Brain Tumour ~ the Journey Begins

by Oct 16, 2016Brain Tumour, Journey12 comments

The Journey Begins

There is no guide book for surviving a brain tumour. I have no idea how long it might take me to get back to a normal life, if there is one. My speech is still sub optimal, I sound as though I’ve had too much to drink, and feel like I have a perpetual hangover. Constructing a sentence is a stuttering, serpentine melange. I risk falling over and banging my head unless I walk slowly and deliberately. Learning to walk again is just one of the skills that I’m having to hone, among others, such as going to the toilet, showering, eating, making a cup of tea, getting dressed.

What started out as vertigo, dizziness, loss of balance, slurring of speech and chronic insomnia, ended up being 15 hour brain surgery to remove the tumour. I owe my wife everything for being with me on this journey, she has taken everything square on, all the changes that needed to be made, she needs to be recognised, honoured, for being unflinching, resolute in taking care of me.

It was on that day in late June, when our surgeon gave us the news, that Katrina said “our life has changed”. From that point, preparing for surgery, to now, our lives have taken on a new meaning, everything is viewed through the prism of survival for a kind of life that is completely unknowable. Nothing seems real, in fact most things seem surreal, in the truest sense of the word, where almost everything else seems irrelevant or unimportant, when of course, it’s not.

So, here follows a chronology of my journey.

16 June

I called my G.P., he had told me to let him know if I was still experiencing vertigo. I told him that I still had it, that I was still feeling dizzy and that I was at my wits end. He suggested a CT scan – “It probably won’t show up anything” were his exact words. Having said that, his perpetually enquiring medical mind led him to the point where he recognised the steps needed to be taken. He was watching and taking care of every step of this journey.

22 June

I sat in the foyer of that very fine hospital, the Mater, awaiting the film of a CT scan that I had just had, to take back to show my G.P. when a radiologist, a very nice lady, came out to see me. She asked me – “Are you Stephen Newman.” I replied in the affirmative. She then motioned for me to go with her to a private room. I knew, straight away I knew, that something indeed was wrong. She told me that the CT scan that they had just done had shown up a Petroclival Meningioma. I recall being impressed that she had been able to diagnose so accurately the type of tumour, something I would only later learn to appreciate. Within half an hour of that scan, my G.P had arranged an appointment with a neurosurgeon. The radiologist had called him to suggest that action should probably be taken and soon. An MRI a few days later confirmed the presence of the tumour, which provided a certain clarity.

27 June

We met our surgeon, Dr Jonathan Curtis, who confirmed the need for surgery. He booked surgery for the 21st July and then, after taking some particulars about my history and my family medical history, proceeded to tell me about the risks associated with the procedure, that there was a reasonable chance that I’d have a stroke, the risks involved with the surgery itself, that the tumour was in a “bad spot,” abutting the brain stem, that there were arteries that the tumour had “invaded”, attached itself to, that had to be liberated if I was to have any chance of recovery.

11 July

An angiogram, under general anaesthetic, to map my brain, in preparation for surgery. They were leaving nothing to chance.

18 July

My final meeting with our surgeon prior to the operation. He took me through the procedure, discussed the result of the angiogram, the profile of the tumour, he told me that things looked positive, that he should be able to get most of the tumour, that whilst surgery was still risky, that he was confident.

My wife made the observation: “We had the briefing with the surgeon today (updating us on last week’s procedures). Quite an overwhelming appointment – we knew already about the pressure that the tumour was placing on the brain stem, but last week’s procedures have found that it is affecting 3 major arteries, and confirming the cranial nerves affected. On a positive note, Dr Curtis again commented how ‘amazing’ Steve was cognitively, considering … He also said that if it was left another month or so, that he wouldn’t be able to walk at all.

Yes! It is hard to believe. I still can’t quite get my head around the fact that he is REALLY sick. It’s been hard to watch – he uses so much energy on our morning walks – but he wants to keep doing them, and pushing himself. His symptoms are steady, but can be unsettling. But he still LOOKS okay!”

20 July

I admitted myself into hospital, to prepare for the surgery the following day. They wanted to do another MRI prior to the operation, to provide an up to date scan and to map my head for surgery. I felt at peace the night before, Dr Curtis paid me a visit in the evening, to come and say hello and tell me that he prays and asks for wisdom before each operation he does. He told me he acknowledges the fragility of life, a comment that strangely didn’t effect me as it may have in the past. I had my own God moment, one of going on a journey and that things would be okay, even though it held no guarantees. I accepted the remark. I also somehow realised that Dr Curtis, with that one remark, was not only a skilled surgeon but a human being of great humility.

21 July

The day of surgery. I woke up at 5 a.m, Katrina came in at about 5.30 to see me. I had a shower and sat on the bed, readying myself. The nurse came to make sure I was prepared, I was sitting in my hospital gown, all clean and ready. Wheeled into the room where the anaesthetist was waiting for me, we chatted about bike riding. He told me where he goes to cycle and asked me what bike I had. I don’t remember anything after that moment. I never saw Dr Curtis. Twenty four hours later I would wake up in ICU, from heavy sedation following fifteen hour surgery, having had the tumour taken out of my head.

22 July

I awoke from surgery feeling nothing on the left side of my body, my left arm and leg were lifeless, a reflection of the trauma that my brain had endured. But I was alive, and for that I was grateful. I had passed the first milestone – that of opening my eyes following the operation. I was brought out of sedation the morning following surgery, I hadn’t had a stroke, a risk going into the surgery, so at least I had emerged relatively unscathed.

Katrina was there, waiting for me, telling me about the Tour De France.The good news was that the 3 major arteries and cranial nerves that the tumour was traversing were intact. For the next few days my existence consisted of ICU examinations and conclusions about where I was at medically. I had a few visitors during the initial few days, some of them I don’t remember. I was completely at the mercy of hospital staff, my brain felt as though it had had concrete poured into it. I was a mess of tubes and scar tissue and at that point any thoughts of a full recovery dwelt in fantasy. Everything seemed too far off. In contrast, Katrina was optimistic that I’d be on the road to recovery within days.

27 July

According to Katrina’s account: “He’s been having regular CT scans, and yesterday’s showed a shadow. Now that the swelling has gone down, there appears to be trauma to the peduncle (part of the stem), he may also have had a minor stroke since.” Katrina met with the surgeon, neuro registrar, head of ICU and another ICU doctor. They didn’t provide a definite on this –  daily monitoring was the official response.

Once I moved from ICU into the ward I started on therapy to try and get me moving again, to get my leg to move. I couldn’t talk either, there was no output, it was too much like hard work to utter a word.

In time, three weeks of recovery at North Shore, learning to eat, thinking about walking and talking, turned into a further five weeks at Graythwaite Rehabilitation Hospital, where the goal of leaving hospital would awaken my body and mind. It took daily physio, speech therapy, occupational therapy and resolve to get to a point of being able to come home. Standing on my own was a milestone, walking along a corridor a major event, dressing myself something to be celebrated.

Slipping over and cracking my head added to the concern. It was thought I’d done damage that didn’t bear thinking about. I was ok but the fallout made everybody a little on-edge. People fall over in hospitals, it’s what happens, particularly, when one needs help with going to the toilet and one has to wait an embarrassingly long time for someone to arrive and render assistance.

Since leaving hospital I have been able to walk but I’ve been unsteady on my feet, I can carry on a conversation but I sound laboured, I cannot use my left hand, my bowel movements require a swiftness and precision that shouldn’t require that much thought. My head is full of scaffolding, as much a realisation that I’m fortunate to be alive as a determination to get better.

I still can’t function as a normal human being, every aspect of my life is in recovery mode but I am grateful that I’ve been given the freedom to do just that, recover. Most of all, I’m grateful to my wife, without whom I’d be a train without a station.

There are so many people with so many stories like mine. There are so many people who have died from brain tumours, yet I’m still alive. I do not take being alive for granted. Though I do wonder when I’m going to stop feeling like this. The journey is by no means over, in fact, it’s just begun, it has no end date. I will forever live with this “ thing” on my brain. This tumour that has tried to claim me.

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Richard Andrew
17 October 2016 8:57 PM

Steve, was just like you were speaking to me. What a journey. So great to hear this in your own words. Thinking about you every day. One step at a time man, one step at a time.

Chris Kemp
17 October 2016 9:52 PM

What a journey! Thank you for sharing Steve. Your determination to find a new normal is inspiring as is Kat’s commitment to being by your side.

Michele matthews
18 October 2016 10:22 PM

You are so courageous. An Unthinkable few months- well done for getting to where you are today. Thank you very much for sharing your journey. Kat and you make a strong team!!

Andrew Tate
19 October 2016 10:56 PM

Steve, that’s a beautiful simple piece of writing! Everything so eloquently put! What is clear is that you & Kat are a ‘team’, you wouldn’t be where you are now without her (love the metaphor- “….still waiting at the station for a train.”) It is a long journey and one where the destination is unknown, but it is so great to have you around! A minute in your company is worth an hour with anyone else!!! Onward and upward my friend there are many rewards still in front of you and I know “Team Newman” will bring them to fruition!

20 October 2016 9:29 PM

Oh goodness! Such triumph, such a story – the story of ‘a part’ of your lives. Thank you both for sharing your incredible love and endurance. You are amazing Steve & Katrina
Bless your hemp socks! xx

21 October 2016 11:31 AM

Amazing story of faith and perseverance, an still praying for a full recovery and abundant life for you KB

Craig Hughes
21 October 2016 5:21 PM

Newmanator, you may sound a bit different for the time being but you can still convey more emotion and imagery in a few words than most people can in a thousand. God Bless.

David Lancaster
22 October 2016 3:39 PM

The same qualities that made you a determined runner and competitive cyclist have been put to good.use throughout this ordeal. I know you as someone unprepared to accept 2nd place on the podium. That you have found a wife with equal resilience is astonishing. I am cheering from the grandstand.

Rachel Baartz
25 October 2016 9:47 PM

Team Newman, I love that!
What’s been on show is awesome teamwork!
Beautifully penned, we’re so fortunate to have such medical skills. The medical advances could be answers to the prayers of yesterday. Yes it’s so good to see your amazing progress, cheers Rachel

1 November 2016 10:12 PM

Tenacious old bugger, arntcha?
That’s a good read, Hat. I’m very pleased you are here to write it.
Looking forward to many more chapters.

Stephen Jackson
2 November 2016 4:13 PM

Hey Newman, not the ideal circumstances to reconnect, but we can blame Bomber for that. I race with another Steve Newman and still expect you to front up when I see the other one in the entry list. Well written, obviously the injury had not affected your intellect. Thanks for sharing so eloquently. Take care, heal well, and come to the country and race me one day soon.

6 November 2016 9:20 AM

Hi mate, you have been given a rare perspective we all envy.
This is the rose amoungst the thorns.
Bless you man, praying for you