Sheffield – Page 2 – Another MS Warrior

95 HSCT in the news

I am a teacher and finally finished work on Friday for the five week Summer holiday. Some of my colleagues have plans for travel to exciting places, but I’m mostly staying home and trying to save money. The weather isn’t exactly conducive to having fun, also, I can’t walk with an umbrella and my raincoat has a broken zip, but I’ll try my best!

I should have an appointment with the team in Sheffield in a couple of weeks and will find out if there is any chance of them treating me here. If that leads to nothing, I want to get myself to the clinic in Russia as soon as I can. This uncertainty makes life feel a bit in limbo and it’s difficult to make plans. Over the last few weeks I have wondered about trying to book a cheap last minute holiday while I’m off work, but it feels wrong to be spending money on such things until I know which direction I’m going. Not that I have much spare money – reducing my working hours by a fifth has obviously reduced my income by a fifth, so whilst that’s better for my health, it’s a lot worse for my bank balance! There is no system to support those with a disability or health problems who can still work, but can’t manage full time hours, although I have just found that I may be eligible for PIP (Personal Independence Payment) so will start the gruelling assessment process while I’m off work.

So, to HSCT in the news …

The profile of HSCT is rising all the time and it will soon be very difficult for neurologists to dismiss it, as some do now. I was delighted to hear this bit of news recently – the team in Sheffield have recently won the NHS Futures Parliamentary Award for their pioneering work on stem cells transplant (HSCT) to treat Multiple Sclerosis. Click here for a full report …

Pioneering Multiple Sclerosis Stem Cell team win national NHS future Parliamentary Award

Congratulations Professor Sharrack, Professor Snowden and the rest of the Transplant team ???

I have written before, about the Hollywood actress, Selma Blair, who was diagnosed with MS a couple of years ago and has spoken openly in the media and via her Instagram account about her struggles with the disease, coming to terms with the diagnosis, the impact on her life and her search for the best treatment. For the last few weeks, the content of Selma’s online activity has led many of us to believe that she was undergoing HSCT with Dr Burt in Chicago, and it turns out we were right!

Selma is in the early stages of recovery at the moment and I wish her well. Once she’s strong enough, I’m sure she will become a truly fabulous HSCT advocate ??

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As you know, we have paused our fundraising efforts for the time being, until we know whether further funds are needed, however, there is still some activity in the back ground and I was delighted to receive a surprise donation of £75 this week. The money came from a collection box in the Cash and Carry at Stephensons, so I’d like to say a big thank you to all their customers and staff.

The Cash and Carry is well worth a visit, even for those of us not in the catering industry …many kitchen related bargains to be had! Find out more here …

Stephensons

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In my last blog post, I listed 9 MRI scan tips and was struggling to come up with another to round it up to a perfect 10. Over a week later and I’ve thought of one!

10. DON’T start to cry when you are in the machine! You can’t move your head or raise your hand to your face, so the tears form two perfect puddles over your eyes …not comfortable at all and plays havoc with your mascara.

94 The big loud tunnel monster

This week I had an unexpected meeting with an MRI machine, or “the big loud tunnel monster”, as one of my fellow MSers likes to call it! My appointment was originally on 25th July, but on Friday, I received a call from the hospital asking me to come in the following Tuesday. The timing couldn’t have been better …I had a weekend with family planned (my sister in law’s 50th), which would keep me occupied, with little time for anxiety to build.

I had a lovely weekend with my family – kotlich, a Blue Grass live band, Swan Brewery beer and some metal detecting thrown in!

My scan appointment was in the afternoon so easy train travel (using my new Disabled Person’s Railcard) was possible. I had a couple of hours at work in the morning and by chance spent some of it with a psychologist who works with my team. I work with children who are in care, many of whom have experienced trauma, loss or abuse, so Sally’s input is invaluable to our work. I mentioned to Sally that I was having an MRI scan that afternoon and my slight claustrophobia was concerning me – she gave me some advice about deep breathing, meditating and focussing my attention on my bottom, legs and feet.

I arrived at the hospital in plenty of time to confirm I don’t have a pacemaker or metal fragments in my eyes (for the umpteenth time) and was soon being inserted into the machine.

I must say that this was my best scan yet, in terms of managing my claustrophobia. The staff were kind and helpful and the whole set up helped to keep me calm. When having a brain scan, there is a plastic head frame used to ensure you keep totally still. This one had a mirror system, a little like a periscope, so that I could see my feet and the window to the control room, where I could see the radiologist monitoring a computer screen. This really helped me to stay in touch with the world outside the machine and reduced my claustrophobia.

I was in there for just over an hour (being tall, I have a “long spine”) and managed to follow Sally’s advice to focus on my lower body. This was really helpful – so much so, that I later told the radiologist and she said she would be giving this advice to others in future.

Once recovered, I enjoyed half an hour in the sunshine outside Sheffield Train Station, before catching the train home.

The next day I phoned the transplant team as requested and informed them my scan had taken place. Apparently Professor Sharrack can now look at the images through their computer system straight away, although the radiologists report will take another 4 weeks. I really am impressed with the system in Sheffield as here, there is a 2-3 month wait for scan results and the neurologist never actually gets to view the images.

So now I wait for a further appointment sometime mid August for further discussion. Keep your fingers crossed that something shows up on that scan that convinces Professor Sharrack I am suitable for HSCT.

Here are my MRI scan top tips …

Arrive in plenty of time to have a chat with the radiologist, answer the metal-in-your-body questions, remove any piercings (ladies, you will have to remove your bra) and generally get yourself ready.
Tell the radiologist if you are claustrophobic (I have found sometimes they hardly respond and other times they do what they can to reassure you before and during the scan).
If you are to have a contrast agent injected and you are anxious about needles, it might be helpful to tell someone when you arrive. I once had them pull me half out of the machine to inject me, which I found stressful, despite being fine with needles. On this occasion, they put a cannula in my arm before I went in, so it was easy for them to administer the contrast agent without further needles.
Wear clothing that has no metal fastenings or zips. They will provide a hospital gown if you are wearing unsuitable clothes, but it is fairly cold in the machine and gowns don’t cover much! You can always ask for a blanket if you are cold.
You will have to take your shoes off (most have metal in the fastenings) -bring a pair of socks rather than having bare feet, so that your feet are warm and comfortable.
Make sure they put a pillow or support under your knees as this takes the strain off your lower back and hips (you are going to be lying still for a long time).
Don’t be alarmed by the sound of the machine! Despite having ear plugs in and headphones on, it is very LOUD! There is no regular pattern to the sound – banging, whiring, grinding, clanking, low and high pitched metalic sounds.
It’s hard to block out the sounds and truly relax, but deep breathing and meditating can help and definitely focus on your legs and feet (so glad I learnt this …thank you Sally).
Take your time afterwards. I often feel dizzy after a scan – probably due to anxiety, relief and the effect of lying still for a long time.

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The big loud tunnel monster was named by @MSWarriorPrinc1 on twitter.

More information on Swan Brewery can be found here …Swan Brewery

Thank you to friends and family for all your ongoing support on this weird and whacky journey xx

92 MRI Scan

My MRI scan in Sheffield is booked in for 25th July, so thankfully not too long to wait. I am relieved that it’s a full head and spine scan, with contrast, so Professor Sharrack will have a thorough picture of what is happening. The contrast agent allows current inflammation to be differentiated from previous areas of damage. The only down side is that the appointment is at 7.20 in the morning and I live over an hour away from the hospital!

I’m quite impressed by the system in Sheffield – there are 5 hospitals all under the umbrella of Sheffield Teaching Hospital NHS Trust and all services are provided by the NHS. In Stockport, MRI scans are provided by a private company based in premises within the hospital grounds. There is a distinct lack of communication between the consultants and the team responsible for the scans, in fact I recently discovered that my neurologist has never viewed my scans himself and has made decisions based solely on the radiologist’s reports. Thankfully Professor Sharrack has already informed me that he will be looking at the scans, as well as the reports and is also planning to review all my previous scans (once the private company involved lets him have copies!).

I’m slightly anxious about MRI scan as I can sometimes feel quite claustrophobic. I have learnt to keep my eyes firmly shut during the whole process and to do breathing exercises in order to keep calm. The newest machines have internal lighting and a gentle flow of cool air, which I find very helpful. On a couple of occasions I have been asked to “keep still” whilst in the machine, when my only movements have been me shaking with fear! Having said all that, I have become braver at each scan and can now manage these appointments without someone with me. This scan will take over an hour, with two needles in my arm to deliver the contrast agent …I may need more than deep breathing to get me through!

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So, the next few months are looking a bit like this …

25th July – MRI scan

End of August/ beginning of September – Appointment with Prof Sharrack and Prof Snowden – the outcome of this appointment will decide whether I can have HSCT in the UK.

I have already decided that if the answer is no, I am going to get to Russia for treatment as soon as I can after that (November / December?). This will mean borrowing to add to the funds raised and continuing to fundraise next year. I’ll tell you more about that if we have to go down that Road.

Keep your fingers crossed for me!

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 ❤️

Sheffield here I come!

Last weekend, Matt Stevens took on the challenge of swimming a mile of Lake Windermere. Matt is a keen swimmer and a member of Droylesdon Sub Aqua Club.

Here is Matt’s account of his day …

“As you’re all aware, I was swimming the Great North Swim this year for a very very worthy cause … I was helping raise funds for Vicky Swan (Niamh and Connor’s mum) for her MS treatments.

We arrived at Windermere on Friday night, in the pouring rain. The wind was howling and quite honestly I didn’t want to do the swim, the organisers had talked about cancelling the event on Saturday due to the weather, so we all had a few drinks for a little courage.

On the Saturday morning we got to the swim site and were met with horrible weather. Cold water, strong winds and driving rain made the organisers cut the swim short this year … down from a mile to about a kilometre.

The below picture does not do the waves, caused by the wind, justice …

For the first half of the race, we were swimming directly into the wind and waves. I tried to swim crawl but ended up swallowing too much water (I thought that the ferries would be beached If I continued) so I was forced to swim breaststroke for the first half. Ducking through waves as they came at me. When we turned the corner after the second buoy the wind started assist, so I switched back to crawl … a bit easier and a bit less water was swallowed. I was able to make a bit of time.

I made it back!!!

I’d like to thank all of my sponsors, without you very kind and generous people, I probably would have bottled out this time. Talking of sponsors, I am now collecting money. So if you were kind enough to sponsor me for this … I’m coming to get ya J LOL

See you soon and thanks again xxxx”

Well done Matt! Fantastic achievement and you have inspired Sophie and Niamh to think about doing it next year!

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A few weeks ago, I mentioned in a blog post that I was planning to make a determined plan to lose some weight. There are lots of reasons for this – I want to be healthier and fitter and I want to look better and feel more comfortable in my clothes. Perhaps the most important reason of all , is that when I receive the chemotherapy element of my HSCT treatment, the dosage will be calculated on body weight. Chemotherapy can be very challenging on the body, particularly on the liver and kidneys, so getting the dose to as low as it can be, is definitely a good idea.

Anyway, I am pleased to report that in 6 weeks I have lost 21lbs and 5 inches from my waist!

The internet is full of useless information!

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I also have another exciting piece of news to share with you …

A while ago, I mentioned that I had discovered that there is soon to be a UK trial, comparing HSCT and Lemtrada (a high efficacy DMT). See blog post “Decisions, decisions” dated 4th May, for more.

To cut a long story short, I have an appointment this week with Professor Sharrack (Neurologist) and Professor Snowden (Haematologist) at the Sheffield Hallamshire Hospital. Most exciting of all, the appointment letter says this is an “HSCT Clinic”!

I have known about this for a few weeks now and although it’s a huge step towards accessing treatment here in the UK, I am trying very hard not to get too carried away just yet. Hopefully there will be more to report soon.

In the meantime, I have been busy gathering all my medical letters, obtaining scan reports and producing a timeline of my disease history so I can arrive looking as if I know what I’m talking about!

So, please cross your fingers and toes and wish me luck. If you’re the praying kind, please do that too. I don’t think I’ve ever been so anxious for a medical appointment as I am for this one.

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You can find out more about Droylesdon Sub Aqua Club by visiting their website here

If you would like to sponsor Matt, please click on the link below and mention him in your comment…

GoFundMe

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

85 Decisions, decisions

Dear Friends and Family

I’m having a bit of a dilemma, so thought I’d ask your opinion…

As you know, I was initially booked to go to Russia for HSCT on 23rd April and began fundraising 6 months earlier in order to raise the £40K needed to cover treatment costs and flights. Despite our best efforts, we were still over £20K short by the time payment was due. It may have been possible to borrow and continue fundraising afterwards, but I’m a bit worried about doing that. I have recently had to reduce my working hours and am therefore earning less, so I’m anxious about having a large debt.

At the beginning of April, we made the decision to delay my trip to Russia in order to give us more time to raise the funds. We then decided to have a complete break from fundraising for a few weeks. It really is so mentally and physically draining to be arranging events and asking people for money all the time!

In the midst of all this, I unexpectedly heard about a new UK trial comparing HSCT to Lemtrada (a high efficacy MS drug) the STAR-MS trial. There has been talk about this trial for a while now but it always seemed to be planned for sometime way in the future. I also assumed it would be small scale and would be led by medical teams in London.

Autologous Haematopoietic Stem Cell Transplantation in Multiple Sclerosis: a Review of Current Literature and Future Directions for Transplant Haematologists and Oncologists

The trial is to take place at 19 centres across the UK and will be led by the neurology/haematology team at Sheffield Teaching Hospital, with first patients to start treatment in the Autumn of this year. This team is already experienced in providing HSCT to treat MS, as they were involved in the international MIST trial, which produced impressive results for HSCT earlier this year …

Effect of Nonmyeloablative Hematapoietic Stem Cell Transplantation vs Continued Disease Modifying Therapy on Disease Progression in Patients With Relapsing Remitting Multiple Sclerosis: A Randomised Clinical Trial

I was totally thrown by this news – I’d given up on the possibility of having treatment in the UK and had assumed this new trial was a long way off, would be small scale and would have very restrictive eligibility criteria.

It was a Sunday afternoon when I found out about this and I decided to go straight to the top for some answers … I emailed the lead haematologist involved, expecting to possibly get a vague reply from his secretary a few days later. To my surprise, he replied within the hour, suggesting I ask my GP to refer me to the lead neurologist, who he also copied in to his reply.

There are already some patients who have received HSCT in the UK, mostly through two hospitals in London and I am aware that they use very specific selection criteria, which I don’t currently meet. The criteria are as follows:

I. Diagnosis of MS made by a neurologist

II. Able to walk, needing at most bilateral assistance to walk 20m without resting

III. In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy

IV. New MRI activity within last 12 months

I believe I meet all of these, apart from number III. Basically to be eligible for HSCT in the UK, you are required to have tried and failed a succession of other MS drugs, including the most effective and risky ones (please see my earlier post “Escalation vs de escalation” for more on this). This doesn’t make sense to many of us with MS (and to some professionals) as each drug failure means the patient has experienced disease activity and therefore further damage to their brain and/or spinal cord. Furthermore, it can take several years to go through a trial of each drug.

I don’t feel I have this time. I don’t want to risk more disease activity and further damage and being in the older age bracket (for a recently diagnosed MS patient) means I literally don’t have time … I need to take the strongest possible step to halt my MS NOW!!

I emailed the lead neurologist with a bit of information about myself, my MS history and put forward my argument on why I don’t have time to go through the steps to meet criteria III. He replied to say he would be happy to see me and discuss this further.

This has given me a little bit of hope that I could be considered for the trial.

It is now 5 weeks on and despite numerous phone calls and emails, I still haven’t heard back from the team in Sheffield, other than to receive confirmation that have received my referral. I am struggling with this waiting!

If I can have HSCT in the UK before the end of this year, then I’m happy to wait. But waiting to find out whether they will consider me is getting me down.

I am rebooked for treatment in Russia on 26th August and if I’m not able to get treatment here, I don’t want to delay the Russian option any further. And if I AM going to Russia in August, I need to get back to fundraising NOW!

This is where I’m stuck! Should I put Russia on indefinite hold until I have exhausted options in Sheffield. I could start fundraising again and have treatment once we reach our target? But this could possibly mean waiting until next year to be treated. Or should I focus on Russia, start fundraising again and follow the Sheffield option in the back ground, just in case they’ll have me?! Would it be right to be fundraising, whilst also following another option?

This is the loop that’s going round and round in my head (often in the middle of the night!). I’ve been so focussed for months now, on pursuing treatment in Russia and knowing what I’m aiming for; now I feel as if I’m drifting, with no real focus. I need to decide on a definite plan!

So, I’d love hear your opinions on this. What would you do on my position? Is there another way of looking at it that I haven’t thought of? How can I get my focus back?!

Or, maybe I’m just over thinking the whole thing?!