Listen to the most recent episode of my podcast: Hospital stays, bereavement and insomnia. https://anchor.fm/stuart-hannah3/episodes/Hospital-stays–bereavement-and-insomnia-e1tgher
Back inside despite good behaviour!
I have been back in the Leeds Royal Infirmary as my operation site had become slightly infected and I was suffering with really bad head pain. After a few days care back on Ward L25 I’m all sorted again.
If you need your faith in humanity restored, a stay under the care of the NHS will do it. The team here in Leeds are amazing, professional, fun, friendly and caring. Even at stupid o’clock in the morning
Just waiting to be discharged and head home. This part always seems to take so long.
Podcast Episode 2 now available
I’m too buzzing from the elation of my operation being done and being able to come home to sleep so I wanted to get my post op thoughts recorded in the hope that it might help me to drift off to sleep!
I hope you enjoy it! Stu x
MIDNIGHT ON THE MENS WARD:
MIDNIGHT ON THE MENS WARD:
It’s not always easy to get your recovery sleep in as the snores and other assorted low frequency noises rumble around the ward like thunder on the African savanna! I
t can be a little bit like those BBC wildlife documentarys about Africa in the dark, complete with little animal howls of men pain! The observations tablets computer screens provide an authentic blue light like a bright African full moon.
And My Podcast Is Back up!
Well after a rethink, I have launched the podcast again. No Spotify playlist integration, just an old school relaxed chat about living with a brain tumour diagnosis.
If you would like to hear it, the new episode is available on Spotify and Amazon Music and sometime tomorrow will be on Apple and Google podcasts. just search on the podcast app for ‘The Brain Tuner’.
And, stand down again!
Operation number 2 cancelled for a second time. There is only one thing for it, a Wetherspoon’s breakfast and a curry tonight!
I’m not upset, I have got myself to a place where I am excited to get the operation done but equally since my Neurosurgeon doesn’t think it’s urgent then I am perfectly happy not be messed with for a bit longer.
“A pint of cobra and a madras for me please buddy”
A Date with Destiny…..or not
Well I have a new date for my Craniotomy but I’m keeping it to myself this time. Everyone is so kind and supportive that I can’t bring myself to make a big announcement and waste everyone’s kindness and emotional energy.
Just going to announce when it’s done, and from reading posts on The Brain Tumour Charity site from fellow warriors, I could have another three attempts at this so I’m going to have a think about where my next post cancellation drinks will be 👍
The ’T’ Word Part 11 – A Fear of Flying.
Conquering fear with knowledge.
As I approached my first operation to remove one of my two brain tumours, there was so much that I didn’t know about what would be happening to me that my immediate reaction was fear. By the time that my operation day came I was able to be calm, cheerful in fact ( something that I have discussed in earlier posts).
I have mentioned before that finding Stoicism was a huge help but it wasn’t the only thing that helped. The other discovery that I made was the power of knowledge over fear. I read somewhere about the belief that many of our fears (operations, flying, dentists etc.) come from a fear of the unknown, a lack of knowledge about what is happening or going to happen.
Be afraid, be very afraid!
The first big fear in my life that I had to conquer was a fear of flying. I actually thought that I loved flying when I first flew in 1985 (the year I got married) when I had the chance to travel to Malta for a product launch. On the outbound trip someone else in the group offered to drive the minibus to the airport, which meant that I could drink with the rest of the group, so it was a slightly squiffy Stuart that boarded the plane. I loved the thrill of take off, the beauty of the blue sky when we were above the clouds and the amazing views of Malta when we were on approach to land.
For the return trip, I was volunteered to be the driver when we arrived back, as I was the youngest and therefore would be the least tired (apparently) when we got back to Heathrow. This meant that I didn’t drink before the flight. My experience of flying this time was horrific, take off was terrifying and as we banked to set course for home I felt like we were going to fall backwards out of the sky despite the fact that in reality we were probably already moving forward at over 180 miles per hour.
This was now a problem as within a couple of months I would be flying to Italy for our honeymoon, so on top of the terror of the Grooms speech, I was now quietly stressing about the flight. Our wedding day arrived and as amazing as it was, the Grooms Speech nearly made me throw up! These days some Grooms refuse to make a speech and I don’t blame them. Then came the flight to Italy for the Honeymoon. As expected it was awful and I had to quietly zone out to remove myself from the situation (my coping mechanism for flying that I used for a good few years) as I didn’t want to spoil the excitement for my gorgeous new wife.
I have never let my fear of flying stop me from travelling anywhere but it spoilt the start and end of many family holidays. I somehow managed to hide my fear from our kids as I didn’t want them to be scared too.
Never show weakness, especially to your friends.
Some people especially male friends can be pretty merciless when they discover your weaknesses and on one business trip in the late 1980’s a large group of us toured France in order to visit all of the production facilities of the company that we worked for. Every damn take off was accompanied by lots of faux screaming about crashing….bastards!
I did get some justice though on one of these mates. Chris and I decided to go up the Eiffel Tower on one of our free days, so we took the two lifts to the main viewing platform. I walked out and looked out over Paris (through the anti jump mesh of course) and said something to Chris about the view but got no reply. When I turned to see where he was, all that I could see were the tips of his fingers gripping the door frame and Chris’s eyes peering out.
I wandered back over to him and asked what was wrong “I can’t come out, I just can’t” he replied which made me let out a loud laugh, “so you’re Mr brave when it comes to flying but you’re scared of this. At least this is bolted to the ground!” I never let him forget that.
Becoming a frequent flyer
As my career progressed I was required to fly with increasing frequency so I decided that I needed to somehow conquer this fear of flying. I researched everything that I could about flying, how airliners are flown, what the procedures are that pilots follow when on flights, and instead of zoning out with some music, I listened to the aircraft, to what noises they made, when in a flight to expect them and what they were. With my growing knowledge & familiarity I felt the fear steadily reducing until I suddenly realised that I was now actually enjoying the experience and I was now one of the relaxed people chilling in departures.
With this new found knowledge I would find myself grinning like a big kid as the flight crew pushed the engines to full thrust for take off and you got that kick in the pants as the brakes came off. The thrill of watching the world whizz by and that amazing feeling of freedom from ordinary life as the aircrafts nose pitches up and begins its climb into the sky, fantastic. I wasn’t even bothered the time when just after push back at Copenhagen airport we had to pause on the apron to let an engineer on board who after some rather alarming hammering cleared us to take off and no one wants their aeroplane fixed with a hammer!
Another thing that I discovered as I transitioned from a scared flyer to someone who loves it is that you can easily forget what it is like to be scared of it. On another trip to Denmark with a work colleague I noticed my good mate Phil gently tapping his finger on the underside of the tray table in front of him. When he saw me notice this, he explained that he had seen someone, about his fear of flying and one of the coping methods they had taught him was this tapping under the table so he could subconsciously feel that he was in fact keeping the aircraft in the air. I thought it was a great idea but a few minutes later I completely forgot our conversation. In my excitement about a low approach over Copenhagen I blurted out “Wow look at that view, we are really low” Phil gave me a dark look, started tapping his finger frantically on the tray table again and replied with a curt “no thanks”, I can be such an insensitive doof sometimes!
On yet another flight to Copenhagen I discovered that another of my colleagues, Reetu, was not a great flyer. The final approach into Copenhagen’s Kastrup Airport is over open water leading to the North Sea on one side and the Baltic Sea on the other so is frequently windy as you can imagine. On this flight it was a day when it was extremely windy on approach and on the route from Birmingham to Kastrup, it is normal with SAS airlines to fly on a reasonably small plane, the Bombardier CRJ900 with only two seats on either side of the aisle.
As we descended I looked across at Reetu who was gripping the arms of her seat and looked very alarmed. What she couldn’t see was that we were approaching the runway threshold almost sideways on, something that I could see through the window on her side of the plane. As usual with that kind of landing, the pilot flying waited until the last moment before lining up the aircraft with the runway and cutting power. We hit the ground with a loud bump and Reetu looked very pleased to be down!
Without question, my favourite aircraft is the enormous Airbus A380, a double decked beast that makes a Boeing 747 look small. We have flown on A380’s many times on our trips to New Zealand, both with Emirates and Qantas. One flight that I especially remember was on an Emirates A380, flying the last 7 hour hop from Dubai to Birmingham. We left New Zealand basking in summer sunshine but back in the UK it was the depths of winter and a huge snow storm had blanketed the UK.
As we crossed the English coast our pilot announced that we were in a holding pattern over the south of England to give Birmingham Airport time to clear the runway of snow but not to worry as we had plenty of fuel and plenty of coffee. After about 20 minutes I felt the plane accelerate but the pilot immediately made another announcement that the good news was that we could land but the bad news was that we were being diverted to Manchester Airport. This was a real pain as Birmingham is a two hour drive from Manchester especially in bad weather and of course our damn car was in Birmingham, so we would all be put in taxis for a terrifying high speed drive on a snow covered M6. Although Manchester Airports’ runway was still open, the weather was appalling and I warned my wife that our landing could be a bit rough. When it comes to flying my wife always used to be the confident one but now it is her that gets worried and my little announcement didn’t help.
Despite her size, our A380 was bouncing around like a toy and in another moment of classic Stuart insensitivity, I had my ‘In Flight Entertainment’ screen set to view the CCTV camera mounted in the planes tail fin. This unfortunately gave a perfect view of the runway lights which were jumping around the screen as the plane bounced around on our approach. There were a lot of nervous looking people on that plane (apart from me sitting there with my inane grin on my face) and my wife was now holding hands with the woman sat next to her that she had not met before the flight.
We slowly descended and after a while I realised that not only should we have landed by now, I could also hear the sound of the engines spooling back up. “I think we are going around again” I said, which did not cheer my wife and her new buddy up one bit. Sure enough we heard the loud clunk of the wheels retracting as the nose of the plane finally pitched up and the huge machine began to climb back into the sky. I calmly pointed out that the pilot will not put us at risk and go arounds are no big deal. In fact we have landed many times in Windy Wellington (NZ) and not had to go around despite this being commonplace for Wellington Airport.
We came in again (with my screen off) and this time the pilot nailed it and there was a cheer from some passengers as the wheels touched down. I never doubted the pilot for a second.
How I learned to love flying
So how have I gone from gripping the seat arms wetting myself to enjoying rough landings in a blizzard? Knowledge, that is the secret.
I knew that flying was always going to be a part of my life, both because of my work demands and because of having a daughter (and now Grandkids) living in New Zealand, so I set about learning every aspect that I could about flying an airliner. I watched endless take off and landing videos on Youtube (there are actually channels for this) and watched Aircrash Investigators on TV, this might sound odd but you soon realise how safe flying is, by the long time gaps between major incidents. I once saw an episode about a Boeing 747 which tumbled about 22,000 feet before the crew recovered it and landed. If they can survive that you know that you are safe.
Also there is the blindingly obvious fact that neither the flight crew or cabin crew would go to work every day if they thought for one second that they wouldn’t come home! Apart from lifts, flying is the safest way to travel, safer than cars by a country mile.
So what has this got to do with brain tumours?
When I got the call from my GP to say that an MRI had found two brain tumours, I couldn’t help but be stunned by this news. In that first call they couldn’t even tell me what tumours I had. We found ourselves sitting quietly, trying to take it all in, the news that changed our lives. I do remember feeling very calm the next morning. My wife and I sat quietly sipping our morning coffee together. She asked me how I felt and to be honest I had got my mind into a place of acceptance, that if this is the beginning of the end, then I feel that I have been lucky enough to have had a good life. I worried, not for me, but for her and our children but I took comfort in knowing that our adult kids are well equipped to stand on their own and that they would be there for my wife.
I’ve written about my first consultations with my Neurosurgeons in an earlier blog but the key thing that we did was ask a lot of questions, the good, the bad and the ugly, so that we had as few surprises as possible. With the information that my surgeon provided I could approach my operation calmly.
I think that if I were asked for advice on how to cope I would say, take what you know and plan for your best life post operation. If the prognosis is terminal then you don’t have a moment to waste, you need to cram a lifetime into the time that you have. If the consequences of surgery and treatment are going to be life changing then get planning and get your plans in line with the predicted outcome rather than dwell on how unlucky you feel.
Focus on being adaptable and out-manoeuvring your enemy within, so that you can retain a feeling of control over your circumstances.
I have also blogged and discussed with other Tumour Warriors the subject of not letting your hospital become this fantasy chamber of horrors in your mind. Hospitals are staffed by people who just want the best outcome for you.
If you are on your brain tumour journey already or have just started, remember that old adage that ‘knowledge is power’. Not knowledge from Dr Google but from your Neurosurgeon, from NHS online resources if you are in the UK, from charities such as the Brain Tumour Charity and of course through groups of fellow warriors online. Arm yourself with knowledge and don’t be a victim of your tumour, be a survivor. Make a plan, work around the problem and focus on what you can control and maximise those aspects of your life. Try to find a way to accept that you can’t control everything so that the parts that you cannot change are just a part of your life now.
Your new life is boarding now.
With this knowledge and way of thinking you can let go of the fear and enjoy life’s ‘Long Haul Flight’ with positivity, gratitude for the good things that you still have in your life, however small, and laugh in the face of adversity.
It’s time to head to the departure lounge for your new life journey.
The ‘T’ Word Part 10 – On the wind down from the operation that never happened.
It’s a strange feeling to be sent home from a cancelled operation, an anti climax that’s hard to describe. As the days and hours tick down to your operation (in my case a Craniotomy to remove a brain tumour) you expend a lot of energy trying to keep yourself together and still live your life even with this big event looming over you.
Those who’ve read my previous blogs know that I drone on endlessly about the benefits of Stoicism but it absolutely has helped me to deal with the build up and more importantly the big come down of being sent home with my unwelcome friend still in my head. Stoic thinking teaches that we accept that we cannot control events, only how we react, so I have not allowed myself to get down or angry.
No matter how Stoic you try to be though, the simple fact is that it’s exhausting staying calm and positive as you burn up nervous energy suppressing the little doubting voices that constantly try to sow doubt about the potential success of the procedure and of how you might be once it is done.
I have a lot of friends in the NHS, one very experienced friend pointed out that people who go into hospital with a positive and upbeat mental attitude do much better and have better outcomes than those who don’t, so all that energy spent on positivity is worth sacrificing in my view.
So it’s back to the waiting list and until the new date, trying to get on with life. It has really hit my wife hard as she was looking forward to me starting my recovery and hopefully leaving this period in our lives behind. She is feeling that life has once again gone on pause and with good reason.
I still have faith in my surgical team but maybe not so much faith in the funding and support that the NHS gets. The NHS is not the buildings, it’s the people. They and it’s patients deserve better than they are currently getting.
We must not forget our ‘Key Workers’ when COVID:19 is gone
“We have the opportunity to change our nation for the better as a result of this health disaster by making our kids realise that they can genuinely make their mark in the world, not by some vague dream of fame but by working in the key worker careers right in front of them”
Since the UK was put into lockdown, the profile of NHS workers, care workers and those people who work in the food supply chain has rightfully been raised. The weekly ‘clap for NHS heroes’ has expanded to be a celebration of everyone who must risk catching the COVID:19 virus in order to keep the rest of fed and in the case of the NHS, keep us alive.
One thing that really concerns me is that when normality returns, and we go about our normal lives, we will forget these ‘key workers’ and go back to worshipping vacuous celebrities on Love Islands, overpaid footballers and wealthy movie stars.
In the midst of the COVID:19 crisis, with most of the population confined to their homes for the larger part of the day, we have all had the time to take a look at the world through different filter and with the noise of normal life gone, and a very clear and present danger outside our homes, we have begun to see what really matters to us. Separated from loved ones, we can see that it is time with them that we need and miss.
It is an unescapable truth that over recent decades we have worshipped the rich and famous. Many kids began to believe the lie that ‘wining the X-Factor’ or some other generic talent show was a career choice, and it was not about the music, it was about the fame.
Football players have been able to earn obscene amounts of money ‘because winning is what matters’, and actors earn more money pretending to be surgeons and doctors saving lives than real surgeons and doctors could ever dream of earning for ACTUALLY saving lives. This is a world gone mad.
We have the opportunity to change our nation for the better as a result of this health disaster by making our kids realise that they can genuinely make their mark in the world, not by some vague dream of fame but by working in the key worker careers right in front of them.
Whatever the education level of an individual, they can find their place in the health sector. Not everyone can become a doctor, surgeon, radiographer, nurse or any of the medical careers that require qualifications, but everyone has a chance to become a care worker and although the doctors and nurses get most of the coverage, it is often care home workers or home support workers who can make the biggest change to the quality of life for the elderly or those with special care needs.
Care workers can make a real difference and be real heroes, every day, to someone.
Surely it is time to look at the world differently and reset things. It has not been film stars, footballers, city financiers, Youtube influencers or reality stars who have been making a difference during the pandemic.
We need our young people to stop feeling that the only measure of a successful life and contribution to society is fame and money.
We have seen ordinary people do special things, from medical workers putting their lives at great risk for others, shop and food warehouse workers pulling long shifts to get food delivered, through to individuals like the now famous Captain Tom and his charitable efforts in aid of the NHS and Care Workers. Let’s keep that better side of humanity alive after COVID:19, lets make sure our kids see the value in working in health and care sectors and we must push our politicians to keep their word and protect our amazing NHS. Oh yes, they could also make sure that NHS workers and Care Sector workers get paid properly for the care that they give and the real difference that they make….we will be watching Boris.