I wanted to invite you to complete our survey which launched today about loneliness and isolation.
Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.
We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it.
The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.
Thank you so much for your contribution,
Head of Services
I wanted to let you know about a new volunteering opportunity here at MS-UK.
We are looking for Volunteer Counsellors to join our team to provide telephone counselling sessions to those affected by multiple sclerosis. If you have experience of delivering person centred and telephone counselling please get in touch. The role is based at our office in Colchester and full training will be provided on 28 and 29 May 2019.
You can find out all about this opportunity on our volunteering web page, and the closing date is 10 May.
MS-UK Counselling is the only service of its kind available to people diagnosed with multiple sclerosis in the UK, so you will be joining a dedicated team that really makes a difference.
We can't quite believe it but we have just seen another Virgin Money London Marathon take place and it was amazing to see so many #TeamPurple runners taking on the challenge in aid of MS-UK! Thank you to every single person who made the day so special.
Now we're looking to next year and the date has been announced - 26 April 2020! The ballot for the Virgin Money London Marathon is now open, so visit the website to register today! It will close this Friday at 5pm, 03 May.
Good luck everyone!
'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.
'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.
'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.
'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.
'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.
'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.
'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.
'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.
'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'
So in today’s blog I’m going to talk about something a little more serious and the topic is dealing with my hair falling out due to the chemotherapy.
At first I will say and as you can see from the video, it was a bit funny and humorous to me. But those are the magic words, “to me” and just me. The bigger picture is obviously that multiple sclerosis (MS) affects twice as many women as it does men, so for every one of me as a man, there are two women. As I was washing my hair this morning in the shower, there was a nice ring of my hair about my feet, which to be honest was something of a surprise and not a terribly pleasant experience. It did leave me with a curious feeling, thinking about other people that may not be approaching this in the same way that I am. I can see that a woman would be very proud of her hair, or a man for that matter, a lot of men can get uppity about losing their hair. Nature takes some men on a biological one-way trip and their hair just falls out anyway regardless of chemotherapy and that’s just life, there are plenty of strapping bald men out there.
I did actually feel my heart sink a little bit when I thought about people who are proud of their hair and spend a lot of money on it. It can define some people. This is not meant to sound like it’s a vanity thing because it just isn’t, but watching my hair falling out as I was washing it this morning left me with a small feeling of dread for myself. What if it doesn’t grow back? Which isn’t too bad, as I used to shave my head all the time anyway. But for those that don’t view this the same way as I do, it must be such a huge heavy heart sinking feeling. I can see how it might feel at this stage of the initial HSCT chemotherapy, almost like a point of no return, the hair is going to go. Writing this, it makes me feel more than a bit solemn when I think about the big picture and the many different people that this will involve.
One of the few things I can think of that may help in this situation is to have a good positive mental attitude. I don’t mean to sound patronising, but it can become such a strong powerful weapon to have in your little arsenal and that is what gets me through. Yeah, the hair is going right now, but just look to the future not so far away. You’re talking six months from now, which is a snap in our lifetimes really and isn’t really that long at all. We would have collectively come through the other side of the chemotherapy, and we shall be growing fresh new baby soft hair, colour back in our cheeks, a spring in our step and no MS.
Another positive view on this was one my wife brought up. She said this is my old MS hair and it’s been removed to make way for my new non-MS hair for the new non-MS me. It’s a very useful sentiment and one I will carry closely with me as I go through each stage of treatment.
No MS is what we need to focus on right here, right now as the collective, going through the chemotherapy to rid ourselves of the MS that we are all battling with. My eyes are firmly fixed on that, and as I have said before I want to run, probably not for the first few weeks or months, but I will run. We the collective MSers now have a way out of the previously never-ending inescapable tunnel that I personally could never see the end of. HSCT is a gift that few are blessed to receive, so losing our hair in the meantime is an insignificantly small price to pay for us to have our lives back, with or without limitations.
Scott has decided that he will shave his beloved beard off to raise money for MS-UK. Anyone who has been following his story will know how much his beard means to him, so if you would like to donate, visit his JustGiving page or Facebook fundraisier.
If you’ve been effected by the topic discussed in this blog, please contact the MS-UK Hepline on 0800 783 0518.
'I was diagnosed with MS in the summer of 2007 and I quickly tried to find out more about it and what I could do. Of the various organisations offering advice, it was MS-UK (or MSRC as it was at the time) that I found most helpful and supportive. The pragmatic and un-blinkered information, the positive attitude of taking control of your own situation helped me through those first difficult few months, and that idea of taking control of your own health is still very much with me.
'Fortunately I then got the chance to join the Board of Trustees at MS-UK and it gave me a chance to use the skills I had developed in my management consulting career for an organisation that really was making a difference to people’s lives.
'Before I was diagnosed I was very physically active, despite a demanding job that took me to many places around the world. The mountains and mountaineering was my real passion, and as well as rock and ice climbing I ran and cycled. Ironically it was a friend seeing me stagger back from a day’s rock climbing that made me go to the doctor and started the process that led to my diagnosis.
'I have primary progressive MS and immediately after diagnosis my physical symptoms were pretty minor. But as my mobility worsened I couldn’t climb anymore, I kept falling over when running because of my foot drop, and tunnel vision when tired made road cycling too dangerous. Climbing was a big part of my life and not being able to do this felt like a huge loss to me.
'So now 12 years after diagnosis with PPMS I do what I can when it comes to exercise and it’s still a big part of my life. I can’t run at all or walk far, so I have a rowing machine for cardiovascular exercise. I used to have a rowing club nearby that offered assisted rowing which was wonderful. I have a home gym where I can do resistance and strength work and have joined The MS Gym.
'I have seen the benefits of exercising personally and am certain it has allowed me to recover some lost ability. For a while my foot drop was pretty bad - all my right shoes had the familiar tell-tale scuff marks around the toe. But amazingly I found that by working on my right foot and leg I managed to nearly get rid of the foot drop – so now it’s only when I’m really tired that I have a problem. This helped convince me that although I might not be able to recover all the function I’ve lost, I may be able recover some function and must do what I can to maximise what I have.
'I also have some advice to people affected by MS who are nervous about exercising. Exercise will not make your MS worse. Even if you feel exhausted or can’t even move immediately after exercising, you will recover. And it is fine to exercise to ‘failure’ and push your limits – just make sure you’re safe, be aware of form, and have time to recover. There are lots of stories from those with MS that have some functional recovery by exercising, including at basic levels of movement. Also brain loss as we age is much faster in those with MS and exercise slows this loss. However, it can be hard, especially with the fatigue and mobility issues. There is lots of help out there to start you on your exercising journey. Neuro physiotherapists can be incredibly helpful and your MS nurse or consultant might be able to refer you. Many gyms offer advice and training programmes, and there are assisted activities all over the UK. MS-UK and the MS Trust have general advice and more details on exercise programs.
'I also found that exercising with MS requires a huge amount of concentration and can be very tiring. It’s not just a case of “use it or lose it” because form is really important. When I exercise I’m also trying to create new neural pathways to overcome functional loss, so learning and practicing the right way to move is vital.
'Finally, I feel that exercising is therapeutic and I know that I have recovered some lost function through exercising. I’m convinced that if I didn’t exercise, I would have lost more function and exercise has helped me alter the trajectory of the condition. But I just enjoy doing it and feel so much better - even if I can’t move a step immediately afterwards!'
I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
'I was inspired to run for MS-UK by my Aunt Karen who was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012. Despite how much of a change her diagnosis has brought to her life and the daily challenges it now presents to her, I find myself in awe with how she hasn’t let it hold her back. I was drawn to MS-UK in particular due to the great services they offer to those affected, such as the helpline, counselling service and wellness centre facility. Services like these were so valuable and essential to helping my aunt, so raising money to ensure they are provided to others who need them means a lot.
'The main challenge I faced when I found out I had a charity place last June was that I had never run before and it didn’t come very naturally to me. My main support came through joining a local running group, which has really helped me through the winter training runs and longer runs recently.
'To fundraise for MS-UK I utilised my job as a Makeup Artist in order to hold a luxury beauty raffle. I was very lucky to be gifted items after asking various colleagues for contributions to the prizes. I managed to gather together enough items for three large prizes and decided to sell tickets for £5 each. I posted about the raffle on social media, as well as my local running group’s Facebook page. I sold 109 tickets and raised a total of £545. After the success and popularity of the first raffle I’m looking to hold a second one!
'Make sure to put yourself out there, whether it be on social media or in your work place. I’ve posted regular updates of my training onto Facebook and Instagram to let people know about my progression and to let them know about why I’m running for MS-UK. Also not being afraid to reach out to local businesses or friends to see if they would be willing to donate items as prizes, if you decide to do a raffle. I was really overwhelmed by people’s generosity, so it’s always worth asking!
'I feel extremely lucky and proud to be able to run the London Marathon for my aunt and to be able to raise money for MS-UK. I’ve recently completed my longest training run (20 miles), which I never could have imagined myself doing! Knowing I’m running for such a great cause has really helped to motivate and keep me going with my training, and although I’m nervous, I can’t wait for start-line of the marathon!'
Earlier this week, Scott McCormick had his stem cells harvested for HSCT treatment at Hammersmith Hospital
Meet Eros! That’s the big old chunky machine next to me, a centrifuge in essence, which will be taking my blood and spinning it. As the image below shows, the heavy red blood cells, will separate and settle at the very bottom and just above is an amber, orangey band; these are the magical stem cells, which will be decanted off for use later. The top and majority is the plasma, the main carrier of the bloods components. Fascinating stuff.
This morning, when my blood results came back from the lab, they informed me that my stem cell count was very good at 3.13 million. I went to sleep in the room as they harvested the cells. Yay, a few ZZZZs!
Due to my count being a good one, my bones have let me know they have been working hard by aching quite a bit.
Eros was a good fella and did his job so very well. I found out that there are only three of these amazing machines at Hammersmith Hospital and cancer patients get higher priority, so that’s why there is a systemic bottle neck for HSCT treatment for MS patients. Seeing and hearing this really did make me aware of how lucky I am to have made it past the selection board.
And here they are. Have a look at that bag of freaking magic! Three million plus stem cells hot off the press, well my arm.
They have been confirmed as good to go and cryogenically frozen until my call back in a few weeks’ time.
To find out more about how this part of the treatment went and how Scott is feeling now, view his latest vlog here.
I started supporting MS-UK in 2014 when my running buddy and I decided to participate in a running challenge of three marathons in three weeks, with London being the finale of the trio. Having missed out on the ballot we were given the chance of a place with MS-UK, which was a good fit because I’ve had relapsing-remitting multiple sclerosis since my late 30s. I was immediately hooked and have been fundraising for the last five years now. I’ve raised a total of £16,372.20 so far!
This year will be my fifth marathon, all of which were charity bond places with MS-UK. Each marathon has been special in its own way; two have been with my buddy Debbie Germain, one was with my husband, last year I ran with my daughter and this year I will be by myself. The trio of marathons was an epic challenge though and a very proud moment.
Without a doubt the end of the race is very special, you are treated like a superstar by the charity and they look after you as though you have just won the gold medal.
When it’s come to raising the funds for each race I’ve organised lots of different events. I have done a quiz night a few times, various raffles, I had race entries donated for me to auction, as well as a private run coaching session with Shane Benzie.
I organise a yearly Halloween and Christmas 5k night run around Greenham Common Air Base, a fantastic spectacle of lights moving around the Common in the pitch black with medals, hot soup or mulled wine at the end.
I have a Rock and Roll Bingo evening next month where you have to guess snippets of songs and cross off bingo numbers, which should be fun.
One of my more notorious fundraisers was with my buddy Debbie. We produced a Naked Runners Calendar, with 12 of our male running friends all tastefully photographed by our photographer friend, they all have appropriately placed props of course! The calendar sold for £10 and proved to be very popular.
I’d definitely encourage anyone who’s been thinking about supporting MS-UK to give them a call. They will support you just as much as you support them.
This isn’t my first rodeo in the foray of fundraising so I wasn’t too worried about meeting my target, however I live on a different continent to a lot of my family, friends and support network. I didn’t want to just ask for straight up donations and therefore wanted to come up with something fun and inventive to do which didn’t involve people having to be present to raise money.
This year is a big bucket list year for me (hence signing up for my first marathon!), and whilst discussing said list’s items over lunch with the guys at work (I work for the Fire Department) I mentioned that I would shave my head for the right cause. The guys like any good brothers laughed and said they would pay good money to see that!! Sooo, I took them to their word.
This seemed like that perfect cause I’d been looking for, I’d made my decision. I set a target of half my fundraising goal, having two pub quiz nights planned in a couple of months, and set out on social media and by email to state my ‘hair brained’ plan; stating that the quicker I reached my goal the quicker it all comes off. I also said that the highest single donor would get to do the shaving!
I thought it might take around 3 weeks. Well within 10 days I had exceeded my target and it was still rising. It was going to happen quick. I decided the best spot for it to take place was at the fire station. I contacted the local newspaper to see if they were interested in coming to witness and take some photos, which they did. The winning donation came from one of my fellow volunteer Royal Canadian Marine Search and Rescue crewmates (the Canadian version of RNLI). I had a little wobble on the day thinking “what the heck am I doing?!” but once I sat in that chair and the clippers started buzzing it felt right. The newspaper article was great and I actually smashed my complete fundraising goal and raised over £3,000!
Multiple sclerosis (MS) has affected my family personally. My father was diagnosed with MS around 35 years ago. Back then there was very little support, information or treatments available. He and my mum were handed a trifold pamphlet and told ‘good luck’. Things have changed immensely now with the support offered by organisations such as MS-UK. The knowledge about MS, its effects, the research and treatments have improved greatly in recent years. The difference it makes to those diagnosed and their families now is what drove me to raise funds for this important cause. My father passed away a few years ago, but I know he would be proud of what I am doing.
Shaving your head is a big deal. Most of us hold a lot of our identity in our hair. I thought I would have a moment after the fact where I would look in the mirror and have a bit of a cry. I can happily state though that it hasn’t happened. I look in the mirror and feel satisfaction. It is weird, I can’t stop rubbing my hand over the fuzz I have now or trying to habitually ‘tuck’ my non-existent hair behind my ears. I was a hair twiddler so it’s not surprising; And I chuckle to myself when my hair causes a ‘Velcro’ effect with my clothes, or the couch, or my pillow, or my hats… lol. It’s surprising how much your hair keeps you warm, so I’ve got a lot of woolly hats (called toques in Canada). It’s hard to temperature regulate without the hair, so the hats come off and on, off and on. It took me a good week or so to feel confident being in public and whipping off that hat. But now I wear the shorn look with pride.
Top tips for other fundraisers...
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
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.