Where am I now?

I have found lethargy is a huge factor. Sitting watching tv is soul destroying (no disrespect to the makers of day time television programmes) but it sends me to slumberland.

Monday my inner sanctum took me to Moseley Old Hall (amazing day out). Laughs, food and history. Owned by the National Trust, Charles ÌI hid there – check it out.

Yesterday my brother in law took me to the local pub for a drink. Please be assured I did obtain medical advice before leaving hospital and the nurses on ward 407 QEHB (Angel’s all of them) told me a drink in moderation with my medication was acceptable. (Always listen to the professionals). No heavy machinery was operated during this episode as that would be irresponsible haha.

Overall how am I feeling?

I get frustrated with the situation I am in, which is unfair because I am not the only one having to deal with this. My loved ones are trying to be strong for me but still maintain their every day lives whilst I rest as instructed, and conserve my energy for the next stage of treatment.

My enemy is invasive and sends my emotions up and down sometimes. I have 95% upbeat and 5% melancholy periods which does no one any good as loved ones can tell and then I feel guilty for trying to hide it and upsetting my support network.

I know I am not the only one going through this and so to others going through it, I salute you all.

I say to cance: ‘Futue te ipsum’

Waiting for the next stage

As I mentioned previously, my early departure was delayed due to my heart ache (no pun intended).

Further ECG tests and an echo showed the left ventricle of my heart was irregular. Is there anything regular about me I hear you ask?

I was released from hospital 2 weeks ago and I am now back at home recuperating but boredom has began to kick in.

Boredom is a major factor that one needs to combat and my way of ‘keeping busy’ has been a bit of retail therapy. Amazon and eBay have been my 2 favourite sites to visit over the last few days. I’ve bought 18 books, read 6 and still have 12 left. I’ve also bought a mountain of sweets, mints, brandy snaps and cakes to work my way through. I’ve also had some lovely days out with my wife Alison, daughter Charlie and her dog Daisy.

I’ve compiled a list of music I would like to listen to should I reach thermopylae. Listening to it, most people would probably say the artists should be shot for allowing me to put them all on one play list. I have gone from ABBA to Sigue Sigue Sputnik and all polyglot of emotions from highs to lows with every genre of music. I have cried at some and screeched in my tone deaf rendition of others. I apologise to music lovers everywhere for my choices but I enjoy them.

Since being home, my sleep pattern has been disrupted with my internal clock making me sit up in bed at 3.30am or earlier before dozing off again. As a result, I have started listening to meditation tapes to help me to relax and I am trying to learn a foreign language to stimulate my brian. I will keep you all posted as to how this goes.

Night before operation

Tuesday 15 July I was admitted to Queen Elizabeth Hospital Birmingham at 8pm ready for my operation the following morning.

Yes I was more than scared and not just for me but for my family. The consultant had explained that due to the position of my tumour I would need to be awake for part of the operation – an awake craniotomy. As if having your head opened was not bad enough but to be awake whilst they carried out this procedure was even more nerve-wracking.

I was told the operation would take approximately 8 hours in total.

I was down as the first operation of the day and before the op I had to drink a pink drink called 5-ALA that actually highlighted the tumour pink under UV light so the surgeon could get as much of it out as possible. The downside was I had to be covered from sunlight and curtains had to be drawn as the drink could cause 2nd degree sunburn if I was exposed to any kind of light. I also had to be wheeled down to the operating theatre totally covered by a white sheet, sorry to anyone who thought a body was being taken down to the morgue, I assure you I was far from dead.

The consultant spoke to me before I went into theatre and explained that I did not need to be awake after all as he could do the surgery without waking me up, so the operation was going to be shorter than first envisaged. Great for me but imagine my family’s concerns when they were told after 4.5 hours I was back in recovery instead of the 8 hours they still thought it was going to take.

I was covered up again after the operation and taken back to my darkened room.

After the op my surgeon, Professor Colin Watts, told me he was happy and all was good from his point of view. He said they would monitor me but could see no reason why I could not go home the following day for convalescence.

Fate deals a cruel hand because at 9.30pm that night I Facetimed my wife to say I love you and that I was looking forward to coming home, then a nurse came round with my meds and ten minutes later, boom!! Pain in my chest and my head felt like it was being stabbed with a knife.

An ECG was done and a doctor was called. He thought it was indigestion and gave me some pepscan and liquid morphine and by midnight I was calm again.

The next morning a second ECG revealed my left heart ventricle was irregular and they thought I’d had a heart attack.

Cardio thought the heart pains may have been related to surgery but the Neuro Team had not seen this before. So the following day turned into another week of observations and I was unable to go home.

This was unreal. I was climbing the walls.

Day 2 – 12

My background is I was adopted at 3 weeks old and I have a half sister, but we aren’t close. My parents died in 1982 of breast cancer and 1984 of leukaemia so I have a fear of hospitals. My wife who I love totally was diagnosed with breast cancer 5 years ago and is in remission so hurrah for medical advancement. I also have 2 amazing bairns who are my world.

Being transferred to Queen Elizabeth Hospital Birmingham was nerve wracking for me. A second MRI and CT scan to view the extent the problem scared the bejeezes out of me.

I was then told the results showed it was an abscess and not a tumour and could be treated with antibiotics which made us breathe a sigh of relief.

Shit, canullas bloody hurt, however a biopsy was carried out that same evening to confirm diagnosis.

I was then told I would be monitored in hospital and it was then the tests revealed that unfortunately the mass wasn’t an abscess, it was a grade 4 aggressive tumour which required surgery, part of which would require me to be awake as it was pressing on my speech cortex.

The consultant explained they had not encountered a tumour like mine before – do you think they say that that everyone? He also told me a further MRI was required and once carried out I could go home pending my operation appointment.

Being told this news in front of your loved ones is heartbreaking but the worst part was that during this time my son was on holiday in Canada so a decision was made not to tell him until he came home. Some disagreed and said I should tell him immediately but I didn’t want to spoil his holiday. My decision my rules. The call to him when he came home is not a conversation anyone would want to have. I kept it factual and brief until he said he was coming over. Scare number two came when he said the journey over here would take an hour and it took him nearly 2. Jeez I worried the whole time. Turns out he had picked up his girlfriend on route which is why it had taken longer.

When he arrived he noted the plaster over the left-hand side of my head and I explained the diagnosis, that an operation had been arranged for 16 July and the risks involved. I also told hin the operation may not work or, having opened up my brain, it was found nothing could be done, however the surgeon was confident it would be successful.

I was let out for the weekend on 12 July and to me, this was freedom. Sorry hospitals but one had started to become institutionalised.

I was re-admitted on the evening of 16th July ready for the operation the following morning. Was I scared? Oh hell yes. I could not sleep the night before, my mind was in turmoil.

Day 1

So how did I get to this point. My story started on 3 July woke up 6 o clock for work, had my breakfast and went to brush my teeth. Bammmm found I was excessively drooling and thought jeez I am having a stroke.

Panic sets in as you can guess, stuck in the smallest room with family unable to get access to you. I opened the bathroom door and found my speech had gone but though clarity was still there I ended up banging on the floor trying to attract attention from my daughter and wife. They have this uncanny ability to think each others thoughts, mine was my daughters dog hearing me.

My wife thought I was having a choking fit and carried out the heimlich manoeuvre on me.

An ambulance was called and paramedics thought I had experienced a stroke.

I would prefer it better to drive an ambulance than to be inside the back of one.

New Cross Hospital carried out a CT scan and then came the news a shadow had been located on the side of my brain and that was what had caused me to have a seizure and not a stroke.

Family members stood around the end of your bed and hearing this news gives one a sense of helplessness.

A further CT scan revealed my invasive enemy was located nowhere else in my body. The shadow was a primary cancer.

It was decided to observe overnight and arrange for me to be transferred to Queen Elizabeth Hospital Birmingham as soon as possible.

2am the next morning I was transferred across to QEHB for an MRI and further tests.

My 10 battle campaigns

I am currently fighting an enemy not of my choice. I did not start it and may not possibly not finish it. My enemy chose me based on no particular qualities. My enemy is cancer. It has no respect for age, diversity, religion, gender or political affliction. It does not see you as a number for a daily quota, it views you as a target. Hence I am one of those targets.

I have detailed this war as a series of battles I must take part in in order for me to cause it the most damage. I have listed the battles in order of my believing I can win them until the final one (which at this moment in time is unlikely, my treatment is treatable but no curable. It is #glioblastoma level 4).

1st battle

Normandy 1944.

This is my first battle against an enemy who believes it can win. It has raised it standard based on fear and intimidation. I will storm the beach and build my bridge head to move forward using whatsoever cover I can. These are my tentative steps in its territory.

9 Cannae 216 BC

This ought it was in invincible. According to hannibal plans. I was a classic ‘double envelopment’ in which an inferior force is able to defeat a superior one on open ground. Despite defeating 2 armies the enemy with more resources still continued to pursue.

8 Quebec 1759 (heights of abraham)

Some may say the enemy was already a spent force as their resources were limited. This battle was won by inguinity led a a daring attack from a direction the enemy was not expecting

7 Stamford bridge 1066

The enemy landed and looked to establish a base. My attack is to remove its defences before it can be established. It can do further damage it will not wipe it out but will bloody its nose.

6 Agincourt 1415

This is a case of ability over arrogance. I hit the enemy at its furthest extent. Damage maybe negilble, but I believe in finishing it and what I believe in.

5 Battle of Britain 1944

This again is stubbornness against arrogance. This enemy believes victory was assured be because of its superiority. They understated the foes I.e. britain and me. The enemy adopted new tactics (it always will) but will be up against tenacity

4 Tobruk 1941

The enemy took forward with a concentrated effort, however at Tobruk the tide turned. It was shown it could be stopped by a smaller determined force. Like the desert rats I will not surrender to this nor retreat. I keep will probing against this enemy who does not respect me.

3 Trafalgar 1805

Take the fight to the enemy, attack it in close quarters where it is not expecting you. Do not let up. It relies on its past victories (this does not mean it will not evolve not strategies. Evolve first keep it off guard.

2 Waterloo 1815

This is where I marshall my support troops always utilising them to keep me going forward. In this battle all appears to be lost, the enemy believed it had one the day, but deployment of secondary assistance (family and support network) helps probe, if necessary retreat temporarily, reassess, re-engage, keep pushing.

1 Thermopylae 480bc

History buffs will show this was a losing battle, unfortunately for me this may be my last stand, hence my number 1. As I said earlier, my cancer is treatable but not curable. I am aiming to take as much of the enemy with me as I bloody can. It it wants me it will have to work hard to get me. I know this battle was against unlimited odds and ended with the defeat of the Spartans and their leader but like me they did not surrender.

I know someone will say there are better more winnable battles than my choice. This is their prerogative, I chose mine because they have given me a belief I can win.

You choose your battles and you fight them, but remember a pyrrhic victory is a standoff it does not deliver a knock out blow, it gives the enemy time to reg organise and attack.

If I should reach number 1 I wish for Odin to open the halls of Valhalla and embrace me for being a warrior to the end.

To my family and friends who will support me throughout this I thank you. If I ring you crying, please don’t get maudlin with me. Use tough love you can weep privately as I will after our call. Pity and sympathy have no time for me, save that for others please.

I respect cancer but cannot fear it. The word is not bad it is the invasive actions associated with it.

I will have good and bad days, never fine days, (fine is a achrosim of Fear, Irrational, Neurotic and Emotional) emotions that drive fear. I do not acknowledge that word.

Should I inspire one person to step into battle alongside me against this then I will be proud to stand shoulder to shoulder with you and should I fall others will take my place and should it become your time to fall I will welcome you to Valhalla.