Russia – Another MS Warrior

140 Big Decision – HSCT is no longer for me

On 16th March 2020, I should have been flying to Moscow for a month long hospital stay to receive HSCT, in the hope that this would halt the progression of my multiple sclerosis. During March 2020, the whole world gradually went into lockdown due to COVID 19 and on the Thursday before I was due to depart, my flights and treatment were cancelled.

Before this, I’d spent the previous two years preparing for my trip … fundraising, making arrangements for post HSCT care, arranging time off work, preparing to make my home as germ free as possible, losing weight, eating well and mentally preparing for my treatment and recovery. I felt positive, determined, relatively healthy and as ready as I could be. HSCT was the main focus of my life.

It was devastating for everything to be cancelled at the last minute and I must admit, the weeks and months after that were a struggle. At the time, like everyone, I believed the new situation would last for just a few weeks or months, at the most, and I was determined to get my treatment plan back on track as soon as possible.

As time went on, I began to realise that this new situation was going to last much longer than we all expected. I also began to worry about having a treatment that virtually eliminates the immune system, during a worldwide viral pandemic. Once travel became possible again, the clinic in Russia reopened and was soon treating patients from all over the world as before.

On 24th February 2022, Russian forces invaded neighbouring Ukraine and there has been ongoing military action there since, with many of Ukrainian people brutally killed and many thousands more displaced, losing their homes and the lives they once knew. The rest of the world initiated sanctions on Russia (and Belarus), including restricting financial transactions and travel. The clinic in Russia has continued to treat patients, with most travelling via Turkey and paying by use of complex international banking arrangements. I have no reason to distrust anyone working at the hospital, but would not feel it ethically acceptable for me to pay money into the Russian economy, or to travel there at the moment. By this I mean, I don’t have any criticism of those who are still seeking treatment in Russia, but I don’t believe it would be right for me.

There are two hospitals in Mexico, with an excellent reputation for providing HSCT for international patients and these would certainly be an option for me if I wanted to proceed; the biggest draw backs being higher cost and further distance to travel.

There is much discussion in the world of HSCT about which patients are the best candidates for successful outcomes. It seems that some of the key factors are age; time since disease onset; disease type; presence/absence of current inflammation in the brain and/or spinal cord and EDSS (this is not an exhaustive list). Some of those for whom treatment isn’t successful, actually become more unwell following HSCT and there is a connection between these risk factors and mortality rates too.

From 7 things you need to know about HSCT | Multiple Sclerosis Society UK

Age … HSCT seems to be most effective in people who are treated when younger. There are people who have received HSCT well into their 60s or 70s, but evidence seems to show that those in their 20s, 30s and 40s people are more likely to have successful outcomes. The upper age limit for the STAR-MS trial ongoing in the UK is 55. my current age is 57.

Time Since Disease Onset … Evidence shows that HSCT is most effective for those in the early stages of the disease, with 10 years often quoted as the upper limit. Calculating the length of time since disease onset is much more difficult than it would appear. I was diagnosed in 2017, but my first known symptoms were in 2011. I had various health problems and unusual symptoms for a number of years before this and it’s possible that multiple sclerosis was the culprit.

Disease Type … I was initially diagnosed with RRMS (Relapsing Remitting Multiple Sclerosis) and this is known to be the “type” of MS that is most likely to respond well to HSCT. This presents as periods of disease activity with periods of remission, during which symptoms may subside or even disappear. Over time, many of those with RRMS transition to SPMS (Secondary Progressive Multiple Sclerosis) where there is a slow general increase in symptoms with no periods of remission and no recovery from symptoms. It is difficult to pinpoint the time of transition from RRMS to SPMS and the diagnosis is usually made retrospectively. My neurologist believes I am now secondary progressive with superimposed relapses, although these are becoming less frequent. I take this to mean that I am transitioning to SPMS.

Presence/Absence of Inflammation in the Brain and/or Spinal Cord … HSCT is thought to work by reducing inflammation in the central nervous system and acting on the process that would cause future inflammation. In SPMS, it is less likely for there to be ongoing inflammation, with symptoms caused by previously incurred damage to the brain and spinal cord and the body’s reduced ability to compensate for this as we get older. My last MRI (July 2021) showed no ongoing inflammation and no new lesions.

EDSS … Disability in MS is measured using the EDSS (Expanded Disability Status Scale) and although there is much criticism and discussion about the appropriateness of this system, it is still used by hospitals providing HSCT. For the clinic in Russia, the upper EDSS limit is 6, although the hospital in Mexico will consider those with a higher EDSS. Two years ago, my EDSS was 6, however, I think there is a possibility that it is now 6.5. Those with a lower EDSS are more mobile, are likely to be more active and generally in better health, making treatment and recovery a little easier.

I’ve been thinking about all of the above over the last months, had discussions with various friends and family members and have reached the difficult conclusion that HSCT is no longer for me. It has been a tough decision to make and I wanted to give myself time and to feel sure that it is the right one for me. I still believe that HSCT is an amazing, life changing, treatment for many and there is much hope for MS patients in the future. Basically, I feel timing is all wrong for me and I no longer feel it is my best option.

This decision leads me to thinking about how to manage the funds that were raised and that so many friends, family and strangers contributed to. The source of these funds falls into 4 main categories and I am proposing dealing with them as follows:

Donations from individuals … give donors the choice of where this money goes (return, AIMS or other medical expenses).
Money raised via events and sponsored activities … use for other medical expenses.
Money raised selling jewellery and other items previously owned by my mum … use to fund a family get together (this is what we originally planned for this money but my family kindly donated it to my fund).
My own savings … return to my own bank account.

If you have contributed in any way to these funds, please do let me know if you have a view on this. Thank you to the various friends and family who have already given me a chance to talk this through with them. Whatever is decided, full details will be published here and on the GoFundMe page.

I have mentioned other medical expenses above and I thought I’d explain a little about what I mean by that.

At the moment, I pay for CBD and for one of my thyroid medications that is not available on the NHS. I hope to try LDN and Ampyra in the future; both are only available by private prescription in England. Being chronically ill is very expensive!

In November, I purchased my rollator (henceforth known as my “chariot”) as such equipment is not provided by the NHS. I bought a relatively cheap one, as I was unsure of how useful it would be to me. In fact, it has proved to be very useful and has kept me walking at times that would have been beyond me with just a walking stick or trecking poles. Now that I’ve had some experience, I realise that the specifications of my chariot are not ideal for me and I will need to buy a more suitable one in the future.

I am also now thinking about a mobility scooter and these are very expensive. I realise that it is really important to me to retain as much independence as possible and to be able to go out and about and do as I please. A mobility scooter may help provide this.

In addition I find myself considering private neurology, physio therapy and orthotics assessments in order to get the best possible advice on how to manage my MS and symptoms. Currently I have a 10 minute appointment with my neurologist once a year and I have been on waiting lists for physiotherapy and orthotics since April 2020. My MS Nurse has retired and despite making numerous phone calls, I am still awaiting an appointment with her replacement. My mobility has deteriorated markedly since 2020 and I’m becoming worried that I will soon be beyond any activity or devices that could help me to make the most of life.

In redistributing the funds we have raised, I want to ensure I am completely open and transparent about where the money goes and what it is used for. I’d like to help others who may benefit from HSCT and I’d like to try all I can to stay as well as possible for as long as I can, even if HSCT is no longer the route towards that for me.

I want to make it clear that I have made this decision for me (with help from family and friends) and I know it is the right decision. I am not a neurologist or expert in MS, just a person doing their best to manage their disease. If you have MS, I don’t want my decision to influence any decision you make for yourself. I also point out that the points listed above, that influenced my decision, are just my interpretation of my situation, following much reading and research over the last few years. I know the situation is not simple and that I will have got things wrong. Please do your own reading and research before making a decision for yourself. I have added some useful links below, as a starting point.

I hope no one is disappointed that I have made this decision, particularly those who have supported me and given your time and money towards helping me. I will be forever grateful for all the love and support I have received since I began considering HSCT.

You are all amazing 💙💚

If you have made it to the end of this post, thank you and well done! (I know its rather long and not that interesting!).

Links

AIMS https://www.aimscharity.org/

UK HSCT Facebook page https://www.facebook.com/groups/ukhsct/?ref=sharehttps://www.facebook.com/groups/ukhsct/?ref=share&exp=7ffb

HSCT in Russia https://hsct-russia.com/

HSCT Mexico http://hsctmexico.com/ms_landing.php?gclid=CjwKCAjwzeqVBhAoEiwAOrEmzX2kJsjxXJBz_WCaB7XlZvP_jTFRg2cR3ckB9b1LS5viDFw47V8ZtBoCXMQQAvD_BwE

EDSS https://mstrust.org.uk/a-z/expanded-disability-status-scale-edss

GoFundMe https://www.gofundme.com/f/another-ms-warrior

CBD (Please search CBD Brothers)

LDN https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn

Ampyra/Fampridine https://mstrust.org.uk/a-z/fampridine-fampyra

131 My current thoughts about HSCT

This is going to be one of those posts where I throw a load of my thoughts on to the screen, in the hope that I can make some sense of them. So, if that’s not your thing – click away now!

As you all know, I was meant to be travelling to Russia on 16th March for HSCT (Haematopoietic Stem Cell Transplant) … hours of research, numerous discussions with family and friends and huge fundraising efforts had led to this point. Provisions were purchased, the house was disinfected, visas were obtained, plans put in place for my return, flights were booked and I was all ready to go. Then along came COVID 19 and everything changed. With just 4 days to go, my trip to Russia was cancelled and ten days after that, the UK began lockdown.

Before COVID, I was feeling incredibly positive, full of determination and confident in my decision. Four months on, I am struggling to connect to those feelings and now find the thought of doing this really frightening.

Initially, I was keen to get my treatment back on track as soon as possible, but as the full impact of the pandemic unfolded, my thoughts on this began to change. There was talk of the clinic reopening in July and this has now been put back to at least September, but I wouldn’t feel at all safe going that soon. The Russian borders remain closed and their COVID infection rate is rumoured to be high.

If things had gone ahead as planned, I would be 3 months post transplant now … past the most dangerous, low immune system, phase, hopefully starting to recover, reconnecting with friends, getting back to work and seeing my hair beginning to return. I was so ready to take this on … but now totally dread that this is all still ahead of me.

Like all of us, I have spent the last few months in lockdown and have experienced a mixture of emotions. I’m a sociable person, so have struggled without daily contact with others and with not see my friends and family. I’ve also been unwell during this time, so it’s been quite a challenge. Maybe this was a glimpse of how life might be in the first weeks and months after HSCT? Would I want to put myself through that again? Maybe I feel that way because we’re not out of it yet and I’m still missing my old life? 🤷🏼‍♀️

Before COVID I also felt confident about keeping my house clean and sanitised and about all the extra measures needed to keep infection risk to a minimum during the early weeks and months after treatment, whilst the new immune system is developing. Now I am super anxious about germs everywhere!

In my mind, my treatment has been put back until COVID has gone and who knows when that might be?!

In the meantime, all the other worries that keep me awake at night continue to haunt me … Can I really manage to carry on working? If only I could afford to reduce my hours. Should I move house? Will my steep stairs kill me?!

These are issues I planned to think about after HSCT, but with the delay, I’m being forced to think about them now

I always feel it’s a bad idea to make important decisions while you have “stuff” going on. With the COVID pandemic, we all have stuff going on and we are likely to be in this situation for quite some time. How can I decide what to do??

I’ve been having some counselling (by telephone) over the last few weeks and through that I have realised that I’ve never really come to terms with my diagnosis and carry a lot of shame and guilt associated with it. Counselling has been really helpful and I am grateful that my employer has funded this for me. I am now back at work (from home) on a phased return, something I felt was impossible just a few weeks ago.

So dear friends, if you have any words of wisdom to help me deal with the whirring thoughts in my head , do let me know!

I don’t want anyone to be too concerned about this post full of doom, gloom and confusion … I’m feeling ok day to day and have found some real positives in lockdown (maybe I’ll write about those in a later post). I continue to be so very grateful to family and friends for all your support. I also want to apologise to loved ones I haven’t had much contact with (that includes you Melanie and Auntie Ann) … I’ve had to keep my world very small recently to cope with the madness … I promise I’ll be in touch soon xx

Stay safe everyone ❤️

128 Where am I up to?

Isolation day 47 and I can no longer remember my old life! This has been the strangest few weeks any of us have ever known and I think it’s beginning to take its toll. What did I used to eat? Does the rest of the world still exist? What’s the cat trying to tell me?

I’ve had numerous conversations with friends and acquaintances who are experiencing sleeplessness, exhaustion and nightmares! I don’t often remember my dreams, but I sure do know how they are making me feel at the moment. I’m waking up most nights (that’s after spending a good couple of hours tossing and turning trying to fall asleep in the first place) feeling panicky, scared and stressed after a bad dream. Apparently we use our dreams to process our thoughts and feelings, so if you consider how much change we are now living with, it’s not surprising we have a lot of anxious thoughts to process! I hope someone is doing a study of this somewhere, as it’s actually quite fascinating 🤓

I sometimes use a meditation App called Calm, to help me relax and to get off to sleep. I’m still using it, but even that isn’t quelling my general anxiety. It is quite comforting to find that lots of us are experiencing this difficulty at the moment, but I do worry about how this will impact us in the long run.

As well as dealing with life in lockdown, missing family and friends, worrying about loved ones and about the planet and wondering whether Vodka can really be classed as an “essential item”, I am also experiencing an upturn in my MS symptoms, as well as the disappointment and implication of the cancelling of my treatment.

I’m not going to talk much about my MS issues here, as I plan to log a full inventory of my current symptoms in another blog post at a later date.

As you know, I was all geared up to fly to Moscow on 16th March, to stay for a month to have HSCT to treat my MS. It was a long and difficult journey just to get to that point – 2 years of fundraising, lots of stress, visa applications, flights booked then changed and lots to prepare for my time in Russia, my journey home and making the house safe for my return. When anyone mentioned a time in 2020 that was beyond the 16th March, it didn’t really exist in my head. My whole life was geared up to getting there and getting it done! 💪🏻

It was Thursday 12th March when I heard that the hospital was having to put new restrictions in place, which ultimately led to me postponing my treatment. It was a really tough decision but ultimately it was the right one. If I’d gone to Russia, I might not have been able to get home and My COVID fear would have been through the roof. Life may be challenging now, but at least I’m safe as I can be, in my little house with my 2 crazy cats.

Luckily my flights were cancelled by the airline, so I should be able to get my money back … I’ve been trying to get through to them for 7 weeks now, with no success (unless you count sitting in a 2 hour telephone queue success). I’m hoping that will all got sorted out eventually.

I had already sent the payment to the hospital for my treatment, a complicated international money transfer, but there was a delay in it getting there, due to everywhere beginning to shut down around that time. It arrived eventually and the hospital sent it straight back, but it hasn’t got to me yet. I’m told it’s somewhere in transit and not to worry (but of course, I do!).

I had to let my GP know that I was still at home, then my neurologist and the team in Sheffield. I am due for a further MRI scan in Sheffield as soon as it is safe to travel there. Theoretically there is still a very slim chance I could be accepted for treatment there, so it’s certainly worth me pursuing this.

I had a neurologist appointment in Salford booked for the 5th May and an MS nurse appointment at Stepping Hill booked for the 28th April. I was notified that both would be telephone appointments and then later notified they were cancelled. I’ve had a new neurologist appointment arranged for April 2021!!

Chronic illness is an area where our health system struggles. Most of the neurology team that I have met are hardworking, dedicated experts in their field, but they are so poorly funded and have to spread themselves so thin, that they struggle to provide an adequate service. Phoning and demanding to be seen usually works, but it shouldn’t be this way and I find it exhausting and frustrating.

I went back to work around the time that lock down was beginning and was working from home. At first it felt good to have something else to think about and to have that contact with colleagues. But as time went on, I started to struggle with increased pain, fatigue, brain fog and anxiety, so have made the difficult decision to stay off work for now.

So, where am I up to? Will I ever have HSCT?

The answer to the second question is that I really don’t know. The situation we are now in has really frightened me. There is no treatment for COVID 19. In severe cases, all the medics can do is treat symptoms and do all they can to keep you alive, whilst your immune system fights the virus. The immune system remains compromised for quite some time after HSCT and it can take 12-24 months for it to return to normal. If I were to catch the virus during that time, particularly in the early weeks and months, this would be very risky indeed.

Most clinics offering HSCT currently have their treatment programmes on hold because of this and there has been no treatments started in the UK, Europe or Russia during the last few weeks. Initially the clinic in Russia offered me a new date in July, but I don’t think it will be safe enough for me to do it then and I’ve recently heard that they are possibly closing until at least September. Looking forward, it’s hard to see a time when it will feel safe enough, with concerns about the journey home, particularly frighting.

So, everything is in limbo and I’m just doing my best to live with it!

Stay safe everybody ❤️

125 Isolation

What is this strange world in which we are now living? Nothing is as it was and it’s very unsettling.

This has been a really tough week for many of us and I hope you are managing ok and doing all you can to keep yourself and others safe.

Last Monday, I should have been flying to Moscow for HSCT. I’m so disappointed to not be having my treatment and the emotional shock of this change has been very difficult. For me and my family, everything has been building towards that day and that one aim, so it knocked us for six when it didn’t happen.

As we have moved though the week and the threat of CV19 has increased, and all the necessary restrictions have been put in place, I have become increasingly thankful to be at home and to be feeling relatively safe. The thought of trying to travel home from Russia in this situation really scares me … so I’m going to sit this out and see what happens when life gets better for us all.

I spent most of Monday and Tuesday in a state of emotional shock about this big change, with the rapidly evolving CV19 situation as the back drop. On Wednesday I had a telephone appointment with one of Professor Sharrack’s team in Sheffield. I have to say that this was the best neurology appointment I have ever had! He really took the time to ask me how I am, what has changed since my last appointment and how my symptoms are impacting on my life. He was also pleased to find that I was still here and not planning to go to Russia anytime soon. I’m not sure what my rights are to choose my own consultant, but I intend to find out and choose this one if I can.

The upshot of the appointment is that I should have had a brain and spinal cord MRI in January and no one seems to know why it didn’t happen. So, I am to be referred again and will have a further consultation when the findings are known. Obviously I have no idea when this scan might take place, but at least I’m still in the system somewhere! I was also informed that the hospital in Sheffield have suspended their HSCT for autoimmune diseases because of the risks presented by CV19.

There was another devastating blow this week when we realised that the Swan Brewery head shave and Bald Eagle beer launch event cannot go ahead. Jimmy and Gill have worked so hard for this and are now having to work doubly hard to protect their small brewery business from the current crisis.

If you are in the Leominster area and would like some good beer as an occasional isolation treat, check out their collection or drop off options here …

Swan Brewery

On Monday, I discovered that both Niamh and I are on the government list of vulnerable people – me because of my MS and Niamh because of her asthma.

I decided I need to “socially distance” and self- isolate as much as possible ..something I found very upsetting and depressing to begin with. On Wednesday, we made the decision that we should not be together. Niamh lives part of the week with me and part of the week with her boyfriend, Callum and from now on, will be living at Callum’s. It was incredibly upsetting for us both when she came home after work to collect a few things, blow kisses and say goodbye from a distance …but it was the right thing for us to do.

Yesterday Niamh dropped off a food parcel after work. I thought I’d feel upset and it was hard not to hug her, but it really did give me a boost to speak to her and to see her in the flesh.

On Thursday I went back to work. When I say “went” I didn’t actually go anywhere at all, but worked from home. All of my team have been working from home since Tuesday and both my employer and team manager have been amazing at ensuring everyone is safe and able to work. We have a work WhatsApp group and are keeping in constant touch with each other, which is great. I didn’t want to go to the office at all, so a colleague collected a few things and brought them to me and we even managed a short socially distanced chat, with me on the door step and her on the pavement! It’s good this is happening at a time when there is a break in the usual rainy weather! Thank you Jan and lovely to see you 😘

On Wednesday evening, the government announced that schools in England would be closing to most pupils from Friday afternoon. It’s actually incorrect to say that schools are closed – most are, in fact, open and will be providing care for the children of key workers as well as those who may be vulnerable. I work with children who are in care and who automatically come under the vulnerable heading, so it’s been a hectic couple of days trying to ensure everything is in place for them as it should be. The task was made more difficult because of both the lateness and vagueness of government directions and the variety of ways in which these were being interpreted.

Most council staff who are able to work from home are now doing so and our IT systems weren’t designed for this level of remote demand, so there have been challenges, but we are doing our best.

All in all I have enjoyed being back at work. It has been good to have something different to focus on (other than on myself!) and to feel I am doing something useful. I am absolutely exhausted though!

I’m glad it’s now the weekend and plan to catch up with friends and family via Skype, messenger, Facebook, whatsapp, text and good old fashioned phone call. How would we have ever coped with this situation without technology and access to the online world?! I’ve even been invited to a virtual pub lock-in!

I also plan to make some lists of things to do whilst at home and create a bit of a timetable for myself. I definitely function best with a bit of structure and purpose in my life. In addition, I will be reviewing my food situation and having a stern word with myself … if I continue as I am, I may well avoid the virus but I am likely to become a very fat alcoholic, which I’d also like to avoid.

The government and NHS websites are being updated regularly with advice and guidance on what we should all be doing to protect ourselves and each other and I am also checking various MS/CV19 pages too …

NHS COVID-19 page

Coronavirus (COVID-19): what you need to do (Government page)

MS Society COVID-19 page

Professor Gavin Giavannoni’s MS and COVID-19 Microsite

So this is my life for now. Living and working in this little house on my own, with two crazy cats for company. I hope to keep in touch with the people who matter to me and I hope to get myself into some sort of routine that also includes time outdoors. I am dependent on others to do my shopping and bring me what I need …this doesn’t sit easily with me but I’m going to assume that no one will offer help unless they genuinely wish to provide it. There is an amazing local community group emerging where I live, offering all sorts of help, home deliveries etc. so I’ll be making use of that too. Most human beings are fantastic in crisis! (We won’t mention the virus deniers and panic buyers for now!)

120 29 Days!

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

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

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

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

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

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

—- 🧳🧳🧳 —-

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

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

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

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

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

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

GoFundMe

115 Planning for Russia

Planning for my trip to Russia for HSCT is well under way now, so I thought I’d share with you where I’m up to.

A visa is required for travel to Russia and the process for this is rather complicated. I am waiting for an official visa compliant invitation from the hospital and once this arrives, there is a long and detailed online form to compete, followed by a visit to the Russian Consulate in Manchester. Shortly after that, my passport will be returned, containing a 90 day single entry Russian visa. I am hoping to find time to book my flights in the next few days and will feel quite relieved once that’s all done.

Then it’s just preparing the house and things I will need on my return, sorting things out at work, finalising plans for my aftercare and packing my suitcase to do! I am already compiling lists. My mum was one for writing lists and I often think of her when I’m in list writing mode ❤️

As the time draws nearer, friends and family are naturally asking lots of questions about how long I will be away, what the treatment will involve and how I’m likely to be when I get home. I thought I would try to answer some of those questions here.

I will be in Russia for a total of 30 days from Monday 16th March until Wednesday 15th April. I plan to travel on my own, basically to keep costs down. I have spoken to many others who have travelled alone without difficulty and know how to plan for the journey home.

The first few days are taken up with pre treatment testing. This is to ensure there are no hidden medical conditions which could be impacted by HSCT. There is also an opportunity to have a full MRI scan of the brain and spinal cord in one of the higher strength Russian machines, which can show greater detail than the UK MRI machines. During this time, there is also a bit of down time, during which I’ll be able to go outside, mix with other patients and hopefully squeeze in a bit of sightseeing.

The exact protocol used varies from clinic to clinic, but at the Moscow hospital, the timeline is as follows …

Day 1 – 4 Examination and final decision on treatment.

Day 5 – 8 Stem cell mobilisation Drugs are used to stimulate the bone marrow to produce extra haematopoietic stem cells and release them into the blood. These stem cells can develop into the cells of the blood, bone marrow or immune system.

Day 8 – 9 Stem cell harvesting – An apherisis machine is used to extract stem cells from the blood. These are then frozen until needed.

Day 9 – 12 High dose immunosuppression (chemotherapy)

Day 13 Stem cell reinfusion

Day 14 – 27 Haematological and Immunological recovery – Isolation – the body builds a new immune system using the reinfused stem cells.

Day 29 – 30 MoAb-Rituximab and discharge

It is important to note that it isn’t the stem cells that treat the faulty immune system (the root cause of MS), but the chemotherapy that partly destroys the faulty immune system, allowing a new healthy one to grow. It is thought that a new immune system would eventually grow following chemotherapy, without the introduction of stem cells, but by providing the transplant, recovery is much quicker and the time a patient has a compromised immune system is significantly reduced.

Through the Facebook HSCT support groups and by reading numerous blogs, I have followed the journey of many patients travelling to Russia and through treatment. I feel I have a good and realistic idea of what to expect …and I believe I will cope and it will be worth it.

Isolation

The period in isolation is not as alarming as it first sounds. The reason for isolation is to reduce the risk of infection whilst the immune system is at its lowest. There are regular visits from medical staff and your developing immune system is monitored daily via blood tests. Once the medics are happy with your blood results, you can leave your room and mix with others again. I see the isolation phase as a time to rest and recover and allow the body to heal and repair. I will have access to TV, Netflix, Facebook, Whatsapp, my kindle, phone etc and will be able to keep in touch with family and friends (as well as updating this blog!). I’m not worried about coping with isolation.

Hair Loss

Yes, I will most likely lose my hair!

The chemotherapy used causes hair loss in virtually all patients and the use of cold caps is not recommended. I quite like my hair so was a bit bothered by this when I first read about HSCT, but I’m feeling fine about it now. Other patients have spoken of the liberation of baldness and I’m looking forward to seeing what it’s like! I can’t see myself bothering with a wig so will be spending some time researching funky scarves and head wraps over the next few weeks.

Once I am home, my GP has agreed to manage my aftercare. This will mainly involve monitoring my bloods to ensure my immune system is regrowing. When first home, I am likely to be tired and in need of peaceful rest. It is important to keep the house spotlessly clean, to eat carefully (to avoid infection) and to avoid contact with sick people. My amazing daughter has arranged to take some time off work to take care of me and I am so grateful for all her support.

Recovery varies enormously from person to person and is often described as a rollercoaster. The general advice is to eat a safe and healthy diet, slowly build exercise and movement, but most of all to have a positive mental attitude … or as Dr Federenko advises …

GoFundMe

Fundraising Relaunch

I have news!!

This week I have been in touch with the clinic in Russia, updated them with my most recent MRI info and have been allocated a new admission date …

This gives me a few months to prepare, lose some more weight and of course, fundraise!

So, the day has come for us to restart our fundraising efforts. It’s not easy asking people for money, time, help, support … but here I am!

We are already working on some fundraising event ideas, including a bike ride, sky dive and various social events.

If you can help us in any way, please get in touch.

Is there a challenge you’d like to take on that you’d be willing to do as a sponsored activity? Even better if your could get a team together!
Do you have anything you could donate for us to auction or give as a raffle prize?
Do you have access to a venue we could use for an event (day or evening)?
Do you know someone who could print t-shirts for free (or cheap)?
Have you got any ideas for a fundraising event?
Do you have any links with local media?
Do you know any celebrities who may be willing to help?
Could you help us with a quiz night?
Is there anything else you could do to help?

You can speak to any of us in person, via this blog or through any of our social media pages …

Facebook – Another MS Warrior

Instagram – @anothermswarrior

Twitter – @AnotherMSWarrio

Thank you for reading and for any help you can offer xxx

GoFundMe

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

99 The story so far …

Today, 16th September 2019, is exactly one year since we launched our fundraising campaign, asking family, friends and strangers to help raise a massive £40K to fund HSCT for me in Moscow. I know I have many new readers since then, so thought now was a good time to write a bit of a summary of the story so far and also to reflect on how far we have come.

I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2017, after at least 5 years of worrying symptoms and concerning finds on MRI scans. I also have Hashimoto’s Disease, autoimmune thyroid disease, which was diagnosed in 2006.

The progression and accumulation of disability of my MS has been rapid. At the time of diagnosis, my EDSS score was around 1.5 and by December 2018, my neurologist assessed me as 6 (I think I am nearer 5 or 5.5). I have other long term problems and don’t want to get any worse.

In May 2018, I saw a BBC news report about HSCT (Haematopoietic Stem Cell Transplant) being successfully used to treat MS and halt its progression (HSCT does not cure MS or undo previous damage to the brain and spinal cord). Since then, I have been reading, researching and talking to others in order to learn everything I can about HSCT and find out whether could be a viable option for me.

Click here …

Stem cell transplant “game changer” for MS patients – BBC News 18.03.18

By the Summer of 2018, I had come to the conclusion that it could and began looking seriously at how to access the treatment. I was aware that some MS patients have been successfully treated in the UK, but that the criteria for inclusion were very specific. I also knew that I did not meet the criteria, so began researching options abroad.

To cut a long story short, I identified a clinic in Moscow, the AA Maximov Department of Hematology and Cellular Therapy, as my best option. Well over 1000 international MS patients have been treated here, with several hundred from the UK.

The cost is €45,000 and with the exchange rate at that time and the additional cost of flights and visas, we worked out that we would need £40K to get me to Moscow for the treatment I need.

We launched our Go Fund Me page on 16th September 2018 and began organising events and taking part in challenges to raise money. Thanks to the generosity of friends, family and kind strangers, we have raised ….

In the mean time, I also applied to the clinic in Moscow, sent them my full medical records and was accepted for treatment. We had hoped that I could have HSCT in April 2018, with a plan to borrow the rest of the money needed and to continue to fund raise afterwards. Then, a couple of months before this, I heard about a new HSCT trial planned to take place in the UK, being led by Professor Sharrack (neurologist) Professor Snowden (haematologist) and at Sheffield Hallamshire Hospital. This is the team mentioned in the BBC link above. I contacted both directly and despite not meeting their published criteria, they agreed to see me.

I had my first appointment with them in June, followed by an MRI scan in July. I was told I’d have a follow up appointment in August, but I’m still waiting. They tell me I will be allocated an appointment on Monday (16th September) and will receive a letter soon after.

The last few weeks have been very difficult for me. I’m not good at being patient or at not knowing what’s coming next. I also feel that all other aspects of my life are in limbo …I can’t plan anything! I must admit this has really got me down.

Hopefully by the end of this week, I’ll have an appointment date and feel a bit calmer about it all! I think once I have a date, I will be able to throw myself into other things until the date approaches.

The decision on whether to treat me in Sheffield or not, all hinges on the outcome of my recent MRI scan …if there is current disease activity, then the answer could be YES. If there is no current disease activity, then the answer will definitely be NO. My last 3 scans (most recent in May 2018) all revealed current disease activity, which was upsetting and worrying at the time. Now I’m in the strange position to be hoping for disease activity!

I am still in touch with the clinic in Moscow and they are aware of my situation. If I receive a NO from Sheffield, I will ask for the next available date in Moscow (likely to be early 2020).

Here’s a summary in numbers, of all we have achieved …

Funds raised … £18,646
Number of donors … 147
Go Fund Me followers …145
Blog posts … 99
Blog subscribers … 22
Blog views … 5,283
Facebook followers … 107
Instagram followers … 208
Twitter followers … 262

Never in my wildest dreams did I think we could achieve this much, so thank you to everyone who has donated, helped with events, provided support, shared online and who have been there for me through this journey so far.

Hopefully I’ll have an appointment update by this time next week!

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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?!