Dream a little dream

If you take time to stop and think about how your brain controls everything you do, how it generates your thoughts and how it governs our emotions, thoughts, actions…basically everything we do, it can become quite overwhelming.

I am learning that my brain is quite an interesting little fella! It generates thoughts and worries that I can’t control – it’s like a beast that is refusing to be tamed! However, I am trying and through the help of CBT, I’m sure I will whip it into shape. I have found it so interesting dissecting my thoughts and learning about the influences that impact me and therefore enable my unhelpful thinking patterns. We/I often react to a situation by responding to how it makes me/us feel and that then leads to me/us behaving in certain ways and reacting to it on a physical level i.e. something has made me/us feel stressed so in my case, I can’t sleep and this leads to me feeling fatigued.

So if I try to consciously think about something it might start to change my behaviour, emotions and reactions which will mean that my physical and emotional responses will also change. The way it is described in the book I am reading sums it all up perfectly; The way we think about something will determine how we feel, and the way we feel will often determine what we do.  (‘Overcoming chronic fatigue’ by Mary Burgess.)

It is a really tough thing to unpick. I am keeping an unhelpful though pattern log at the moment where I have to dissect my thoughts. Thinking about the various aspects of that single thought is hard. Seeing things broken down and written in black and white really brings home the truth behind how I’m feeling and how it is impacting me on a daily basis. However, even though it’s a hard process, it is helping me to challenge the way I react and respond to my thoughts/worries. Don’t get me wrong, at the moment it really isn’t changing the way I respond to certain things but it is in the front of my mind and I am noticing how after I have these thoughts, I dissect them a little and challenge them and it helps me to box them up and shelve them rather than dwell as much as I have been.

Our brains are such intricate organs and one that I will never fully understand! Sleep is still a bloody nightmare for me at the moment. I simply cannot fathom how someone who is SO fatigued just can’t sleep. Over the last three weeks the most sleep I’ve had in a 24 hour period of 5.5 hours. I am sticking to my CBT targets and setting an alarm in the day for a maximum 2 hour nap although I could sleep longer – why is that?! Why could I sleep in the day with no issue yet when it comes to night-time, I just can’t get to sleep? And when I do, I will wake up every 30 minutes to an hour and then remain awake for anything up to two hours?! I just don’t understand and although I know so many ME sufferers have this problem – insomnia and painsomnia – I can’t find any research or explanation for it?

I have always been a vivid dreamer – always in colour and I can often wake up remembering them. But over the last few months – really starting when I was taking melatonin – my dreams have become stunningly vivid. I have a least one dream that I wake up from a night that feels like real life and affects me on an emotional and physical level. Some are totally bizarre although I can relate them to something I may have watched on TV or read about but some are quite clearly linked to my subconscious and they are the ones that are having the biggest impact on me. They are so cruel, it’s like my brain is torturing me on yet another level and although the dreams are wonderful to “live” through at the time, they are a flippin’ hateful things to wake up from because I come back down to Earth with an almighty thwack!

I’ll give you some examples! Here are two of my more bizarre dreams of late!

  1. I was the right hand lady to the President of the United States who just happened to be Denzel Washington – I do love that man! He was in terrible danger and I had to defend him Jack Bauer style and I have to say, I was kick ass! The dream ended with him shaking my hand and thanking me and I replied, “It has been an honour Sir.” Ha ha ha I mean, this is obviously a dream concocted by someone who loves ’24’ and would love to be a real life super hero!
  2.  Tom Jones was my friend and he was about to do a concert but had very swiftly been struck with dementia so couldn’t remember any of his song lyrics! Mum was hysterically upset because no-one would ever get to watch the genius of Tom in concert again and the dream ended with me trying to find a cure for dementia.

And then we come onto my more upsetting dreams to wake from!

  1. The marriage dream. I’ve had several dreams where I am either getting ready for my wedding day or living my wedding day. I can never see the face of the man but I just know I can feel how happy I am. The dress, flowers, party – everything – is always beautiful and the happiness overwhelming.
  2. The engagement dream. Again, where I can literally feel how happy I am and how in love and the dream is based around telling people we are engaged and it’s all jolly and wonderful!
  3. The baby dream. I am either pregnant or have a little baby and again, totally in love and totally happy. The most recent and interesting dream linked to this is one I had last week; I was a single mum, pregnant and had consciously decided to use a sperm donor because I hadn’t found the right man but knew I wanted to be a mum! I had a C-Section and had a little girl!

These dreams are tough ones because they are all linked to my real life dreams – I would love to be in a happy relationship and have my own family unit and if any of you know me, I have always wanted to be a mum. These are all things that for now, are way out of my reach and are pipe dreams quite literally. So to wake up feeling so deeply the happiness and love and then realise it isn’t true is hard and it takes me a while to shake it and separate it from my actual reality.

I love a good dream and what I am trying to say here is how powerful our brains are. Even in our sleep they manage to formulate our conscious and sub-conscious thoughts, hopes and wishes and bring them to life. It brings me back to the fact that our brains are equally a part of our body as a leg or arm and need to be cared for in the same way. We may not be able to see the hurt and damage that our brains are dealing with but that doesn’t mean that it’s any lesser than anything else that needs care and attention.

So, as always, remember that not everyone’s demons are visible, they can’t be fixed quickly, people can’t just snap out of it and all they need is a shoulder to cry on, a listening ear and a good old laugh.

Happy Friday everyone.

#hairlesshannah

A very spoonie-fied blog

I’m sorry I’ve been absent for a while – well, almost a month now. There is no real excuse, especially when I know how writing helps me, but I just haven’t had the urge to write, I’ve had a slump and I thought that rather than force out blog posts that I didn’t really believe in, I’d stop. Pause. Take stock and tell myself it’s okay to take a break and come back as and when it felt right.

I am disappointed in myself that the month of May has been the time for this period of nothingness because it’s an important month for ME/CFS. May is ME awareness month as well as awareness for many other hidden illnesses. I’ve watched and followed eagerly how my little spoonie online community have raised awareness and done so much for the cause. Next year I will do more but for this year, all I can offer is this blog post.

I’ll start with a little fun fact; May 12th was Florence Nightingales birthday and it is suggested that she was one of the earliest sufferers of ME.  From 1857 she was often disabled by ill-health and spent much of her time bed bound; she is now considered a kind of patron saint for this under studied illness and this is why May 12th is used as a day for awareness. How about that eh?!

I then thought I would recap the main facts about ME, so I have used the main websites that I find useful and informative to provide you with the following:

The National Institute for Health and Care Excellence (NICE) provides three levels of severity for ME: mild, moderate and severe. This is how they explain them:

  • People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
  • People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
  • People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

I come under moderate. I won’t go on about my personal experience because I feel I’ve done that enough in previous blogs. However, progress has been made in that the 4-6 month wait for CBT has been destroyed and I have already had my first two sessions. Now, I know there is much debate about the usefulness and effectiveness of CBT for ME patients and I must admit, initially I was wary. But you know what? This is the only thing, the only offer of help I’ve had from the NHS so I am grasping it with both hands. I’ve gone into it with an open mind but also with open eyes. Luckily I made an immediate connection with the therapist and I trust her – both a bonus when you consider all the bad luck I’ve had over the past 20 months! We have set targets together to try to help me with my sleep – not working yet and as she predicted have made things worse before they hopefully get better. I like her because she is honest. There’s no BS, it might work for me, it might not but with everything crossed it could improve on what I live with daily and that’s enough for me thank you very much!

  • ME is a chronic illness which means it is long-lasting with no cure or guaranteed treatment.
  • ME is a physical disorder – having ME is NOT a state of mind and there is real scientific proof for this.

Life with ME has made me reevaluate everything about myself and my life, I guess a life changing illness will do that to you. It’s a terribly lonely illness. Yes I am surrounded daily by my wonderful family and I have constant contact with friends but I don’t have that connection with people anymore. I don’t have work banter, I don’t have social banter or random chats with people you may see when you’re simply out and about. I spend A LOT of time alone, sleeping, thinking…and that is lonely. It’s isolating and it makes daily life tough to face.

Raising awareness of illnesses like ME is so very important. Even doctors don’t know very much about them and patients – including me – often have to educate their GPs and specialists about possible medications, treatments and symptoms. It’s a frustrating situation that can be made easier by more people being educated and therefore having an understanding of what sufferers are living with on a daily basis.

Thank you for reading, thank you for baring with me and thank you for your continued support.

Have a lovely weekend.

#hairlesshannah

 

Catching some zzzzz’s

Sleep.

When you think about that word, what does it mean to you? Is it a thing of beauty, does it conjure up images of an inviting bed made up with the softest, fluffiest pillows and prettiest of covers beckoning you to snuggle down and rest and recuperate? Or does it simply mean a thing that you need and have to do in order to function for the next day?

Do you need a certain amount of it in order to feel human and happy?  What is your minimum amount that will allow you to be human and not become a monster when anyone dares to talk to you?! Are you a late nighter or a 10pm-er? Do you enjoy a lazy lay in or are you an early riser? Is sleep a thing just for nights, do you revel in a cheeky little nap or have you trained yourself in the art of power naps? Do you need to set an alarm or is your body conditioned to your work schedule?

Does sleep bring you a release? A place to be you, to be quiet and thoughtful, to dream and escape? Is sleep and your bed a place you welcome when you return from a holiday or can you sleep anywhere?

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Sleep, for most, comes naturally. Our body clocks know when we need it and how long for. Our bodies are very clever like that, it knows when we need more or when we can possibly cope with less. That is, until our bodies’ works against us and that leads to some very tricky situations as I have been learning. Sleep has become much more of a nightmare for me since becoming ill. Having researched more it is very clear that many ME CFS sufferers have this same problem; the feeling of overwhelming fatigue is there all the time, the ease to nap during the day out of necessity unlike in the university days when a nap just helped you for the upcoming night. Yet when it comes to the evening and the night-time, sleep seems to evaporate. Our bodies pain sensors kick into overdrive and sleep gets further and further from our reach.

I have never had issues with sleep before, I’ve always needed between 7-8 hours and that has always suited me well. But now, insomnia/painsomnia is in my vocabulary and it sucks. No one can really explain why this happens but it clearly does. As with the rest of the research with ME CFS, there isn’t enough of it to explain all of the side effects and symptoms. I guess it’s almost like when people say you’re overtired or you’ve had too much sleep and your body gets confused. But with my body, I can’t sleep because the pain intensifies and I simply can’t get comfy…even with my pregnancy pillow! I have tried sleeping tablets which to be honest worked a little but not enough and in any case, I can’t stay on them as they are addictive. I have started using herbal remedies but they just don’t seem to match up to the discomfort and insomnia.  I do manage to get some sleep when my body literally crashes but it is always broken and it is never deep, restful or refreshing.

I’ve tried everything in the depths of the night to distract myself from the pain and discomfort.  I’ve tried laying there and persuading my body to rest and sleep. I’ve tried watching box sets and TV programmes, listening to music and audio books, colouring, blog writing, pacing around my room every half an hour to move my stupid aching limbs. Nothing works and that’s when the frustration kicks in, that’s when the mind starts to act against you too and the endless thoughts go round and round your brain tormenting you. It’s such a lonely, scary place to be. It’s a feeling of being trapped and not being able to escape, a feeling of the unknown. And this goes round on repeat until eventually the body can’t take it anymore and shuts down and sleep occurs. Then I’ll wake every hour or so until I make myself get up ready for another glorious day!! Our bodies and minds really are a marvellous thing but sometimes I just don’t understand them. They are meant to be wired up to help and protect us so why do they work against us at times?

Sleep is just another thing I’m having to approach differently these days and that is just how it is. It’s not nice but it’s not the end of the world –  it’s just another thing I just never appreciated enough at the time..but then who does?

Hope you all sleep well tonight, sweet dreams.

#hairlesshannah

I, Hannah Green

Last week I finally got round to watching, ‘I, Daniel Blake.’ From the opening second I could feel my heart beating faster and stress filtering through my body – the scene was one of a conversation between Daniel and the DWP (Department for Work and Pensions) asking the medical assessment questions. Questions which will lead to you being awarded points which then determine what benefits you are entitled to. It is scored out of 15 and the questions go something like this: “Can you lift your arm above your head? Can you walk unaided for 50 metres? Can you walk to the bottom of your garden unaided? Can you show me how you take your shoes and socks off? Can you empty your bowels frequently?

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Yes, these questions and answers override anything your doctors or specialists have advised or done and if you score less than the 15 points they tell you that you are fit for work and therefore need to apply for Job Seekers Allowance. I cannot tell you how similar Daniel’s story is to mine. I scored 0/15 on my assessment. Zero. Zilch.Nada. So as with Daniel, I had my ESA (Employment Support Allowance) taken away – which I’d never actually received in the first place may I add – and was told to make an appointment for Job Seekers.

The character of Daniel is similar to myself. He didn’t want to give up without a fight because he knew he was entitled to something and that is what we have worked and contributed for all our lives. In the end I cancelled my Job Seekers interview after yet another frustrating conversation with the DWP. I tried telling them that although I was wanting to take my case for mandatory consideration, I was not willing to waste both my own and the people at Job Seekers when I wasn’t actually able to work! This they couldn’t understand. They wanted me to turn up and get advise on how to write a CV before applying – at this point I informed her I was a teacher and knew how to write a CV, again I was told, “In order to dispute your claim Miss Green, this is what we will need to see you doing.” Well I’m sorry, but I am not doing that, I am not willing to put myself through a humiliating session, being made to feel degraded and useless. So the route I am taking is to let the DWP know that my parents will be appealing on my behalf because I no longer have the strength to deal with their red tape and bs.

I won’t give away the whole storyline of the film, but you should watch it. It challenges stereotypes at every turn and gives an insight into how people could quite easily end up homeless on the streets. If I didn’t have my family or the back up of selling my flat, what would I do then? The reality is that once my money was gone, I would be homeless. I am sure the people at the DWP are nice people who are just doing as they are told but to me they are inhumane robots who don’t care, don’t see the real people, don’t consider what medical professionals are saying about your health. They talk to you like you are below them, like a piece of dog poo they stepped in on the street, they let you hang up the phone and cry because you feel so worthless. I wonder what they would do or how they would feel in the same situation?

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There is something fundamentally wrong with our society and our benefits system. I would give anything to be able to work, if I could I’d be down applying for Job Seekers ASAP but I can’t right now and regardless of what my GP, neurologist and ME specialists say, the computer still says no because I can lift my arms high enough to put a hat on my head! I know that the majority of people on benefits do genuinely need them, but I also know there are people out there who abuse the system and get away with it and that angers me beyond belief. All I want is to receive the benefits I’m entitled to so that I can help my parents pay the bills that I’m adding to by being back at home. I want to have some money coming in so I don’t feel totally dependent. I want to be acknowledged as someone who is worth the help and support, not someone who is a scrounger.

I, Daniel Blake is a very powerful film which highlights current issues in a true light, and I can say that because much of what he experiences mirrors what I have to. I have a very dear friend who is also having to fight for her sons rights, if you heard the details of their story your blood would boil on their behalf. The film should be watched by as many people as possible so that these issues are discussed – awareness can only bring positive outcomes. So watch, talk about it and take action if you feel you can. Our next step will be writing to our local MP, the injustice needs to be addressed.

I, Hannah Green feel abused by the system, but I’m afraid that as with Daniel in the film, they have chosen the wrong person and family. We will continue to fight and complain and make my voice heard..I just need to stock up on some spoons before I try again!

Just something for you to ponder on this Tuesday!

See you Friday.

#hairlesshannah

Guest Post: Paul Foley, brain stem glioma

Paul and his lovely family have been our neighbours for the last 17 years; they are not only neighbours, but our friends. Paul’s story is a tough one to read but one of great importance, not only because he is spreading awareness about his brain stem glioma, but because he has a question to ask.

He needs a new wheelchair to improve his quality of life – pop over to YouTube and search TEK RMD wheelchair and you will see how incredible it is. However, this chair costs £18,000. A cost that no family will be able to afford on their own. Then comes the next stages of his treatment, at a cost of between £50-100,000. So Paul and his family are reaching out to ask for help, for our help to raise funds to make these unthinkable improvements to his life.

Please read his story below and donate if you can, it doesn’t have to be much, every penny counts and no matter what you can afford, Paul will be so very grateful. Share the heck out of this blog post, share Paul’s story and share the link – if any family deserve your help today, if any family deserve your good deed for the day, then this is them. Thank you in advance for your support, love and kindness – I will now pass you over to Paul.

#hairlesshannah

Paul 1.jpg

Before I tell you my story, I want to share with you why I’m writing this guest post.

I’ve now had 5 courses of chemo and there have been some slight changes however, I’ve decided I need to be more proactive and having seen an amazing robotic wheelchair which allows users to stand and move around safely, I’ve set up a funding page with the aim being to get one of these to improve my life. Then there is the next course of treatment – a course of immunotherapy which will complement the chemo. The robotic wheelchair is approx. £18k and the immunotherapy as much as £6k per month. I have set the target at £30k knowing it would be more and the response so far has been amazing. We raised £20k in a week and are now just under £24k with about £15k expected from planned events. I suspect though we will need double that total for the treatment I need.

I head up to Guys tomorrow for chemo course no 5 and hopefully get some answers on cost and amount of immunotherapy: they will not provide funding for brain tumours on NHS – for other cancers yes, but not brain cancer. This is despite the fact that brain cancer is the biggest cancer killer of under 40s but receives only 1% of funding losing out to the more publicised (but controllable) cancers of breast, prostate, testicular etc.

So, if you would like to help out by organising a fund-raiser or simply donate, please head to this link and know that both myself and my family will be forever grateful. The page can be found on the gofundme.com website, search Paul Foley and you will get all the information you need.

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Now for a potted history of my story, by Paul Foley.

For two years leading up to a diagnosis in September 2012, I had a series of GP appointments where getting heard on the specific symptoms I was experiencing was a real struggle. Basically I had a dull, deep-seated headache that did subside gradually over time but I knew was different to any stress or migraine type headache I’d had. One GP helpfully told me to try Yoga as it appeared to be Spondylitis – I laughed and said, “no mate this isn’t muscular-skeletal, this is deep inside like a gland pain” – my exact words – Yoga, seriously?!

I then had 2 or 3 ‘episodes’ that Summer, brought on by heat (sauna) and alcohol, which all resulted in a prominent limp where I had to drag my right leg along – it just wouldn’t work. The next day I’d be wiped out but the limp was gone so I assumed it must have been a blip. Between June and August it didn’t seem to flare up other than having a weird feeling like someone grabbing the back of my neck in meetings at work. Then on the treadmill in August I noticed that the quicker I ran, the right leg just couldn’t cope so I’d stop and do stretches either side but the right leg still wouldn’t behave. So back I went to the GP and back to A+E for a scan…but still nothing.

On holiday in SW France in August 2016, I drove a camper van that week, there and back from the UK and that’s when I noticed that driving was getting tricky. The key turning point was one day in August when I woke very early and my whole spine felt wobbly and weak, I could barely walk. I wanted to walk my youngest to her primary school as I ‘wasn’t sure how much longer I’d be able to walk’ – I remember knowing I was in trouble. I have always known I was in trouble – the medical staff have always been on catch up unfortunately. I broke down on the park bench in the Rec next to her school as I just had a feeling this was very bad.
I headed straight over to the GP and eventually saw the right one – he listened, he knew more about neuro issues, no talk of Yoga – he agreed this was neurological not mechanical – I’d had ankle, knee, muscular injuries over a 20 year semi-professional football career and I knew this was different. He sent me with an urgent letter to take to A+E.  I went to the PRUH at Farnborough and there is where they found it, finally ,on the MRI scan. A lesion / blood / swelling at the bottom of my brain, a really bad spot…won’t be able to get to it so highly likely zap it with Radiotherapy and / or chemo. Bang. Shock. Relief they found something but please not an inoperable tumour. Pulled curtain back……silence, shock, fear, tears, some anger, resilience, creeping determination, some grit and a firm upper lip – I’m never giving up. 

So treatment – all arranged swiftly – all well explained by my very knowledgeable and straight talking consultant – I liked her, she was like a brain specialist version of Mary Portas. The options were limited to two – intensive daily doses of radiotherapy to the brain for 6 weeks and Chemotherapy if that didn’t work.

So every day for six weeks we went to Guy’s, getting zapped to the brain at their advanced Radiotherapy department using a machine that only hits the hotspot of the tumour reducing peripheral damage…supposedly. It didn’t though as I suffered hearing and taste issues to name but two. To ensure the tumour was getting hit they fit you with a bespoke heat moulded mesh mask which is bolted to the bed so you can’t move. You may have seen on the TV cancer ads running at moment. It’s not nice, it’s claustrophobic, you can’t breathe, swallow or cough at all. The only good thing is the zapping is quick, say 5 mins for all of the effort required to get there.

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One slog through rush hour to get home springs to mind as this commuting zombie who could clearly see I was shuffling along with my ticket in my mouth, whacked into me on purpose as I was delaying him all of 5 seconds. I dropped my ticket and hollered after him on a packed platform using my full range of expletives. I wanted to knock some sense into his thick skull but he scarpered up the stairs – he heard me ok – and like a Dalek I was undone by the stairs. As the weeks wore on and the dreaded steroids took a hold, I filled with fluid at every available void and my face got fuller, that bespoke mask fits a face that no longer exists. It’s tighter, more claustrophobic but don’t mention it,  just a few more sessions to get through.

As a bit of advice from someone who has blown up on steroids, if you want to pass comment – don’t. It’s just irritating. Pre-illness I was 6 foot 2, 14 stone and with low body fat and higher than most general fitness. I’ve never been bloated or swollen or overweight. So when people say ‘cor you’ve put on some timber’ or ‘you’ve blown up’ it is just going to grate. Yeah I’m ill, I’m on horrible drugs that just fill you with fluid, I can’t move – funny my body shape has changed! The things people say to you when you’re ill never ceases to amaze me. So many ‘friends’ I just can’t be bothered to talk to anymore – illness polarises your attitude to friends.  Some are brilliant and surprise you and some are just so self-absorbed in their own world they just don’t get it. It is a cliché but illness just strips away the things that don’t matter and you really notice it in others and you get a great radar for selfishness. I couldn’t care less about the weight gain (4 stone currently) it’s a by-product of the illness but the daft comments can do one! I get uncomfortable because I can’t move so well as I’m bloated but it’s just how it is, no more knocking out ab crunches on the bench – I’ve come to terms with that – seemingly others haven’t.

So the treatment finishes and towards the end I start to get a spasm/twitch during zapping – that can’t be good. I can’t taste anything and my hearing goes all ‘electronic’. I asked the pleasant Radiographer about it who replied, “oh didn’t they tell you that?” – unfortunately an all too familiar comment over the next 4 years. She showed me a coloured image of my head which actually shows in ‘glow’ the peripheral damage as the radiation goes through healthy brain tissue. This is the first time I’ve seen this. There is not enough explanation or understanding around radiotherapy especially to a highly vulnerable and sophisticated organ like the brain. You are putting radiotherapy into your brain through healthy parts to get to a tumour – just stop and think about that for a minute! There is a lot of publicity around the Gamma knife and Proton Beam therapy machines with the Proton option being the one the family took their young child abroad and paid for treatment. Young brains that are still developing are more prone to damage from ‘standard’ radiotherapy – they don’t care so much about the older messed up brains. Well, the NHS paid millions for two Proton machines but couldn’t afford to run them – I believe there are some up and running now. The principle makes sense if you imagine a clock face Proton delivers a spread of safer strength beams at 12, 1pm, 2pm and so on which all focus in a concentrated point at the tumour with hardly any peripheral damage. It would have been preferable to have this treatment.

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That continued for three years of ‘stability’ as they call it which basically means you will get symptom changes, numbness, loss of feeling or some movement, reduced endurance etc but if your MRI scans show the same then you are ‘stable’. In some ways it was stable, I was making it into work most days, I was limping around but just about able to do what I had to do. I was getting lifts to work for a while and then back driving when I was able. 

Then around September 2015 things started to deteriorate, I was having to stop more frequently and ‘re-set’ my walk. It got worse and worse and I could barely cross a road in one go. Getting upstairs was very difficult. This changed quickly over the next three weeks to the point I couldn’t stand for long and started to stoop making tea etc unable to stand up straight the back muscles just giving up. I told the hospital every time a new symptom appeared and they advised that the scans were showing ‘no change Mr Foley’. By Christmas I was really struggling to even get around the house and some nights couldn’t make it up the stairs. I couldn’t get my right sock on, eating was one-handed now, shaving/using toothbrush etc, I couldn’t get in and out of shower anymore so it was sitting by the basin and washing. One day at home I stood up to do my belt up and just as I went to fasten it I fell like a tree without getting my hands out onto the breakfast table smashing my nose and rolling off onto the floor. No one was in and I couldn’t get up, so rolled my head onto the timber floor to save the gushing blood from ruining the rug. Hannah’s dad had to rescue me as no one else could lift me off the floor.

A few weeks later another fall, this one as I went to transfer from wheelchair (which I was in now) to toilet but as I stood my leg locked and I fell against the tiles holding my body at 45 degrees with my all of weight-bearing onto my head. I called out, managed to slide down onto the closed WC putting my chest onto the toilet and then sliding onto the floor where I was unceremoniously dragged into the hall to wait for the ambulance to get me into my chair as it was 2am – we couldn’t ask Richard this time! We waited two hours on the cold floor, they got me back in the chair, ran tests and it was 6am before we knew it.

In February 2016 the decision was reached to put me on a 6 month course of chemo ‘empirically’ which basically means ‘without any clinical reason’ so try it and see. I was happy with this though as I was desperate to try something. Then around September  2016 the decision was made to switch chemo to a more powerful chemo, PCV. Around the same time Matt called home with some interesting news, the medics at Oxford had found an extremely rare and specific antibody only found with a condition called Devics or NMO. It could be managed much like MS and may be an improved prognosis but more tests required. So they ran tests alongside continuing the current treatment plan of chemo until we know for sure. A month later the experts told us it is categorically not Devics, despite the presence of a Devics specific antibody. A huge disappointment as an improvement possibility disappeared and the communication + management had been very poor.

I’ve now had 5 courses of the chemo and there have been some changes however,  I’ve now decided to be more proactive and having seen an amazing robotic wheelchair which allows users to stand and move around safely, I decided to set up a funding page for this and a course of immunotherapy to complement the chemo. The robotic wheelchair was approx. £18k and the immunotherapy as much as £6k per month. I set the target at £30k knowing it would be more and the response was amazing. We raised £20k in a week. We are just under £24k with about £15k expected from planned events. I suspect though we may need double that total.

I head up to Guys tomorrow for chemo course no 5 (of new chemo) and hopefully some answers on cost and amount of immunotherapy: they will not provide funding for brain tumours on NHS – for other cancers yes, but not brain cancer. This is despite the fact that brain cancer is the biggest cancer killer of under 40s but receives only 1% of funding losing out to the more publicised (but controllable) cancers of breast, prostate, testicular etc.

Hopefully I get answers, hit my fund target and get continued improvement on my mobility.

Thank you for reading my story, for sharing it and for possibly being able to help me raise the money I need. 

Paul Foley