HSCT – 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

139 I’m back!

2022 hasn’t started quite as well as we were all hoping, with all our lives still being impacted by Covid 19, Brexit and worries about our financial futures. I am trying hard to muster every ounce of optimism I can find, but it’s not always easy.

I’ve been struggling to think straight for the last few months, let alone write, so my blogging has totally fallen by the wayside. During the last year, I have retired from work on medical grounds, worked my way through complicated pension paperwork and evidence, sold my house, been rescued by family and eventually moved to a rented ground floor apartment nearer to my children and friends. It has been a lot to process, but I think I’m finally reaching a point of acceptance and can now begin to look more clearly to the future.

My brand new park home has never materialised, so I have had to change my plans. I am in now the process of buying a lovely new apartment and will definitely feel much more secure once the solicitors have done their stuff and the place is finally mine. I won’t say any more on this for now, just in case I jinx it!

As always, my MS has been making itself known. I have had several falls in various situations and suffered lots of bruises. It really does hurt when you hit the ground when you’re this size!

I had an MRI scan in July, which did not find any new disease activity in my brain and spinal cord … this is the first time a scan has revealed this outcome. It’s a cause for cautious celebration, but sadly, it doesn’t mean that my disease is no longer progressing. Hopefully it means that the DMT (Disease Modifying Therapy) I’m taking (Tecfidera) is helping. I’m going to do a future blog post on MRI, progression without visible lesions and “smouldering MS”, so will talk about this more then.

I am still thinking about HSCT, but two years on, have much more doubt than I did previously. I’ll do a future blogpost on this at some point too and am mindful of the need to be transparent about funds raised as well.

In the meantime, I’m going to spend the next few months researching what I can do now, to help me to live my best life with MS and putting what I can in place. I have started a bit of a list and will add to it as I begin my exploration. I am also open to helpful suggestions if anyone has any.

LDN (Low Dose Naltrexone)

“Low-dose Naltrexone has been used off-label as a treatment for various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases”. Low-Dose Naltrexone | National Multiple Sclerosis Society

Fampyra

“Fampyra is indicated for the improvement of walking in adult patients with multiple sclerosis with walking disability (EDSS 4-7)”. Fampyra

HRT (Hormone Replacement Therapy)

“A further observational study in 2016 looked at 95 post-menopausal women with MS, of whom 61 had used HRT. The use of HRT was associated with better physical quality of life. It is thought that female hormones may have a neuroprotective effect and this is why HRT may be useful”. MS Trust: Menopause

FES (Functional Electrical Stimulation)

“Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord”. Functional electrical stimulation (FES) | MS Trust

Red Light Therapy and Near Infrared Light Therapy / Infrared Sauna

“Infrared light can penetrate skin and affect structures lying underneath, and Lyons first thought of applying it to MS after talking to colleague Janis Eells, who had studied its retina-healing powers. Other researchers are exploring infrared treatments to help with diseases such as Parkinson’s and muscular dystrophy.” Red Light Therapy

Improving Gut Health

“The microbiomes of people living with multiple sclerosis (MS) are differentTrusted Source from those of people without MS. Based on this information, the hope is that new therapies can be developed to help people with MS”. Healthline: What’s the Latest on the Link Between MS and Your Gut?

Taopatch

“Taopatch is a patented wearable nanotechnology device that combines acupuncture with light therapy”. Taopatch

Hyperbaric Oxygen Therapy

“Hyperbaric oxygen therapy (HBO or HBOT, also called high dose oxygen therapy (HDOT)) involves breathing oxygen through a mask in a pressurised chamber, similar to a diving bell”. Hyperbaric oxygen therapy | MS Trust

Cannabidiol (CBD)

“One in five people with multiple sclerosis (MS) surveyed in 2014 told us they’d used cannabis to help with their symptoms. They said it can help with muscle spasms or stiffness (spasticity) and pain”. MS Society: Cannabis

Revitive

“EMS is a world renowned technology that works by delivering electrical pulses that activate nerves in the body, causing muscles to contract and then relax”. Revitive

Circle Rehabilitation

“At Circle Rehabilitation, we build bespoke private treatment and rehabilitation programmes for people with multiple sclerosis. Our aim is to build your independence as much as we can. Our rehabilitation programmes are medically-led – your care and rehabilitation is overseen by one of our specialist rehabilitation consultants and physicians”. Circle Rehabilitation: Multiple Sclerosis Treatment

The MS Gym

The MS Gym

Exercise

Diet

Car with automatic gearbox and other adaptations

I want to finish by wishing you all the very best for 2022. Once again, I have been very poor at staying in touch with the people I care about in recent months (years). Between lockdowns, my anxiety and increasing disability, I know I have neglected some people. Hopefully once I’ve moved and started to take better care of myself, I can begin to put that right ❤️??

Take good care of yourselves everyone X❤️X

136 New year, new blog post

Happy New Year everyone. Thank goodness 2020 is over – it has been a dreadful year all across the world and I don’t feel I can begin a new year blog post without first acknowledging the huge loss and suffering the COVID-19 pandemic has caused to so many. Over 1.8 million lives have been lost to the virus worldwide (over 73 thousand in the UK), with many more left with debilitating health problems and organ damage following recovery from the virus itself.

Another consequence of the pandemic has been the numerous lockdowns and other restrictions we have all had to cope with for many months. The practical impact and mental health consequences of this have been enormous and it’s going to take us all a long time to recover.

But 2021 is here at last! The start of a new year always brings new hope and perhaps resolve to work towards a better future. This is how I’m choosing to view today.

I have discovered a lot about myself this year. Perhaps enduring long periods of solitude forces us to look inward and to question things more. I have found that I am more self sufficient than I thought and despite having many down days, I have managed to pick myself up and do something about it. Perhaps the greatest thing I have learnt is that it is no use hanging on to things/situations that no longer serve you, even if you believe everyone expects that you should. My two big decisions (taking ill health retirement and moving house) have come from this. I realised I was putting all my energies and focus on to hanging on to my work and my home, but that both of these were causing me harm and leaving nothing for any other aspects of my life. I’m still very sad about both, but glad to have made these decisions and confident that I am doing what is right for me.

It’ll be while until both of these come to fruition, so I’m planning to spend the next few months doing all I can to get myself ready. Despite living alone, I have eaten and drank for too much over the last few weeks (stressful times often lead to comfort eating for me) … now need to get a grip! When your body doesn’t quite function as it should, carrying extra weight adds further stress to a messed up system.

I’m not one for new year resolutions but by the end of January, I plan to be eating healthily, back in a proper sleep routine and moving a bit more. And I still have a lot of sorting and packing to do too! Plenty to keep me busy.

The other thing I have realised during this year of lockdowns, is how important people are to me, well, actually I already knew this, but this time of reflection has doubled me belief. We don’t need lots of “things” in our lives, we need authentic connection with people who mean something to us. So, when life returns to “normal”, I’m going to focus on time with good people to help recover from this last year and invest in a better future. At this point, I’d like to say a massive thank you to friends and family who been such a great source of support. I’m not always good at staying in touch, but I do appreciate hearing from you and think of you all often.

Recent news of vaccine rollout has given us all a boost … light at the end of the tunnel at last! I think I am in group 6 on this priority list, so may still have some time to wait (but that’s fine).

So I am starting the new year on my own, in England Tier 4 (lockdown by another name) with some feelings of trepidation, but mostly optimism for the year ahead, at least once these first few months are over.

HSCT is still forever in my mind, although it’s obviously on the back burner for now. The hospital in Sheffield has not resumed treatment for MSers since it was suspended in the summer; I am uncertain of the situation in London. I know a few have braved the journey to Mexico over the last few months and others are going soon. The hospital in Russia is continuing to treat a few patients, however, travel restrictions mean it is impossible to get there at the moment (if I understand correctly, the Russian authorities are not currently issuing visas to UK passport holders).

I’d like to end by sharing a picture of a Facebook conversation with my friend Beth, who has recently learnt the art of Tarot reading. This was the outcome of a little online card picker she set up. Fingers crossed ??????

Take good care of yourselves and try to stay positive if you can. If that doesn’t work for you at the moment, accept where you are and know that you don’t have to be strong all the time, just do your best to keep going (an achievement in itself when life is a challenge).

❤️

135 Updates – work, home, HSCT

Hello dear reader and apologies for my long absence. The last few months have been a period of much deliberation, discussion with friends, family and professionals, sleepless nights and general chaos. I haven’t always coped well with this, but it has led me to make an important decision in relation to work.

Before I explain further, I want to tell you a little about my job. I am a teacher and for the last 4 years, have worked with a team who support and promote the education of children who are in care (we are known as a Virtual School). The work is challenging, but very rewarding and it has been wonderful to be doing something that I really believe in. We are a team of just 13 and I am very blessed that each and every one of my team mates is a friend as well as a colleague. I remember reflecting a few months into this role, that it felt as if it was where I was meant to be … I was learning so much and really felt I was making a difference to children’s lives.

During the last 18 months, I have struggled more and more with work as my health has deteriorated. I have had many weeks off sick, recovering from relapse, fatigue and fall injuries. On several occasions I have fought my way back to work, to only be overwhelmed by debilitating symptoms within a few weeks. It has taken me a while to accept it, but I have come to realise that this situation cannot continue.

My headteacher and the local authority have been wonderfully supportive through all of this. I have reduced my work hours and had appointments with Occupational Health (OH), all reasonable adjustments have been agreed and put in place, but I can’t escape the fact that I am getting worse and working has become harder and harder

It is important that people with MS make good lifestyle choices and there is emerging evidence that those who live a healthier lifestyle do much better in the long run. When I’m not working, I manage to walk daily, do yoga, eat healthily, sleep better, meditate and to generally take better care of myself. Once I’m back in work, this uses up all my physical, emotional and cognitive energy and I’m not able to do all the things I need to do to keep myself well.

Neurology Professor Gavin Giovannoni discusses this issue in this blogpost (and in many others) … Barts MS Blog – Moving the Goalposts

So, I have made the difficult decision not to return to work and to pursue ill health retirement. At my most recent OH appointment, I was assessed as not currently fit for work, with no actions identified to support my return. My MS Nurse and GP are also in agreement and my neurologist will provide a supporting report. As you can imagine, I have been heartbroken by the realisation that I can’t manage any more, but I also have a huge feeling of relief that a decision has been made … and that tells me it’s the right decision.

I’m trying not to dwell too much on the sadness of the situation for now, but to look forward to a future where I can better take care of myself and live my best life. I hope I will feel healthier and will have more time and energy for family and friends. I plan to become involved with local groups and to do some volunteering in schools or with vulnerable children, as I still feel I have a lot to give. I’m hoping I can dip in and out of this and do as little or as much as fits with where my health is at. My work friends have promised to keep in touch and to meet up when we are finally allowed.

So, 2020 really has been a huge year for me … lots of staying home, thinking and making decisions. I will be moving house early in 2021 and am hoping to have a confirmed date on that within the next few weeks. With the help of Connor, Sophie, Niamh and Callum, I have made a slow start on sorting and packing my belongings. I’ll be so relieved when that job is finished!

HSCT has resumed at the clinics in Moscow and Mexico. The hospital in Moscow is only accepting patients from certain countries, as the Russian government is strictly limiting visas to enter the country at the moment. A few British MSers have had treatment this year and I am full of admiration of them for their determination and bravery. For a number of reasons, I am deferring making a decision on my treatment until next year at some point. I feel that having the treatment is as safe right now as it has always been, but I would be concerned about travelling home with a severely compromised immune system.

During the early weeks and months of recovery, it is vital to avoid infection and Coronavirus is a particular danger. Sadly, the HSCT team at Sheffield have had 2 patient deaths due to them catching the virus soon after treatment. These were cancer patients, rather than MS patients and the hospital have now stopped all but the most urgent treatment.

If I had treatment now, it would be necessary for me to totally isolate myself for some time afterwards. I wouldn’t be able have family and friends staying or even visiting to help me and I would need to manage everything at home on my own … including trying to maintain a scrupulously clean and sterile environment, whilst recovering from challenging treatment. Having already spent much of this year in isolation, I don’t feel I could face doing this for now.

We are not actively fundraising at the moment, but in the interests of transparency, thought I’d share where we are up to. The total collected stands at £28,531 and I remain so grateful and in awe of all of you who have contributed, attended one of our events or taken part in a sponsored activity.

You can check up on the page here … GoFundMe

The funds are not actually held by Go Fund Me, but are automatically transferred to a bank account, which is kept separately from my other finances. If we decide ultimately that HSCT has become too risky for me, I will offer to refund individual donors and contribute the rest to AIMS to support others pursuing HSCT.

Autoimmune and Multiple Sclerosis (charity)

If you’ve got this far, thank you for reading my waffle! I am very aware that I am not the only one dealing with difficulties right now, all with the backdrop of a global pandemic and harsh restrictions, which are getting us all down. There are, hopefully, better times ahead, so until then, do what you need to do to take good care of yourself and those around you ❤️

133 A few updates

Work

With the start of the new term, I have been back at work this week. Thankfully, my employer continues to advise that all those who can work at home, should do so. As a person with chronic illness and disability, there are advantages to working from home – mainly that I can get up, log on and just get on with it, rather than negotiate the challenges of rushing about to get ready, sorting out a packed lunch and driving to the office. In the past, I would often arrive at work feeling exhausted from the efforts to get there. I don’t miss the parking issues, queues for the lift, long walk to the kitchen or having to go up or down a floor to visit the ladies. Now I’m starting my working day feeling fresh and ready to go and I haven’t used any unnecessary spoons just to get to that point.

You can read more about Spoon Theory here … The Spoon Theory written by Christine Miserandino

My cats have loved having me at home over the last few months and one in particular loves his morning snuggle on my knee each day. He’s not at all happy that some mornings I’m now sitting at my desk and my knee is no longer available …

Of course there are down sides to working from home and I miss the contact with colleagues and face to face kitchen chats to quickly agree actions or find out information (all so much more formal and convoluted by email).

I have no idea what the new version of normal will be in the future, but I hope there will be continued opportunities to work from home, at least for part of the time. I really feel this would help me to stay in work for longer – better for me and better for society. I know that many disabled people around the world are feeling this too.

House move

Over the last couple of months, I have come to the conclusion that now is the time for me to move to a home without stairs. Thankfully, I haven’t had any further falls, but I’ve had lots of wobbles and near misses. I’m anxious about the stairs every time I use them or cross the landing to go to the bathroom from my bedroom. I love my little house and garden and I love the community I live in, but it’s not right to continue living like this for a longer period of time.

I have considered the option of having a stair lift fitted, but that wouldn’t take away my daily fear of falling from the top. I also have a cellar here, which is another challenge, as for some reason no one thought to install a handrail. The loft is also difficult to access and I don’t like having to ask for help whenever I want anything to go up or down. In addition, this house is well over 100 years old and so needs continual maintenance and is expensive to heat.

So, I am now in the process of getting my house ready to sell. I’ve only been here for 3 years, and there was a lot of interest at the time of buying it. The housing market in this area seems buoyant, at least at the moment, so I feel this is the right time to go. I have a plan coming together on where I’m moving to, but will keep that under wraps for now.

HSCT

HSCT has started again in Mexico and I’m already aware of a couple of Brits who have made that journey and are now recovering at home. The clinic in Russia is admitting patients again but I think visa issues have held up any Brits trying to get there. Hopefully this will be resolved soon.

I understand that some patients have started HSCT at the London hospitals, but no one is being treated in Sheffield just yet.

I have an MRI scan in Sheffield on Thursday. Professor Sharrack plans to compare this to the scan I had last July and if he can see new disease activity, he may still consider me for HSCT, which would be amazing. I have very mixed feelings about this. I started a new DMT (disease modifying therapy) a few months ago, which is hoped will reduce disease activity so it would be great if things are calming down. I have a feeling the scan will show a little activity, but not enough to meet Professor Sharrack’s criteria!

I used to find the MRI machine terrifying – feeling trapped, unable to move, cut off from the world and with all manner of super loud clunking and grinding noises going on, but I’m obviously becoming desensitised now, as I haven’t started worrying about it (yet)!

Tecfidera (DMT)

I am pleased to report that the initial flushing, rashes and itching triggered by Tecfidera have mostly stopped now. I still have the odd day when this happens, but it’s much milder. I haven’t yet spotted a link that would explain why it sometimes happens, but more often doesn’t. I have a blood test at the end of September to check liver and kidney function and once that’s cleared, there’s just possible hair loss to worry about!

Many thanks to family and friends for your continued support with all these ups and downs ?

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 ❤️

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

111 Mrs Bump

There has been a lot going on over the last couple of weeks so thought I’d come back with an update.

Sheila ran another stall at the Vintage Village on Sunday and raised a very respectable £116. Alan very kindly sold a few items of clothing through his vintage shop, 20th Century Stores and raised a further £90.

So the vintage sale fundraiser had brought in a grand total of …

Thanks again to Alan and the Vintage Village, but most of all, to my lovely friend Sheila for so much hard work and for all your support ?

~~ ? ~~

Thank you to family and friends who have decided not to send Christmas cards this year and to make donations to my fund instead. This has raised a total of £470 …absolutely amazing! Thank you everyone ?

We had hoped to hit £20,000 by Christmas, but with all these amazing efforts, our grand total now stands at …

I had an appointment with my neurologist on Monday …always a bizarre experience. Neurology services are obviously over stretched and trying to summarise a year’s worth of symptoms, concerns and questions into a rushed 10 minute appointment isn’t easy. By the end of the appointment, it was agreed that he will refer me to occupational therapy, write to Professor Sharrack and prescribe medication to address my fatigue and brain fog (assuming liver and kidney function tests are all good). He also suggested I stay off work until the end of term.

I have heard nothing further from Professor Sharrack and will find the energy to chase him again soon.

~~ ? ~~

Today I managed to fall down the stairs …I’m not quite sure how this happened, but I think my legs just gave way beneath me and before I knew it, I was on the floor at the bottom of the stairs!

Luckily I only have bruises, but I must admit I’m feeling a bit shaken by the experience. Steep Victorian staircases are not best ever for MSers it would seem!

I have only lived in this house for a little over 2 years and I was obviously aware of the unusually steep stairs, but had no idea how much of a challenge they would become for me. I mostly go up them on all fours, which seems to work well. Coming down stairs is a different matter and I really don’t feel safe a lot of the time.

I’ll add it to the list of things to worry about! ?

~~ ? ~~

You may remember a while ago I posted about Scott McCormick (From Gogglebox) undergoing HSCT at Hammersmith Hospital. Scott has been recovering well and has been keeping us all informed of his progress. He recently had an MRI scan – an insight into whether his MS has halted or not – today he got the results …

I am absolutely delighted for Scott. He has shared his journey on twitter and through videos he has made for MS-UK and the HSCT community has been following with interest. It has been wonderful to see him get better and better and to know that he is now looking forward to a happy healthy future with his family. I’m sure Scott will be a powerful voice for HSCT going forward and we are all very grateful to him for sharing his experience.

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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