Another instalment as I am taken by the train to the hallowed turf that is Hammersmith Hospital. This began with an early start at 4.45am. I know, a clock should only see this once a day. Teeth were brushed, the shower was jumped in, the beard was conditioned to an inch of its life, as it has gone really dry and coarse of late. It is feeling soft once again, albeit the purple has faded somewhat. I'll probably colour it again, but will definitely do so before the Chemo in May. Mostly so the dust pan gets to look good as it is swept up.
I am now sat on the train thinking about the need to get home in good time later today, to take the prescribed pills and the magic jab juice. I have been doing all this much closer to lunch time anyway, so I have another 6 hours, give or take before it might affect my current time scales.
As far as the side effects go, I do consider myself lucky as I am taking anti sick pills, with no sickness noted. I must say I have only been taking twice a day as opposed to the instructed three times as advised. If I had the slightest inkling of feeling sick, then I would certainly be taking them as instructed. I was told about the joint aches and pains, at the beginning too. Again this gas been kind too, don't get me wrong, if I am out pottering about town, as I was yesterday treating myself to some new jeans and a shirt. (Pandas breed more frequently than I buy new clothes by the way).
Today I am feeling aches in my left hip, my lower back and my left eye again. I assume the hip and back are from the drugs, as I was informed would be the case, by Naghma, the well informed Nurse at Hammersmith, but the left eye is blind anyway, so as long as is isn't too bad, I'll not worry about it. If it was my good right eye, then it would have my full attention and I'd pop in to hospital about it.
Peterborough hospital eye clinic have always been pretty good at squeezing me in at short notice when needed. I try not to bother them unless I am getting genuinely worried about my right eye. Either way, all the aches and pains are dealt with using paracetamol.
Well, that was close. The silence on the train woke me up...phew! God knows where I might have ended up.
Once awake, and back on my stumbley clumsy feet, I took the usual walk to the Victoria line down stairs on the far side of Kings Cross station, then get off at Oxford Circus, to get on the Central line, looking for White City. From there I get on either the No 72, or the 272 bus towards Hammersmith Hospital. All was so very smooth today in my getting here. I will say though, that I really do need to get some paracetamol. My lower back doesn't half ache. Maybe a combination of the walking a fair bit over the last few days, and my being 4 days in to the stem cell generation, and the achy bones are to be expected.
From speaking to the Nursing staff here, I am now in the prime time for the aches to be really biting down. As the day is slowly moving on, yes, I can feel those aches. Do I sound like I am whinging yet?
My bloods have been taken by Nurse Harry and they have been sent off, as I sit here wondering where I can get those paracetamol tablets, on my way home.
Ok, so I fell asleep as the bloods were sent off, and was told they'd be ready after lunch, and with the time at 10.30 now, off I trot to central London for some nice food and to kill some time. I do pass a chemist, but meh! It'll be reet.
I eventually find myself in Selfridges food hall trying to eat ramen broth, but yes my right hand is still rubbish, so I am forced to eat the long stringy noodle goodness with chopsticks using my left hand. Actually I did well, and got away with it. Now back to Hammersmith, by now I am really flagging and my back is aching a lot more than I gave it credit for. It is, every now and then, a quiet groan-worthy amount of ache. I really regret not getting some paracetamol to scoff.
Eventually I get back to Hammersmith, to be told, all my bloods are exactly where they should be, and to come back on Monday for the big stem cell removal. So I say my thank yous to everyone and make my way home, thinking I knew a sly pocket full of paracetamol wouldn't go a miss right now.
I am on the train thinking, if the aches were anything to worry about, I would have bought some. I do see the aching bones as the Body telling me it is busy generating squillions of big fat juicy stem cells for me. You see, it might be super rubbish at running and tying my shoe laces at the moment, but it can spit out stem cells to order when it needs to. Thank you Body, you ain't that bad after all. Thank you X.
Scott McCormick reveals what his first day of HSCT treatment, for his multiple sclerosis, was really like
As I write this I am hooked up to the juice and will be here for a good few hours. My nurse Naghma has explained everything I need to know and what is going to be happening. This multiple sclerosis (MS) is going to be getting a good kicking. She also showed me how to administer the injections I showed you in my latest Vlog. I'll be doing those myself at home. It would seem a bit of podge on the belly is helpful and I have plenty of podge so I see no issues. It looks like all the Ben & Jerry’s ice cream has come in handy at last. I had to do little pre bulking up for the procedure anyway, I had a six pack before this honest...pfft!
All is pretty straight forward so far and I am plugged in. They’ve given me the anti-sickness steroid and one thing I’ve noticed is that I can smell the chemistry in my nose. It’s a warm chemical pine wood smell. Not at all displeasing, just different.
Now the next drug is going in to help protect my bladder and kidneys, this is probably just over a pint or so of fluid, being slowly chuntered into my arm. If I wasn't writing this I'd be bored by now, so a good book is advised during this time.
I am now quite deep in to the Chemo drug and the machine sounds like it is going like the clappers by comparison to the two previous drugs. This chemo malarkey was at 1.3 litres, after the other drugs earlier. All done now, and feeling a wee bit wavy, but they do want me to stick around to be sure I am ok before I leave. Oddly enough, with all that extra fluid on board, I need a wee.
I have just walked across the room and my legs are more wobbly than usual, not that they were great before, but the difference is noticeable straight after. Still my mission was carried out successfully. I’m feeling hazy still, and I’ve had my heart rate (HR) and oxygen concentration checked. My resting HR is at 100, but this is due to the amount of extra fluids on board. After another couple of hours sat resting, well, jabbering with the lady next to me, who says lots of sleep is the best way through the main chemo, I left to head to the flat the hospital provides as part of the treatment.
I’ve just got back to the flat and I got some food from the shop around the corner on the way. I was glad for the paracetamol I picked up at the shop. I did get a stinking head ache as described by Naghma and I did go on to feel a bit icky later. I didn't get the best night’s sleep. I did however get a cheeky combat kip a bit later, just before I left. After that I felt much better and set off for the train to come home.
I did notice that my smell changed significantly during the chemo. I could smell the drugs in my nose as it was going in to my arm and I could smell it on my skin until I had my really long shower in the morning. With a good spray of Brut, the world was all good again.
I am home now and glad to be here. Thank you to everyone for their well wishes and support, it’s really appreciated. I’ll keep you all updated on my progress.
Shelley Silas is not a runner, well that was until she realised that maybe she is…
For years I’ve told everyone never to run because it’s bad for you. I’ve encountered many runners with strapped knees and brightly coloured tape, ankle supports and sore hips all bemoaning the fact that running did this to them as if they were not in charge of their bodies. But I had no interest in running so never paid much attention.
Exactly three years ago today on March 30th, 2016 I went for a run around my local park. Bored with the gym and not wanting to be inside on a glorious spring day, my wife suggested I go for a run. Yeah, why not. I had trainers, a quick couple of laps and I’d be home. I was 56. I ran about 2 metres and stopped. I couldn’t do it. I was out of breath, my legs wouldn’t work, it was absolute torture. I couldn’t understand it. I was fit, I thought I was fit. Didn’t gym and yoga and Pilates and swimming all make me super fit? Er...no. Toned, well-stretched, with good balance, but as far as my cardio went, I was totally rubbish. I couldn’t even blame my dire attempt on my mild asthma. I stomped home filled with despair.
I don’t like not being able to do something, it’s not in my character. Facebook came to the rescue with loads of recommendations to do the NHS couch to 5k. The walk-run method has worked for thousands and it worked for me. In 9 weeks I could run 5k without stopping. I remember my first 5k race, I was overjoyed yet I couldn’t imagine running any further distance, a 10k was unimaginable. But 5k wasn't enough. I wanted more. And so it progressed. My first 10k was on Clapham Common, I was ecstatic. That year I also slipped in two triathlons. I’m still not sure how I managed to finish them. A 10-miler around Richmond Park followed, and then a half in 2018 and I loved it. The spirit of the crowd, the other runners, the super speedy and the slower among us, running for ourselves and often for charity. A 31k ultra-marathon came next in July 2018 but I wasn’t prepared and I walked a lot of it, trail running was new to me. But this was a test to see how body and mind responded. I couldn’t walk down stairs for 4 days but my mind was okay. Then I ran a dreadful 15 miler because yet again, I wasn’t prepared, I didn’t do the work and my legs knew it. Two friends helped me cross the finish line. I knew I had to be prepared next time. Looking back, I really enjoyed running and walking in the Chilterns, often alone as others were ahead and behind, time to think about everything, getting lost and then getting found. Prior to that I didn’t even know what an ultra-marathon was. It’s anything over 26.2 miles!
Some people said, what about a marathon? To which I laughed in their faces. Don’t be ridiculous, I’m never running a marathon, I have never wanted to, I have no interest in it and most important of all, I do not want to get injured.
This weekend, on Sunday April 14th, I am running the Paris marathon (because I didn’t get into London, not because I am fancy!). As I said, this is something I never dreamed of, it wasn’t on a bucket list, I didn’t watch Mo and Paula and Eliud and Mary and think, I want to do that, I want to be them. I still don’t want to be them, which is just as well because it’s never going to happen. Now I watch them in awe, the speed, the focus, the determination, the keeping on going. They are remarkable. Keeping on going is hard. But I have kept on going. I’ve been training since November 21st, four runs a week, comprising of a longer run each week and three shorter. I’ve completed all but one run due to being unwell. And I've had help.
A runner (he’s run more than 60 marathons and ultras and super-ultra 100-milers) called Michael has been with me all the way. He sorted my training schedule and has run three of the longer runs with me at my pace and has always mapped the route. He texts me weekly to find out how my legs are and how I am. I couldn’t do this without his guidance and belief – because right now, I am absolutely terrified that I won’t be able to complete it, or feel faint, or get heat stroke, or fall into the Seine, or trip over the many cobblestones, or hurt so badly I’ll have to be stretchered out, or spend all my time in the portaloos. Yes, I am scared because it has been hard, getting lost, running up hills without Kate Bush’s help and scrambling down them, fitting in training with work and life and my magnificent, supportive wife (I did remind her that this is all her fault), and my 90 year old mum and the cold and hot and fuelling properly and falling over and bouncing back and hurting and the good runs, so many good runs when it all comes together – but mostly, it’s been hard. But the satisfaction of having run outweighs everything else.
I’m running as a 60th birthday present to myself but also to raise funds for a charity, as I have been doing since I started running. This year that charity is MS-UK.
MS-UK does the most vital work, with people having to cope with multiple sclerosis (MS) on a day-to-day basis. Unlike other MS charities, MS-UK does not receive government funding or money from pharmaceutical companies, it is there to provide direct care for people having to adapt their lives to MS. My friend Jim, who is in the later stages of MS, suggested MS-UK. It's smaller than the well-known charities, but small is as vital and significant and needs our help too.
I’ve reached my target but more donations are always welcome. I have been overwhelmed by the generosity and kindness of family and friends and total strangers, especially when times are hard and the world is in chaos. I will run my best, not my fastest, I will take care while taking in the sights and smells of Paris, and I will carry every good wish lightly on my back. And I will acknowledge my immense privilege and good fortune. And I will wear my t-shirt and medal when you next see me.
For more information about MS-UK – www.ms-uk.org
If you’d like to donate to my Just Giving Page – here it is www.justgiving.com/fundraising/shelley-silas5
Meet the Physiotherapy students Julian Chamberlain-Carter and Rebecca Wilson who are currently completing their placement and supporting the team at MS-UK’s wellness centre Josephs Court, Colchester. They are both studying their Masters in Physiotherapy at the University of Essex. Over the course of their two-year degree they must complete six placements made up of five-week increments. They were specially selected to partake in this new emerging role which is a first of its kind both at the University, within Essex, and with ourselves at MS-UK.
Julian was born and bred in Colchester, England, he comes from a sporting background and has completed a degree in Rugby Coaching and Performance. His own personal experience and use of physiotherapy sparked his interest and aspiration to train to become a qualified physiotherapist. He wants to use his skills to help others with the care and rehabilitation they require. Julian has a keen interest in neurorehabilitation, particularly in Parkinson’s Disease and is currently completing his thesis in this specific area.
Rebecca is from Londonderry in Northern Ireland, she comes from a similar sporting background after completing a degree in Sports Therapy. Her interest of the human body and her personal experience with physiotherapy inspired her to carry out work experience and work with a local rugby club, which further affirmed her interest in pursuing physiotherapy as a career. Rebecca has previously supported MS-UK three years in a row at the Virgin Money London Marathon providing massage for those competing for the charity. Rebecca’s interest varies from physiotherapy to paediatrics, pelvic health and neurology.
Together they are both at Josephs Court using their physiotherapy skills and knowledge to develop an emerging role for physiotherapy in the future with MS-UK. Currently they are evaluating the service provision and developing new pathways for greater exercise, health and wellbeing benefits. These new pathways include treatment for foot-drop, gait training, upper limb function and balance. Alongside the physiotherapy specific exercise, advise and education, the students are learning about the various services that the charity has to offer and will be attending social events, such as coffee mornings, while undertaking their placement.
Through the placement the students are hoping to leave their mark by providing a sustainable service that clients can make use of. Through the development of this placement both MS-UK and the University of Essex are looking to create a strong link to allow future physiotherapy students to complete placements with us at Josephs Court to further allow the current users to get the best possible services that we can provide.
Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters.
The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.
The day included taking part in three different games that could be played standing up or sitting down.
Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...
‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’
Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.
A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!
Laura May, Communications Manager
My cousin, Kevin was diagnosed with primary progressive multiple sclerosis (MS) in 2006. Kev was more like an older brother to me, he was someone to look up to and get into mischief with. Being two years older he always looked out for me and I got to wear his hand-me-down clothes - luckily I wasn’t much of a girly girl!
We were all shocked by his diagnosis; his initial complaint of optic neuritis hadn’t prepared us for what was to come. As a nurse I was aware of MS but more familiar with the relapse remitting form. His deterioration in health was rapid and devastating, for Kev and for all who loved him. Despite the many challenges he faced however, he never lost his sense of humour. He was truly a funny, humble and very loveable man.
Kev passed away last year, two days after his 46th birthday. I wanted to do something meaningful to help make sense of everything Kev went through, to remember him in a positive way and to help other families affected by MS. I feel very lucky to have the opportunity to run the London Marathon in his memory and I am looking forward to raising as much money as I possibly can for MS-UK.
I have two young daughters so when it came to fundraising I quickly realised that any fundraising activities were most likely going to involve them. Luckily they are involved in several clubs which have provided great links for raffles and donations.
My biggest fundraising event was a Purple Unicorn party! I had an idea to organise a children’s party and charge admission to raise money. Having organised parties for my own children on numerous occasions this felt like a safe, familiar and fun option. I contacted a party and events company, which I had used previously and had a long chat with the manager who was simply amazing! She suggested the purple unicorn theme as they already had a purple unicorn mascot (plus, who doesn’t love a purple unicorn?) she suggested using the “WeGotTickets” platform and she offered to do the party entertainment and advertising free of charge!
We set a date over the school holidays and I was able to book a function room for a discounted price as I mentioned the event was for charity. I organised a hot dog and candy floss machine, balloons for room decoration and glitter face painting which I paid for myself.
The WeGotTickets website was so easy to use, I decided on a ticket price of £10 per child with one adult going free per paying child. I advertised the event on Facebook and through my daughter’s school/nursery and the party company promoted it on Facebook, Instagram, and Twitter, plus they emailed the event details to their full client list. I managed to sell 40 tickets so raised £400 from ticket sales, the money was automatically credited to my bank account a week after the event.
In addition I organised a raffle, sold unicorn cupcakes, sweet cones and unicorn headbands. I held a guess the number of sweets in a jar competition and charged £1 donation for face painting. My final total raised was £656!
It wasn’t too difficult or time consuming to organise, I was very lucky to have such an amazing party company on board and they took a lot of the organisation and stress off my shoulders. Everyone thoroughly enjoyed the party, including me!
I am not a natural marathon runner; if my husband had to describe me in one word it would be ‘clumsy’! My journey to the Virgin Money London Marathon start line has been tough at times. I like to think Kev has been with me each step of the way, during good runs and bad runs. I know that the marathon will be an emotional day and I hope there will be plenty of tissues at the finish line!
If you would like to donate to Stephanie’s cause, visit her JustGiving page.
Issue 114 of New Pathways magazine is out now. In this jam-packed edition, we take a look at the recent changes that could affect those of you who take CBD oil, on page 12. We also ask ourselves “Am I having a relapse?” Whether you’re newly diagnosed or have been living with MS for years, there will come a time when you will ask yourself this question, to find out more turn to page 39.
Page 21 offers some helpful advice to those who have found themselves caring for a friend or loved one and don’t know where to start when it comes to finding support.
Louise Willis MS-UK Counsellor talks about managing fatigue and how spoon theory can help you manage and explain it to others on page 28.
MSer and feature writer Ian Cook investigates if magnets can help multiple sclerosis in Cook’s Report Revisited on page 19.
Mary Wilson, #5 Para-Badminton player in the world, reveals her hopes of representing Team GB in Tokyo 2020 Paralympics on page 24, and discover how music therapy could help your MS on page 23.
In addition, don’t forget to read all the latest news and real life stories from MSers living life to the full and why not give our tasty free recipe a try!
About New Pathways
New Pathways magazine is a truly community led publication written by people with MS for people with MS. Each issue offers a variety of information on drugs, complementary therapies and symptom management, plus all the latest news and research and your amazing real life stories.
To subscribe, visit www.ms-uk.org/NewPathways, or call 0800 783 0518. Audio, plain text and digital versions of the magazine are available on request, simply call 01206 226500 and let us know your requirements.
Those of you who have been following Scott’s story will know that he is letting MS-UK follow his HSCT (Hematopoietic stem cell transplantation) journey to treat his multiple sclerosis (MS). Scott aims to raise awareness of MS and this treatment option, and will be vlogging throughout his treatment giving the MS community a unique insight into what HSCT involves.
Scott was diagnosed with MS 13 years ago and until recently he had lived relatively unaffected by his condition, pursuing his career as an aircraft engineer. When his condition became more active and having tried some of the common MS drugs options, which came with awful side effects, he sought a different approach.
It was his wife Georgia who found and researched HSCT treatment and having considered his options Scott decided that the treatment is the right choice for him.
HSCT is an intense chemotherapy treatment for MS. It aims to wipe out the body’s current faulty immune system and then grow a new one using the body’s own stem cells, which are found in the blood. Although this method cannot cure MS or repair the damage it has already caused, it has been found to halt progression of the condition in a number of people. However, it is also important to note that it does not work for everyone and there is no conclusive evidence to suggest how long it may halt progression for.
Scott knows that the treatment isn’t without risks, but says: “This was a split second decision for me. I am 45 and my boys have seen me work hard to provide for them. When I get home I am tired, I can be irritable.
“It is true that there is a 1 in 50 mortality rate, but if you flip that on its head it is also like being presented with a 98% survival rate. The alternative is a clear and distinct 100% rate of still having MS, and it devouring me. There is no light at the end of that endless tunnel, where you don't know where, or when you get off. All you know is you still have MS and it will not let you go.”
Having met with the team in charge of his upcoming treatment, Scott was informed that it is highly likely that he will lose his hair, including his impressive beard which he is very well known for. So to celebrate his bearded efforts, his upcoming treatment and show his support for MS-UK, he had dyed his beard MS-UK purple!
Want more information about HSCT?
Our helpline is here to listen and offer you all the information and support you need to make your own decisions. Call us free on 0800 783 0518, email email@example.com, or live web chat with us today.