Well, my outward flight is booked and my homeward flight is identified and I’m ready to book once Glenda and I get our act together.
Initially my friend Karen was going to come to Russia towards the end of my treatment and travel home with me. Also, Glenda (my sister) was going to come over from Germany, around the same time, to look after me in my early days at home. We worked out that with flights, visas and hotels, getting Karen over there would cost over £1000. Then we had a brain wave and came up with an alternative plan. So my journey home will involve me doing the first leg on my own, as far as Frankfurt. Glenda will meet me there and travel the rest of the way home with me, then stay for a few more days.
I have also started the process of applying for a visa for Russia and will be going to the Russian Visa Centre in Manchester in a couple of weeks to have my finger prints taken!
Moscow here I come!
It’s taken so much hard work to get to this point, with lots of doubts and ups and downs on the way. I’m feeling positive and optimistic at this point. Just my contract to sign and the final funds to scrape together, then it’ll be time to make a packing list!
I am so thankful to everyone who has supported me on this journey. I really do have such an amazing family and wonderful friends. Everyone has been open minded and accepting when I explained my seemingly crazy plan to go to Russia for medical treatment. The haematologist in charge in Russia (Dr Fedorenko) very much believes that a positive attitude helps with recovery and with so many positive people around me, I know I can do it!
(Does anyone know how to add a countdown clock to a blog page??)
If anyone has had a lottery win or has a spare couple of quid they wouldn’t mind sending my way, please donate here … GoFundMe.
I just wanted to send a message to friends everywhere, to apologise for being such a rubbish friend these days!
Although I am working slightly fewer hours these days, I still find that work takes up a lot of my time and energy (spoons!). Whatever I have left is spent stressing over fundraising! If the truth be known, I really don’t like the situation I find myself in and hate having to ask people for money. It’s all so time consuming, stressful and a little humiliating. I tend to be quite open with friends and family, but don’t share my whole life with everyone. Yet here I am sharing my thoughts and information on my life and my health with anyone who wants to read it!
With all my physical and emotional energy going in to fundraising, worrying about fundraising and trying to win the lottery, I know I am neglecting the people around me. I’m sorry for that.
If I owe you a text or phone call or an email, or a coffee or a night out, I hope you can bear with me while I’m so distracted with everything else. Please keep in touch xx
All of this has made me realise that life is going to be very different for me for the next 6 months or so. I’m planning to work hard at the fundraising until our evening do on 23rd February. At that point, I’ll try to borrow whatever is outstanding and get my treatment paid for. Then I’ll have 2 months to plan and prepare!
My trip to Russia will take a month and I’ll need to take things very slowly when I get back. I’m hoping normal service will resume by Autumn …that really does sound a long way away. I know I will have some wobbles on this journey and there’s a lot I can’t even think about yet, but at the moment, I’m feeling positive and determined, which will do for now!
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
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Thank you all so much for your continued support and kind words. It really means a lot ?
As you all know, I am determined to get HSCT for my Multiple Sclerosis.There is a lot going on in the background to try to get to that point, so I thought I’d update you on where I am up to …
My first choice would be to have treatment in the UK on the NHS, but it’s a huge challenge to even be considered for treatment here. I have started by writing to my neurologist to see whether he would be willing to refer me to the Haematology department and Manchester Royal Infirmary as a I know that a handful of MS patients have already been treated there.
I haven’t had a reply from him, but I have had notification that my November appointment has been rearranged and a double appointment allocated.It’s really difficult to know what to make of this – perhaps he is considering referring me and needs a double appointment to discuss it all?Or perhaps he is worried that I am considering going abroad and has arranged a double appointment to try to talk me out of it??!
Even if this referral was successful, the next stage is for a panel at the MRI to consider my case. The criteria for treatment are shrouded in secrecy, so I have no idea if I have any chance at all!
If this route doesn’t get me there, my next option is to try to get referred to the London panel.To do this, I would need to convince my GP to refer me to a London neurologist for a second opinion on my MS.
From the beginning I have been told that my MS has “unusual presentation”, so I would try to be referred to a neurologist I am aware of, who has a particular interest in patients with unusual presentation …he also has an interest in HSCT.
Both of these routes have a very small chance of success in terms of me accessing treatment. UK neurologists are on the whole, not particularly supportive of HSCT at the moment. I really think this will change in the future but we haven’t got there yet.
Which then brings me to the other option …clinics abroad.There are a number of countries where HSCT is available at high cost and in some cases, only for residents of that particular country.There are also several unscrupulous facilities offering “stem cell therapy” which does not include all the stages of HSCT, so is therefore ineffective.
There are two clinics recommended by UK support groups – one in Mexico and one in Russia.I have spent a lot of time researching the treatment at both, talking to previous patients and having discussions with my family and have come to the conclusion that the clinic in Russia is right for me.
If you haven’t done the research I have, it perhaps sounds a little crazy to be planning to go to Russia for such life changing treatment …but it really isn’t!They have many years of experience of treating MS patients, a high success rate and an excellent safety record.
For a while I planned to exhaust all UK options before starting plans for going abroad, but each option presents a long journey and I’m worried about deteriorating while I wait for all these processes to run their course.
So, here I am pursuing both options at the same time.
