Vicky

103 We have made a decision!

It has been a stressful and emotional few weeks for me, which have come to a head this week and led me to make a decision.

As you know, I have had the HSCT clinic in Russia on hold whilst pursuing the possibility of being treated in Sheffield, here in the UK. Today we made the decision to rebook Russia and start fundraising again. Lots of things have contributed to this decision…

On Thursday I had a meeting with a psychologist who works with my team. Amongst other things, she has occasional meetings with us to advise about difficult cases and talk about anything that’s bothering us. She is also a friend and knows about my health situation. I’ve been struggling the last few weeks, feeling very low, physically and mentally. Anyway, we spent most of our time talking about it all. It was so good to explain it all in words and acknowledge how difficult I have found this situation. She was so good at helping me to focus on what’s important and what I need to do. I think one of the reasons I have felt so down is that it feels everything is out of my control and all this waiting is really stressful … and I don’t even know what I’m waiting for!

That evening I fell at home and really hurt my foot/ankle. My leg gave way when I stood up and my foot kind of folded awkwardly under me. It’s the first time I’ve had a bad fall at home and it really scared me (and terrified the cat!)! It reinforced the realisation that I need to DO something now, before I get any worse. If I wait for the Sheffield option to run its course, another 6 … 12 months or more could go by and it could still be a NO.

On Friday I received a letter from Professor Sharrak’s registrar, regarding the outcome of my MRI scan, which took place back in June. It describes numerous lesions in various parts of my brain, but no active inflammation. I’m not sure if any of the lesions are new, as I don’t think they’ve been able to compare to my last scan (which was at a different hospital). Its worth mentioning that 4 years ago, I had no brain lesions, then some “tiny white spots” were found and these then increased in size and number between each scan. The letter is really unhelpful! And no change to my appointment (5th Feb).

I met with my lovely friend Anne on Friday afternoon and talked to her about everything – she told me how hard it is to see me gradually getting worse and how worried she is about me. She felt that no one one would criticise me for planning to go to Russia as soon as possible, having a definite date to work towards and doing all I can to give myself the best chance of getting better.

I spent much of Saturday with my children, Connor and Niamh. We went for a walk and then for lunch. They are both worried by waiting any longer and want me to be treated ASAP. Niamh has been terribly upset since hearing my appointment is in February and we all agreed we should focus on Russia and get me there as soon as possible.

So that’s where I’m up to!

I can’t tell you how much better I feel to have made this decision and to have the support of my family and friends. I am waiting for a response from the clinic with a date to work towards and will plan from there.

What do you all think?

We already have some fundraising plans brewing and some old ones to resurrect. We are open to ideas, offers of support or anything else that might help …please get in touch with one of us if you have any suggestions.

I want to say a special thank you to Sally, Anne, Connor and Niamh for helping me to get to this point this week and also to family, friends and colleagues for all your ongoing support 💚

GoFundMe

102 Multiple Sclerosis and work

Having MS is very expensive. I live in the UK and am lucky that most health services are free (paid for via our National Insurance and Income Tax contributions). But there are lots of additional hidden costs for those with a chronic progressive illness.

In January, I felt forced to reduce my working hours from 5 days to 4 and of course, took a corresponding drop in my income. This was the right thing to do and I’m grateful that my employer was able to support my request. But nine months on, I am struggling. I continue to find work an exhausting challenge and now I’m on a lower income, I’m worrying more about money too. I’d really like to reduce to 3 days, but definitely can’t afford to. Holidays, weekends away and regular evenings out are now a distant memory. When I’m not at work, I spend most of my time at home, on my own, recovering. How do people cope with this gradual decline, not just in their health, but also in their quality of life? I just don’t know how they do it!

There is very little financial help out there for people who find themselves unable to work because of their deteriorating health. I have recently applied for PIP (Personal Independence Payment) and now face the battle of fighting my case and trying to show how sick I am to government contracted assessors, employed by ATOS or Capita, with no knowledge or understanding of my condition. For some reason, this person’s view will be more important than my own accounts of life experience and the expert opinions of my GP, neurologist and MS Nurse. There are various levels of PIP and I’m just hoping I will receive enough to keep me afloat for now – it certainly won’t be enough to allow me to reduce my hours again.

I intend to write a longer blog post on my experience of the PIP process at a later date.

When you are diagnosed with MS, you are advised to reduce the stressors in your life, then they put you through a gruelling, time consuming and humiliating process in order to allow you to bring home enough to just about scrape by. When all of that and the grief of what you are losing every day really gets to you, they put you on antidepressants. There must be a better way.

I really want to carry on working for as long as I can. I love my job – I am a teacher but currently work for my local authority for a small team who support and champion the education of children who are in care. It is challenging, sometimes distressing, often rewarding work, with a high level of responsibility. I work with an amazing team of people, who are also my friends and I am fully aware of the support and benefits available to me as a public sector employee (although the building I work in is not disability friendly by any measure). There is evidence that, where possible, continuing to work is good for our mental and physical health. Maintaining routines, contributing to society, using and learning skills and connecting with others on a regular basis definitely contributes to wellbeing.

And yet the system doesn’t encourage those with chronic conditions to stay in work. Yes, there is entitlement to reasonable adjustments, help with getting to and from work and other schemes (such as PIP), however, there is nothing to replace lost income when you can no longer manage full time hours. My GP has already mentioned medical retirement …but I don’t want to retire! I want to work!

This article from healthline.com discusses some of the issues that MSers, with deteriorating health, face in trying to keep working.

“Data suggests that lost work productivity due to MS or the need to retire early is the largest single factor contributing to nonmedical costs of MS.

Loss of income is also associated with a corresponding increase in disability claims for governmental programs and insurance providers.

Nonmedical costs include short-term and long-term absence from work, reduced work hours, changing the type of work to a less physically challenging and stressful nature (usually at lower pay), and early retirement.

Although the costs vary by person, these factors result in reduced productivity and substantial income loss for those with MS.”

I’m going to do some more research on this topic, but in the meantime, here is my overall conclusion …

100 Another whinging blog post …

If you’re someone who thinks this blog is nothing but self indulgent ramblings, you may want to skip this post!

I have no good news to tell you, as my pursuit of HSCT in the UK has hit a serious set back this week. I phoned the appointments team in Sheffield (yet again) and was told that I have finally been allocated an appointment … on 5th February!!

I mentioned that Professor Sharrack had wanted to see me before 20th September and he confirmed that was the case, but that 5th February is the next available appointment.

Having already waited so long, this was really tough news to take. I appreciate fully that our health services are under immense pressure and that demand for this treatment is increasing, as more and more people are hearing about it. The situation is nobody’s fault (well, apart from the politicians who have underfunded the health service for years), but it’s still very upsetting.

I have spent the last couple of days talking with family and friends, trying to work out how best to proceed. Every day I am getting a little bit worse …I can’t keep delaying and delaying.

I have emailed Professor Sharrack to raise my concern, explain how this is affecting me and to ask if he can do anything to help. I suspect he has little to do with appointment allocation, so probably doesn’t know what the situation is. So far he has not replied.

I have also initiated a GDPR request to obtain a copy of my July scan report.

From next week I will be phoning the appointments team on a regular basis to see if there have been any cancellations (I don’t hold out much hope for this …if you’ve fought like mad to get an appointment at the HSCT Clinic, you are unlikely to cancel it).

If we can’t get some clear answers in the next few weeks then I will be back in touch with the clinic in Moscow and relaunching my fundraising campaign. I must admit that at first I couldn’t really face doing this – it really is such hard work! But I have been reassured by family and friends that they will help as much as they can and some have come up with a few fabulous fundraising ideas already!

It has been a tough week for all of us but I’m feeling a little calmer now. The road to HSCT has been long and arduous, with many unexpected bumps along the way …but I WILL get there in the end.

Thank you to everyone who has supported me over the last few days …you really are amazing 😘

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!

GoFundMe

Facebook

Instagram @anothermswarrior

Twitter @AnotherMSWarrio

98 Dealing with emotions

Something that isn’t talked about often, is the emotional strain of living with a chronic progressive disease, such as MS. I think one of the reasons we don’t talk about it, is that it is so very hard to describe and explain how it feels, in a way that other people can understand and because, just like physical symptoms, feelings aren’t static and can change from day to day, or even hour to hour.

Depression is a very common symptom for people with MS. Some of this is attributed to the changes taking place in the brain due to the disease and some is likely to be linked to the constant ongoing loss and grief that we feel for our old selves and worry about the future.

Here is what the MS Trust has to say about depression in MS …

“Around half of all people with multiple sclerosis will experience depression at some time in their life. This is three times higher than for the general population. Part of this extra risk comes from MS damaging nerves in the brain, and part comes from the experience of living with a complex disease.

People with MS are likely to experience chronic depression, with symptoms lasting a long time, even several years. In MS, depression is unlikely to go away on its own, due to the underlying lesions, but it is very treatable, so get help as soon as you can.”

The MS Society website also has an informative section on Mental Health, Mood, Depression and Stress.

Unfortunately, it is my experience that neurologists rarely ask any questions about emotional well-being. Thankfully, I have an excellent GP, who has been very supportive in this area.

The progression of MS is gradual and is such that changes from one week to the next are not obvious. I make small adjustments or make decisions based on the here and now, not realising that I am slowly but surely losing small pieces of my life. I’m having a reflective day today and realise that without being fully aware of it, I have stopped going to gigs (I love live music), I’ve stopped going into town for cocktails, I’ve stopped initiating get together with friends, I’ve stopped having nights out in the pub, I’ve stopped spotting interesting events online or when out and about (because I’m rarely out and about) and getting in touch with friends to see who’d like to come with me, I’ve stopped going for weekends away or visiting new places, I’ve stopped going for long walks … slowly but surely I am letting go of many of the things in life that I enjoy the most. My dreams of travel, of doing a Masters, having adventures, becoming involved in local politics, taking up photography have all but faded away. This has been a rather painful realisation for me.

There is a feeling of isolation attached to having a debilitating illness like MS …not just because of all the social situations I miss out on, but because I spend a lot of time living in my head, worrying and wondering about what comes next, grieving what I have lost and not feeling able to talk openly about these feelings. This isn’t anyone’s fault …I really do have wonderfully supportive family, friends and colleagues around me …it’s just easier to keep it all in and maybe occasionally use this blog to let it all out?!

I have spent much of this weekend making notes in preparation for completing the dreaded PIP form. This has forced me to focus on all the household tasks that I can no longer do or am struggling with … way to make me feel a failure, DWP!

So all of the above has led to me having a rather weepy and depressing weekend.

There are many online support groups, forums and Facebook groups where I can talk to fellow MSers, ask questions, offload and also provide support to others. If you have MS, or any other medical condition for that matter, I would urge you to seek out and join one or some of these groups. We can learn so much from each other’s experiences and it can take away some of those feelings of isolation, when you find others are dealing with the same concerns.

If anyone reading this is worried about me …please don’t! I need to do this from time to time …I need to acknowledge my negative feelings, instead of hiding them away. I am already feeling more positive this evening and actually looking forward to work tomorrow!

98 The wait goes on

This may be my shortest blogpost ever!

I’ve had various friends and family asking about news from Sheffield, so thought I’d do a quick post to report that I’ve heard nothing at all!

I’ve had a really busy couple of weeks, so haven’t had time to phone the hospital again. My life becomes a little quieter from Thursday so hopefully I’ll be able to do it then.

I am in contact with a fellow MS Warrior online, who had his first appointment with Professor Sharrack on the same day as me. He has been allocated a November follow up appointment (despite also being told it would be mid August). I have no idea what to read into this (if anything at all?!).

I’m trying not to worry to much until I hear something definite. When you have a chronic health condition, you seem to spend so much of your life in limbo, waiting for test results, appointment dates and treatment decisions. I’m not very good at being patient, but doing my best!

A small personal step forward I have made is to have my hair cut in a shorter style. As HSCT involves chemotherapy, it is almost certain that I will lose my hair. Many of those going for treatment adopt a shorter hair styleto help prepare themselves for the shock! Anyway, here is the result …

Thank you so much Shelley at Essence Hair Studio

97 Still waiting

Well another week has gone by and still no Sheffield appointment! I have anxiously awaited the post each day, but only bills and junk mail seem to have landed on my doormat this week.

I have tried emailing Professor Sharrack’s secretary but no reply there either, despite me signing a consent form to say I was happy with email communication. Perhaps emailing them the consent form doesn’t count?!

On Monday, I phoned the professor’s secretary and she was able to confirm that my scan report has arrived, but I’ve not yet been allocated an appointment. She was unable tell me what the report says, but promised to give him a nudge about my appointment.

… so the wait continues.

A while ago I mentioned that I was making a concerted effort to lose some weight. I’ve always struggled with my weight, particularly since hitting a certain age and even more so now my mobility has decreased. I’m definitely a person who is inclined to comfort eat and the emotional challenges of this disease have certainly left me in need of comfort.

Anyway, a couple of months ago I decided the time had come to take drastic action! I decided I needed some serious help this time (I have done LOTS of diets) and after some research, chose the Cambridge One2One Diet. This involves consuming meal replacement smoothies, shakes and bars and a weekly weigh in and chat with a consultant, who has helped to keep me on track. Thank you so much Julia. I am still half a stone from my target weight and a “normal” BMI but I’m feeling so pleased with my progress that I thought I’d share it with you. These two photos are taken exactly a year (and 35lbs) apart.

As well as wanting to look and feel better and improve my general health, there is another reason why reaching a healthy weight is important for me at the moment. HSCT involves the use of high dose chemotherapy, which partly destroys the immune system. Chemotherapy is hard on the body, in particular on the liver and kidneys and the dosage for each patient is calibrated to their body weight. So by reducing my weight, I am reducing the dosage of chemotherapy I will need.

If you’d like to know more about the Cambridge One2One Diet, please visit their website by following this link …

Cambridge One2One Diet

If you live in Stockport and would like to know more, please give me a shout and I’ll put you in touch with Julia.

96 MS and HSCT online

Well it’s a week into the school holidays and I’m finally starting to unwind a little. I have decided not to book a holiday or even a trip to the IoM and to just stay home, relax, see friends and get a few jobs done.

My garden is small and I usually manage it myself, but the recent warm weather combined with heavy rain fall, means that everything has grown madly over the last few weeks and it’s is now a bit beyond me!

I am still anxiously awaiting news from the hospital in Sheffield. I am expecting an appointment in “mid-August” but haven’t been informed of one yet. It’s very hard to plan anything at all, as I want to make sure I’m available for the appointment.

——————————————

I am one of those people who needs to learn as much as I can about things that affect me, so have been reading and researching all things Multiple Sclerosis since before I was formally diagnosed. It was through doing this that I came across a BBC news report on the MS MIST (HSCT) trial, leading to further research on whether it could be the treatment for me and how I could access it.

In case anyone else is starting this journey or for anyone who is interested, here are some of the sources of information and support I have used.

MS Society

In the UK, there are several organisations providing information and support for those with MS, their families and friends. Perhaps the most well known of these is the MS Society. The MS Society provides information via their website, has local support groups all over the country, funds research and campaigns on behalf of MSers. The MS Societies in various countries are all linked and receive some of their funding from major drug companies. The information they provide about MS is likely to be very reliable, however, there is concern amongst some MSers that that the Societies may be influenced by their pharmaceutical backers and that people with MS may not always be their first priority. Certainly, it is very evident that the MS Societies do not promote HSCT and some of the information they provide on this is both inaccurate and overly negative.

MS Trust

The MS Trust is another large UK organisation providing information and support for those impacted by MS. The information on their website is reliable and easy to understand and I have also found their telephone helpline to be useful.

MS-UK

MS UK is a slightly smaller UK organisation, with a useful website and helpline.

Shift.ms

Shift MS is a patient driven world wide organisation providing an online community of fellow MSers, where all aspects of the disease, treatments and everyday life are discussed.

All of the above have social media presence on Twitter, Facebook and elsewhere and provide news and commentary on new developments in managing MS, living with disability, entitlement to benefits etc.

When researching HSCT, it is not easy to find reliable information and patient experience. The most reliable and supportive resource for me has been the Facebook groups, which are run by HSCT patients.

There is a general world wide HSCT group … HSCT Hematopoietic Stem Cell Transplant – MS & Autoimmune Diseases (Facebook group)

And a very helpful UK group – UK HSCT for MS and Autoimmune Diseases (Facebook group) – where UK citizens can get advice and chat with others about accessing treatment here or abroad. There are further groups for the clinics in Russia and Mexico (as well as some others).

AIMS (Autoimmune and Multiple Sclerosis)

There is also a new UK charity, the world’s first that supports people with MS and other autoimmune diseases to access HSCT. The charity was set up by some HSCT patients and their partners and had its official launch last year. They are mainly operating via their Facebook and Twitter pages at the moment and have recently launched their first invitation to those pursuing HSCT to apply for financial support with travel expenses.

These have not been my only sources of information … I have also read numerous research reports and neurology opinion pieces, which have all helped me to feel confident in my decision to pursue HSCT.

A couple of my fellow HSCT UK Facebook group members have recently had their stories reported in the national media.

Colette and Lucy were both successfully treated by the team in Sheffield. You can read more about their stories here … Colette and Lucy.

95 HSCT in the news

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

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

So, to HSCT in the news …

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

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

Congratulations Professor Sharrack, Professor Snowden and the rest of the Transplant team 🏆🥂🥇

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

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

————————————

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

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

Stephensons

————————————

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

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

94 The big loud tunnel monster

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

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

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

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

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

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

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

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

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

Here are my MRI scan top tips …

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

————————————————-

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

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

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