Fundraising – Page 2 – Another MS Warrior

100 Another whinging blog post …

If you’re someone who thinks this blog is nothing but self indulgent ramblings, you may want to skip this post!

I have no good news to tell you, as my pursuit of HSCT in the UK has hit a serious set back this week. I phoned the appointments team in Sheffield (yet again) and was told that I have finally been allocated an appointment … on 5th February!!

I mentioned that Professor Sharrack had wanted to see me before 20th September and he confirmed that was the case, but that 5th February is the next available appointment.

Having already waited so long, this was really tough news to take. I appreciate fully that our health services are under immense pressure and that demand for this treatment is increasing, as more and more people are hearing about it. The situation is nobody’s fault (well, apart from the politicians who have underfunded the health service for years), but it’s still very upsetting.

I have spent the last couple of days talking with family and friends, trying to work out how best to proceed. Every day I am getting a little bit worse …I can’t keep delaying and delaying.

I have emailed Professor Sharrack to raise my concern, explain how this is affecting me and to ask if he can do anything to help. I suspect he has little to do with appointment allocation, so probably doesn’t know what the situation is. So far he has not replied.

I have also initiated a GDPR request to obtain a copy of my July scan report.

From next week I will be phoning the appointments team on a regular basis to see if there have been any cancellations (I don’t hold out much hope for this …if you’ve fought like mad to get an appointment at the HSCT Clinic, you are unlikely to cancel it).

If we can’t get some clear answers in the next few weeks then I will be back in touch with the clinic in Moscow and relaunching my fundraising campaign. I must admit that at first I couldn’t really face doing this – it really is such hard work! But I have been reassured by family and friends that they will help as much as they can and some have come up with a few fabulous fundraising ideas already!

It has been a tough week for all of us but I’m feeling a little calmer now. The road to HSCT has been long and arduous, with many unexpected bumps along the way …but I WILL get there in the end.

Thank you to everyone who has supported me over the last few days …you really are amazing ?

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 ❤️

Moving forward

Thank you to all of you who got in touch with your thoughts and advice on my dilemma. I really do have the most amazing family and friends ❤️

So, I now plan to do what you have all advised and pursue both options – Moscow and Sheffield – at the same time. This means that we will soon be relaunching our fundraising campaign.

Here are some quick updates on where we are now …

Gung Ho – on 6th April Niamh, Becca, Tiah, Duane, Alex and Matt took part in the Manchester Gung-ho inflatable 5K and managed to raise £125. Thank you so much guys ??

As you know, Bobby completed a sponsored fun run a few weeks ago and has raised £250 …amazing! Well done Bobby ??‍♂️

Glenda has had a couple of very small wins on the lottery (building up to that big one! ??)and Kyra has been saving her ironing money for me …another €45 …thank you both ?

Jimmy and Gill collected £93 from visitors to their brewery tour and £152.50 from hosting a film show. Thanks for your generosity ?

I’ve also been trying to live as frugally as possible and managed to save £1000

Our total now stands at …

This is an amazing amount of money to have raised by a small group of people, with no experience of fundraising. If we can get to at least £25K, I think I could borrow the rest and continue fundraising once I’m well enough. I’m starting to feel this could be doable!

We are starting to bounce some new ideas around and to resurrect some old ones and hope to have some exciting news on future events very soon.

I will keep you updated on any news from Sheffield (the lead professor is at a neurology convention in America this week so nothing new to report).

Obviously, if the Sheffield option comes off, we will have some decisions to make on what to do with the money raised. We have decided that if this happens, we will contact individual donors and give them the following options…

Return the funds to them
Donate the money to help others seeking HSCT
Use the money to help support my recovery

I will keep you updated on this as things progress.

Thank you again for all the support, encouragement and kind words that have come my way since my last post …I already feel much more positive and hopeful ??

GoFundMe

69 Friends

I just wanted to send a message to friends everywhere, to apologise for being such a rubbish friend these days!

Although I am working slightly fewer hours these days, I still find that work takes up a lot of my time and energy (spoons!). Whatever I have left is spent stressing over fundraising! If the truth be known, I really don’t like the situation I find myself in and hate having to ask people for money. It’s all so time consuming, stressful and a little humiliating. I tend to be quite open with friends and family, but don’t share my whole life with everyone. Yet here I am sharing my thoughts and information on my life and my health with anyone who wants to read it!

With all my physical and emotional energy going in to fundraising, worrying about fundraising and trying to win the lottery, I know I am neglecting the people around me. I’m sorry for that.

If I owe you a text or phone call or an email, or a coffee or a night out, I hope you can bear with me while I’m so distracted with everything else. Please keep in touch xx

All of this has made me realise that life is going to be very different for me for the next 6 months or so. I’m planning to work hard at the fundraising until our evening do on 23rd February. At that point, I’ll try to borrow whatever is outstanding and get my treatment paid for. Then I’ll have 2 months to plan and prepare!

My trip to Russia will take a month and I’ll need to take things very slowly when I get back. I’m hoping normal service will resume by Autumn …that really does sound a long way away. I know I will have some wobbles on this journey and there’s a lot I can’t even think about yet, but at the moment, I’m feeling positive and determined, which will do for now!

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Event tickets £10 each

Saturday 23rd February … Bonis Hall, Prestbury

Raffle tickets 50p each

GoFundMe

58 Fundraising update

Well, today has been a wonderful day in terms of fundraising for my treatment.

Late last night, I spotted a post in one of the HSCT support groups from someone who had HSCT earlier this year, is making an excellent recovery, has some spare cash and wants to use it to help others. As you can imagine, he had many replies (there are literally hundreds of people from all over the world, trying to raise funds for HSCT). I added my fundraiser to the responses, thinking if I was lucky, I might receive a couple of quid from this unexpected source.

I was very pleasantly surprised this morning when I found that this kind person and his wife have donated $225 (£179) into my account. If he has paid this amount into the accounts of everyone who has responded, I reckon he will have paid out almost $10,000. What a heart warming and generous thing to do ❤️

I logged in to my fundraising page to thank the kind stranger for his donation and found I had received a message from someone I haven’t seen for many years – a school friend of my brother! He is running a half marathon in early January and is raising funds for my campaign! What an amazing thing to do! Thank you so much George.

Later at work I discovered that my manager, rather than buy all the team a small gift for Christmas, has made a donation instead. My lovely work team were in full agreement and I must admit, I had a tear in my eye when I found out ❤️

And to complete this amazing day, I came home to a letter from the tax man informing me that they are giving me a rebate of £63 …not a huge amount I know, but I usually only hear from them when the error is in the other direction!

I’ve been feeling a bit overwhelmed recently, at the enormity of the task ahead, but today has given me such a boost and I am feeling optimistic again!

GoFundMe

We have plenty of other fundraising events coming up …

Our evening event is almost confirmed …date to follow.
Cal’s head (and chin) shave will take place soon.
My mum’s coin and stamp collection is going to the sale room in January.
Niamh and Sophie are working on an open water swimming challenge for early Summer.
Discussions are ongoing for a sponsored tandem skydive.
Glenda is taking part in a sponsored Nordic Walk.
Fiona and Kyra are taking part in sponsored running events.
Anna and Zeb have a stall at their school Christmas fair.

54 Neurology appointment

I finally got to meet my new neurologist yesterday and to find out why I won’t be seeing the old one. It turns out that my previous neurologist has left the NHS, in fact, he has left the country and has returned to Malta! My political mind wonders if this was Brexit related …I guess we’ll never know.

So my new neurologist was doing an additional catch up clinic for those of us left without a neurologist. He was a nice man but the whole appointment felt a bit rushed and pointless. He wants me on another DMT, but didn’t ask how I felt about that and he wasn’t aware of my letter enquiring about HSCT.

I asked him about HSCT and he looked a little flustered then explained that he thought it was likely helpful for some patients, but that we need more large group, long term clinic trials to be clear on who it might help. He also said that there was a number of drugs left for me to try, before considering anything more drastic.

He briefly mentioned “people who fundraise or sell their homes” to pay for treatment abroad (not realising that I am on my way to being one of them) and made some strange claim about those patients claiming to have improvements or to have halted their MS, but him not being convinced it was true! He felt some improvements were psychological and linked to the fact that people have invested in the treatment and believed it would work.

I wasn’t quite sure what he meant by that (intensive chemo, followed by stem cell transplant, having a placebo effect??) but decided not to discuss it further or tell him I am planning to have HSCT myself.

I felt he was a nice man and clearly believes that current drugs are good for his patients. It wasn’t until I was on my way home that I realised he didn’t ask me how I am, about new symptoms, or, in fact, my views or experience of anything at all!

So, that’s it, my hopes of accessing HSCT in the UK are now over. I am now one of those MSers who is diagnosed, shoved on drugs and seen once a year for a review (during which no one will actually ask how I am!).

I felt quite down about this last night but am ready to fight on today. Being an advocate for your own health is something we should all do, whatever our ailment. Knowledge is power. Find out what you need, find out how to get it and don’t give up ??

I now need to get back to fundraising (and possibly borrowing) with a vengeance. I think I’ll buy a lottery ticket for this weekend’s draw! ??

On the plus side, the clinic in Moscow (as well as the one in Mexico) is infinitely more experienced in treating MS patients and has a much better safety record. I really will be in the hands of world experts and that feels good to me!

I also left the hospital armed with a bit of light reading!

GoFundMe

52 Hospital blues

Today I had an appointment with my neurologist at Salford Royal Hospital. All my previous appointments have been at Stepping Hill, but last time I saw him, he suggested I see him at SRH, where he and his team are based.

So, last night I spent quite a bit of time preparing by making notes and gathering documents together, set my alarm for 6.30am and following a sleepless night, got up and ready and set off for the hospital.

I was a little early so had time to grab a coffee and admire the hospital building, before checking in for my appointment.

It was at this point that I was informed that there was no appointment and my neurologist is on holiday! I was told that I should have received a letter about this and it wasn’t possible to check if an alternative appointment has been allocated because her system couldn’t communicate with the neurology system!

I was upset/angry/disappointed by this, perhaps more so than I should have been and basically sat in the waiting room for quite a while, feeling helpless!

As mentioned before, Salford Royal is quite an impressive hospital, with a cafe and shops, so I indulge in a little retail therapy and another coffee, then set off for home.

I used to work in Salford and know of a sneaky back way on to the M60, missing out the M602 …what I didn’t know is that there are roadworks on my sneaky route, meaning my journey home took almost 2 hours! I think the radio station I was listening to must have known …

I was relieved to get home, then flabbergasted to find this on my doormat …

No mention of my appointment being cancelled, but notification of another appointment (with a different neurologist) next Wednesday!

I don’t know what to make of this?! The new neurologist is one I’ve never met, but know from others that he is not pro HSCT. I would really prefer not to see him. I have put in calls to my neurologist’s secretary and my MS Nurse and am waiting to hear back from them.

Why does all this matter? …Well, as you know, I am worried about the progression of my Multiple Sclerosis and would like to have HSCT as soon as possible to try and halt the disease and prevent further damage to my brain and spinal cord. I have been in touch with a clinic in Russia and am frantically trying to raise the funds to pay for treatment.

Fundraising is stressful and exhausting, at a time when my mental and emotional reserves are low and I also don’t relish the prospect of travelling for treatment, or more precisely, the journey home following such a gruelling procedure. If I could have HSCT in the UK on the NHS, much of my stress would be removed and I could focus my energies on staying well and taking care of myself. I’m find it really hard to keep going with all of this.

I know the chances of me getting treatment in this country are slim, but I wanted the chance to talk to my neurologist about it to see if he would consider referring me. I also hoped that, even if he felt unable to support my treatment in the UK, he might at least give me his blessing and be willing to monitor me when I get back from Russia. Now, I don’t seem to even have the chance to speak to him!

Anyway, I’m off out for my work Christmas do this evening, so will hopefully pull myself together, put my happy face on and have a good evening. I consider myself very lucky to have fabulous workmates, so hope to be feeling a bit brighter by the end of the night ?

45 Ask me a question …

I am aware that I’ve just been talking at you for weeks about my MS, my pursuit of HSCT and our fundraising efforts. Whenever I talk to friends and family, they always have lots of questions, so I thought I’d throw this open to everyone!

So, if there’s anything you’d like to know, you can submit a question in the comment box below or through any of the following:

Instagram @anothermswarrior

Twitter @anothermswarrio

Facebook Another MS Warrior

Or, if you know me you could WhatsApp, text, email or ask me in person!

I’ll pull any questions together and try to answer in future blog posts.

goFundMe

35 Fundraising news

Well, a couple of days ago, this happened …

100 donations in one month!! Thank you so much each and every one of you xxx

The sponsorship money from the Manchester Half Marathon is still coming in so I don’t have a total for that just yet.

Connor, Alex and Gleaves have been out training on their mountain bikes today.

Having said that she’d never run again, Niamh, along with Callum, Jess and Jake, has signed up for the Wilmslow Festive 10K run on 25th November. She is still resting up to allow her hip injury to heal, then all 4 will be training in earnest!

We also have some other fundraisers coming together …

My Prosecco loving friend, Julie, is giving up booze for a whole month!

My niece Fiona has signed up for a 10K and my sister Glenda, for a sponsored Nordic walk event.

My sister in law, Gill is hosting a coffee morning next weekend, including yummy cakes (she is an excellent baker) and a raffle.

I’d like to hold some sort of cake related event too …I seem to have so many cake making friends! Maybe some sort of Bake Off or something along those lines? Or a good old fashioned cake sale? Or something Christmas related? If anyone has any ideas, please give me a shout.

We are still working on a possible sky dive and a long haired person is considering a drastic hair cut, in exchange for donations …watch this space for more information on that soon!

We are planning an evening event to take place in January. We have a fabulous venue and plans coming together for music, food, drink, a raffle and a silent auction.

So, this is my next request for help …

Do you have anything you could donate as a raffle prize or silent auction item?
Do you own a business and would be able to donate services, a beauty treatment, a meal or anything else we could raffle or auction?
Do you have any contacts at venues who could donate event tickets?
Do you have a connection to anyone famous who could donate items?
Do you have connections with anyone who could help with any of the above?

If you can help with any of the above, or you have any other ideas for fundraising, please give one of us a shout.

23 Fundraising update

Two weeks ago, we launched our fund raising page with the aim of raising £40,000 to fund HSCT treatment abroad.

www.gofundme.com/another-ms-warrior

Please could I ask you to think about whether you might know anyone who might be willing to help? Please share our fundraising page far and wide. I know of someone in my position who had their treatment paid for in full by a wealthy friend of a friend of a friend who saw the link on social media!

I am finding fundraising hard going – it really isn’t easy to ask people for money and at times, I have wanted to scrap the idea all together. I feel incredibly vulnerable and exposed having to be so public about my life. My children, close family and friends are being wonderfully supportive and are encouraging me to keep going. To put it bluntly, my only other option is to keep quiet and slowly decline into disability.

To boost our fundraising efforts, we have a number of events coming up:

1. Manchester Half Marathon, Sunday 14th October 2018

Connor, Niamh, Gleaves, Nick and Heather are training hard for this event and the blisters on Niamh’s feet are almost healed!

2. 58 Mile Peak District Mountain Bike Challenge, Saturday 27th October 2018

Alex, Connor and Gleaves are taking on this gruelling challenge

3. Tandem Sky Dive, date to follow

Callum is organising the opportunity for volunteers to take part in a tandem sky dive and hopefully raise some sponsorship money. We have a growing list of people

Who would like to do this (possibly including me!) …if you would like to be added to the list, please let me know. Cost will be around £200.

4. Evening Event, January 2019

This will be an evening of music food, games, raffle, auction and anything else we can think of! We have a fantastic venue in Prestbury and some great entertainment lined up, including The Red Shells and Beth and the Beats.

If you have anything that you could donate as a raffle prize or auction item, we would be very grateful.

There are further events and sponsored challenges in the pipeline, so watch out for those. We are also open to further ideas and suggestions.

If you’d like to sponsor any of the participants taking part in sponsored events, please donate to our GoFundMe page and mention them in your comment. You can also sponsor individuals by contacting them in person.

If you know of any businesses that may be willing to offer items or services as raffle prizes or auction items, please get in touch with one of us.

Thank you for all the amazing support …I really do appreciate it xx