hair – Another MS Warrior

126 Isolation day 18

I’ve been a bit unsure on whether to keep updating this blog at the moment. My treatment is on hold, life is on hold, in fact all our lives are on hold, the whole world is on hold. What strange times for us all.

I’m going to keep writing, because it really helps me to do so. I don’t mind at all if no one reads!

Well I’m now on day 18 of isolation and this time has been strange, interesting, unsettling, boring, frightening, calming and a million other things. The first few days were really tough. It really felt that I would never see my friends and family again, I was scared I wouldn’t cope being entirely in my own and I was worried about what will happen with my MS while waiting for the world to go back to normal.

Since then, I have managed to get myself into a new routine, to get on with work, to do a few jobs in the house and to mostly stay positive. There are times when it’s really hard. My little house can feel huge and empty and at other times, small and oppressive. Sometimes I feel desperately lost and alone, but powerless to do anything about it. I have lovely friends and family in my life and appreciate every single one of them. I have numerous people I could call or text or message but somehow I don’t – this is something I am working on. Most of the time I feel fairly upbeat, positive and optimistic. I feel grateful for what I have … my lovely home, my crazy cats, a job I love, my fantastic workmates and most of all, my friends and family. But sometimes the misery grabs me. I’ve always been like this but have always had options to go out do something, make plans, distract myself …it’s not easy to do that when you’re stuck inside your own four walls with only cats for company!

This is so true. Right now I am safe and I feel luck to be safe. I am able to carry on working from home and I have daily remote contact with lots of people. I know I am in a much better position than many are at the moment. I am only leaving the house for a daily walk in the local area and Niamh is doing my food shopping for me. I can manage like this for as long as I need to.

I am trying to push myself to walk every day, even when I don’t really feel like it and I’m finding that it really does lift my spirits. I have enjoyed spotting children’s pictures in windows and noticing all the good things about where I live.

I am lucky to live close to a beautiful park and am visiting when I can manage it.

I realise that we are all going through a period of adjustment at the moment and we are all still processing everything we are dealing with and the rapidly changing world in which we live. This will be taking a toll on us, even on a subconscious level. When we are unsettled by change, it’s the stability of relationships that gets us through. But relationships don’t quite feel right from a distance and that’s why I miss people so much and feel a bit out of kilter.

Apologies to anyone I have accidentally left out!

So, how am I managing my time?

Well I have discovered I feel much better when I stick to some sort of routine, so I continue to get up at my usual time and go to bed at my usual time. I am working from home 4 days a week, which is helping to keep me grounded and gives a sense of purpose. On the other days, I’m doing the usual housework, talking to friends and family, talking to my cats, trying a bit of yoga and meditation and making lists on all sorts of topics. There are a few jobs at home, like putting pictures up, that I haven’t got round to doing and I’m telling myself how lucky I am to have all this spare time To get these things done …I just need to muster up the motivation to actually do it!

If anyone has any top tips for coping with isolation, suggestions for new hobbies or activities I could try or ideas on how I can use this time to better myself, please send them my way.

Apologies to anyone offended by swearing ?

I also have an important decision to make …do I cut my fringe or let it grow?!

57 Ask me a question …some answers

When did you know you have MS?

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

Thank you all so much for your continued support and kind words. It really means a lot ?

41 Head and chin shave

Yesterday I received a message to have a look on Facebook. This is what I found …

Callum (the one with the long hair) is my daughter’s boyfriend and Calum is his friend (you can tell them apart by the number of l’s).

The message above says …

“Right then folks , this guy has agreed to let me shave his head and beard if we can raise £2k to put towards a great cause , have a read here. https://www.gofundme.com/another-ms-warrior If you’d like to donate please comment “ Callum’s head shave “ on this post so we know when we’ve hit the target and can get this guy looking 12 years old again ? Soon as we hit the target I will be posting a video for everyone to watch and laugh!”

Callum has been growing his hair for over 4 years now and has volunteered to, not only have it cut off, but to have his head and chin shaved too. Thank you Callum (I expect I will feel guilty about this one for 4 more years!).

Callum loves his long hair and has only agreed to give it up for a price … £2,000 Money and pledges are rolling in already …going bald is clearly an attraction! ?

The head shave will take place in early December and of course, we will update with photos/video then.

Callum will be donating his hair to The Little Princess Trust. You can read more about their work by clicking this link.

In other news, we have launched our Facebook page today …

Please click on the image and like, share, post ?