Tag Archives: Brain

You Won’t Like Me When I’m Hangry

A wee video of Heather post op:

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After being ill on Friday and an emergency visit to hospital we awoke on Monday morning with the very real prospect that surgery might not go ahead.

We had been up late chatting and putting the finishing touches to the FUCancer playlist from all the suggestions Heather had. I spent most of the night adding in some Kiss and AC/DC to balance out the Britney and Kelly Clarkson tunes.

I awoke at 5.30 am to the sound of the playlist up to 10 and Heather dancing around the room singing along, it’s moments like this, when you realise Cancer doesn’t stand a chance with this girl.

It’s fair to say Parsnip was not happy with her mummy’s mood, burrowing under the duvet and refusing to come down for her breakfast.

After showering and getting ready there was time for 30 minutes more dancing and singing before we left for the hospital at 6.30 am.

Heather collected her post it note affirmations from the mirror and encouraged the whole family to adopt a superhero pose.

A few more tracks from the playlist and we were at the hospital. We were about 45 minutes early and the walk we had planned to kill time was quickly abandoned on realising that the best summer weather ever had gone and it was absolutely minging out there.

We then sat with a series of doctors who would be managing the surgery, going over the risks and confirming Heather’s consent.

With each new doctor or nurse we had to explain Friday’s nightmare, knowing that this might mean the surgery would be cancelled.

The decision was made to go ahead and it was time to say goodbye and although Heather didn’t have her cape and spandex she was ready for another city levelling super battle, as she was wheeled into surgery in her gown and slippers.

With all the chat about Friday I had forgotten to mention to the staff that Heather was a real life super hero and that normal needles wouldn’t pierce her skin, special equipment would be required to operate on her and control her super strength.

The NHS bill for Heather’s treatment in recent years was huge and has been priceless for us, thankfully they have never sent us an invoice for equipment damaged, while treating this super specimen.

In similar fashion to Dr Banner, 4 years ago Heather was exposed to high levels of radiation, as treatment for her cancer. 

Unfortunately it doesn’t work like the movies and the result of this life saving treatment is years of side effects that impact your daily life.

Thankfully for us Heather already had a hulking green monster inside her and anyone that knows her will agree “you won’t like her, when she’s hangry”.

The last time they tried to strap her down for a procedure (Brachytherapy), she awoke to find stirrups bent out of recognition, apparently not designed for super thighs.

On Monday they would be cutting a hole in her skull, exposing her brain, her head pinned into a brace with three prongs, held in place with 60 pounds of pressure.

As I left the hospital my mind flashed back to the pre-op questions, “when did you last eat Heather”, “I had a biscuit at 9.30 last night” she replied.

Panic hit my body, Heather now hadn’t eaten for over 12 hours and hanger would be setting in.

There was no time to call Thor or ask Tony Stark to fly in his hulk buster, all I could do was pray that she could keep it under control.

The day was a blur, spending time with family and trying to distract myself from the reality that whatever happened today, my life with Heather would be changing.

I was expecting a call about 2.30 to say how she was, it didn’t come. I knew it could be later, but that didn’t lessen the worry, when the call didn’t arrive.

I felt like I was having a panic attack and found myself wandering aimlessly trying to control my breathing.

About 4.30 I got a call from the surgeon who had led Heather’s operation, his name isn’t Professor X or captain America, but he was the leader of a team avenging Heather against cancer.

He told me that it had gone well and that she was moving her arm and leg, one of the biggest risks was damage to Heather’s motor strip and that she might lose use of the left side of her body. He repeated this a few times, before I clarified “both arms and legs?”, “Yes both” he replied. I was overjoyed, the NHS aka the Avengers had done an amazing job again, despite the challenges of operating on a super human….“BUT” Professor X stopped me in the middle of my 5th thank you speech and said “there was a slight problem”.

When they woke Heather up, having earlier anaethetised her with a combination of gas, morphine and kryptonite.

Sitting with her brain exposed and her skull pinned in place Heather came too with an empty belly. Her skin quickly turned from pale pink to deep green, her hospital gown bursting at the seams. Flexing her arms and legs and with one swift motion of her now bulging 23 inch green neck she broke free from her shackles.

The Avengers jumped into action, Professor X covering her exposed brain to prevent the pins causing her serious injury, while Wonder Woman grabbed the equipment and quickly intubated Heather with a high dose of kryptonite, putting her back to sleep.

The “awake craniotomy was off the cards, the carefully plotted out procedure couldn’t continue in the decimated city scape that surrounded them.

The Avengers moved to plan B and pressed on with the operation. Professor X no longer had the feedback that an awake craniotomy provides and would need to use ultrasound and judgement to remove the tumour.

As he relayed this story I felt slightly embarrassed to have earlier been on the verge of a panic attack, while waiting for a phone call. For Professor X and the Avengers there was no panic, there was calm and composure.

At 5 pm we were allowed to visit Heather, as I walked in the room I saw my beautiful wife smiling back, looking better than she had done on Friday in St John’s hospital.

She immediately began apologising for destroying a city scape during the operation. I could almost hear the sad piano music from the credits of the Incredible Hulk in the back ground, as he walked to another town regretting the destruction and chaos he had left behind.

After apologising 50 times we received visits from Professor X, Wonder Woman, Captain Marvel and various other members of the NHS Avengers, all were happy with how the operation had gone.

Heather spent the next hour slagging her dad and I, singing songs about “peeing freely” and telling constant jokes.

Draped on the end of the bed was a red thin shiny piece of fabric. Heather had hung up he cape for now and along with the NHS Avengers she had earned a rest!

However there was one more mission and I her trusty sidekick, would have to complete it alone. Was I up to the challenge? Could Penfold fill in for Dangermouse, could Robin star in a standalone movie without Batman? What would my mission be?

“Seeing as I won’t be there, please can you sing Parsnip a song for me, when you get home?” This I could do, “What song?” I asked. She replied with a serious expression on her face, pausing for effect, such was the perilous nature of my task…“Nobody does it better by Carly Simon”.

So if you hear a whining noise tonight, it’s not the cats on the wall outside. Look out your window and you might see a grown man slow dancing with a sausage dog murdering a great song, in the name of saying FU Cancer.

Leaving Limbo

On Wednesday I met with the specialist to review the results of my scans. Following his advice we have decided to go ahead with surgery in September which will aim to remove as much of the tumour as possible. Due to its location this comes with inherent risks which could lead to long-term impairment physically, sensory and visually. In an attempt to minimize these potential side effects the surgeon will be performing an awake craniotomy. If, like me, you are a Grey’s Anatomy fan then you will know what this entails but as the name suggests – they plan to wake me up mid-surgery. In doing so they will ask me to perform certain tasks so they are able to remove as much of the tumour as possible without impacting the surrounding areas.

As the reader I am sure you will find it a lot to digest. Major surgery… on your brain… whilst awake! Crazy hey?!

So, how do I feel? In all honestly I feel very calm. After an hour long appointment with the surgeon where myself, the Funny Boy, Iceberg and Buggernuts asked many questions I left feeling strangely at ease. This is the most relaxed I have been since having the seizure and I think it is because knowledge is power! It’s cliché but it is true! I hate life in limbo – the not knowing, impossible to plan, unable to see my future beyond the next few weeks is difficult. At least with this I now feel like I know what I am up against over the next few months.

Many of you have already been in touch asking how you can help. So here are two things I need from all my family and friends..

  1. I want to make full use of all my abilities whilst I can so over the next few weeks I want to do as many fun, active, outdoorsy things as possible. Particularly if they are things I have never tried before.  I will be using my annual leave before surgery and hopefully making some trips – so, if you have any suggestions and would like to join in please let me know.
  2. I want  NEED you all to PROMISE me that if my motivation drops or changes when I come through surgery that you will remind me of how stubborn, determined and able I really am! You have full permission to kick me up the butt!

I am not one to dwell on things, I am looking forward and I would strongly encourage you do the same too. Before I draw this entry to close and head off to play hockey, I have a secret obsession with Winston Churchill – what a man, what a life! He has a wonderful way with words so I will finish with one of his many, famous quotes:

Success is not final, failure is not fatal: it is the courage to continue that counts!

And as always, #FUCANCER!!!

Unprepared

I met with the neurosurgeon on Wednesday. It was a very different experience than when I first met my oncologist. When I met my oncologist she was very direct and came to the appointment armed with a clear plan of how they intended to treat the tumour in my cervix. I was prepared for a similar style meeting – I had planned a list of questions largely focusing on treatment, side effects, timescales etc. But this appointment was very different.

Any treatment – regardless of where it is targeted – comes with it’s own set of risks and repercussions. But it is only now I am beginning to fully appreciate how complex an organ the brain actually is. Treatment in such a delicate area and the side effects are all the more acute. A lot was discussed and it has been a huge amount to take in. The anti-seizure medication alone warrants its own set of side effects, one being ‘rage’ – not the best news for someone who’s nickname used to be Ragebox! (Watch out Funny Boy!) The situation is far from straight forward and each option has a range of potential risks and benefits. Decisions need to be made and in order for those to be thought through thoroughly more information is required. I struggle to decide what to wear on a day-to-day basis so this is going to be tough. For now we are taking time to do more tests, time to review our options and time to decide our plan of attack.

So how am I feeling?

My good friend put it best when she said ‘Cancer f*cks with everything’ and on this occasion I have an extended list of life admin as a result of my new diagnosis. I spent today drawing up a spidergram to help manage the tasks within my control. I feel completely unprepared for how life is going to change. I am trying hard to pre-empt and where possible minimise these changes but already I am feeling a loss of independence – the luxury of being able to drive wherever and whenever I want is something I definitely took for granted. My poor dad is definitely feeling the strain as chauffeur – not because he hates driving – because he can’t listen to the cricket when I’m in the car!

I haven’t had a big emotional break down yet. Despite glassy eyes on several occasions I have managed to keep all tears at bay but this is not to be confused with me ‘putting a brave face on’! Believe me – I have the best support system who are actively waiting, encouraging, hoping I’ll cry! But the reality is it still doesn’t feel real and despite breaking the news to friends and family I don’t feel like this is happening to me. I don’t feel scared for what lies ahead I simply feel unprepared.

#FUCANCER

FUCancer

In the early hours of Wednesday morning I woke up to find 3 paramedics in my bedroom. The Funny Boy had called 999 because I was having a seizure. I don’t remember this clearly. Even sat in the ambulance I found myself struggling to remember what I had done the day before or even recall my boss’ name. As soon as I arrived at AnE they prepared me for a CT scan which required a cannula.

Having a cannula is a familiar process for me and one the Funny Boy has witnessed thousands of times. However, the shock of seeing me have a fit and perhaps the early hour took its toll on my poor Funny Boy – as he slowly let go of my hand and proceeded to headbutt the X Ray machine I watched him plummet to the ground. He had fainted. This was enough to send me over the edge and as I cried out for him, the nurse called out for assistance. Our bay was quickly filled with more staff and a doctor eyeing up a pretty spectacular cut above the Funny Boy’s left eye. As the Funny Boy regained consciousness the doctor said ‘I think you’ll be leaving here with a few of my sutures…’ – he was right! Before I knew it the Funny Boy was lying in a trolley next to me with four new stitches and a pretty impressive black eye!

Unfortunately my treatment wasn’t quite so simple. The CT scan identified a lesion on my brain and as a precaution the hospital staff didn’t want me to leave until I had a MRI. I was transferred to the Observation Ward whilst I waited.

Life can be pretty bizarre sometimes. For example, a fortnight ago I was stood at a Ladies Lunch in front of over 460 people sharing my experience of cancer. Within that speech I actually said ‘my life is in a pretty good place’ and that’s because it is. As a Fundraising Manager for CRUK I have a job I am very passionate about, I have recently completed my first full season back on the hockey pitch, i am feeling fitter and stronger than I have in years and to top it off I not only have the BEST collection of family and friends but an awesome sausage-shaped sidekick too.

So, to be sat here breaking the news that I have a new cancer is unexpected to say the least. On Friday the MRI confirmed I have a tumour in my brain. Thankfully, I have been allowed to return home whilst I wait for my referral to Neurology. I don’t know how I feel at the moment – more than anything I can’t believe how unlucky I am! On a lighter note, at least I look a lot better than the Funny Boy… Fingers crossed his fainting episode was a one-off!

As always #FUCANCER!

The Funny Boy after his incident with the X Ray machine in AnE