Vicky

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 ❤️

130 Hello again

Hello everyone 😘

Here I am, starting another blog post with an apology! I’m sorry there has been no update for over 7 weeks. They have actually been quite tough weeks for me … I have been unable to work and have kept my circle very small, in order to cope (just close family and a few close friends).

Looking back, I now realise I have been going through a period of adjustment. My whole life was geared towards going to Russia for HSCT on 16th March and it has taken a while for me to come to terms with this being cancelled, at just a few day’s notice. Not knowing when, or if, I’ll eventually get there, is a difficult position to be in. I’ve had a deterioration in my walking over this time too, increased problems with my left leg, as well as increased joint and muscle pain. All this has been going on while we have all been living in very strange times indeed … no wonder it all became a bit too much.

I reported in my last post that I was soon to start two new treatments … one to hopefully improve fatigue levels and one to hopefully reduce MS disease activity.

I have had no side effects or issues at all with Amantadine and a slight improvement in fatigue levels, so will be continuing to take this daily.

I’ve had a slightly bumpy road beginning Tecfidera, with flushing, burning and rashes most days. Thankfully, this is reducing each as time goes and is now just about manageable.

I returned to work today and am pleased to report that everything went well. I’ve had great support from my head teacher and my team, who have kept in touch during my absence. I have a desk set up at home, with a lovely view and am looking forward to getting on with things.

I’m trying not to think too much about HSCT and whether it will ever feel safe to go ahead. I think it’s going to be quite a while until that decision can be made.

129 What’s happening with my MS?

Hello dear readers, I’m sorry for neglecting you of late. Today is my 66th day in lockdown and as everything is on hold, there really isn’t much to report!

I’ve had lots of messages and questions from family and friends about how my MS is affecting me at the moment and my plans for treatment, so I thought I’d write a bit of an update.

Over the last few weeks, I have had telephone appointments with my GP, an occupational therapist, a physiotherapist, my neurologist in Salford and with the neurology team in Sheffield. My long awaited appointment with the MS Nurse has been delayed as she has been redeployed due to the pandemic.

The situation with Professor Sharrack in Sheffield is that he believe that I have Secondary Progressive MS with superimposed relapses. This would exclude me from their criteria for HSCT treatment there. They would like me to have a further MRI scan, which they will compare with the previous one, before making a final decision. At the moment, the hospital is not carrying out routine scans, so this is likely to be on hold for several weeks/months/who knows?!

My own neurologist is very concerned about the length of time I have been without treatment and would like me to try another DMT (Disease Modifying Therapy). He understands why I am pursuing HSCT but feels that it won’t be safe to travel for treatment for quite some time (a year or more was mentioned) and would like me to be protected from further relapses during this time. So I have agreed to try Tecfidera. This is taken in tablet form and reduces both the frequency and severity of relapses. My neurologist thinks I am having lots of mini relapses, so hopefully this drug will reduce them.

You can read more about Tecfidera here … MS Trust – Tecfidera

Regular blood tests are required when taking Tecfidera, including an initial test to check liver and kidney function, full blood count and diabetes status. So, last week I went to Salford Royal Hospital for the test. It was a very strange experience, having not left my local area for weeks and only occasionally driving around the block.

The hospital was eerily quiet and no one seemed to be wearing a mask, except me! I was asked some COVID questions and had my temperature taken on arrival (by a man not wearing a mask) and several vials of blood were quickly taken (by a nurse who was wearing a mask).

I have also been prescribed a drug that may help with my debilitating fatigue and brain fog and started it this week. It takes a few weeks to begin to take effect, so fingers crossed it works for me 🤞🏻The drug is called Amantadine and is an antiviral which has been found to help 1 or 2 people in 5 with MS fatigue, although the mechanism for this is not known. It is sometimes used to treat people with Parkinson’s Disease as well.

you can read more about Amantadine here … MS Trust – Amantadine

I am still off work and my GP would like me to stay off until both new drugs have had a chance to kick in. I have very mixed views on this … some days I feel that I could manage work (at home of course) and on other days it feels like an impossibility. Being at home has given me lots of time to think and come to the realisation that I need to make some changes in the long term (whether I eventually have HSCT or not) …I have no idea yet, what those changes might be.

I have been continuing on my daily walk most days and some days this has been quite a struggle, as my left leg tends to drag and can often feel like a heavy, dead weight by the time I’ve walked a few hundred yards. A couple of weeks ago, I developed a severe muscular pain in the right side of my lower back. I spoke to my Occupational Therapist about this and after much discussion, she worked out what was causing this problem. Most of the time, I wear flat ankle boots when out and about, as I find these comfortable and benefit from the ankle support, especially on my left foot. When the warmer weather arrived, I started wearing flat lace up pumps and was aware that my left foot was dragging and would sometimes catch on the ground. The OT worked out that I was leaning slightly to the right in order to accommodate my dropping left foot and that this was the source of my back pain … how amazing is she?! So I have now been provided with a device to help lift my left foot, which should reduce tripping risk and take the pressure off my back.

It’s ugly and a little uncomfortable, but I’m going to persevere with it. If it keeps me mobile, who knows, I may grow to love it!

A combination of Tiger Balm, hot water bottle and gentle movement has healed my back pain, so I’m back on my feet again.

I hope you are all staying as safe and well as you possibly can 😘

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 ❤️

127 Bald Eagle

We may all be in lockdown, we may have our whole lives on hold and my treatment may be delayed … but the fundraising continues!

~~~ 🍺 ~~~

I’ve been meaning to write this post for several weeks now, as there is a lot I want to say, but I’m struggling to write at the moment, in fact struggling with a lot of things, so have been putting it off. I wanted to include an update on how things are going with my MS and my treatment plans, but that will have to wait until another day.

Thank you to all of you who have been in touch to see how I’m getting on …your support is very much appreciated. And I’m sorry for not getting back to everyone … I promise I will soon ❤️

~~~ 🍺 ~~~

On Friday 3rd April, my brother, Jimmy and my sister in law, Gill, planned to shave their heads (and Jimmy’s chin!) in order to raise funds and to show solidarity with my treatment related baldness in Russia. They also created a new beer, which was named Bald Eagle following a vote on their Twitter page 🦅

Before lockdown, a monthly beer tasting day took place at the brewery on the first Friday of each month – always a fun day, with tours of the brewery, beer to taste and buy, yummy food and live music. It was planned to combine the big head shave with the April tasting day and a local hairdresser was even roped in to do the honours with her clippers ✂️

Then Corona Virus hit and everything changed 🦠

By this time, Jimmy’s hair was rather overgrown and he decided to go ahead with a lockdown head shave in the back garden instead. Gill decided to hold on to her hair a little longer, so Zeb bravely stepped up to take her place, with Gill and Anna on clipping duties. To add a bit of an edge to the event, they decided to broadcast the big shave on Facebook live 🎥

Hair cut video 💇🏼 1

It took a few attempts and stylist swaps to remove all that hair and it all took a little longer than anticipated.

Hair cut video 💇🏼 2

By the end of the night, Jimmy and Zeb were looking fantastic!

Over the next few days, they found that having a mohican is much more high maintenance than it might seem, so eventually they went full skinhead instead.

Sponsorship money has been coming in and the big head shave has raised a fantastic £220 already. A massive thank you to our two handsome skinheads, Zeb and Jimmy and also to our super stylists, Anna and Gill 👨🏻‍🎤

If you would like to sponsor Zeb and Jimmy for their fantastic head shave, please visit our GoFundMe page and mention them in your comment ❤️

You may have noticed that Jimmy’s beard remains untouched. I wondered if he was keeping it in case he needed a second job in December, but he tells me he is going for a full shave when the brewery eventually reopens 🍻

Due to the pandemic, the brewery is no longer holding tasting days or delivering beer to pubs, but they are brewing a small amount of beer for home delivery to the local area, which is proving very popular. You can find out more about this on the Swan Brewery website here … Swan Brewery

~~~ 🍺 ~~~

I hope you’re all coping ok with this weird world in which we are now living and most importantly, keeping as safe as you can ❤️

Swan Brewery website

Swan Brewery on Facebook

Swan Brewery on Twitter

GoFundMe

126 Isolation day 18

I’ve been a bit unsure on whether to keep updating this blog at the moment. My treatment is on hold, life is on hold, in fact all our lives are on hold, the whole world is on hold. What strange times for us all.

I’m going to keep writing, because it really helps me to do so. I don’t mind at all if no one reads!

Well I’m now on day 18 of isolation and this time has been strange, interesting, unsettling, boring, frightening, calming and a million other things. The first few days were really tough. It really felt that I would never see my friends and family again, I was scared I wouldn’t cope being entirely in my own and I was worried about what will happen with my MS while waiting for the world to go back to normal.

Since then, I have managed to get myself into a new routine, to get on with work, to do a few jobs in the house and to mostly stay positive. There are times when it’s really hard. My little house can feel huge and empty and at other times, small and oppressive. Sometimes I feel desperately lost and alone, but powerless to do anything about it. I have lovely friends and family in my life and appreciate every single one of them. I have numerous people I could call or text or message but somehow I don’t – this is something I am working on. Most of the time I feel fairly upbeat, positive and optimistic. I feel grateful for what I have … my lovely home, my crazy cats, a job I love, my fantastic workmates and most of all, my friends and family. But sometimes the misery grabs me. I’ve always been like this but have always had options to go out do something, make plans, distract myself …it’s not easy to do that when you’re stuck inside your own four walls with only cats for company!

This is so true. Right now I am safe and I feel luck to be safe. I am able to carry on working from home and I have daily remote contact with lots of people. I know I am in a much better position than many are at the moment. I am only leaving the house for a daily walk in the local area and Niamh is doing my food shopping for me. I can manage like this for as long as I need to.

I am trying to push myself to walk every day, even when I don’t really feel like it and I’m finding that it really does lift my spirits. I have enjoyed spotting children’s pictures in windows and noticing all the good things about where I live.

I am lucky to live close to a beautiful park and am visiting when I can manage it.

I realise that we are all going through a period of adjustment at the moment and we are all still processing everything we are dealing with and the rapidly changing world in which we live. This will be taking a toll on us, even on a subconscious level. When we are unsettled by change, it’s the stability of relationships that gets us through. But relationships don’t quite feel right from a distance and that’s why I miss people so much and feel a bit out of kilter.

Apologies to anyone I have accidentally left out!

So, how am I managing my time?

Well I have discovered I feel much better when I stick to some sort of routine, so I continue to get up at my usual time and go to bed at my usual time. I am working from home 4 days a week, which is helping to keep me grounded and gives a sense of purpose. On the other days, I’m doing the usual housework, talking to friends and family, talking to my cats, trying a bit of yoga and meditation and making lists on all sorts of topics. There are a few jobs at home, like putting pictures up, that I haven’t got round to doing and I’m telling myself how lucky I am to have all this spare time To get these things done …I just need to muster up the motivation to actually do it!

If anyone has any top tips for coping with isolation, suggestions for new hobbies or activities I could try or ideas on how I can use this time to better myself, please send them my way.

Apologies to anyone offended by swearing 😊

I also have an important decision to make …do I cut my fringe or let it grow?!

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!)

124 COVID – 19

Everyone else is talking about it, so I thought I would too!

Firstly, I want to say that I am writing this post to help me to gather my thoughts on the current pandemic situation and share them with you. I am not giving advice on how each person should respond, but telling you how I am responding right now. Obviously, as we are in a fast moving situation, my response may well change in the coming days, weeks and months.

The only advice I would give to others is to read and follow the most up to date advice and guidance and to judge for yourself what measures you should be taking to keep yourself and others safe. Please bear in mind that the risk could be greater for family members, friends or strangers with whom you have contact, due to their age or health situation – I believe we all have some responsibility not only for ourselves, but for others around us.

—- 🦠🦠🦠 —-

As you are aware, I should have been travelling to Russia today, to begin my HSCT, but this has been postponed due to the spread of the COVID-19 virus. HSCT seriously depletes the immune system and recovery can take several months – clearly now is not the right time to deliberately lower my immune system.

I have been allocated a new date of 28th July and will be following developments closely as we move closer to that date. At the moment I’m not feeling hopeful that it will be safe to proceed in July.

At the moment I am not in work and I now have a decision to make about when or whether to go back. I am hoping to have a conversation with my GP and make a decision on that this week. I have appointments with both my neurologist and MS Nurse in April.

—- 🦠🦠🦠 —-

As a person with MS, I am not at particularly greater risk due to the virus. I don’t think I’m more likely to catch it than anyone else, or more likely to die if it do. My lung function is fine, I don’t smoke and I’m otherwise reasonably healthy. I’m a little overweight and not as physically active as I’d like to be.

It is clear, however, that my immune system is faulty. I have two autoimmune diseases – Multiple Sclerosis and Hashimoto’s Disease (autoimmune thyroid disease). I also have a higher than normal presence of Antinuclear Antibodies in the blood – this indicates a tendency for the immune system to attack the body’s own healthy tissue (via cell nuclei). My biggest worry about catching the virus is that it could trigger an Ms relapse, trigger further thyroid issues or trigger another autoimmune response. I am therefore taking steps to reduce the risk of me being coming infected, which therefor also adds protection to those I am in contact with.

The MS Trust is providing regular guidance updates for people with MS. Here is their most recent update …

MS Trust – Coronavirus COVID-19 and multiple sclerosis – update 13 March

—- 🦠🦠🦠 —-

So, these are the steps I’m taking now …

🧼 I have increased hand washing over the last couple of weeks. I am washing my hands when coming home, after opening the post and several additional times each day (as well as the usual hand wash after using the toilet or before preparing or eating food). I have stopped wearing rings, watches and bracelets.

🙏🏻 I carry hand sanitising gel with me and use it often when out, especially after touching anything (including menus and cash, both of which are filthy!)

🦠 I am being very careful about what I touch when I’m out. This is a difficult one for me, as I need to use handrails etc to stay upright! I am now wiping shopping trolleys handles before touching them.

👭 I am not “self isolating” but I am limiting social contact. I am mostly staying at home, but still doing my own shopping and having contact with family and close friends who are well.

📱 I am keeping in daily contact with friends, family and others online – I am worried about us all feeling isolated.

🥾 Shoes and coats will stay in the room nearest the front door and I am frequently wiping my handbag (inside and out).

🤦🏼‍♀️ I am trying really hard not to touch my eyes, nose and mouth – why is this so bloomin difficult?!

🌀 I am using disinfectant wipes daily to wipe my walking stick handle, door handles, light switches, the stair rail, door frames (I hold on to these for balance at home), window handles, blind cords, phone, iPad and TV remote controls.

🚗 I wipe my keys, steering wheel, car door handles and gear stick often.

🖼 I am opening windows and letting in fresh air. I haven’t seen anyone advising this but I personally thing a well ventilated home is healthier!

💊 I haven’t engaged with “panic buying” but have enough in my freezer and cupboards to keep me going for a couple of weeks if I have to. I have made sure I have a few weeks of my regular meds at home and have bought some additional packs of paracetamol.

I may well add to this list in light of new advice or as I think of further steps I can take to protect myself and others.

—- 🦠🦠🦠 —-

I am feeling quite anxious about myself, about my family and friends and others. Because of my area of work, I know that there are many children who will be in danger if schools close and they have long periods holed up at home. I know there will be adults in danger because of this too. I know we are all worried about coping financially and especially about the self employed, small businesses, those on exploitative contracts and those not eligible for sick pay. I hope when this is all over, we can learn as a society, to make things a little fairer and safer for everyone.

I remain concerned about our government’s response to the threat of COVID-19, which is not in line with World Health Organisation, particularly in relation to testing and tracing contacts …

Countries should find and test every case of coronavirus to stop the pandemic, the World Health Organisation said a day after the UK announced that only the most seriously ill will be tested.

“You can’t fight a virus if you don’t know where it is,” the WHO’s director general, Dr Tedros Adhanom Ghebreyesus, said at a briefing on Friday. “Find, isolate, test and treat every case to break the chains of Covid transmission. Every case we find and treat limits the expansion of the disease.”

The Guardian – WHO urges countries to ‘track and trace’ every Covid-19 case (13.03.20)

123 Treatment delay

I had a blog post prepared to publish this morning, telling you all about the arrival of my visa, rearranging flights, sending payment and getting everything ready.

Unfortunately there has been a change of plan …
This morning I received an email from the hospital to inform me that the Russian Health Minister has put new restrictions in place for all travellers arriving in Russia, due to the corona virus. Anyone arriving in the country must immediately begin two weeks of self isolation and the hospital would be unable to admit me until this was completed, followed by a medical examination. I’m not sure I could manage two weeks locked in a hotel room on my own.

This arrangement would also mean me being away from home for six weeks in total and mean that I would be travelling home at the end of April. In these uncertain times, this just feels too far away for me. Who knows how much worse the corona virus problem will be by then?

Obviously I have been watching developments closely over the last few weeks. I have increased hand washing and tried to reduce how often I touch my face (how difficult is this??!).

I haven’t succumbed to panic buying (well, only of creme eggs!) but have worried about the lack of certain items in the shops, especially hand sanitiser and soap. I have mostly remained unconcerned until the last few days.

Today I have noticed an increase in very concerning facts in the reporting on the corona virus. Many countries are now putting restriction on travel, public gatherings are being cancelled and even school closures in some places. The UK government has decided we are moving from the “Containment” phase to the “Delay” phase of our response. I have come to accept that now is not a good time to have a suppressed immune system.

This is the current UK advice … BBC link

This evening I have heard that hospitals in the UK have suspended HSCT treatment for MS and for cancer (other than in life or death situations) for the time being. The MS Society has issued this advice …

“HSCT is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells. This treatment greatly hampers your immune system for a period of time and you and your neurologist or healthcare professional should consider delaying this treatment.”

MS Society link

Today has been a really tough day. I don’t think I realised just how much all the mental preparations have taken out of me and also of my family. We are crushed …but not giving up.

I also realise that there are lots of other people affected by this and who are having to make difficult decisions, many of them in a much worse situation than me.

As far as future treatment goes, I’m in a good position, in that the hospital has already accepted me for treatment, the funds are in place and I’m ready to go as soon as the situation improves. In the meantime, I’m going to focus on staying well, washing my hands, not touching my face and some “social distancing”.

I have a lot to sort out. I’ve no idea if I can get any money back from the flights I have booked and I need to see my own doctor to talk about how I manage for now. I also need to work on my stressed head!

122 Tea Party thanks

What an amazing afternoon we had on Saturday! Thank you to everyone who contributed or attended.

It was a busy few days on the run up to the event, finalising numbers and ensuring we had everything we needed. Lots of people donated bottle bags and bottles or lent us cake stands …many thanks. If your cake stand doesn’t come back to you soon, please let us know and we’ll make sure it does 🍰

St Mark’s Church allowed us to use the church hall at low cost and arranged to give us the key on the afternoon. Many thanks to Ruth and St Mark’s for supporting us. It took a little over an hour for our hardworking team to get the room set up and ready for guests.

Niamh, Connor, Sophie, Callum, Glenda, Sharon, Lauren and Karen did an amazing job to get everything in place to welcome 80 guests for afternoon tea. Thank you to you all 😘

Sharon was our “creative director” and prepared the lovely tea shop style table decorations. Thank you so much Sharon 😘

We also had a glass of fizz available to those who wanted it 🥂

Meanwhile Heather and Nick has already put in several hours preparing a delicious afternoon tea, with a range of dietary needs catered for. They continued their hard work in the hall kitchen, including arranging all our many borrowed cake stands! Thank you so much Heather and Nick …you guys are awesome! 😘

A couple of friends offered to run stalls at the tea party …thank you to Sheila, Emily, Gemma and Gemma’s lovely mum (apologies, I didn’t get your name!). Thank you also to Beth who came along to help. Both stalls made some good sales and added funds to our total 😘

It was soon 3.30 and our guests started to arrive. It was so lovely to see so many friends from all sorts of areas of my life and friends of my children too. I really am touched that you all wanted to come and support me.

I was planning to do some sort of speech during the tea party, but was a little bit of an emotional wreck, so decided against it! Some of this post has been written using the notes for my speech.

I want to thank my sister, Glenda, for coming to stay for the weekend, helping on the day, bringing her calmness and providing me with lots of support 😘

A big thank you, also to my brother, Jimmy and his family, Gill, Anna and Zeb, who travelled from Herefordshire to help and to support the event. It was lovely to see you guys, though not for long enough this visit! 😘

My lovely friend, Karen, was a fantastic help on the day in getting everything ready and making sure everyone got the right food. She also surprised me with a tree of messages which guests added to throughout the afternoon. The messages are now in an envelope to take with me and I will read them at some point when I’m in hospital. Thank you so much Karen 😘

Thank you to each and every one of you who came along on the day, the kind people who donated, despite being unable to attend and also to the friends who planned to come but decided to stay away, when they felt a little unwell on the day, just in case I caught something 😘

The afternoon tea was delicious and I received so many compliments to send to the chefs. Niamh and Sophie were a fantastic team, making sure everyone was fed and with the right food! Thank you all of you 😘

We ran a bottle lucky dip stall, which was an amazing success and used only donated bottle bags and bottles. Connor and his great friend Finley, were in charge …thank you both 😘

We perhaps should have thought about making this a little more child friendly, but I’m sure there were some happy grown ups who were able to enjoy the prizes won by their kids!

It was a very emotional day for me. I initially thought I’d avoid hand shakes, hugs and kisses in order to protect myself …as you probably noticed, that soon when out the window! I was touched by your kind words, messages and cards and really did feel lifted by all your encouragement.

There were a couple of noted absences …

My dear friend Anne who has been an amazing support over the last couple of years, was needed somewhere else and was very much missed. Thank you to her family members who still came along 😘

Another friend, Glynis, was unable to make it and had the best ever excuse … on Wednesday after several years of illness and regular dialysis, she received a kidney transplant. She is recovering well, but not quite well enough for tea and cake just yet! Get well soon, Glynis 😘

Clearing up was thankfully much quicker than setting up and we were soon on our way home. It has taken me a couple of days to recover (which is why this update wasn’t posted sooner!). Thankfully, Glenda is a maths wiz and was able to count the cash and do the sums. Amazingly we made a grand total of …

How amazing! Thank you to everyone mentioned above, everyone who came along, donated or supported us in any way. I really am blessed 🙏🏻

Obviously I am now up to my ears in finalising travel plans, packing and preparing. There has been a lot going on with that too, but I’ll save it for another post.

GoFundMe