Sheffield – Another MS Warrior

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 ?

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 ?

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!)

112 Happy Twixmas!

Hello everyone and happy twixmas! What a strange time of year this is … it seems no one knows what date it is, what day it is or what time it is! What shall I eat and when? Shall I leave the house today or have another day snuggled up with the cat, watching rubbish on the telly?

The last few weeks have been filled with their usual ups and downs, so I’m really quite glad of this quiet time to think and reflect and to process everything that’s happened this year.

A couple of weeks ago, I received an unexpected phone call from Professor Sharrack’s secretary, asking me to come for an appointment just two days later. The original date for my follow up appointment was in early February, so I was really pleased that it had been brought forward. Niamh kindly arranged to take the morning off work so that she could come with me and also offered to drive me there, which was a big help. So off we went across a rather foggy Snake Pass, ready for my appointment.

I’m not going to go into great detail about the appointment here, but a summary would be to say that he didn’t say “no” but he also didn’t say “yes”!

Things are all a bit uncertain and he is unsure whether I meet his criteria for treatment. Amongst other things, he said I would likely meet the criteria for treatment by the London HSCT team and would therefore definitely meet the criteria for private treatment in London! Unfortunately, I don’t have time to explore the London NHS option or the funds to consider the private route (£80K+), so neither of those are an option for me.

Prof S also thinks I have Progressive MS with Superimposed Relapses, rather than Relapsing Remitting MS …I’m not sure that I understand the significance of this, so more reading and research ahead for me!

Anyway, I am to have a further MRI scan in Sheffield in January, which Prof S will then compare with the last one (June 2019), before he makes a final decision.

It was so good having Niamh with me to help with the practicalities of getting there, provide moral support and to discuss things with afterwards. I’ve had so many medical appointments over the last few years and it was good to get the views of someone who is new to it all.

We were rather deflated on our journey home. We had been sure we would have a final answer at last and be able to fully focus on either Sheffield or Moscow, rather than this weird limbo we have been in for too long. Having reflected on this further, I feel that treatment in Sheffield is now outside my reach and I need to spend the next few weeks focussing on getting to Moscow. I’m booked to go on 16th March, which is just 11 weeks away!!!

So, let’s get on with fundraising!

At the start of December, we appealed for people to donate to the fund instead of buying Christmas presents and/or cards. We were hoping to raise a few hundred pounds and to hit the £20K mark but your kindness and generosity has been astounding and this appeal has raised an amazing £1,430 …thank you so much to everyone who responded ???

Our grand total now stands at …

We are hoping to squeeze in a couple of fundraising events before March and to do this we will need your help. Do you have any used bottle gift bags you would like to donate? These can be Christmas or any theme. If so, please let one of us know.

If you have any unwanted Christmas gifts we could sell or use as a prize, please also get in touch …we would be very grateful for anything you can give.

Information on fundraisers to follow (and we are always open to new ideas and suggestions too!)

I hope you all had a wonderful happy Christmas and wish you all the best for 2020. Many thanks for all your ongoing support ?

GoFundMe

110 Ups and downs

Well it’s been another week of ups and downs here at Warrior Towers. After a week off work, feeling physically and mentally low, I managed to pick myself up in time to get myself to work on Monday. It felt good to be there …I work with the most amazing team of kind and supportive people and I love the work we do (supporting children in care to achieve in education).

Unfortunately, by lunch time, I was struggling. The pain in my right hip, both thighs and left lower leg got worse and worse through the day and I found the noise and lights in our busy open plan office to be a challenge to my ears and eyes.

By the afternoon, I was struggling to follow conversations and to process information. “Brain fog” is a real and frightening symptom commonly experienced by those with MS. The brain is working so hard to deal with the attacks and damage to the central nervous system, that there is little left to deal with the extra challenges of life …or of work.

I went home on Monday and cried. Never have I felt such a failure …and a fraud. I care so much about the children I work with, but they are so important and deserve the very best support, not someone who isn’t functioning properly.

I decided not to go to work on Tuesday. My GP has provided a sick note, which has gone some way to alleviate my guilt for not being at work.

Like all of those working in the public sector, we are over stretched and under staffed. I know that me being off work will add additional strain on my colleagues, at a time that’s already challenging, but I don’t feel I can be at work when I’m not able to do my best, or at least do a good enough job. Thank you to my wonderful team for everything ?

I have spent the week mostly resting and not doing much at all. The trouble with being off work is that it gives you too much thinking time …not good for an over thinker like me! I have managed to relax a little and to live in the moment rather than worrying too much. I use a meditation app called Calm, which has really helped and I’m starting to feel a little more level.

On Wednesday I went to a lovely pre-Christmas event at Seed, my local ethical beauty salon and returned the next day to have my nails Christmasified! Small things, but both lifted my spirits immensely. Today I met my lovely friend, Anne for lunch and girl friend therapy, so tonight I’m ending the week feeling more positive than I did at the start.

A few other things have happened this week …I discovered I have a routine appointment with my usual neurologist on Monday …lucky timing for once. I’ve had telephone contact with Professor Sharrack’s secretary to try to get my appointment with him moved forward (from February) …no answer on that one yet. I also have an appointment with Occupational Health next week, to talk about work and the support I will need in the future. I really want to continue working …I love my job and my team, I believe in what we do and when I’m well, I believe I do a good job. With all these phone calls and appointments, being unwell is becoming a full time job!

Today, I received a letter from the DWP. I knew this was likely to be the outcome of my application for PIP (Personal Independence Payment. With sweaty, shaky hands, I opened the envelope, fully expecting my application to be rejected, only to find I am to be granted lower level PIP! I am delighted with this outcome. For those of us with additional difficulties, life becomes more and more challenging and it also becomes more and more expensive. I have had to reduce my working hours because of MS and this payment goes a (very) little way towards addressing the shortfall. So the week has ended on a positive note and I’m very grateful.

~~ ?~~

Some of you may know that my brother, Jimmy and his wife, Gill, opened their own brewery a few years ago. Since then, Swan Brewery has gone from strength to strength and they already have a number of awards under their belt.

The brewery holds regular and popular open days and Jimmy and Gill have decided that the focus of one of these days will be for them both to have their heads shaved to raise money for my treatment fund! Jimmy is currently sporting a rather impressive beard and this too will be shaved off! To commemorate this occasion, they will also be launching an exclusive new beer …they have been running a customer vote on Facebook this week to choose the name of the beer …head over to their Facebook page to find out the winning name.

This Sunday we have our stall at the Merry Little Christmas Fair at Stockport Vintage Village. Thank you so much to Sheila and Alan for their support. I will be there for an hour or two, if I am up to it and would love to see you there if you can make it.

The lovely ladies at Seed Beauty are pulling a plan together to climb mount Snowden to raise money towards our treatment fund. They have been persuaded to delay this until spring, when the weather will hopefully be more favourable. More info on this at a later date.

Thank you to everyone who has responded to our Christmas card appeal – making a donation instead of buying Christmas cards …I am touched by your kindness.

We have a few other fundraising plans in the pipeline, but will let you know about these once we have more detail.

Read more about MS “Brain Fog” on the MS Trust website here … MS Trust

you can find out more about the Calm app on their website … Calm They are also on social media.

You can find out more about Seed Beauty on their Facebook page (Seed – Beauty Therapy) or Instagram (@seed_beauty_158).

Apply for PIP here … PIP (Please seek support with this. I plan to write a more detailed post on the whole process at a later date).

Find out more about Swan Brewery here … Swan Brewery (or on their Facebook page).

Full details of Stockport Vintage Village can be found here … Vintage Village (they are also on Facebook, Instagram and Twitter).

Thank you once again for your ongoing support. The last few years have been tough and fundraising is a daunting task, but one thing I have discovered is that people are mostly kind, supportive and generous and for that I am eternally grateful …thank you ?

GoFundMe

103 We have made a decision!

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

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

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

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

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

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

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

So that’s where I’m up to!

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

What do you all think?

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

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

GoFundMe

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 ?

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.

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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.