Learning to let go…

Firstly, I’m sorry I’ve been MIA on my blog, no real reason, just life. But today I felt the urge to write again, it’s my go to self help and therapy when I need it to be I suppose.

I’m writing in a new space today though, in my flat. In my very empty shell of a flat whilst a man is cleaning my oven..I joke not! It’s a very surreal time. I have convinced myself of all the reasons why I’m having to sell and the positives that come with it but at the same time, I am unfathomably sad about it all.

I bought this flat almost eight years ago. I worked hard for it and the sense of achievement I got when I moved in was huge. It marked a point in my life when I was secure enough to be able to move forward from the after effects of jury service and live alone, move forward, be independent. It was exciting, a new chapter, something for me to be proud of and it was the best feeling ever.

This flat has seen some brilliant times – Halloween parties, birthdays, gatherings for all occasions, any excuse really. It’s seen two eventful room renters for which many stories can be told and endless hours of DIY for my dad! It’s been a safe haven, my own space and I truly have been so lucky to call this place my first independent home. For any other single pringles out there, you’ll totally get the hardship that comes with being a singleton trying to get onto the housing ladder– it’s bloody tough when you’re on your own and that’s what made finally getting my flat such an achievement.

My flat is the last thing I was clinging on to for dear life, my aim to get better and be able to live here again. But sadly, for powers totally out of my control, that can’t happen and the choice and dream has been taken out of my hands. I know that one day I will be able to start afresh somewhere new, I know once it’s sold it will be a stress removed from my shoulders however, I think it just highlights the unfairness of my situation and demonstrates once more what ME robs from people.

By selling my home, that’s the last thing that essentially makes the life I made for myself, gone. I’m no longer a teacher, a traveller, a home owner. I’m back to square one and regardless of how I try and put a positive spin on things, it hurts and it feels like one more thing to mourn. And I won’t dwell on it too much because it won’t change the situation or do me any good, but I am allowing myself a little time to process and get it out of my system I suppose. Then, I’ll toast the good times and look forward to the next chapter as and when it comes.

I go through phases where I am totally in control of life and my mental and emotional well being and then, like most things that seem to happen to me, a lot happens all at once and I can’t keep things in check. I guess with hope there’s always the danger of it being dashed. That’s why I don’t hope for too much at once and take the little things as and when I can. ME is just such a random, uncertain illness – there’s almost no point in saying, this time next year you’ll be able to do XYZ, because you just don’t know. I might be able to do XYZ in six months but equally it might take another two years. I’m learning to accept it more and am trying to be at peace with it because like I said before, I can’t do anything about it, but what I can’t silence in my mind is how much I hate it. I really do hate it. It has stolen so much from me, I’m not in control, I miss my independence, my life before.

But, life goes on and I do believe things happen for a reason, (if anyone would like to shed some light on this, I’d love to hear it!) so, for now, I’ll enjoy the fact that a man is cleaning my oven and that I don’t have to do it or ask my parents to, I’ll sit here and quietly remember the fun this place has seen and dare to dream a little about what lies ahead.

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I hope you’ve all had a lovely weekend and are still enjoying this freakishly long sunny UK Summer!

#hairlesshannah

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Lessons & goals

I turn 32 tomorrow so I thought I would document my lesson learned from my 31st year.

This month marks a year since starting CBT. I was so apprehensive, cautious and dubious about starting because I’d read so many controversial things about it. And there lies lesson number one: don’t judge things based on others opinions. For me, I fell on my feet with my therapist, she is the best. Her knowledge of ME and her approach to how CBT is used is amazing. There is no pressure, major target setting or trying to push me. It’s been more about helping me learn how to cope, helping me deal with how hard it’s been on my mental state and gradually helping me to build in activity, manage my sleep and focus on the good.

Lesson two: social media has so many more positives than negatives. I have made some truly wonderful friendships online this year through Instagram. All of whom live with ME or other chronic illnesses. It’s a comfort to talk to people who truly get it, share our days, struggles, highs and lows but also have people to turn to, to ask questions.  Social media is often shown in such a negative light but for me it has mainly given me positives. That online network is a life saver for so many and I love the way it makes you feel less alone in times when it feels like you are.

I actually started a little hashtag a few months back #truthfultuesday where people who live with hidden illnesses can be one and honest about their days. We often hide away the truth of our days from social media as many of us like to keep social media a positive place but I thought it was important to also be honest about the reality of living with our illnesses. It has been so lovely to read about people’s daily lives – the good, the bad and the ugly and raise awareness through this hash tag. I hope people will continue to use it, especially this month as it’s ME awareness month.

Lesson three: I am more stubborn than I realised! On reflection I have noticed a pattern running through my life. I don’t give in easily. If I see or experience injustice, I can’t simply push it to one side, I have to try to find a way of turning a negative into a positive, to ensure others don’t experience what I have. This year it seems it’s been about  my GP. I know my energy would be better spent on focusing on treatments and unexplored options but first I need to do my best to ensure she knows the damage she and other ignorant GPs cause to those living with hidden illnesses. I am also aware that I need to learn to experience such things and be able to move on without the fight. That’s a goal for my 32nd year!

Lesson four: despite what the quotes say, sometimes it’s okay to just have a crap day and not be able to find any positives! As long as those crap days don’t turn into crap weeks and months then you’re allowed to just have bad days. I still firmly believe in trying to find positives in each day, I use my Dawn French diary as a place to write down 3 good things in every day and sometimes that’s really tough. But then I think – I have a roof over my head, I have wonderful friends and family and there’s always a good home cooked dinner!

And then I find myself thinking about the year ahead and I’ve made some little goals for myself.

Goal one: learn to start conversations to talk about how I am feeling when I’m not having a good day. I can open a lap top and easily write a blog post but for some reason I struggle big time to start a conversation to get things off my chest. No matter how much I know it will help me, it’s something I find really hard, like I’m afraid if the tears that will fall but that’s stupid so, this year I will try harder.

Goal two: continue to focus on my CBT targets and mental health and focus on the small steps forward rather than the steps backwards.

Goal three: Reduce my time catastrophising and mind reading. These are two thinking patterns that have been uncovered through CBT that I do A LOT! If something happens i tend to catastrophise, think of all the worst possible outcomes, rather than taking a step back and being slightly more rational about things. I also mind read a lot.  I guess what people might be thinking about me, what they might be saying behind my back…and where does that get me? Nowhere. It’s a pointless thing to do so I am going to try to eradicate that and if I’m worried, I will talk and ask questions and move on.

Goal four: plan and book in more fun things to do. I am now so frightened of pushing myself and doing things slightly out of routine that I have just simply stopped doing them. Regardless of what hand you’re dealt, you really do only get one shot at life so I am going to do some more fun things this year. Yes, I will pay for it, yes I will be in pain but then..maybe I won’t be. I’ll never know if I don’t try right?! I’ll aim for one bigger thing/event every couple of months and see how I go, with things in place to help and many days of good pacing surrounding it…no guilt here for telling you what I do, that’s something else I’m going to stop doing. If people look at me doing such things and judge me and doubt me, they aren’t worth my time. Out of my circle they go!

So that’s four lessons and four goals – I had more but I’ve run out of steam and the screen is hurting my eyes sooo self-care is kicking in! I hope you all had lovely bank holidays and have a fab rest of the week.

Happy Tuesday.

#hairlesshannah

 

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What makes me, me.

The first task to tackle in my Dawn French ‘Me You Diary’ was to list everything that I am. I thought I’d find it quite difficult but actually, once you open your mind it’s easy to do. For example, I started with the easy things: a daughter, a sister, a friend, a teacher but then, having looked at Dawns very funny list I went to town: a baker, a music lover, a listener, an Idris Elba fan, a Neighbours watcher, an author…you get the idea. However, this then lead to me thinking about what makes me the person I am – partly a nature, nurture line of thinking but more intrinsically, it got me to thinking about the people who have helped me become the person I am.

Throughout our lives, from day one, we encounter people who will influence us. Some in a negative way but on the whole, no matter who we meet, they will teach us something. From a very young age I knew I wanted to teach or work with children and this was partly down to my parents but really it was down to the teachers that I had at Primary School – the ones who cared, were kind and helped me, accepted me for who I was and always encouraged me to try my best. I think throughout our school, college, university and work lives we will work with people who expand our knowledge, challenge our thought processes and teach us new ways to approach things. I really do believe you are never too old to learn something new.

When I looked at my personal life, I thought about the people who are in my life now and those who aren’t and everyone that I though of, I could name something they taught me. Something that they contributed to making me, me. Granted some of these things started with, “They taught me to never be….” but that’s just life and negative experiences often mean you become a better, stronger person anyway.

For me, I have been shaped from a huge circle of my parents friends. My mum and dad have the most amazing group of extended family! They have taught me to cherish, respect and nurture my friendships, to never take them for granted and they have done that through holding parties, dinners, writing emails and letters and visiting people whenever they can. It’s so important to maintain friendships because they are what gets us through not only the tough times but are who you want by your side to experience all the happy times too.

I am lucky that I have a strong unit of close friends too and over the years they too have taught be invaluable lessons. One main one being, that you do not have to remain friends with someone if they cause you hurt and stress. Just because you’ve had good times, like with a relationship, sometimes things can’t be fixed and that’s okay. You wouldn’t stay in a relationship with someone who makes you unhappy so why do that with a friendship? It’s a really hard lesson to learn but one that many experience and eventually, you’ll remember the good times but move forward knowing that you only have friends that truly get you, understand you and accept you for who you are, faults and all.

My friends and family have also shaped me into a person who tries to see that the glass is half full. Being positive helps in so many aspects of life and whilst I am a terrible worrier and can have a moan with the best of people, I have definitely moulded myself into someone who tries her best to see things in a positive light. And that ties in with checking myself in terms of ensuring that no matter what I am going though, to still be aware of what is going on with others – we are all going through something or other and it’s so important to talk, share and face things as a unit.

Something I have learnt within the last 5-10 years is to stand up for myself more. To speak the truth, ask for help when I need it, be brave enough to speak up when something isn’t right, say no to things that I disagree with or don’t want to do and try not to feel guilty about it. These lessons have come from a whole range of people – work colleagues, therapists, parents but mainly it’s been something that I have wanted to change about myself. Being a ‘yes’ person can have many amazing connotations but saying yes all the time can also get you into a tired, bald, stressed out, ill human being state and nobody wants that! For a long time by saying no, speaking up etc I felt guilty and selfish but I now see it as looking after myself. Self preservation would now feature in my top 3 of what I do to look after myself. Making those simple changes are hard to do and you have to be brave enough to implement them and if you’re like me it’ll be a phased introduction into your life but believe me, it’s totally worth it.

Time. This is something we all have to give. It’s free and you can always make it. I am a real advocate that if you want to make time for someone, you can. Simple as that. No arguments, no excuses. If I can manage to stay in contact with one friend in Dubai and one in Chicago, all in different time zones, we can all manage a quick – Hi, thinking of you, how you doing? – text.

The majority of people who have been in my life have the most amazing sense of humour. Laughing keeps you going – living with my mum teaches me that every day! Yes, we all have days where we don’t want to laugh or be merry but if you can find humour in a situation, a smile will make you feel lifted and again, this is something that I try my very best to do.

Take opportunities that come your way. Sometimes you have to face your fears and do it anyway. My family has always been of the thought that you should try new things, stretch yourself and have adventures. Grasp opportunities as and when you can because you never know when you’ll have that chance again. Over the years I’ve had dance lessons, swimming lessons, singing lessons, become a life guard in America, learnt the violin (badly), flown in a helicopter, lived and worked abroad, sailed around the Whitsundays, hiked the Grand Canyon, helped in an elephant orphanage, seen the pyramids in Egypt…and in turn they have shaped the person I am. They’ve given me life experiences and memories to talk about with others and made me a much more rounded individual. I’d rather have an album full of photos and diaries full of memories than a bank full of money and nothing to talk about!

I could go on forever about other things that make me, me but put simply into a list, here are my top tips for what’s helped me become the person I am today.

  1. Surround yourself with family and friends
  2. Don’t be afraid of self-preservation
  3. Give time and spend time with interesting, fun people
  4. Have adventures and experience all that life offers you
  5. Laugh often
  6. Be positive
  7. Learn from others – let bad experiences shape you as much as the good ones
  8. Don’t be in any kind of relationship that is a detriment to your own happiness
  9. Keep learning
  10. Never apologise for being you.

Point 10 is one I am beginning to take on board more. We recently went to the cinema to see ‘The Greatest Showman.’ If you haven’t seen it yet – GO! The main song has become a bit of a personal anthem! It’s called This is Me. The more I listen to the lyrics, the more chords are struck within me. I’ve hidden away so much because of how I feel about myself – “I’ve learned to be ashamed of all my scars, run away, they say, no-one will love you as you are.” That sums me up in so many ways. But it turns into a song that is about empowerment, taking strength from bad experiences and that we are all glorious in our own ways. So I’ll end the blog with a verse and chorus of the song that brings tears to my eyes but also gives me strength…check out the video on YouTube of Keala Settle singing the song in the audition room to get the film green lit…if that doesn’t make you cry, I don’t know what will!

“Another round of bullets hits my skin, well fire away, ‘cos today I won’t let the shame sink in. We are bursting through the barricades and reaching for the sun, we are warriors, yeah that’s what we’ve become.

I won’t let them break me down to dust, I know that there’s a place for us, for we are glorious.

When the sharpest words wanna cut me down, gonna send a flood, gonna drown them out. I am brave, I am bruised, I am who I’m meant to be…this is me.

Look out ‘cos here I come, and I’m marching on to the beat I drum, I’m not scared to be seen, I make no apologies….this is me.”

Happy Thursday.

#hairlesshannah

 

Life would be boring if we were all the same

Grief isn’t really a word I’d associated with my life over the past 18 months until my one-off psychotherapy session. Grief tends to be associated with the loss of a loved one, describing any other form of loss as grief hadn’t really occurred to me before. Yet once I started to ponder this thought, I’ve realised that I have experienced an awful lot of grief on many differing levels and I haven’t dealt with any of them properly.

Since a young age I have most definitely been a person to put on a brave face in front of people because I never want to be a burden. I don’t want to impose on people and add to the stresses and strains they are inevitably dealing with in their own lives. Now don’t get me wrong, of course I confide in my friends and I do talk to my family…when it’s pulled out of me…but on the whole, I like to think I can deal with things, work them through, on my own. But at this golden age of thirty, as this never-ending illness keeps its nails firmly dug into my every being, I’m learning that I can’t always cope on my own. Not as well as I’d like to think I do anyway!

Grief is a process and a process dealt with differently by every human and that’s why it should never be faced with judgement. The way I may deal with things is probably totally different to how someone else would and the time frame I deal with it is also probably vastly different too. This is life, humans are meant to be different, what’s the saying – life would be boring if we were all the same! I am definitely someone who chastises myself too easily, I guilt trip myself far too quickly too and I am a sucker for comparing myself to others which in turn doesn’t help the latter two issues! Without realising it, I suddenly became aware over the past few weeks that on waking every single morning, my first thought of the day was always, without exception, one that took a dig at myself. How awful is that? To wake up every day, being in such a bad place that my first waking thought is one of hate towards myself. That’s why I know I’m not in a good place because although my own self esteem and self-confidence hasn’t always been the best, it’s never, ever been this bad. It makes me sad that I feel this way about myself, not just about my physical being but about my day-to-day life. I have always been such a go getter, a busy person with a real love for life and it makes me so sad that I’ve lost that, especially when there is so much good that surrounds me. Whereas before I could use those good things to keep my head above water, now, I know that these good things are there but they don’t help me as much to keep positive. That’s so much harder to deal with because it’s like they are at an arm’s length away but I can’t quite get to them.

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Although I’m in a waiting period before I start CBT, I thought I’d be proactive and have spent several sleepless, pain filled nights jotting down, thinking about and analysing all the things I’ve lost and may need to grieve for in the last 18 months. It seems I haven’t dealt with any of them – great start Hannah, great start! The list grew longer when I stopped looking at the bigger picture and started looking at the smaller picture that lived within it and that then became quite overwhelming. Seeing it in black and white made me really emotional.

I’m not going to bore you with my list but it ranges from the seemingly little things like not being able to spend time reading a book, to the bigger things like not being able to work, to the obvious one of losing my hair. All of these things cumulatively add up the loss of life as I knew it. The life I’d built up after jury service, being independent again, gone. Just like that. In all honesty I don’t have the answers and I don’t know how I’m supposed to let this go and I’m sure that’s a question I’ll ask when I start CBT. I just struggle with it all because there is no end point. There’s only so much positive thinking I can do. I feel like I can’t control the constant arguments in my head that flit between berating myself for not being positive to being kinder to myself and allowing myself to be okay that I’m not always being positive.

I didn’t know I was going to write this post until a few days ago when grief really did hit me in terms of the death of a loved one. Losing my Grandma was something we had been prepared for in many ways and had wished for her too because dementia is such a cruel illness. We’d lost her a long time ago and watching her the way she became was very hard, luckily she was unaware of how she was existing because she would have hated it. But I was so close to her, after Grandad passed away she was my only Grandparent left and we formed such a tight bond. I loved looking after her and spending time together. We would do puzzles, I’d join in with activities at her care home – glass painting has never been so entertaining! I enjoyed painting her nails and doing her make-up and when she was able to, I was lucky enough to be able to take her out to  enjoy a scone in John Lewis before tackling the disabled toilet with a wheelchair…we did laugh! In the later months it was nice to just sit and hold her hand, push her round the garden when the sun was out and massage in hand cream, talking to her about the past or just sitting with her as she slept. She was a truly special lady in my life and yes, I know she lived to 91 and that’s amazing and I know that she’s at peace and that it was best for her. But she was my Grandma and I loved her and I can’t explain how much I am going to miss her.

So yes, I guess you can say grief has come to a head and I don’t know what to do with it all. I haven’t cried very much which is SO unlike me but then I don’t feel like I need to, I just know that all of a sudden since this realisation, there’s this knot in the pit of my stomach and I can’t untie it. I think perhaps it’s because I know that if I start to untie it, there’s a lot to be unravelled and I don’t know if I have the strength or energy to deal with it all. It shall be done but I need the tools to approach it properly so hopefully my appointment will come through soon!

Having said all of the above, I have never lost sight if the fact that I am still so very lucky. And that has always brought me back to a quote from Winnie The Pooh; “How lucky I am to have something that makes saying goodbye so hard.”

Happy Tuesday.

#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

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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 

January Favourites

How on earth have we reached the end of January already? But that does mean it is time to share with you my January favourites!

Food & Drink

This month I have got quite an eclectic range of things I’ve been enjoying! I have rediscovered my love for Werther’s Originals! I used to have them as a treat when I visited Grandma and Grandad but when I spotted them the other week I thought I’d treat myself. They really are such a lovely change from my usual Polos!

Then I’ve been loving pears this month – they are obviously in season and have been so juicy and lovely, not one duff one yet!

Then beverage wise, I don’t drink hot drinks and usually just have loads of water. I’ve cut out Ribena as it’s so high in sugar, but I do love sparkling water and discovering that adding Elderflower cordial to it has been a revelation! It’s just nice for a refreshing change.

 

Beauty

I feel like I covered most of my favourites in my ‘Chill Out Tuesday’ blog but something I didn’t mention was a deep cleansing ‘Black Mask.’ It’s a peel off mask which you leave on for 20-30 minutes and it increases vitality and removes impurities. I have to say it is quite painful to remove so you have to take it off quickly like you would a plaster! I have noticed that my skin has been smoother and clearer since using it so would recommend a try.

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Apps

I have got two apps to tell you about this month. First off is an app called ‘One Second a Day.’ The idea is that every day you should be able to find something good and capture it with a video clip which you can edit down to one second. You can use photos but personally I don’t think it works as well as the video clips. Then, by the end of the year you have just over six minutes of video that documents your year. I love this kind of thing and although there are days where you forget, you can always record a second at the end of the day saying something you’ve done! It won’t be for everyone but I am really enjoying it.

The second app is called ‘Headspace.’ It’s an app that encourages taking time each day to meditate and take time to breathe and focus on yourself. You get a ten day free trial and then of course you pay if you want to continue however, I have found that the free guided sessions are good enough for me right now. It’s important to take time out for yourself and this reminds you to do it daily – what is ten minutes out of a day?

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Lifestyle

Having moved back in with mum and dad into the loft conversion, I have found that my space had become more and more cluttered. It’s not surprising due to combining my life pre and post Dubai has all been crammed into one room (and the garage and living room – thanks ma and pa!) On good days I have spent time having a clear out but my wardrobes have been driving me insane. I am quite OCD and whenever I opened them up I could feel myself cringing! I wish I’d taken before photos but below are my newly organised, beautiful wardrobes! IKEA has done me proud with hanging wardrobe organisers and shoe boxes. I found that they fit much more than I expected and the shoe boxes were able to hold 3 pairs of sandals/flip flops or two pairs of trainers/heels.  You can also see I found the perfect place to store my big hats – on my wig heads!!

Then I have been obsessed with my two planners! One was bought for me by a friend – my blogging journal which I use to jot down blog ideas. It has space to write down blogging goals, your action plans and then space to plan your posts with little to do lists. It has really helped me feel more organised when it comes to my blog and I’d highly recommend it for anyone who’s considering starting up. It’s from Paperchase and is still available from what I can see.

Then there is my Erin Condren Life Planner! This is something that I enjoy because it allows me to express my creative side as well as plan out my life! It’s a day to day planner with a weekly spread and you can include stickers to add in to do lists, reminders or just to make it pretty! I chose to personalise mine, there are so many options to chose from in order to personalise your planner – it’s brilliant for any stationary lover. Again, it’s really helping me with my blogging schedule and with all my doctors/hospital appointments. I ordered it way back last year when I had money but I will be saving to get one next year too – they are only available from America now but you can buy cheaper planner stickers on Etsy and in shops like Hobbycraft so that does lower the cost.

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So there you have it, my January faves – what have yours been?

Happy weekend everyone!

#hairlesshannah

Flashback Fridays: The Kylie Days

I’ve decided to do a little mini series over the next few months of the key stages in my life, starting today with ‘The Kylie Days.’ I was lucky enough to grow up over a couple of decades where music was out of this world. From the age of about 3 – 6 I was obsessed with Kylie Minogue. She was the first famous person I ever ‘fangirled’ over and to this day I continue to think she is an amazing role model for children and adults. I guess you could say she was the person who got me interested in dancing. At every opportunity you would find me dancing in the front room – either naked, in a swimming costume a leotard or some kind of fancy dress outfit. I would copy the dance routines on the TV for hours on end and then go off and make up my own little routines to the music that was in the CD player at the time. When I look back at home videos of this, there’s a part of me that doesn’t recognise the girl staring back at me. I was very outgoing, confident and not camera shy at all! To be honest, I look at the clips and feel irritated at how annoying I come across!

I find it fascinating that many children find it so easy to let go of their inhibitions yet as some they get older, as they learn what’s socially acceptable, they begin to close themselves off and become timid and shy. Of course we aren’t all the same and there will be some children who were shy as children and become outgoing as adults – there isn’t a rule, I’m just basing this on me and my life. I guess in many ways I do have confidence because to teach I think that’s a personality trait you need, but I am a worrier and I care almost too much about what people think, even when it’s people I don’t know.

What hits me most about my childhood is the lack of technology I engaged with. Yes, I was in love with my first ever cassette player, my first portable CD player and then later on my Game Boy and Tetris but part from them, my childhood days were spent colouring, playing with Lego, making perfume in the garden from flower petals and water and using my imagination to play for hours with my toys. I absolutely loved writing stories and having stories read to me. There are of course children who still do all of these things but a lot of children also have so much “screen time” everyday and that makes me sad. I am aware that there are many educational apps and devices out there but for me personally, as a teacher and a grown woman, I don’t think there is anything better for a child’s development than to be making things,playing with their peers and families, exploring the world around them and by spending time by themselves with toys that evoke imagination, promote problem solving and above anything else provide them with happiness; after all, you only get one childhood so spend it taking in the world around you rather than staring down at a screen.

My imagination was always quite out there! We have never had pets in our household (allergies!) but when I was younger I was always desperate for one, and you know what they say, desperate times lead to desperate measures! I would tie rope around the handle bars of my stabilised bike and pretend it was my horse and then position all of my teddies, (who became farm animals) so that I could feed them from my basket! The all time low though was what I came to do to get over the fact that I didn’t have a dog. Goodness knows who’s bright idea it was but somehow I ended up having a ball in a sandwich bag with a long piece of string tied around it which I would then walk. Not just around my house and garden, oh no! I would also walk it around the park and down to the newsagent!! One of the worst days of my life was when one of the balls popped and technically my dog ‘died.’ I was so upset and we had to go out and purchase a new ‘dog’ ASAP! Granted I was very young and I didn’t see anything wrong with it but that don’t mean I don’t laugh uncontrollably about it now! When I was 18 mum and dad bought me one of the battery operated dogs that flip and walk because they thought I was entitled to one after my deprived childhood!!

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I loved Primary School, I guess I have always been known as a bit of a geek. I was never the popular kid in the class but I always had a great circle of friends. I never felt like I properly fit in with the cool kids, it didn’t really bother me because I have always been quietly reassured that being my own person is okay. Primary School is where I made my first ever best friend – Kayleigh. We did everything together, we crimped our hair, had sleep overs (some of which I wimped out of half way through the night! I was a home bird from such a young age!) went to swimming lessons, trampolining lessons, we sang, danced and looked out for each other. We ended up at the same Secondary school too which was amazing and like some things do, sadly we did drift apart but we are in touch now which is so lovely. Seeing her become a mum, even though we aren’t close anymore made me so happy. There will always be that bond there, in a way it’s like a first love. When you look back at your childhood and you school days there will always be that one person who shaped those years for you and Kayleigh is that person for me.

I had some wonderful teachers at school and I reckon this is one of the main reasons that almost from day dot, I knew I wanted to become a teacher. School seemed so much different back then, I know I am remembering it from a pupils point of view and I am sure that even back then teaching had its troubles, stresses and strains but I just remember it being so much freer than it is now. We had time to actually make topic books and make the marble covers using ink in water. We spent ages at different times of the year doing big arts and crafts projects, we did PE in our knickers and vests to a certain age without having to worry about the teachers being inappropriate or that boys and girls should be separate to get changed. Yes we had spelling and times tables tests which terrified me but school was, on the whole fun! Everyone enjoyed watching a film in the hall at Christmas and having big parties. We loved assemblies where we would sing hymns and giggle at the boys trying to make underarm farts! Year 6 always seemed so exciting because you’d get to sit on the bench at the back during assembly and not on the floor – you’d really made it then!  Although the world has changed over the past 30 years, fundamentally, children have remained the same, they want to be accepted, they want to learn and they want to have fun.

And then there were the toilets, namely the toilet roll that my school used. It was literally like using greaseproof paper to wipe your backside! Playtimes were always great fun – rolled up socks were banned at one point (the start of health and safety?!), but we loved playing IT, stuck in the mud and bulldog. In the summer when we used the field we would continue to play these games but would also spend time making daisy chains and later on pretending we were in The Spice Girls! Practising cartwheels and round-offs always occupied us and in Year 6 we all had to take it in turns to muck out and look after Guinness the rabbit! Guinness was the only pet I ever had and one holiday I got chosen to bring him home to look after…it was then I realised that the reality of having a pet wasn’t actually for me!

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Birthday parties were always a talking point at school, like they still are today. Bowling parties with the big bear in Bexleyheath were always popular, as were swimming parties with the magician at the end at the Lido. Time was always made for birthday cakes to be brought into school, mum always brought in ice lollies for my class as May tended to be hot which was always a novelty! My birthday cakes were always homemade and were always incredible – how mum and dad discovered the recipes and had the time to create such amazing cakes is beyond me. They always took the time to make me feel special, not just on my birthday, but everyday.

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We had the most amazing trips at my primary school. I had three weekly trips away which was so exciting – getting to spend a week away from your parents just to do fun things and hang out with your friends is every child’s dream!  All three trips were to farms or activity camps, the most memorable being the farm that Michael Morpurgo owns in Wales. As a book lover, that was such an exciting week for me. Michael Morpurgo came one evening to actually read from his book to us and then signed copies for us to buy. We then spent the week learning how to be farm hands and I loved every second. We got to share rooms with our best friends and stayed up late to go and watch baby calves being born. I was so lucky to be able to do those things and have those experiences because they were the things that started to mould me into a well-rounded human.

I was always busy, something that continued into my teenage and adult years. I was never good at being bored but then that was a very rare occurrence as I could easily think up activities to do or be happy to just sit and read a book.  I was so lucky to be part of a family who were able to support my hobbies and encourage me to try anything and everything. Dancing was my thing and from a very young age I joined New Eltham Dance School and there I remained until I left for uni at 18. Without any doubt in my mind, that dance school was a main contributor to who I am today. Miss Sandra, Miss Yvonne and later Miss Amanda treated us as their own children. Both Miss Sandra and Miss Yvonne were original Tiller Girls which I always thought was so impressive and would talk about with my friends at school! Those wonderful ladies taught us about discipline, encouraged us to have fun and also taught us about dedication, working towards a target, improving on a skill and about the importance of being a team. I made so many friends at dancing, it was an extremely special community. We did exams and annual shows which I adored because we got to play at dressing up, wear make-up and have posh hairstyles! I do look back at the dance show videos and laugh at some of the costumes though – one year I was a glow-worm with a torch stuck to my head! My main style of dance was tap although I loved modern and did try my hand at ballet for a few years but was rubbish! With tap I reached the stage where I was ready to do my teacher’s qualification but never finished it off, maybe I will one day. I was so sad when I left to go to uni but have stayed in touch with NEDs and enjoyed a little reunion a few years back. What a special place that I am so lucky to have been a part of.

Holidays were always fun – most of them being spent between Norfolk where Dad was born and Swansea where mum grew up. Langland is the beach of choice, still is to this day. We’d spend every day with Andy – who is like mum’s sister and is my Godmother and her son Adam. Ad and I didn’t always get on but we did have fun most of the time! Jack and I were both lucky enough to go on skiing holidays throughout our youth which I did enjoy but wouldn’t necessarily be my holiday of choice now! I’m more like mum, carrying those skis and wearing those boots are not a fun thing! We also got to visit family in Canada where my uncle, niece and nephew live. All of these experiences at such a young age for sure started my love for travel. The infamous moment in Canada is when we drove all the way out to Niagra Falls, one of the most awe-inspiring places in the world, and all I was bothered about was seeing the floral clock!!!

But the best thing about this stage of my life was receiving the thing I’d wanted more than anything – a little baby brother or sister. I was never lonely as a child but I just knew that being a sister was a job I could be good at. When Jack was born, all of our lives changed and I simply loved it. I loved being old enough to help mum and dad feed, change, bath and burp him as well as treating him like a play thing at times! We formed such a strong bond and I do think in part that’s because of the six, almost seven-year age gap. To this day he remains one of my best friends and is someone who I know I can always rely on. He has turned into such an amazing man and I couldn’t be prouder of everything he is and everything he does.

My childhood ‘Kylie Days’ were so much fun looking back. Yes I had incidents, who doesn’t?! – two involving my bottom though(!) one where I fell off a stool which flipped and I sliced it open and the second when I jumped off the end of a bed landing on a portable radiator and burnt, quite badly my poor little butt cheeks! I would cry when life didn’t go my way i.e when I wasn’t allowed to watch Neighbours and an episode of 999 scarred me for life when I saw what a grizzly bear was capable of! But even those experiences are part of my history which I wouldn’t erase, even bad experiences have hidden agendas, for me – learn how to scare off bears if you’re in their territory!!

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Our childhoods shape us more than we know, I have always felt that as a teacher. I may not have children of my own, but each child that I teach becomes so very important to me. I look back and thank all my teachers as they gave me, alongside my parents, the life skills that I have needed to succeed in my life thus far. I think everyone has that one teacher who they hold dearly in their hearts and mine will always be Mrs Counter. She was the kindest, most caring lady and teacher in our school and I idolised her. She is the reason why I have Jessica teddy in my classes because that’s the name Mrs Counter gave our class bear. As well as Mrs Counter I was lucky with every teacher I had, they prepared me for how to cope with failures, they taught me how to be careful in potentially dangerous situations, they taught me how to read, write and solve problems. But they also instilled in me the importance of trust. I always knew I could talk to my teachers, I learnt how to build relationships and trust my peers and that is what I have always strived for as a teacher. It’s a profession that holds so much responsibility, more than we realise probably and that is why I have always taken my role so seriously. Yes, I want all my pupils to do well academically but I also want them to look back and remember all the fun, crazy things we did in class but mainly I want them to look back the way I do and be thankful that they had me as a teacher and as part of their life.

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So that’s my first trip down memory lane – did it spark some memories for you if you grew up in the 80s and 90s? Maybe it’s made you think about how your childhood shaped you – let me know in the comments below.

Have a really lovely weekend,

#hairlesshannah