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 

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