visa – Another MS Warrior

123 Treatment delay

I had a blog post prepared to publish this morning, telling you all about the arrival of my visa, rearranging flights, sending payment and getting everything ready.

Unfortunately there has been a change of plan …
This morning I received an email from the hospital to inform me that the Russian Health Minister has put new restrictions in place for all travellers arriving in Russia, due to the corona virus. Anyone arriving in the country must immediately begin two weeks of self isolation and the hospital would be unable to admit me until this was completed, followed by a medical examination. I’m not sure I could manage two weeks locked in a hotel room on my own.

This arrangement would also mean me being away from home for six weeks in total and mean that I would be travelling home at the end of April. In these uncertain times, this just feels too far away for me. Who knows how much worse the corona virus problem will be by then?

Obviously I have been watching developments closely over the last few weeks. I have increased hand washing and tried to reduce how often I touch my face (how difficult is this??!).

I haven’t succumbed to panic buying (well, only of creme eggs!) but have worried about the lack of certain items in the shops, especially hand sanitiser and soap. I have mostly remained unconcerned until the last few days.

Today I have noticed an increase in very concerning facts in the reporting on the corona virus. Many countries are now putting restriction on travel, public gatherings are being cancelled and even school closures in some places. The UK government has decided we are moving from the “Containment” phase to the “Delay” phase of our response. I have come to accept that now is not a good time to have a suppressed immune system.

This is the current UK advice … BBC link

This evening I have heard that hospitals in the UK have suspended HSCT treatment for MS and for cancer (other than in life or death situations) for the time being. The MS Society has issued this advice …

“HSCT is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells. This treatment greatly hampers your immune system for a period of time and you and your neurologist or healthcare professional should consider delaying this treatment.”

MS Society link

Today has been a really tough day. I don’t think I realised just how much all the mental preparations have taken out of me and also of my family. We are crushed …but not giving up.

I also realise that there are lots of other people affected by this and who are having to make difficult decisions, many of them in a much worse situation than me.

As far as future treatment goes, I’m in a good position, in that the hospital has already accepted me for treatment, the funds are in place and I’m ready to go as soon as the situation improves. In the meantime, I’m going to focus on staying well, washing my hands, not touching my face and some “social distancing”.

I have a lot to sort out. I’ve no idea if I can get any money back from the flights I have booked and I need to see my own doctor to talk about how I manage for now. I also need to work on my stressed head!

118 Progress update

With just 5 and a half weeks until my trip to Russia, my travel plans are coming along nicely. My flights are booked and all necessary paperwork has been sent to the hospital ahead of my treatment. My transfers between the airport and hospital are booked and family are ready to transport me both ways at this end. The hospital is processing my visa invitation and I am hoping to receive this very soon.

I have started buying bits and pieces I will need whilst in hospital and when I get home and it really feels as if things are coming together at last. When we get a bit nearer to my departure, I will post my packing list, in case it’s of use to any fellow MS Warriors in the future.

When I get home after my treatment, my immune system will still be very low and it will be necessary for me to take precautions to avoid infection. I will be asking friends and family to stay away if they are unwell and will be avoiding certain foods such as soft boiled eggs, blue cheese and sushi. I will also be keeping the house scrupulously clean. Niamh and Sophie have volunteered to do a “deep clean” shortly before I come home and we will need to be obsessive about wiping surfaces, light switches, handrails etc to lower the infection risk. We will use anti bacterial hand gel regularly throughout the day and most importantly of all, I’m going to try really hard to keep my hands away from my face (the number one way in which we catch infections).

Arrangements are in hand for my blood levels to be monitored by my GP on my return (with support from Haematology if needed). My GP will also be providing “fit notes”, which Niamh will collect and pass on to my employer while I’m away.

Something I Have had to give a lot of thought to, is how to avoid any risks from my two cats, Ziggy and Luna.

Thankfully neither of them are biters/scratchers and it’s fine for me to touch and interact with them, provided I wash my hands afterwards. We have already ensured that their immunisations are up to date and I will make sure to avoid cat litter duties for the first few weeks. The biggest cat problem I envisage is keeping them off my bed and out of my bedroom 😼

I love having plants and flowers in the house but both soil and flower water are potential sources of bacteria and fungal spores. I am going to send all my houseplants to Connor and Sophie’s house for a while and will be politely requesting visitors don’t bring flowers.

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As you are aware, we have been fundraising to pay for my treatment for some time now. The cost of treatment is 45,000 Euros and with the value of the pound so unsteady at the moment, I find myself anxiously watching the financial markets to see where it is up to. There was a big dip earlier this week, which sent me into a bit of a panic! I’ll be so glad when I’ve made the payment and can stop worrying about this so much!

Our GoFundMe appeal has raised £21,181 so far … thank you to each and every one of you. We have a few fundraisers in the pipeline and will continue after my treatment, until borrowed funds are replayed. If anyone has any fundraising ideas or would like to do a sponsored event, please get in touch with one of us.

At this point, any and all donations will be gratefully received via the GoFundMe page linked below.

GoFundMe

Thank you for all your amazing support over the last 18 months …I can’t believe we’re almost there at last! 😘

115 Planning for Russia

Planning for my trip to Russia for HSCT is well under way now, so I thought I’d share with you where I’m up to.

A visa is required for travel to Russia and the process for this is rather complicated. I am waiting for an official visa compliant invitation from the hospital and once this arrives, there is a long and detailed online form to compete, followed by a visit to the Russian Consulate in Manchester. Shortly after that, my passport will be returned, containing a 90 day single entry Russian visa. I am hoping to find time to book my flights in the next few days and will feel quite relieved once that’s all done.

Then it’s just preparing the house and things I will need on my return, sorting things out at work, finalising plans for my aftercare and packing my suitcase to do! I am already compiling lists. My mum was one for writing lists and I often think of her when I’m in list writing mode ❤️

As the time draws nearer, friends and family are naturally asking lots of questions about how long I will be away, what the treatment will involve and how I’m likely to be when I get home. I thought I would try to answer some of those questions here.

I will be in Russia for a total of 30 days from Monday 16th March until Wednesday 15th April. I plan to travel on my own, basically to keep costs down. I have spoken to many others who have travelled alone without difficulty and know how to plan for the journey home.

The first few days are taken up with pre treatment testing. This is to ensure there are no hidden medical conditions which could be impacted by HSCT. There is also an opportunity to have a full MRI scan of the brain and spinal cord in one of the higher strength Russian machines, which can show greater detail than the UK MRI machines. During this time, there is also a bit of down time, during which I’ll be able to go outside, mix with other patients and hopefully squeeze in a bit of sightseeing.

The exact protocol used varies from clinic to clinic, but at the Moscow hospital, the timeline is as follows …

Day 1 – 4 Examination and final decision on treatment.

Day 5 – 8 Stem cell mobilisation Drugs are used to stimulate the bone marrow to produce extra haematopoietic stem cells and release them into the blood. These stem cells can develop into the cells of the blood, bone marrow or immune system.

Day 8 – 9 Stem cell harvesting – An apherisis machine is used to extract stem cells from the blood. These are then frozen until needed.

Day 9 – 12 High dose immunosuppression (chemotherapy)

Day 13 Stem cell reinfusion

Day 14 – 27 Haematological and Immunological recovery – Isolation – the body builds a new immune system using the reinfused stem cells.

Day 29 – 30 MoAb-Rituximab and discharge

It is important to note that it isn’t the stem cells that treat the faulty immune system (the root cause of MS), but the chemotherapy that partly destroys the faulty immune system, allowing a new healthy one to grow. It is thought that a new immune system would eventually grow following chemotherapy, without the introduction of stem cells, but by providing the transplant, recovery is much quicker and the time a patient has a compromised immune system is significantly reduced.

Through the Facebook HSCT support groups and by reading numerous blogs, I have followed the journey of many patients travelling to Russia and through treatment. I feel I have a good and realistic idea of what to expect …and I believe I will cope and it will be worth it.

Isolation

The period in isolation is not as alarming as it first sounds. The reason for isolation is to reduce the risk of infection whilst the immune system is at its lowest. There are regular visits from medical staff and your developing immune system is monitored daily via blood tests. Once the medics are happy with your blood results, you can leave your room and mix with others again. I see the isolation phase as a time to rest and recover and allow the body to heal and repair. I will have access to TV, Netflix, Facebook, Whatsapp, my kindle, phone etc and will be able to keep in touch with family and friends (as well as updating this blog!). I’m not worried about coping with isolation.

Hair Loss

Yes, I will most likely lose my hair!

The chemotherapy used causes hair loss in virtually all patients and the use of cold caps is not recommended. I quite like my hair so was a bit bothered by this when I first read about HSCT, but I’m feeling fine about it now. Other patients have spoken of the liberation of baldness and I’m looking forward to seeing what it’s like! I can’t see myself bothering with a wig so will be spending some time researching funky scarves and head wraps over the next few weeks.

Once I am home, my GP has agreed to manage my aftercare. This will mainly involve monitoring my bloods to ensure my immune system is regrowing. When first home, I am likely to be tired and in need of peaceful rest. It is important to keep the house spotlessly clean, to eat carefully (to avoid infection) and to avoid contact with sick people. My amazing daughter has arranged to take some time off work to take care of me and I am so grateful for all her support.

Recovery varies enormously from person to person and is often described as a rollercoaster. The general advice is to eat a safe and healthy diet, slowly build exercise and movement, but most of all to have a positive mental attitude … or as Dr Federenko advises …

GoFundMe

106 Vintage items wanted!

I have some exciting news I want to share with you …

My lovely friend, Sheila, will be running a stall at the next Stockport Vintage Market to raise funds towards my treatment.

The Market takes place on Sunday 10th November from 10am till 4pm at Stockport’s beautiful historic market hall.

Do you have anything you could donate to our stall?

Vintage clothing
Collectibles

If you do, please pass them on to one of us, or let us know so we can arrange collection. If you’re not sure if something you have would be suitable, please get in touch and we’ll let you know.

You can find out more about the Vintage Village on their website here … Stockport Vintage Village

And on their Facebook page … Vintage Village at Stockport Market Hall

Both are well worth a visit for their fabulous photos alone!

Thank you so much to Sheila and also to Alan for making this happen.

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We are working on a few other fundraising ideas and will share those with you once our plans are a little clearer.

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My plans for treatment in Russia in March are coming along nicely. I have updated the hospital with my most recent medical information and the process for a travel visa has begun. I’m feeling very positive about my plans now and can’t wait to destroy the MS beast!

Thank you all for your ongoing support 😘

GoFundMe

78 The countdown begins

My flights to Russia are booked!

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.

71 I can see!

This week I collected my new glasses from the opticians …they are amazing …I can see!

I first wore glasses as a small child until the age of around 12. This was for a squint and a tendency to being long sighted. I spent quite a lot of time having tests, wearing patches and visiting the eye hospital. After that, I think I last had my eyes tested when I was about 20!

Over the last few years I’ve been buying off the peg reading glasses and have reached the point where I can’t manage without them! Primark and Aldi have provided my optical services and I haven’t spent more that four quid for a pair!

A couple of months ago, I was advised by an occupational therapist to get my eyes properly tested. Apparently this is very important at my advanced years and even more so as I have MS!

Optic neuritis (inflammation of the optic nerve) is a very common MS symptom, in fact it can often be the first symptom MSers experience. It made sense to get my eyes checked.

I decided to go to a qualified medical optometrist, rather than a high street optician and was glad I did. I am now the proud owner of not one, but two, new pairs of glasses!

It turns out I need one pair for distance and one for reading (I can’t have varifocals because of my balance issues) so I’m now nearly £400 worse off. But things are now much clearer …I can see to read and can see the computer screen at work and (as the optometrist pointed out) with my distance glasses on for driving I “can see the whites of their eyes when I hit ‘em!”.

The optometrist was also able to check the health of my eyes and could see that my optic nerve is in good shape and free from neuritis.

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Life feels very hectic at the moment. There’s so much to do to be ready for our evening fundraising event and I’m also starting to plan for my trip to Russia. The clinic is working on my contract and other paperwork and I’m in touch with a visa agency and starting to look at flights.

The other big development is that I have made some decisions about my travel to and from Moscow. I’m going to make the outward journey on my own. I’m not worried about this and the hospital will arrange to meet me at the other end. I’m expecting the return journey to be a little more tricky as I could be feeling quite weak and tired and I need to do all I can to avoid infections. My lovely friend, Karen, has offered to travel over so that she can make the return journey with me. I’m so grateful for this and now feel the journey home is something I don’t need to worry about. Thank you Karen xx

There are still tickets left for our evening event …get them while you can!

GoFundMe