There’s a pot of gold at the end of the rainbow

Dec 11, 2016 | Brain Tumour | 1 comment

There's a pot of gold at the end of the rainbow

by Katrina Lim 11th December 2016

This week, no fewer than 8 people have said to me, “it’s been a really tough year”, and then gone onto say, “and I know it’s been an especially difficult one for you”.

Yes, this year has presented challenges that I never imagined I’d face. But as I stop and reflect on what has happened, the overwhelming feeling is one of gratitude.

I am grateful for our brilliant GP and Neurosurgeon

Their responsiveness and expertise filled us with hope and confidence from day one. I will be forever thankful that we never had to endure any additional stress or uncertainty about the course of action to be taken, or feel the need to seek a second opinion.

When Steve was diagnosed with his brain tumour, a friend said to me, “at least it’s operable”. Those words stopped me in my tracks, and I’ve come back to them time and time again.

As Steve left the radiology department that fateful Wednesday evening in late June, our wonderful GP Stephen List called him to say that he had organised an appointment with a Neurosurgeon. The appointment was scheduled for first thing Monday morning, after an MRI on the Saturday. The time that Dr List took to respond to the call from the Mater Hospital, call the Neurosurgeon Jonathon Curtis, and then call Steve, would have delayed his schedule in his surgery. I have a newfound appreciation as to why he rarely runs on time. Responding to urgent cases like this maybe part of the reason why.

Trusty Doctor Google told me that the type of tumour that Steve had were typically slow growing and benign. So I went into the appointment with the Neurosurgeon expecting him to say that because it was a slow growing and non- invasive tumour, they would just monitor it for any changes, and act accordingly. I was so confident that this is what we would hear, that I didn’t think to change my scheduled client appointments for that afternoon (I did cancel them after we left the surgeon’s office).

When we were told how serious the situation was, neither of us panicked. While we were utterly shocked by what we were told, the news was delivered in such a sensitive and compassionate way, that he gained our immediate trust. A pause can be an incredibly powerful communication tool – I remember Dr Curtis pausing and then looking at us both in the eye to gauge our reaction, before going on to explain the situation in further detail, and the course of action that he recommended. The appointment following the pre-surgery planning was handled with just as much care and consideration.

Throughout Steve’s 3-week stay in hospital, Dr Curtis was there every day when Steve was in ICU, and every second day when he was moved onto the ward. He responded immediately and reassuringly when I sent him a concerned text message about Steve’s nutritional intake (he had pulled out 3 NG/feed tubes in 4 days), and had received only IV fluids for 48+ hours. It was important to me that he had adequate nutrition so that he had the energy to demonstrate that he was capable of swallowing food safely. Dr Curtis also promptly responded to other direct messages that I sent – one requesting his clearance for Steve to receive acupuncture, and on 2 other occasions when we observed the first signs of voluntary movement and when he walked on his own for the first time.

I am grateful that we were never put in a situation where there was no solution

Since Steve’s 15-hour surgery that removed 90% of the tumour (or The Blasted Invader – as I’ve named it), I have been across two cases where people have been told that their tumours were inoperable. There was one situation where the tumour was in the same location as Steve’s (the brainstem). Thankfully, it has now been surgically removed, and like Steve, they are in recovery mode – a slow and steady process.

I was curious to know what was considered to be an ‘inoperable brain tumour’, so I consulted again with Doctor Google to check the definition. The answer shocked me because Steve had most of the characteristics of a tumour deemed inoperable, including its size. I’ve done rough calculations, and estimate that Steve’s tumour may have been there for 17 years!!! I try and stay away from what may have happened if it had been detected earlier, and go back to what I said when we started this journey, “There is no point creating scenarios that don’t exist”.

We don’t take for granted how blessed we were to have Dr Curtis as Steve’s specialist. We do know how lucky we are. He made the impossible possible. And for Dr List, who continues to oversee Steve’s recovery.

I am grateful for the support of friends and family

Over the past 4 years Steve and I found ourselves becoming socially isolated. We both had our reasons to mix in a small group of friends.

During the past 5 months, we have both been overwhelmingly embraced by not only our family and intimate friends, but also by a wider circle of friends, some who have been absent in our lives for years. We have been lucky to encounter the true sense of community, as our neighbours all rallied around us. We have experienced the wonderful ripple effect that friendships can create. We have been far from isolated or alone. We have made new friends and renewed old ones.

When Steve was diagnosed, I made a choice to stop work so that I could be with Steve as he prepared for surgery. I am so grateful to my work families who gave me the precious gift of time – 6 weeks in total, as well as the continued flexibility to fit into Steve’s schedule. My loyal clients (many who have become friends) have been incredibly supportive, patient and understanding.

Throughout this journey we have felt such an abundance of love and support.

I am grateful for Steve’s unconditional love

What has been brought to the surface throughout this journey is our fierce devotion and loyalty to one another.

In stark contrast, three years ago, we were barely going through the motions of marriage. When Steve suggested that we get counselling, I resisted. And I decided to leave our marriage, wanting to start afresh. It took a couple of months to convince me that counselling may help navigate us through the quagmire that we found ourselves in.

When I agreed, I found it to be difficult and incredibly exhausting. I felt wounded all over again talking about the reasons why we didn’t have children (I had a Sliding Doors moment at the end of a particularly confronting day when Steve was in hospital. I was relieved l that we didn’t have kids so I could devote my time and energy to him). In contrast, Steve saw hope in the process, and said that we should have done it five years earlier. We persevered, and have slowly rebuilt our relationship.

Over the past couple of months, we have been able to openly talk about that difficult time, and there has been a period of forgiveness and understanding. I am thankful that Steve fought to save our marriage. It was worth it.

I am grateful that my husband is here.

We don’t know what’s around the corner. Steve is still very much in recovery mode. And there is further treatment required – in February Steve starts a course of Fractionated Stereotactic Radiotherapy.

But he is here – living life to the fullest, working hard to recover, and making the most of each and every day. And for that, I am truly grateful.