Wow! How amazing are you lot?!! Such a wonderful response to my shout out for raffle prizes and auction items. I have already received several boxes of chocolates and bottles of assorted booze and have also had some incredible items offered.
We have a stay in a holiday home in the beautiful Isle of Man and a weekend in a vintage caravan in Cornwall, as well as three £50 holiday vouchers (details on all to follow).
Some friends of Niamh are putting together a makeup hamper – such a good way for a group of people donate a prize.
We have a voucher for a treatment of your choice at Seed in Edgeley (my favourite beauty salon where products used are vegan, organic and cruelty free). Check them out on Facebook or Instagram.
We have a contact at Manchester City, who is working on finding an appropriate item for us to auction. If anyone has a contact at United or Stockport County, please give me a shout!
Carl at Millshed Leather Goods is going to handmake something beautiful for us to auction. You can check out his amazing work on Facebook and Instagram and on his website here … Millshed.
Many other items have been offered and we are hopeful that we will have a lovely array of prizes and auction items ready for our evening event on 23rd February.
We have a meeting at Bonis Hall on Saturday, when we hope to finalise plans and let you know more.
In other fundraising news, my brother’s friend George battled through a chest infection to take part in the Run Through Half Marathon in Victoria Park, London last weekend. George managed to finish in under 2 hours and raised a total of £363 towards my treatment …thank you George 🏃🏼♂️
Thank you all for your continued support. We are still collecting prizes and auction items if you have anything you can give and all offers of help are gratefully received.
Today has been a very strange sort of day for me. I work in education so have school holidays (I know I am very lucky). During term time, I work hard and over recent months have started to struggle. I found my MS fatigue and other symptoms impacted on my daily life and it was getting to the point where I was cancelling social events and spending all my non-working time trying to recover from the working day.
Towards the end of last term, my life consisted of work/eat/sleep and not much else and it started to get me down. In December, I made the decision to reduce my working hours to 4 days per week, instead of 5. The reduction in income is a bit of a worry, but I am hoping to achieve a better work/life balance and to have time and energy to see friends and to manage everything else.
So today was my first non-working term time day! I didn’t do anything exciting – a bit of resting, a bit of cleaning and sorted some paperwork – but it feels good to be entering the weekend with a little more energy and with a few jobs out of the way.
Tomorrow, George will be bravely taking on the challenge of the Runthrough Victoria Park Half Marathon, despite suffering a chest infection, which has impacted on his training. Good luck George! Please take it easy and just get yourself over the finish line in one piece!
JWe are not quite ready to give full information just yet, but I hope lots of you will come along to our evening fundraising event on Saturday 23rd February. The venue is the beautiful Bonis Hall in Prestbury.
We are in the process of organising music, food and drink and hope it will be a fun night for everyone. If you can help in any way, please do get in touch.
We are also planning on holding a raffle and are now in the process of collecting prizes. Do you have anything you could donate? Unwanted Christmas gifts? Access to services? Do you know anyone associated with sport or TV who might donate signed items or event tickets?
Many thanks to everyone who has already offered items – I will be in touch soon.
I can sometimes be a bit of a geek, so please bear with me while I briefly indulge my love of numbers …
*This refers to comments posted on the blog page. I often get texts, messages etc in response to things I have posted …too many to count, but they all mean a lot to me 😘
As you can see, we are almost a quarter of the way there with our fundraising campaign. Never in my wildest dreams did I think we would do this well …thank you to everyone who has contributed with donations, shares or by taking on challenges.
We have a few other events in the pipeline but I am very aware that we are unlikely to achieve the full amount by the date of my treatment. Ideally I would like to pay early so as to avoid the crashing of the value of the pound when we leave the EU. Next week I plan to begin looking into options on borrowing to pay the rest. I am not very money savvy, so if anyone has any advice or guidance you could give me on that, please get in touch. Our plan would be to continue to fundraise and hopefully repay the loan by the end of the year.
I also want to share this YouTube video with you …
Aaron Boster is a well regarded American neuro immunologist. In this video, he makes the argument for a therapy deescalation model, where a patient gets the most potent therapy, as early as possible in the disease course. He describes induction therapies as the best option and includes HSCT (Hematopoietic Stem Cell Transplant) as one of these. At present, patients are initially offered the least effective treatments, with an escalation to more effective treatments if the first drug fails. He also makes some interesting comments about how a patient’s age can the impact the efficacy of DMD’s.
After a couple of days feeling mentally and physically low, I am pleased to say I have bounced back and am now feeling much better.
I always struggle a little at this time of year. I don’t tend to celebrate the new year and haven’t been out on New years Eve for years. The last time I did was in 2004, just after the end of my marriage and it was a complete disaster, which seems to have scarred me for ever!
I now find it much easier to stay in and do a bit of wallowing on New Year’s Eve! I also try to do a bit of reflecting on the year that’s ending and think about what I hope for in the new year.
In some ways, it’s all bit easier this year, I have one aim … to have HSCT and to work hard to optimise my recovery. There is still a lot to do in order to get there …more fundraising, borrowing some money, arranging flights, visas and working out how all those offering to help can best support me. But, I feel so very sure that I’m doing the right thing and this will keep me going over the next few months.
Yesterday I went into town, something I rarely do (I hate shopping!) and it was a bit of a challenge. I only had a few shops to go to, but I struggled with walking so far and manoeuvring through the crowds. Ok Stockport really isn’t that crowded, but I have been avoiding busy places for a while, so it seemed crowded to me! I’m so sick of these limitations on my life – popping into town for a few bits is now a major operation!
Thankfully, I had planned to meet up with my friend Beth for coffee and cake, which was therapy as always …thank you Beth 😘
Today I had brunch with Niamh, Rebecca, John and my gorgeous step-grandson, Albie …such a lovely way to start the day.
This evening I am watching TV, chatting to friends online, drinking gin and eating chocolate. My pyjamas are already on and it’s unlikely I’ll still be awake at midnight!
So, Happy New Year to everyone reading this. Thank you all for your support and kindness over the last year …it means such a lot to me. It’s been a tough year health wise, but over the last few months I have come to realise just how much good there is in the world and for that I am truly grateful xx
After an amazing Christmas break, I returned home with a long list of jobs to do and people to see before I have to go back to work next week. So far I’ve been able to tick very few items off my list, as a bout of energy-sapping fatigue has gradually crept up on me.
Yesterday, I planned to go to the cinema in the afternoon with Niamh, then to a local pub with a friend, to see another friend, singing with her band. When I woke up, I realised I didn’t have enough spoons to get through both, so I cancelled my evening out and had a lovely afternoon at the cinema followed by a quiet evening at home.
This morning I awoke after 9 hours sleep, feeling exhausted and heavy. My feet and lower legs feel cold and dead. After struggling for a few hours, I cancelled my plans for the day and went back to bed.
I hate the way this disease is robbing me of being able to do what I want and of time with people I care about. I am comfortable with my own company, I really don’t mind being on my own, but I’m also a sociable person and my friends and family are important to me.
One of the things I have done to help me cope with bouts of fatigue is to reduce my hours at work, so when the new term starts I will be working 4 days a week instead of 5. I’m a bit concerned about how this will work out financially, but I’m hopeful I’ll manage and it should give me more time to rest, to see friends and do all the other things I need to do.
…
I wouldn’t usually wish to link to the Daily Mail, but they have written a piece on Caroline Wyatt and her experience with HSCT. The piece also refers to the sad death of Nyta Mann, a BBC political editor who chose a different route when MS took over her life.
I hope you all had a wonderful Christmas and are recovering from the festivities. I know I have a few readers with MS, so I’d like to give you a special mention – I hope you had a restful, stress free Christmas.
I spent Christmas at my brother’s house, where we managed a bit of a family get together …14 of us all together on Christmas Day was just lovely ❤️
It was my birthday on Christmas Eve and I started the day with my niece and nephew, Anna and Zeb for company.
Later, we all met at the brewery, where we had picnic lunch and a good chat about beer!
After a couple of mulled wines in the village social club, we made our way to the annual Christingle service in the village church, before going home and welcoming late arrivals, Connor, Niamh, Sophie, Callum and Odin.
Christmas Day was full of joy, presents, noise, laughter, food and drink. The weather was mild and we managed a muddy walk, with Zeb as our guide. Sophie has been learning the proper way to use trecking poles, so after a quick lesson, I was off! I even had to remove the ferrule protectors and use full “spike mode”!
After this much exertion, a visit to the village pub was needed, then home for more food, more drink and a few rounds of our new favourite game “Werewolf”.
Thank you Jimmy, Gill, Anna and Zeb for looking after us so well and an extra thank you to Zeb for giving up his bed for me! Thank you also to Glenda, Axel, Fiona, Kyra and Max (honorary family member!) for helping to make this such a lovely Christmas.
My family are all wonderfully supportive of my fundraising efforts and I received various donations from them …they really are an ingenious bunch! (See latest donations and update on my Go Fund Me page for details).
My amazing children have both cut back on Christmas purchases this year and instead made generous donations to the fund …thank you both for your kindness and for everything you are doing to support me 😘
The next fundraiser is the Run Through Victoria Park half marathon on 5th January …Go George Go!
A date for your diaries …
Our evening event will take place on Saturday 23rd February. We are planning to make this an evening of music, food, drink and fun! A silent auction and raffle are planned and we will also raise funds by making a small ticket charge for entry.
More info will follow nearer the time, but in the meantime, if you are able to help in any way, please get in touch. We would also welcome anything you can donate to raffle or auction …unwanted Christmas gifts, bottles, services, vouchers etc.
Well, today has been a wonderful day in terms of fundraising for my treatment.
Late last night, I spotted a post in one of the HSCT support groups from someone who had HSCT earlier this year, is making an excellent recovery, has some spare cash and wants to use it to help others. As you can imagine, he had many replies (there are literally hundreds of people from all over the world, trying to raise funds for HSCT). I added my fundraiser to the responses, thinking if I was lucky, I might receive a couple of quid from this unexpected source.
I was very pleasantly surprised this morning when I found that this kind person and his wife have donated $225 (£179) into my account. If he has paid this amount into the accounts of everyone who has responded, I reckon he will have paid out almost $10,000. What a heart warming and generous thing to do ❤️
I logged in to my fundraising page to thank the kind stranger for his donation and found I had received a message from someone I haven’t seen for many years – a school friend of my brother! He is running a half marathon in early January and is raising funds for my campaign! What an amazing thing to do! Thank you so much George.
Later at work I discovered that my manager, rather than buy all the team a small gift for Christmas, has made a donation instead. My lovely work team were in full agreement and I must admit, I had a tear in my eye when I found out ❤️
And to complete this amazing day, I came home to a letter from the tax man informing me that they are giving me a rebate of £63 …not a huge amount I know, but I usually only hear from them when the error is in the other direction!
I’ve been feeling a bit overwhelmed recently, at the enormity of the task ahead, but today has given me such a boost and I am feeling optimistic again!
I was diagnosed with MS in June 2017. My most recent MRI scan around that time showed no new lesions or inflammation so my MS was described as “benign”.
I had a further MRI in November 2017 and then in May 2018. These both showed current inflammation and “enhancing lesions”. I had also developed several new symptoms. My MS was then redefined as Active RRMS.
RRMS = Relapsing Remitting MS.
At my most recent neurology appointment, I asked the consultant if he thought my MS was becoming progressive. He replied “well, you’re certainly on the way ”. Somewhere between 50 and 90% of the those with RRMS will become SPMS (Secondary Progressive MS).
Prior to my diagnosis in June 2017, I had had concerning symptoms on and off for about 7 years. In 2014 I was diagnosed with Clinically Isolated Syndrome and Transverse Myelitis.
There are various episodes and symptoms I can recall in the past, that I now recognise may have been neurological symptoms. It is possible that I have had MS for many years.
Is HSCT safe?
No treatment is 100% safe. Having said that, the safety record for HSCT is excellent and improving all the time. Interestingly, the two main clinics used by UK patient (in Mexico and in Russia) both have a far better safety record than the UK. I guess this is due to their experience and careful selection and testing of patients before treatment.
The most risky phase of HSCT is the period of time during which the patient’s immune system is virtually wiped out and before the stem cells have had a chance to begin rebuilding it. This is known as neutropenia. During this stage (about 7-10 days) patients remain in isolation with very strict protocols linked to hygiene, food etc. Patients are continually monitored by medical staff so that action can be taken at an early stage if any concerning symptoms arise. At this stage, an infection that would usually be of no concern, or easily fought off by the body, can lead to sepsis. Thankfully, this is very rare.
Why isn’t it available in the UK?
HSCT is available in the UK and is used widely all over the country to treat patients with Leukaemia and other blood / bone marrow cancers. Two hospitals in London have been treating MS patients for the last few years but as this is a very limited resource, there are very strict criteria in place in order to select patients. A handful of MS patienst have also been treated in Liverpool and Manchester and possibly other hospitals too (this information is not reported anywhere). Some MS patients have received HSCT in Sheffield as part of the MIST trial.
At present I don’t meet the criteria for HSCT on the NHS as I haven’t tried several DMDs. I don’t want to do this as it would take several years, my MS could progress, the drugs have serious long term side effects and there is some evidence that HSCT may be more effective for those who haven’t had multiple previous treatments affecting the immune system.
HSCT is a available privately in the UK, but the costs are much greater than the private clinics abroad.
Why Russia?
I have done a lot of research into the clinics where HSCT is available to international patients. There are several where the costs are beyond my reach and a few who will only treat residents of that particular country. In the end, the choice came down to either Russia or Mexico. Both have treated hundreds of MS patients, including many from the UK, both have an excellent record in terms of outcomes and patient safety and both have an excellent reputation in terms of patient care. In the end, I chose Russia because it is slightly cheaper, it is much nearer and there are some additional costs involved in going to Mexico (patients must bring their own carer or pay extra for this care).
At first I felt a bit anxious about this. Who has ever heard of anyone going to Russia for medical treatment?! But I have been reading and researching, following the journeys of others and even communicating with others whilst they are at the clinic having treatment! I feel confident in the decision I have made.
Will you lose your hair if you have HSCT?
Yes! Well, most people lose their hair due to the chemotherapy phase of the treatment. Obviously that’s not something I’m looking forward to, but if it halts my MS then it’s worth it. Perhaps I’ll wear a wig or maybe a series of snazzy hats! I’m sure I’ll cope.
Actually, I’m more worried about having no eyebrows …I think I’ll research microblading before I go!
I’d like to help but I’m skint!
I totally get this. We are all experiencing hard times at the moment and I know that money is tight for a lot of people. I would never want anyone to feel pressurised to donate …please only give what you can afford. If you can’t afford to give anything, that’s fine too.
There are a couple of other ways you can help…
Share this blog and our fundraising page with all your friends and encourage them to do the same.
If you or anyone you know is in a position to donate items that can be raffled or auctioned, these would be very gratefully received …unwanted Christmas gifts, tickets for events, meals, massages, haircuts etc etc
Sign up for email alerts when this blog is updated.
Follow us on Facebook, Twitter and Instagram (AnotherMSWarrior)
Thank you all so much for your continued support and kind words. It really means a lot 😘
I thought I’d share with you some of the research into HSCT that I have been reading. There are several studies showing the effectiveness and safety of HSCT and many thoughtful accounts from individuals who have accessed the treatment.
Before talking further about the successes, I want to make it clear that I am fully aware that HSCT does not work for everyone. For somewhere around 20% of patients, HSCT does not halt progression of the disease and there seems to be no way of predicting who it won’t be successful foror working out why. It’s a gamble everyone pursuing HSCT must take.
To put this into perspective, it’s worth noting the success rate of currently available DMD (Disease Modifying Drugs). As a first line treatment, most MSers are offered drugs with a quoted effectiveness rate of just 30%. If these fail to prevent relapses, there are various options, eventually leading to drugs with about 60% effectiveness. These drugs must be taken long term and have various effects on the body. The most effective drugs have the most severe side effects and higher risk of contributing to other medical problems. Many neurologists do not believe that in the long term accumulation of disability is reduced by taking DMDs and the truth is, there isn’t universal agreement on their safety, effectiveness, long term risks and benefits.
So, conventional treatment is a gamble too.
In April of this year, an interim report on an international trial known as the MIST trial was published. This relates to an ongoing study of MS patients treated with either HSCT or an alternative treatment in Chicago, Sheffield, Uppsala (Sweden) and Sao Paulo (Brazil).
Key Findings:
110 people with active relapsing remitting MS despite been treated with disease modifying drugs were randomised to receive either the best available drug treatment or AHSCT.
During the treatment follow up period, disability improved significantly after AHSCT.
The EDSS score of patients receiving the transplantation improved from an average of 3.5 to 2.4, which is unprecedented in MS treatment trials. This contrasted significantly with those receiving standard drug treatment whose EDSS scores declined from an average score of 3.3 to 3.9.
Within a year of joining the trial, only one patient in the transplant arm of the trial suffered a relapse compared to 39 relapses observed in the drug treatment arm.
With a mean follow up of 3 years, treatment failure measured by disability progression was 6% in the HSCT arm and 60% in drug treatment arm.
30 people who were originally randomly allocated into the drug treatment arm of the trial were moved over to the transplant arm during the trial period after they had a decline in their EDSS scores. After AHSCT their scores improved from 5.2 to 2.6.
No person in the AHSCT arm suffered any significant side effects.
“Non-myeloablative hematopoietic stem cell transplantation (HSCT) is superior to disease modifying drug (DMD) treatment in highly active Relapsing Remitting Multiple Sclerosis (RRMS): interim results of the Multiple Sclerosis International Stem cell Transplant (MIST) Randomized Trial”
I found this information interesting “Five control patients were withdrawn after soliciting transplants at other centers.” I imagine if you are a patient on the least successful side of a treatment trial, you are likely to want the successful treatment as soon as you become aware of it!
This week there has been a report published from a separate Australian HSCT trial, where similar positive outcomes were revealed.
Prospective phase II clinical trial of autologous haematopoietic stem cell transplant for treatment refractory multiple sclerosis
“Conclusions The EFS in our MS cohort is significantly greater than other high-efficacy immunosuppressive therapies and similar to other AHSCT studies despite a more heavily pretreated cohort.”
Research into HSCT is in its infancy and this is the reason that it is not yet being embraced in many countries as a mainstream treatment. There are many medical professionals who are reluctant to recommend HSCT at the moment, but who feel it could well be the treatment of the future.
This is great for MS patients going forward …but I don’t have time to wait.
EDSS – Expanded Disability Status Scale (a measure of disability due to MS)
AHSCT – Autologous Haematopoietic Stem Cell Transplant (Autologous = Transplant using the individuals’s own tissues)
Since realising that I’ve reached the end of the road in trying to access HSCT in the UK, I’ve had a lot of thinking and decision making to do.
In fairness, the neurologist hasn’t said a definite no, but it’s clear he would want me to try various drugs and see what happens and that this could take several years. In the meantime my MS could continue progressing and I could accumulate more damage to my spinal cord and brain. Or I could have a further relapse and new symptoms and problems could appear. I really don’t want to get any worse.
HSCT can’t reverse all the damage to the central nervous system caused by MS so it makes sense to have it sooner rather than later and before further damage occurs.
There are other factors to consider here too. There is an emerging line of thought that HSCT is more likely to be successful in those who have not spent a long period of time on disease modifying treatments. Clear data on this is hard to find, mainly because medical trials are in their early stages, but I am aware of several haematologists suggesting this and in fact, have seen a recording of an interview with my new neurologist suggesting this may be the case!
Another issue is my age. I want HSCT now! Before I get any older and while I still have lots of living to do!
While researching HSCT, I have found that it is a frequently used treatment for several blood and bone marrow cancers. One of those is Multiple Myeloma. This is a type of bone marrow cancer, which my beautiful mum lived with for almost 10 years. I wonder if she could have lived longer if HSCT had been available to her then?
Happy Birthday Mum ❤️
My mum was 53 when she was diagnosed with MM, the same age I am now. I wonder what she would want me to do? Would she encourage me to keep fighting and get treatment? I wish I knew.
Those of you who knew my mum, what do you think she would say?
My application to the clinic in Moscow went in a few months ago and I have been given a provisional date of 23rd April. Somehow, I need to get the money together before then. I realise it’s not going to be possible to raise that kind of money in just a few months, so I’m going to start looking at borrowing options, maybe increasing my mortgage, in the hope that we will be able to continue fundraising when I’m well enough. If any friends have experience of finance and can advise me how best to approach this, please let me know.
As if I haven’t got enough worries spinning around in my head, another one has recently made its way in there! I will need to pay for my treatment in Euros, so of course, I have had my eye on the exchange rate for a while. It has occurred to me that if we actually do leave the European Union on 29th March, with or without a deal, the value of the pound will plummet! I quite likely won’t have enough, even if we have reached our £40K target! I have no idea how to plan for this …should I try to pay before 29th March? …should I convert my funds to Euros as I go along? …is it possible to have savings in Euros? …HELP!
Damn you Brexit!
Anyway, I’ll be back soon with information on our next round of fundraising events. In the meantime, thank you so much for all your ongoing support ❤️
