There’s more to my story…
This is the first post on my new blog. I’m just getting this new blog going and transferring a couple of older posts from another site, so stay tuned for more. Subscribe below to get notified when I post new updates
This is the first post on my new blog. I’m just getting this new blog going and transferring a couple of older posts from another site, so stay tuned for more. Subscribe below to get notified when I post new updates
14th October 2019… It was a wet, windy, cloudy morning after the night that Storm Callum had battered parts of the UK. As we travelled north on the motorway, there were plenty of flooded fields to be seen, but no nerves. There was no way that this would go ahead in this weather.
I had called the Black Knights Parachute School earlier that morning to check before we wasted our time driving up there, and was told that they were expecting the weather to improve that afternoon and to turn up as planned. I wish I’d shared their optimism.
The skies were dark and ominous, and it was still quite windy.
It was back in July, just a couple of months after my surgery, that the advert for a skydive popped up on my Facebook newsfeed.
It had been something I’d had on my bucket list since forever, and when I was told I needed surgery it was one of the first things I instantly regretted not having done already. I mean, surely you’d never be able to do things like that with a hole in your head that was filled with fat from your stomach? Or could you?
At my 6 week check up, I’d asked my surgeons if they thought I’d be able to do activities, like hiking at high altitude, and the answer was “Yes”.
I paid the £50 to register, set up my JustGiving page, and began my fundraising for Northwest Air Ambulance. I had wanted to give back something to the medical community and jumped at the chance to be able to raise funds for such a worthwhile cause.
A few weeks later, whilst sunning myself on a Greek island, I received a call from Linda, the fundraising lady at NWAA…
“Hi, I’ve looked at your fundraising page, and I see you’ve had a few medical issues… you have had permission to skydive from your consultant?”
Busted! “Of course” I replied.
Frantically, I scrolled through my inbox until I came across my registration email – along with the attached medical consent form, and quickly (with everything crossed!) drafted an email to my consultant!
Never have I been so relieved to receive a letter from his clinic!
On that cold, damp, miserable October morning, there were no nerves. In fact, I’d not been nervous at all in the run up to that day, as the weather had been abysmal the whole week, with storm force winds and heavy rain.
I didn’t want to look forward to the jump, as I knew I’d be totally disappointed when it was cancelled, and so late in the year it would be unlikely I’d have another opportunity until next year.
We made our way, under dark skies, to Lancaster. As we left the motorway, there was a tiny slither of blue sky in the distance, just peeking through the clouds. Maybe, just maybe, I would get to jump after all.
By the time we reached the centre, the leaves were no longer blowing from the trees, and that slither of blue had grown quite considerably.
As I looked out, in the distance I spotted bright colours in the sky… They were jumping, along with the butterflies in my stomach.
I weighed in, attended the safety briefing, and decided that rather than go from the planned 11,000ft, I would jump from 15,000ft, the highest possible skydive in the UK. I mean, what’s in another 4,000ft? You still have to get out of the door!
A short time later, I met my instructor who I would be tandem with.
Ben was just great. He asked if I was nervous. To be honest, the only thing I was nervous about was not being able to hear him above the noise of the plane, and the wind once we were out.
He did all his safety checks and introduced me to our cameraman Leroy, who would be filming the whole thing, and then made our way across the tarmac, over to the aircraft.
I couldn’t join in the chatter that was going on inside the plane, as thanks to my stupid deaf ear I couldn’t hear a word that was being said, and so there were quite a few hand gestures flying around.
Once we got to 7,000ft, Ben began the last minute checks of our harnesses and before I realised what was happening, the door was rolled open and people were leaving the plane.
It was strange. One moment they were there, the next they were gone.
We slid our way along the benches and onto the floor, stopping at the door. Leroy, our cameraman was outside, just hanging on. It seemed totally surreal seeing him there!
As Ben had explained earlier, we sat on the edge of the door, took a breath and made sure my legs were tucked under the plane. He told me to be bent like a banana!
And before I knew what was happening we were out, free-falling at around 125mph, the wind roaring down my ear.
It was just perfect. The stormy skies had cleared, and I could clearly see the ground below. It was kind of an analogy of my life at that moment in time.
Falling through the air gave me the feeling of complete and utter freedom, and once our chute was deployed, there was total silence.
Knowing of my concerns of not hearing instructions, Ben went over our landing procedure a couple of times, until I was happy. We drifted around, taking in the fabulous views of the Lancaster canal, and the coastline, Blackpool Tower just visible glistening in the distance. It was so serene, I just wanted to stay up there taking it in forever…
There were no nerves, because when you get the opportunity to do something you thought you would never be able to do, you grab it and you enjoy every last second. I couldn’t stop smiling.
I realised from this, that fear is just something we create. It only has power over us if we allow it to. Because I really didn’t think it would be going ahead I hadn’t created that fear and allowed it to control my actions and emotions. I mean, who the hell throws themselves out of a perfectly good aircraft for the sake of it?
I also realised that we shouldn’t keep putting things off until tomorrow. None of us know what lies around the next corner. I was lucky. I was told I had “the best of the worst”, and despite the haemorrhage and the toll that weeks of sickness and subsequent surgery had taken on me, I’d been fortunate in my recovery.
This experience was just one such moment of clarity and learning I’ve had on this brain tumour journey, and there would be many more to come.
So, whatever it is you have on your bucket list, what are you waiting for? Getting ticking them off.
And if you have a head for heights, you can watch my whole skydive experience by clicking the link below!
It was around 3 weeks after my surgery. Another beautifully sunny afternoon. Another day of me missing out on doing the things I loved, as Neil had gone out on a club bike ride and I was stay in the garden, resting…
When he got home, Neil left his bike in the garden, and I gazed at it, thinking back to how I used to enjoy us both heading out on the local cycle paths and greenways, stopping off to grab a coffee and cake.
I had been told that riding a bike would be very difficult, if not impossible after surgery due to my vestibular nerve being sacrificed in order to have better access to the tumour and lessen the risk of permanent damage to my facial nerve.
But I couldn’t help but wonder, what if…? What if I could I could ride it? What would it feel like now I have no balance? I walked over to the bike.
I don’t quite remember how the conversation went, but it ended with Neil lowering the seat on his bike was low as it would go. I sat on the seat and tried to find my balance.
It was strange. Just like that first time I got out of bed and tried to walk, it felt like I’d never ridden a bike before.
Gripping onto the handlebars, I pushed myself along, not even venturing near the pedals. And then, as I began to get used to the feel of the bike, I put one foot on a pedal, then the other.
I was off. I spent about 20 minutes riding slowly up and down the patio. It felt weird and unnatural, but I was doing that which a few months earlier I didn’t think I’d be able to do ever again, and certainly not this soon!
The following week we took the bikes to a quiet track and again, with the seat as low as it would go, we rode up and down. This was far more challenging, as the surface was broken up and uneven, and the hedgerows at either side overgrown with nettles and brambles, a visible enemy waiting to pounce during a moment of weakness.
But this worked to my advantage. The thought of a prickly, stingy landing was just the encouragement I needed to stay in the saddle!
For half an hour, I cycled up and down that track. It still felt alien to me, and didn’t come naturally at all, as it once had before this.
I am determined not to be defined by what has happened to me though, at least not in a negative away, and so despite the difficulties and the fatigue I kept going.
A week later (5 weeks post op I think), I rode 10 miles to the small cafe I used to enjoy riding to do much.
The following week, having informed my somewhat surprised consultants at my 6 week check up of my progress on two wheels, I cycled 30 miles, once again with coffee and cake being my motivating factors!
Everything can seem impossible until it’s done. However, if you can learn to keep a positive mindset, and focus not only on your goal or destination, but each tiny bit of progress you make along the way and just keep building on it, then absolutely anything is possible.
Those first few weeks were a mix of doing whatever I could do work on my balance, and sleeping.
I was still very much reliant on others, as I my vision wasn’t recovered enough to drive, and mum was still coming round to help with housework and cooking.
It was about 3 weeks after my surgery when I was called by the respiratory consultant at my local hospital in Chester. He wanted to check where I was… I kind of got the feeling he actually wanted to check I was still alive. He made an appointment for me to attend, to discuss once again my scan results, and ruling out anything untoward.
With everything else going on, I had pushed all thoughts of this to the back of my mind. The thought of having another battle on my hands didn’t appeal one little bit.
At our meeting with the consultant, we looked over the x-ray and CT images of my lungs, and an urgent appointment was made for me to attend for an “EBUS”, or endoscopic bronchial ultrasound procedure. It would be performed under local anaesthetic. I admit, I had my reservations.
I arrived at the hospital a couple of days later. I was shown to a waiting room full of other people undergoing similar procedures and one by one we were taken to a side room to have a cannula inserted and our obs checked, and then sent back to wait our turn.
Eventually, I was called through to a room that looked a little like an operating theatre, but more like a dental surgery.
The procedure was explained to me again as I lay down, once again surrounded by medical staff.
I was connected up to various monitors as the consultant sprayed the back of my throat with local anaesthetic.
Within moments I began to feel the effects of this; I told the doc that I couldn’t swallow, and he tried to reassure me that this was perfectly normal, that I was in fact swallowing, just unable to feel it.
He then placed what I can only describe as I gag in my mouth, so it was held open and I was unable to speak. I was also given an injection, through the front of my neck, into my throat. This was not pleasant at all, and it was only at this point that I was given sedative.
The two consultants then began to insert the various pieces of equipment into my windpipe, and into my lungs.
At this point I had this involuntary urge to cough like I had never coughed before. My lungs clearly didn’t like being poked about…
I really struggled to lay flat as I was coughing so violently, and so I had 3 nurses holding me still as the doctors struggled to take biopsies. Once again, I worried about the pressure this would put in my head, and again the high risk of CSF leak.
I could hear the pulse metre picking up its pace, and then my blood pressure followed suit. I was still feeling no effects from the sedative, and I heard the doctor telling the nurse to give me another shot. I waited to drift into a deep sleep, but nothing…
I felt as though I was drowning. It seemed like an eternity until they got the samples they needed and pulled the equipment out of my protesting lungs.
I can only describe this as the most barbaric experience I’ve ever been through. My craniotomy, by comparison, was a walk in the park.
It was a week later before I received my results. I was told that the biopsies had shown that the lymphadenopathy in my lungs was in fact caused by Sarcoidosis. I informed the doctor that should I ever need that procedure again, it would only be under general anaesthesia.
Sarcoidosis is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs.
The cause of sarcoidosis is unknown, but experts think it results from the body’s immune system responding to an unknown substance. Some research suggests that infectious agents, chemicals, dust and a potential abnormal reaction to the body’s own proteins (self-proteins) could be responsible for the formation of granulomas in people who are genetically predisposed.
There is no cure for sarcoidosis, but most people do very well with no treatment or only modest treatment. In some cases, sarcoidosis goes away on its own. However, sarcoidosis may last for years and may cause organ damage.
Doctors don’t know the exact cause of sarcoidosis. Some people appear to have a genetic predisposition to develop the disease, which may be triggered by bacteria, viruses, dust or chemicals.
This triggers an overreaction of your immune system, and immune cells begin to collect in a pattern of inflammation called granulomas. As granulomas build up in an organ, the function of that organ can be affected.
Thankfully, it was felt that as I didn’t seem to be suffering any physical effects of the sarcoidosis, apart from the joint pain and rashes that had been some of the first symptoms of my demise into this mess (and which had since cleared up), I wouldn’t be given any treatment, and it would hopefully just run its course.
I will fight another day, but each morning I wake knowing that someone, somewhere will be receiving quite different test results.
Have I been lucky? Fortunate even? Each time I hear of a case of someone being diagnosed with a cancerous brain tumour, or other life-threatening condition, I feel physically pained.
Whilst my tumour was low grade, I know what it is to live with that intruder. I know what the effects of it are. I know how life-changing going through a craniotomy can be, the fatigue, the sickness, the weightloss, the having to relearn so much, the being reliant on others, the mental battle that rages in your head every single day.
It’s no joke. Mostly, I feel an overbearing guilt that I have survived that which will beat others, and I wish I could take that pain away from them.
Whilst the rest of the country was watching Harry and Megan’s royal wedding, I was sat in the treatment room of our local hospital having my stitches and staples removed.
I thought that it might have been painful, but actually having a head that was half numb on this occasion had its benefits.
Having the staples removed from my stomach wasn’t quite as painless, but I could now safely say I’ve been through far worse and survived.
This was the first time I’d seen the wound from where the fat was harvested for my head. I’m not really sure what I was expecting to be honest, but I was upset by the visible dint and scarring that seemed far worse than that from where I’d had a c-section some 19 years ago. The nurse told me that both wounds were very ‘neat’. As far as my stomach went I disagreed, and hoped that it was just the swelling that made it look so awful.
My hands and arms were also badly bruised from the numerous cannulas that had been drip feeding me over the previous week. Now I was home I felt physically and mentally battered by recent events.
Those first few days at home consisted of mostly sleeping. My single sided deafness had its benefits in that I could sleep soundly without being disturbed. My US friends had trained me well in the art of looking for the ‘silver linings’ and this was one of them.
I tried as much as possible to keep moving. My brain had to learn to compensate for my lack of balance, and the only way to speed this process of neuroplasticity was to repeatedly do those things which I found difficult.
I very quickly discovered my limitations though and it was frustrating. Prior to my surgery, up until the point at which I couldn’t get out of bed without being sick, I had tried to remain active. I had worked on yoga poses that challenged my balance, so mountain pose, tree pose etc. These were now impossible.
In my mind I wanted to keep myself busy, but my body just couldn’t do it. Even a conversation was exhausting.
Each morning, my mum would help with chores around the house and then go home and cook for us. Each afternoon my children would go and collect it from her house. I should be doing these things but I couldn’t. I didn’t have the energy too, and I’d been told to do absolutely nothing, for 6 weeks. This was going to drive me insane.
I reached my second goal of going back to school for Les’s retirement assembly. Neil drove me to school, and as he parked up outside the gates I sat in the car and cried. This was my first ‘public engagement’ and I really didn’t think I could do it. I felt so overwhelmed, anxious and scared. I really didn’t think that I could bring myself to walk through the doors I had walked through hundreds, if not thousands of times before. I was scared of seeing people again, what they’d think of me, and I was terrified of the overwhelming noise that is part and parcel of a primary school
Just then Helen, who had recently left but had also been invited back for this event, arrived. I seized the opportunity to try and override the battle that was going on in my head and got out of the car to walk in with her.
There were a few hugs from Irene the assistant head, and Darryl, the headteacher, and a few more tears from me. Irene took my arm and led me into the hall allowing me to sit where I felt comfortable. I’m not sure that I would have felt comfortable anywhere that day. It was the one place I had really wanted to get to, and yet at that moment in time it was the place I least wanted to be.
Despite really struggling with the noise, and having my finger stuck in my good ear to shut it out, the afternoon went well; it was lovely to see everyone. Those who had completely ignored me on the previous occasion I had visited, continued to ignore me for reasons that I still don’t understand to this day. At the end of the day Di drove me home, via a the local pub where we sat outside in the sunshine, having a catch up.
By the end of that week I was starting to go a bit crazy, but I just didn’t have the energy to do anything much at all. I thought I could perhaps get on my bike which was on a static trainer in the conservatory, but Neil said I shouldn’t as the rise blood pressure might put pressure on my wound and cause a leak. And besides, my balance was so bad I could barely get on it without help.
So instead I decided to work on the yoga poses again. Neil put my yoga mat out with a chair for support, and I focussed all my frustrations on trying to improve my yoga, choosing poses that wouldn’t involve lowering my head in any way.
It was incredibly difficult. But, with perseverance I was able to find and hold the position for just a few, wobbly seconds. And those few seconds before I had to grab hold of the chair again gave me just a little glimmer of hope that the old me was still there somewhere.
My face too had also shown a big improvement. It sounds stupid writing this now, but since the day of my surgery I had been willing the muscles in my face to remember what to do. Each time I looked in the mirror I willed them to move, and would get excited with each little twitch.
By the second week, my mouth looked more normal, although that half of my head, face and mouth was still completely numb. There was absolutely no sensation. My eye still wouldn’t close properly and needed drops regualarly to keep it moist, and my ear was still sticking out of the side of my head. Once again I found myself contemplating hairstyles that would cover up this side of my face.
I was on a rollercoaster of finding myself celebrating the tiniest of improvements and achievements one moment, then crying about just how much I couldn’t do the next and worrying that I would never be able to do anything I used to. Then I would be angry that I couldn’t even cry properly.
With my energy at a premium though, I realised I couldn’t keep this up. Getting upset was a complete and utter waste of time and energy that could be better spent.
I focussed on setting my next goal. That weekend I was going to walk 1km. So, that sunny Saturday morning, we got up, I put on my Garmin (which had been put away in a drawer due to the utter frustration each time I’d looked at it as it was a reminder I’d not been able to do anything!), and drove the short distance to a quiet track.
With our dog Hugo in tow, we walked slowly. It was tiring and I was wobbly, but we clocked up 1 kilometre. I felt good though, and so we carried on. We walked another 2 before we returned to the car and drove home, where I slept.
I’ve always been the kind of person who likes plans and lists. What had frustrated me so much during this experience was that there were so many ‘unknowns’ I couldn’t make any realistic plans.
My life was effectively on hold. But in spite of this, before my surgery I had written a list of goals. I needed to have some focus.
1. Complete the Race for Life 5k in July.
2. National 3 Peaks (probably not consecutively) within a year.
3. Mont Blanc or Kilimanjaro before the end of 2025. I would absolutely love to climb Kili, but not sure how I could afford it financially. Logistically, Mont Blanc is probably a better and certainly a more affordable option!
When I told them of this, one of the guys in the Navy gave me some advice. Scrap them all and make my priority recovery from surgery, and then taking up some exercise within 2 months…
As I’m sure they would tell you if they could, I am never one to take their advice without making a big fuss over it! We frequently chatted at great length about my recovery, each conversation ending with a reminder that I’d undergone major brain surgery. In their line of work, they have sadly come to know of others who’d suffered head, or other life changing injuries, and so I guess they knew just what lay ahead for me in terms of recovery, and perhaps a little more so than my family who were still of the opinion that now the tumour was out I was all fixed.
I don’t always welcome well-intended advice, in fact I despise being told what to do. I hated people saying that with time I’d get used to the ‘new normal’. I liked the old normal and I was going to do everything I could to hang on to it.
I did come to realise though, that my goals would have to be flexible, and now I’m beginning to understand that that’s ok.
So, I also had a couple of smaller, short-term goals.
The first was to be home 3 days after surgery. As for the second one, a former colleague, Lesley, was retiring that month. I had been invited to her surprise retirement assembly at school, just12 days after my surgery. She had been so helpful to me, particularly in my early days there, so I was determined that I was going to be there whatever.
Unfortunately, I soon came to the realisation that I couldn’t control everything when 3 days after surgery (and only just out of HDU) I was still throwing up and couldn’t walk. My first goal had to be adjusted. So, I made getting out of hospital within a week my new focus.
I pushed myself to walk around my room whenever I could. It really wasn’t easy; The easy option would be to stay in bed. I was still struggling to balance and I was so tired. It also wasn’t helped by the issues I still had with my vision and ability to focus. Visitors would comment on how well I looked, and just how well I was doing. If only they really knew just how much effort it really took to appear “well”. In actual fact, it was all a big facade. I felt so guilty for the upset I’d caused everyone for being ill, I just wanted to put an end to it by being well. Deep down though, I wondered just how long I could keep it up.
On the Thursday evening, I was moved from my room onto a ward with three other ladies. I missed my privacy and hated the noise that went with being on a busier ward, so I kept myself occupied with packing up my belongings in anticipation that I would be able to go home sooner rather than later.
I showered myself and got myself dressed rather than sitting around in my pyjamas. In some misjudged attempt at being positive about my surgery and recovery, I had packed a ‘Wonder Woman’ running vest. At that point though, I felt far from being a super hero and so that remained in my case.
On Friday morning, I was visited by Scott my neurosurgeon. He was a little surprised to see just how well I looked. He did all the usual observations and was pleased to see a very slight improvement in my facial palsy.
I held my breath (as if it would make a difference!) as he once again checked the swelling behind my ear. Although still a little concerned about it, he was satisfied that it wasn’t a CSF leak, and with that, made the recommendation that once all my meds were ready I could be discharged. The act paid off.
I really don’t think I’ve ever been happier, and I called Neil to tell him the good news and beg him to come over as soon as he could.
The housekeeping lady came over to take my dinner order. I found great pleasure in telling her that I wouldn’t be around for dinner, but she wanted me to order something just in case… I hope the spaghetti bolognese I’d ordered was more appealing than the fish and chips for whoever had my bed next!
Sue came down from Radiology on her break to see me that day. She was surprised I wasn’t in my room – the person now in there was hooked up to all sorts of machinery and for a moment she thought I’d had some major setback until she realised it wasn’t me!
I sat around waiting what seemed like an eternity to be told I could go. I hassled every nurse who came near my bed, to ask when my meds would be ready because I was waiting to go home. I sat in my chair and told the nurses they could change the bedding because I wouldn’t be getting back in it.
Lunch arrived. Now the food had been ok during the rest of my stay, but this was like the final test.
It was Fish Friday… The fish was a rectangle, and the chips didn’t really resemble chips. I ate as much as I could stomach, so as to not raise any concern, and thankfully, a short time later my package of painkillers, anti-sickness tablets and patches, and laxatives were brought over. Hallelujah!
As soon as Neil arrived, having thanking them and leaving them with a supply of cake, I was off! That walk from the my ward to the car was one I won’t forget. It was a slow, wobbly and somewhat emotional one.
I was so pleased I was still here and going home. But deep down, a part of me was terrified; I still had a stitched up hole in my head, eyesight that was dodgy to say the least, and I despite my outward appearance, I was still struggling to walk properly. I also had a whole list of signs and symptoms to look out for, any one of which could have meant readmission with one of the long list of potential risks from surgery.
That aside, strolling slowly out through the car park in the warmth of the late afternoon sunshine was bliss; I had discovered a new sense of gratitude and appreciation for little things such as this.
Despite the minor adjustment, I had managed to achieve my first goal and was out of hospital just 6 days after having my brain surgery, and walking on my own, without a walking frame! Sometimes in life, you need to change the plan, but never change the goal!
I’d spent many years working with children who had special educational needs. I’d spent years studying autism, deafness and deaf awareness, dyslexia, dyspraxia, sensory processing disorders… Nothing, however, could prepare me for the world I now found myself in.
My tinnitus at times was debilitating. Yet I was profoundly deaf. In the safety of my small room in the hospital, I was cocooned from reality and with the tv on quietly, and my door shut to the noise of the hustle and bustle of hospital life, hearing loss didn’t pose too much of a problem.
Thankfully, the nausea was settling a little. I busied myself with my physio, and doing what I could to move around using furniture as a crutch. My physio came daily, and within a couple of days I could shuffle along the corridor for about 10 metres… supported either side.
He told me that I would need to pass the stairs test before I could go home. So, I insisted on doing it there and then, although the 5 minute walk to the stairs (that would probably take 30 seconds for anyone else) exhausted me before I’d even started.
Looking like a pirate, with my eye patch, one physio in front, and another behind, I proved that I could go up and down the stairs. I still can’t believe just how alien everything felt. I had been going up and down stairs probably since the age of 3, and yet here I was, some 40 years later, having to learn how to do it all again.
Exhausted, I was taken back to my room. And then he said it, “I think you should consider using a walking frame… I can arrange for you to have one to take home.”
A colleague from work always used to say that she could tell exactly what I was thinking by the look on my face. I think my reaction to the physio’s suggestion was just as apparent.
“I can see you’re not really liking that idea” he added.
I took a breath and responded with something along the lines of, “Look, I walked in here on my own, and I will be walking out of here on my own.”
The walking frame was never mentioned again.
That afternoon, I had visitors, Neil, my mum and dad, who are divorced and don’t speak to each other, my aunty and uncle, Neil’s parents and Sue.
Now I was about to truly realise what unilateral hearing loss was really like. I can only describe it as torture. Everyone was talking but the “noise” was overwhelming and excruciating. I couldn’t focus on what one person was saying in the group; it was just noise. Some were speaking English, others Spanish, but I couldn’t pick out what one person was saying in the group. I hated it and in my head I was screaming at then to shut the f*#k up. I couldn’t wait for them to go. And when they did, I cried, and cried, and I cried myself to sleep.
So there’s this quote I love…
“Life is 10% what happens to you, and 90% how you react to it.”
This became my motto. I could wallow in the self pity of not being able to walk properly, see properly, hear properly, or I could see just what I could achieve with the parts of me that were still working.
I think it was around Tuesday when my dressings came off. With the compression gone, my ear kind of exploded out of the side of my head. Whilst I was planning hairstyles that would hide my wonky face and deformed ear with my hair stylist Nicki, the docs and nurses were a little concerned that it could potentially be a CSF (cerebral spinal fluid) leak.
Quite surprisingly, I was not so bothered about the fact that I looked a complete and utter state, I wanted to be up and about. By the Wednesday I had my cathetar removed. Freedom!
As soon as the door closed behind the nurse, who had given me strict instructions that if I needed to move I should call for assistance, I was figuring out the best way to get out of the chair to practice this walking lark.
I used the wheeled table a bit like a walking frame. It was a marker for halfway point between the chair and bathroom door. If I could make it to the bathroom, there was a rail on the door, and then I could use the wash hand basin as support.
And with my plan in place I was off! It took about 10 minutes to shuffle my way to the bathroom, and when I got there I cried (through one eye!).
As I sat on the toilet, celebrating my achievements, along with the fact I could pee by myself, there was a knock on the door.
“I told you to press the buzzer if you needed to move!” I’d been busted.
I ended up spending an additional night on HDU, and it would be a couple more days before my world had almost righted itself. My vision however, was still very double and focusing just felt weird.
The light sabres in my head had quietened slightly, and I was just left with a more tolerable roaring, rushing sound, with just the occasional screech.
Although I was still suffering badly with nausea, I was unhooked from some of the monitors, and moved to a private room.
Earlier that morning I’d been visited by the physio team. Despite feeling like crap, I was still buzzing over the fact I’d survived surgery and my tumour was completely gone.
The physio was a great guy. He told me that today was the day I would get out of bed. I was worried… I’d barely been able to wash myself with help from a nurse, let alone get up.
I had been so immobile, that I was now on warfarin, to stop my blood from clotting.
The physio and his colleague sat me up in bed, being careful not to dislodge any of the many IV lines I still had in my hands and arms and also the catheter. The stomach drain had now been removed though, and the wound was dressed.
I sat up and turned so my legs were hanging over the side . It felt very strange, I felt dizzy and then I was sick yet again. It took a good 10 minutes for things to settle enough to attempt moving me again.
The bed was lowered until my feet touched the floor, and then the physio brought over an armchair, placing it about a metre and a half away.
“We’re going to take walk over to the chair” he said.
“That’s it?” I thought to myself, “I can do this.” How wrong I was…
I slowly stood up, supported on both sides, and I moved my leg. At least I tried to move my leg. Nothing happened. It was the most bizarre experience… Just like with my handwriting, it’s as though my brain was telling my legs what to do, but they weren’t getting the message.
With my eyes fixed straight ahead, as I couldn’t look down without feeling even more dizzy, I managed to drag my left foot along the floor; it was more of a shuffle than a walk. Then my right foot. Eventually, some 15 minutes later, I arrived at my destination with my saline, IVs, and catheter in tow.
Never in a million years did I think it would be this hard. Six months earlier I’d have been out running half marathons and walking in the mountains. Now I couldn’t walk a metre and a half unaided.
They sat me down in the chair, and made me comfortable there, as I was far too exhausted to get back to bed.
My lunch had been brought through, but I couldn’t stomach it. I’d not mentioned it to the nurses or the consultants at the time, but I’d also been finding swallowing difficult. I was terrified that I’d have to go back under the knife, so I kept that to myself and sucked on mints and chewed gum in the hope that it would exercise the muscles I needed.
It appeared my taste buds had also gone AWOL, quite common I have since discovered. The nurses were now concerned about my blood sugar levels starting to drop and so this was also being monitored.
Neil’s cousin Sue worked at Salford as a Radiographer. That day she made the first of many visits to see me, bringing up a couple of magazines.
Sue is absolutely lovely, and I really appreciated having the company as my family didn’t come over until visiting time in the afternoon or evening. However this particular day I was so exhausted I could barely speak. I felt awful.
It was late that afternoon that I was moved from HDU, the ride to my new room causing me to be sick yet again.
It was another bright room, with tall windows that overlooked the hospital and car park entrance. My mum had stayed with me that afternoon and was busy chatting on her phone, giving updates to everyone, as the wonderful nurses rushed around, changing my catheter, topping up my medication, taking bloods, going through medication and recording my obs. My pulse and blood pressure were now back to normal. Proof if it were needed that the increase had been due to the intruder in my head.
I could now see what I really liked like, and it wasn’t great. I had a big scab on my forehead where presumably I’d been screwed down during surgery.
I had the most horrendous nystagmus – an involuntary movement of the eye. Whenever I tried to focus on a person or object, my eye would move quickly and uncontrollably from side to side. Trying to find the words to describe this is quite impossible.
I was given special gels to put on my eye to prevent it become ulcerated as it was dry; as I cried I discovered that my left eye didn’t produce any tears, a bit of a party trick, and a reminder that crying over my situation wouldn’t achieve anything. And so I started trying to get my face to work properly again, willing it to move.
Whilst my visitors were pleased to see me off HDU, and making comments like, “You must be so glad that’s all over” I was slowly coming to the realisation that whilst surgery was over, this really was just the beginning. I had a choice.
To use the words of Josh Shipp, “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.”
Whatever it looked like, it was time to get my game face on…
I was wheeled, by the three recovery nurses, up to the High Dependency Unit (HDU). I was acutely aware that one of them was carrying resus equipment, and the realisation that this was just the very beginning was starting to sink in. Scott had called Neil as soon as he’d spoken to me, and despite feeling like I’d just been hit by a bus, I couldn’t wait to see him.
I’d not quite made it to HDU before I was sick again. The wretching was painful. You see, I’d had an abdominal fat graft taken to fill the hole that had been made in my head. As well as a ton of monitors beeping away, I also had a catheter, and a drain in my stomach.
I was scared to move due to the risks of CSF leak, but the sickness was violent and uncontrollable.
Neil arrived with my mum about an hour later. I cried. “Do I look like a freak?” I asked. Of course he was going to say no, but even though my head hurt like crazy, I knew my face felt weird.
It was numb, like I’d had lignacaine at the dentist; my left side, from my forehead to my chin was completely dead, I couldn’t feel my teeth – you could’ve done root canal right then and I wouldn’t have felt a thing – and half my tongue and the roof of my mouth was also completely numb. Slightly more concerning, my eye wouldn’t close. You could’ve drawn a line right down the centre of my face. There was absolutely no sensation on the left, and the right was completely normal.
On a positive note though, almost as soon as I’d woken up, I’d realised that the horrible toxic, sickening sensation I’d had inside my head, well that was completely gone.
Neil had brought my phone and some other bits in for me, but I told him to take it all home. I couldn’t see properly, and had no inclination to look at a screen, let alone speak to anyone any time soon.
The HDU nurse was an almost constant presence, and I was having my obs monitored every 30 mins.
She would do all the obvious things, pulse, blood pressure, temperature, then a full neurological check, asking me to lift my arms, push and pull, same with my legs, smile, close my eyes. I lay there wondering what she was writing down.
Neil took photos to show me what I looked like. A photo doesn’t lie. I looked a bloody mess, I had an uncomfortably tight compression bandage around my head and covering my left ear, my eye stayed open and my mouth wouldn’t move properly, no matter how hard I tried.
I had bruising down my neck, my arms were also bruised, presumably where canulas and various monitors had been inserted. Swallowing and talking were difficult and awkward. I understand now this was caused by trauma to the trigeminal nerve during surgery.
Neil and my mum didn’t stay too long. Whilst they were thrilled to see I’d come out of surgery, I just wanted to sleep. I was now this horrible bedridden person, completely unrecognisable from who I really was, unable to do anything for myself. I was no longer a runner, walker, climber, but someone who now needed help to drink water from a sippy cup (like old folks in a home use) with a straw.
No sooner had I dozed off, than I was woken by my nurse who needed to check my obs. I began to notice that something was seriously wrong with my vision. As I looked straight ahead, everything had turned 90° on its side.
I mentioned this to the nurse, and she reassured me that sometimes these things can happen, but she’d mention it to the ward matron (?) when she arrived for her shift. I was scared to close my eyes in case it got any worse.
The matron came to see me, and again reassured me that after major cranial surgery these things can sometimes happen, but that she would mention it to the on-call neuro. I began to wonder, if these things happen, why are they concerned enough to mention it to the neuros? What weren’t they telling me?
What if they needed to go back in and fix whatever was broken? I don’t think I could have gone through that again!
I tried to rationalise what was happening. I looked at the beaker on the table at the side of my bed. It was on its side. But the water left was straight, so I knew my world wasn’t really turned on its side, and people weren’t really walking on the walls, and the sink wasn’t really on the floor.
To add to this visual nightmare, I had horrific double vision. There was a clock on the wall above the door to my room – but there was also another door and clock, about 2 metres to the right of it.
I also had screaming tinnitus, like light sabres from a Star Wars film, in both ears. Yes, I knew I’d be profoundly deaf on my left, but please don’t tell me I would have to endure this for the rest of my life as well?
That night was quite possibly the longest night of my life. I was scared to sleep, I couldn’t stop being sick, and nurses came and went all night fixing me up with IV pain relief, anti sickness meds and saline as I couldn’t keep any fluids down.
In the early hours, the on-call neuro surgeons came to see me. They looked like they had just left high school! They explained to me that these things can sometimes happen and that I shouldn’t be concerned. Then I heard him explaining to the nurse that they won’t overly worry about it for the first 48 hours.
Of all the risks that had been explained to me, this wasn’t on the list!
It was a long night, and I couldn’t fight sleep any longer. I nodded off, when I woke, I thought I was going to fall out of my bed. But as the hours passed, very very slowly my world, whilst still extremely double, began to right itself once again.
My first visitor the next morning was Simon, my ENT. He’d popped in to see me, despite it being his day off. He reassured me that there was no need for me to look so terrified. If he’d been in my shoes that night, I’m sure he would’ve been pretty scared himself!
He reassured me that the team were really pleased at just how well the surgery had gone, and that with a bit of support I should make a reasonable recovery. ‘Reasonable’ wouldn’t be good enough for me though, and with that I was asleep once again.
Apologies for the lack of photos on these next few posts!
The day before my surgery, I had an appointment at my local hospital to discuss the results of previous x-rays and CT scans. They had shown lymphodenopathy (enlarged lymph nodes) in my lungs, and whilst they thought it was unlikely, they informed us that they needed to rule out lymphoma. I’d not even dealt with the brain tumour, and the next battle was already being lined up.
They had already notified my team at Salford of their concerns, and so a week earlier, I was called back to see Joe Sebastian, my anaesthetist, who was concerned as to whether or not I would be fit enough for surgery.
At that appointment, bloods were taken, my bp was high and had my pulse not momentarily dropped below 100 bpm, they would have requested an ECG. Thankfully, I was able to convince Joe that I was as well as I could be, and he was happy to go ahead. I went away worried sick that the slightest change to my overall health could change everything, and I just wanted this ordeal over with.
12th May 2018. The alarm went off at 5am. At no point over the previous few weeks had I struggled to sleep as I was so utterly exhausted.
I woke, went through the whole nausea vomitting routine and got up. I felt surprisingly calm. It was as though I had reached some new level of acceptance that it really was out of my hands, and like you let a pilot fly you to your holiday destination, I had to just trust these guys to do their job and get me to my destination.
I tried to drink some water, as I was now nil by mouth, and could only have fluids until 6am.
A bit like waiting to have a baby, my bags had been packed and ready to go for the last couple of weeks. The outcome of this trip was unknown territory though.
I popped to see my children who were still sleeping before we left; it was at this point the fear kicked in. What would I look like next time I saw them? What would they sound like through one ear? Would I ever see them again? I fought back the tears for Neil’s sake, as his day would be long enough without me giving him more to worry about.
We arrived at the hospital in good time and made our way to the admissions department. There were a couple of others also waiting to have surgery that day. I listened in to see what they were having done. I can’t remember now what their procedures were, but I remember wishing I was in their shoes.
I was given a gown, dressing gown, the oh so sexy compression socks and wait for it, paper knickers.
Blood pressure, pulse and temperature were taken, along with urine tests, pregnancy test (thankfully no surprises there!) , bloods were taken and cross-matched in case I should need a transfusion. The shit just got real. I messaged a few close friends, including my Navy buddies, and thanked them for their support. If I didn’t come out of this, I wanted them to at least know how grateful I was.
It was a comfort when my team, first the anaesthetist, Joe Sebastion and then Scott Rutherford and Simon Lloyd, neuro surgeon and ENT, came to see me.
Joe was happy with my obs, Scott went over the procedure, explaining to Neil that he would call as soon as I was out of theatre, and that he shouldn’t worry if it was 12 hours or more, and Simon began to go over the risks of surgery again, but I think the look on my face was enough for him and he said, “You really don’t want me to read through this again do you?” to which I replied, “Just show me where to sign and don’t mess up my face.”
With my barely legible scribble on the consent form, they went off to finish preparing the theatre.
They assured me I wouldn’t have to wait long, but if felt like a lifetime. My nerves were shot, I just wanted this over with. I gave Neil my phone to look after, along with my wedding and engagement rings.
Suddenly, it was beginning to feel very real and very scary. I desperately tried to calm myself, scared that if my blood pressure went any higher they might cancel. Whilst I sat there waiting, I cried. Little did I know it would be the last time I cried properly…
It wasn’t too much longer before a hospital porter came along with the trolley for me. As I got on and began to be wheeled away to theatre, Neil said “I love you”, and I knew that was the last time I’d hear him through my left ear.
Thankfully, the porter was chatty. It was probably somewhere in the region of a 10 minute ride to the theatre, along quiet corridors that almost looked disused. We talked about hobbies, and holidays. I told him I loved the mountains and I couldn’t wait until I could get up them again. We chatted about climbing, and the Alps and then the lift door opened and it was just a short distance to the theatre.
The theatre door looked more like an industrial fridge door, heavy and substantial. It was like entering an airlock on a submarine, or space shuttle!
As I was hooked up to various heart and blood pressure monitors, it was almost a relief to just be getting on with it. As the monitors began to beep, Jo inserted a canula into the back of my hand, and his assistant, another lovely lady, reassured me and gave me oxygen.
I felt the cold liquid snaking up my arm as the anaesthetic was administered. My eyes felt heavy and within seconds I was asleep…
I woke, and for a split second it felt like I’d gone into fight or flight until I realised where I was. I was almost immediately aware of 3 recovery nurses; one was at my side reassuring me that it was all over. I didn’t know what time it was. Just then, Scott came in to check on me. He told me that the surgery had only taken around 8 hours, which was far quicker than any of them had expected, given the extent of the haemorrhage I’d had. He told me it had gone really well, and they were really pleased they were able to remove 100% of the tumour.
It was only at this point did I feel utter relief. Preserving my facial nerve had been the priority, and I had kind of accepted that I would be left with a sliver of tumour in order to achieve this.
Then he told me, “You have a grade 3 facial palsy, but we’re hopeful it will improve over the coming weeks as your facial nerve was fully functioning when we closed up.” At this point I was still overwhelmed that they had removed it all. I can only describe it as an adrenaline rush. An overwhelming relief that it was finally over.
Little did I realise that this was just the beginning.
I couldn’t see and asked her to pass my glasses. She put them on, but I still couldn’t see. It was like I was looking through thick fog. So, I asked if she could clean them. “They are clean” she replied.