getting worse and how worried she is about me. She felt that no one one would criticise me for planning to go to Russia as soon as possible, having a definite date to work towards and doing all I can to give myself the best chance of getting better.

I spent much of Saturday with my children, Connor and Niamh. We went for a walk and then for lunch. They are both worried by waiting any longer and want me to be treated ASAP. Niamh has been terribly upset since hearing my appointment is in February and we all agreed we should focus on Russia and get me there as soon as possible.

So that’s where I’m up to!

I can’t tell you how much better I feel to have made this decision and to have the support of my family and friends. I am waiting for a response from the clinic with a date to work towards and will plan from there.

What do you all think?

We already have some fundraising plans brewing and some old ones to resurrect. We are open to ideas, offers of support or anything else that might help …please get in touch with one of us if you have any suggestions.

I want to say a special thank you to Sally, Anne, Connor and Niamh for helping me to get to this point this week and also to family, friends and colleagues for all your ongoing support ?

GoFundMe

91 Sheffield update

I want to begin this blog post with a big thank you to everyone who has been in touch, wished me luck, and offered supportive words and hugs this week. It means such a lot to me and I am very grateful for the wonderful friends and family I have in my life.

My visit to the HSCT Clinic in Sheffield was interesting, mostly positive and very exhausting! I had a full neurological examination (involving being prodded with pins, hit with hammers and having tuning forks held on my joints!), a long discussion with a neurology registrar, meetings with Professor Sharrack (Neurology) and Professor Snowden (Haematology), a discussion with two haematology nurses and had bloods taken.

I am now waiting for an MRI scan (mid July) and a further appointment with the professors (mid August) for a final decision. I have found myself in the rather peculiar situation of hoping that this MRI scan will reveal new disease activity – my last three have, but the most recent was 13 months ago and the Professor is interested in the last 12 months.

The haematology nurses provided me with a lot information about the treatment and how this is managed in Sheffield. They have treated 60 MS patients there over the last few years, with the number treated each year gradually increasing. I was very impressed with the level of care and excellent treatment planning I heard about.

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I have a couple of fundraising updates to tell you about …

My beautiful niece and her friends ran a stall at their school and raised a fantastic £25!! Thank you Anna and friends xxx

A while ago, I took a box of unwanted bits and pieces to Maxwell’s Auction Room, hoping to raise a couple of hundred pounds. Today I received a cheque for £450! Such a lovely surprise! There are a few items still to sell (in a “collectors auction” in July) so hopefully more to follow. If you have any old rubbish in your loft, I’d really recommend taking it to the auction room.

Maxwell’s Auction Room

Maxwell’s is used on TV in Dickinson’s Real Deal and Cash in the Attic

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Obviously, with the timescale of things in Sheffield, I’m going to have to revise my plans around treatment in Russia and continuing to raise funds. I hope to let you know about that very soon. I have been discussing all decisions with my family throughout this journey and they have been a huge help and a source of really useful ideas and advice.

Thank you again for your ongoing support ❤️

83 Weight gain

The time has come for me to do something drastic about my weight.

A combination of fatigue, decreased mobility, thyroid problems and a bit of comfort eating, have caused me to gain a lot of weight over recent months. I have always struggled with my weight and have yo-yo dieted for most of my adult life. In the past, I could cut out snacks and be a bit careful for a few weeks and usually get things back under control, but this doesn’t seem to work these days. So, from Tuesday I will be on a supported weight loss plan, with a hope of being slimmer and healthier in a few months time.

On Wednesday, I had my first meeting with my 1:1 diet consultant, which included the dreaded weigh in. I have some scales at home but have been avoiding them for a while now, but my clothes have been feeling tighter and I knew I was in for some bad news. I am now the heaviest I have ever been and with a BMI of 30.8, am now classified as obese. I’m feeling pretty upset about this, but am planning to use this feeling to motivate me to stick to my new diet plan.

As you know, my HSCT treatment has been delayed until August. I am planning to use the extra time to lose weight and increase my fitness. Hopefully I’ll be in better shape by August, than I am now, which in turn, should have a positive impact on my recovery.

Isn’t it wonderful to see the sun shining? I am beginning to think my spirit animal must be a bear or some other animal that hibernates! I really am a different person when Spring arrives! I feel so much better mentally and energy levels are up too. Hopefully, this will all help with my plan to improve my fitness.

A few months ago, my GP referred me to a supported scheme at my local gym, but unfortunately my fatigue and pain levels at the time meant I had to defer this. With the arrival of winter, swimming and aquafit became too challenging too. I am aiming to get all this back on track too.

I am back at work on Tuesday after the Easter holidays and am feeling positive and ready to take on the challenges of the new term (I am really lucky and work term time only). I think the warmer weather, lighter evenings and time spent with family and friends over the last couple of weeks have improved my mood and energy levels. I am really grateful to all the wonderful people in my life …thank you everyone ❤️

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.

Stephenson’s Catering Equipment, who have been supportive in so many ways, including providing supplies for the evening.

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

57 Ask me a question …some answers

When did you know you have MS?

I was diagnosed with MS in June 2017. My most recent MRI scan around that time showed no new lesions or inflammation so my MS was described as “benign”.

I had a further MRI in November 2017 and then in May 2018. These both showed current inflammation and “enhancing lesions”. I had also developed several new symptoms. My MS was then redefined as Active RRMS.

RRMS = Relapsing Remitting MS.

At my most recent neurology appointment, I asked the consultant if he thought my MS was becoming progressive. He replied “well, you’re certainly on the way ”. Somewhere between 50 and 90% of the those with RRMS will become SPMS (Secondary Progressive MS).

Prior to my diagnosis in June 2017, I had had concerning symptoms on and off for about 7 years. In 2014 I was diagnosed with Clinically Isolated Syndrome and Transverse Myelitis.

There are various episodes and symptoms I can recall in the past, that I now recognise may have been neurological symptoms. It is possible that I have had MS for many years.

Is HSCT safe?

No treatment is 100% safe. Having said that, the safety record for HSCT is excellent and improving all the time. Interestingly, the two main clinics used by UK patient (in Mexico and in Russia) both have a far better safety record than the UK. I guess this is due to their experience and careful selection and testing of patients before treatment.

The most risky phase of HSCT is the period of time during which the patient’s immune system is virtually wiped out and before the stem cells have had a chance to begin rebuilding it. This is known as neutropenia. During this stage (about 7-10 days) patients remain in isolation with very strict protocols linked to hygiene, food etc. Patients are continually monitored by medical staff so that action can be taken at an early stage if any concerning symptoms arise. At this stage, an infection that would usually be of no concern, or easily fought off by the body, can lead to sepsis. Thankfully, this is very rare.

Why isn’t it available in the UK?

HSCT is available in the UK and is used widely all over the country to treat patients with Leukaemia and other blood / bone marrow cancers. Two hospitals in London have been treating MS patients for the last few years but as this is a very limited resource, there are very strict criteria in place in order to select patients. A handful of MS patienst have also been treated in Liverpool and Manchester and possibly other hospitals too (this information is not reported anywhere). Some MS patients have received HSCT in Sheffield as part of the MIST trial.

At present I don’t meet the criteria for HSCT on the NHS as I haven’t tried several DMDs. I don’t want to do this as it would take several years, my MS could progress, the drugs have serious long term side effects and there is some evidence that HSCT may be more effective for those who haven’t had multiple previous treatments affecting the immune system.

HSCT is a available privately in the UK, but the costs are much greater than the private clinics abroad.

Why Russia?

I have done a lot of research into the clinics where HSCT is available to international patients. There are several where the costs are beyond my reach and a few who will only treat residents of that particular country. In the end, the choice came down to either Russia or Mexico. Both have treated hundreds of MS patients, including many from the UK, both have an excellent record in terms of outcomes and patient safety and both have an excellent reputation in terms of patient care. In the end, I chose Russia because it is slightly cheaper, it is much nearer and there are some additional costs involved in going to Mexico (patients must bring their own carer or pay extra for this care).

At first I felt a bit anxious about this. Who has ever heard of anyone going to Russia for medical treatment?! But I have been reading and researching, following the journeys of others and even communicating with others whilst they are at the clinic having treatment! I feel confident in the decision I have made.

Will you lose your hair if you have HSCT?

Yes! Well, most people lose their hair due to the chemotherapy phase of the treatment. Obviously that’s not something I’m looking forward to, but if it halts my MS then it’s worth it. Perhaps I’ll wear a wig or maybe a series of snazzy hats! I’m sure I’ll cope.

Actually, I’m more worried about having no eyebrows …I think I’ll research microblading before I go!

I’d like to help but I’m skint!

I totally get this. We are all experiencing hard times at the moment and I know that money is tight for a lot of people. I would never want anyone to feel pressurised to donate …please only give what you can afford. If you can’t afford to give anything, that’s fine too.

There are a couple of other ways you can help…

Share this blog and our fundraising page with all your friends and encourage them to do the same.

If you or anyone you know is in a position to donate items that can be raffled or auctioned, these would be very gratefully received …unwanted Christmas gifts, tickets for events, meals, massages, haircuts etc etc

Thank you all so much for your continued support and kind words. It really means a lot ?

53 Thank you ❤️

I just wanted to write a quick update to say thank you for all the supportive messages I’ve received over the last couple of days. I really do have some wonderful people in my life xx

I must admit, I really didn’t feel like going anywhere Friday night, but once I had got myself ready and out, I was so glad I did. I work with a lovely team of 13 who are kind and supportive colleagues, but also great friends. We are very busy at work and in and out of the office at different times, so it can sometimes feel a little chaotic. It really was lovely to be able to sit and chat and enjoy the start of the festivities together.

I have included this photo as I think it is the first I have taken with my clumpy boots and walking stick. I would have avoided taking this a few months ago, but writing this blog has helped to see that it is much better to be open about things, rather than hide away.

A highlight of Friday evening is that, after over 30 days as a tee-totaller, Julie got to have her first alcoholic drink! She also got to try a porn star martini for the first time …I think she rather enjoyed it!

Thank you for doing this for my funds Julie xx

After my stressful day and night out on Friday, I was totally out of spoons on Saturday. I spent the day on the sofa, resting and recovering and felt much better today.

I managed to get out of the house with Niamh, Sophie and assorted dogs this afternoon and to give my trecking poles another outing. A bit of fresh air and exercise was just what I needed …thanks girls xx

I have also managed to do some research on the neurologist that I am seeing on Wednesday. Although I have spoken to one person who had a bad experience, I also heard from others who spoke highly of him and his knowledge of HSCT. So maybe the situation isn’t as bad as I thought after all. I’ll write more about that next time.

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 ?

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