Another MS Warrior

93 This is what keeps me awake at night …

I have spoken before about the published criteria for being considered for HSCT in the UK on the NHS. They are as follows:

Diagnosis of MS made by a neurologist
Able to walk, needing at most bilateral assistance to walk 20m without resting
In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy
New MRI activity within last 12 months

Previously, I met all of these apart from number 3. More recently, they have relaxed that particular criterion in some cases and Professor Sharrack seemed to agree with my argument that as an older MSer, it would be counterproductive to use valuable time trying out various drug regimes. Some experts are also of the view that HSCT is more likely to be successful in patients who have not already had their immune systems compromised through the impact of the stronger MS drugs.

By the time of my meeting with Professor Sharrack in June of this year, criterion 3 was no longer being strictly applied, but as over 12 months had passed since my last MRI, I found that I no longer met criterion 4!

So, in May 2018, I met all the criteria except number 3.
And in June 2019, I met all the criteria except number 4.

This is what is keeping me awake at night! I have a nervous wait to see what the MRI shows. I have certainly had worsening of symptoms during this time, but this can be caused by new disease activity or by the body struggling to cope with previous damage to the brain and spinal cord (known as secondary progression).

It is Professor Sharrack’s view that HSCT is not effective for those with secondary progression, although international data suggests otherwise. I am a member of various HSCT support groups and have had conversations and read the blogs of numerous people with Secondary Progressive MS, who have had success in halting the disease using HSCT.

Another confusing factor is that it is just 2 years since my diagnosis and 7 years since my first symptoms and typical disease evolution is for Relapsing MS to become progressive after about 15 years. Clearly my understanding of MS is still at amateur level!

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There has been a bit of excitement in the world of HSCT during recent weeks as fellow MSer, Selma Blair appears to be having HSCT. Selma has been very open about her diagnosis, her struggles with the disease and her search for treatment and support. She is, quite understandably, being less open about her ongoing treatment but has mentioned she is being treated by Dr Burt (HSCT guru) in Chicago. I’m really hoping we see a happy ending to this story at some point in the future.

Back in April, I told you that Gogglebox star and fellow MSer, Scott McCormick was receiving HSCT at Hammersmith Hospital in London. Scott has been safely home with his family for a few weeks now, is doing well, sleeping lots and keeping us amused with his occasional MS:UK videos and twitter posts! As you can see, he has also had to embrace quite drastic change in his appearance!

Scott and his wife, Georgia are also very encouraging of other MSers considering HSCT, which is very much appreciated.

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…

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‘People like you …’

Today Matt bravely weathered freezing conditions to swim a mile of beautiful Lake Windermere.

I don’t know anything more about Matt’s experience, other than he is now recovering in a local pub! Matt has been gathering sponsorship from his family and friends and has raised over £400 …thank you so much Matt and hope you’ve managed to get warm again!

If anyone else would like to sponsor Matt, please click on the link below and mention him in your comment.

Getting around with my walking stick has mostly been a very positive experience so far. Generally people are kind and helpful, allowing me space and time to get where I need to go. I’ve had people help get my suitcase onto a plane, open doors for me, put my shopping in the car, help me off trains and offer help everywhere and my lovely friends and family are happy to let me link arms with them when I’m walking with them (I’m much quicker that way). Occasionally, I have encountered the odd person who is less than helpful, but on the whole, the great British public are good people.

A couple of weeks ago, I was returning to my car, which was parked at the side of the road. I waited for a gap in passing traffic before opening the car door and began the slightly complicated process of getting myself, my bags and my stick into the car, without poking my eye out or trapping something in the door! Suddenly a speeding car whizzed by, with a cross looking man at the wheel, beeping his horn at the dreadful inconvenience I was causing him!

Quick as a flash and without giving it a moment’s thought, I waved my stick in the air and shouted “f*ck off!!”. Even I was shocked!

So, i think I have found out that when I’m elderly, I’m not going to be a sweet old lady but one of those cantankerous old biddies who is always having a go at someone!

More recently, I was in a busy supermarket on a Saturday afternoon, something I generally avoid (busy shops have always been my idea of hell!). In one very busy aisle, a woman pushed past me, huffing and puffing and muttering to herself. When she noticed my stick, she turned and apologised to me (fair enough, perhaps she was just in a bad mood because she feels the same way about shopping as I do?). She went to walk away then turned back again and said “perhaps people like you should do your shopping on a week day, while the rest of us are at work!”.

I was gobsmacked! So much so, that I just stood there and said nothing (where was my stick waving, f off shouting attitude when I needed it?!). Before I had time to articulate a reply, she had rushed off again. Perhaps she had run out of coffee or wine (or hard liquor) at her house and was feeling stressed?!

What I wanted to say to her was …

People with disability also work …I work!
People with disability shouldn’t need to hide away in case they get in the way of those more fortunate.
People with disability don’t need advice from those more fortunate.
The whole world is set up for the benefit of those without disability, without people with disability also having to adapt to YOUR needs too.

I don’t know where to start on the phrase “people like you”!!

Those that know me, will know that I am a bit of a socialist and have always fought for women’s rights, LGBTQ rights, the rights of minority ethnic groups etc and challenged inequality in general. I realise now, how ignorant I was of the discrimination people with disability often face. It will definitely be remaining on my list of injustices to speak out about in future.

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World MS Day 2019

Today is World MS Day, so I thought I’d better take part by writing a blog post!

I don’t have an awful lot to update you with, as my time and energies have been taken up with non-MS matters lately. I have been off work this week (half term) and have spent the time catching up with jobs I can’t manage during a working week, as well as seeing friends, which has been great. I even managed an all day birthday celebration on Saturday, leaving the house at 10.30am and getting home after midnight! I really was proud of myself for lasting so long and it was a lovely fun day. I spent most of Sunday resting and recuperating but it was worth it!

I also want to tell you about a new MS charity which has a particular focus on supporting people living in the UK to access HSCT. The charity began about a year ago and is managed by volunteers, all of whom have either had HSCT themselves or have supported a partner having treatment.

AIMS Charity Facebook page

Their aim is to provide advice and guidance on HSCT treatment both in the UK and abroad (at the moment they are only recommending Russia and Mexico). They have also started raising funds and hope to be in a position to provide grants to people needing financial support to access treatment.

Here’s an amazing video showing how HSCT has changed the lives of many with MS.

Don’t forget, Matt’s Lake Windermere 1 mile swim is coming soon ….

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Just keep swimming …

This has been a tough week for me. I have been feeling physically and mentally low and seem to have forgotten how to sleep! I’m not sure what the root cause of all this is. Life just feels very unsettled at the moment.

Thankfully my lovely friend was there to catch me when I was at my lowest point (thank you Parveen ❤️), I had a better night’s sleep last night and have felt much more positive today. I hope to rest up over the weekend and be fighting fit for Monday! ??

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One of the fabulous Stephenson’s team, Matt Stevens has volunteered to take part in the Great North Swim to raise money for our funds. The event takes place at Lake Windermere over 3 days in June and Matt will be taking part in the 1 mile swim.

This is an amazing challenge and I am so thankful to Matt for taking part. If you would like to support Matt, please donate using the link below and mention him in your comment.

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I watched Eastenders this evening (sad, I know) and was sad to see the character, Dinah, apparently take her own life, feeling unable to cope with impact of her advanced Multiple Sclerosis. The character was brought in specifically to take her own life and create a story line for her daughter. We never got to know anything else about Dinah.

When MS is depicted on TV, they only seem to show extremes – those who are impacted very severely or those who bounce back after short illness, with their MS never mentioned again! In Coronation Street, Johnny had a brief period of illness, was diagnosed within a few weeks, recovered and carried on as if it had never happened!

I wish MS was depicted realistically on TV …it’s so hard to help people understand what it is like, without adding fiction to the mix!

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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 ??

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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?!

84 HSCT info

I came across a video of a lecture about HSCT for MS professionals, so thought I’d share it with you in case anyone is interested. It explains the process and discusses the development of treatment protocols over time. Although HSCT has been happening for several years, large scale studies and sharing of information has been slow to progress. Various protocols have been tried and compared and this has increased safety of the treatment.

The protocol used in Russia (and in the UK and Mexico) is the safest of the three referenced here.

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Gogglebox star and fellow MSer, Scott McCormick is currently receiving HSCT at Hammersmith hospital. He is sharing his progress via twitter (@ goggle_beard) and through a video diary he is making for the charity MS:UK (available on YouTube). Scott has had his stem cells harvested and is soon to begin the chemotherapy part of the treatment.

Like many MSers who have HSCT, Scott is keen to spread the word about the treatment. He recently dyed his trademark beard purple for MS:UK!

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Today was my first weigh in following a week on my new diet plan and I’m overjoyed to report I have lost 7 pounds! I am no longer obese …I’ve never been happier to be classified as overweight!

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