Bernie's Story

Updated: Feb 4, 2019

For World Cancer Day 2019, the new three year theme is “ I am and I will” which calls for personal commitment to reduce the global burden of cancer. My interpretation of the theme is to do with the mentality of fighting the disease - “I am beating this and I will beat this”. When I think of this, one person I know stands out. A friend who I used to work with was delivered the devastating news no-one wants to hear. When he broke that news to those who he worked with, there was an air of optimism in the words that he spoke. He was not about to lie down and accept the fate he was given. That moment always stands out in my head and it forever will.

So here is the story of my friend, Bernard Cummings….

What Type of Cancer was it?

Stage four - Secondary Metastatic Melanoma Cancer - Present in the lungs & brain

What was your lifestyle before finding out?

“I was physically capable for my age. Very active walking or running. Completing marathons. I could easily clock 140 km walking during a working week. A small work building in comparison to the distance covered. Eating wise, it was never an issue. I ate things in moderation but still liked to enjoy myself. Even though I did, it was never on my mind as I was always so active”.

How did you find out?

“I had a cough which I felt deep within my lungs. A cough that felt like it shook my bones! This was an issue. I also remember feeling very tired. More tired than I would even after running. At one point, I was closing the store down one evening, came down the stairs and suddenly felt out of breath. I needed to sit down. I felt so tired! I kept thinking - How am I going to drive home?! I visited a doctor for this and he gave me some medication and said that should sort it. But to no prevail. I visited the doctor another two times after this as something just didn’t feel right. After being told the same thing I decided to get a second opinion. This time the doctor sent me off for an X-ray of my chest to see what the problem was. The doctor called to say the results had come back and to come in. I was not expecting to hear what he was about to tell me. My wife and I went in and sat down. I will always remember his words as clear as day. He looked at his screen. Turned to me and said ‘Well Bernie. It’s terminal’. There was so many tumors in my lungs they just couldn’t operate”.

What was your first thoughts or feelings when he told you?

“It didn’t sink in. It wasn’t something I expected to hear after being told it was just a cough for so long. My first thoughts were - How the hell is Janet going to take this?!, How am I going to tell my family?!. I didn’t think about myself or the hows or whys straight away. I think maybe it was just the shock”.

Was there a turning point where you stopped and said “I am going to beat this!”?

The drug programme I am on was only released a few months prior to me starting it but when the doctor told me there was 70% survival chance being on the drug, I knew there and then.

I want to be in that percentage! There was to be no ‘ifs’ or ‘buts’. I was going to be part of that percent. That is what I kept telling myself. I didn’t even think about the other 30 percent that don’t make it, because I was going to make it. I think it was my survival mechanism kicking in with steely determination”.

What have you had to go through to be where you are today?

“Lots and lots of processes. Came down to a bit of who I know to help. I got a number for a nurse who might be able to help getting me on a drug programme. I called frequently hoping to get on this programme. It took 10 weeks for some action to finally happen which was very frustrating considering my position. After that was a further 6 weeks of questions. Making sure I was the right person who was mentally & physically right to be on this drug. Another few weeks went by before I was able to start. I was called by my doctor asking me to come back in but have someone drive me so my wife, Janet came with me. This is when things took a turn. They had re-visited my scans and found cancerous tumors in my brain. They was really driving the nail now. Due to what they had found, my drivers license was put on hold. My freedom was taken away.

After six weeks of being on the trial, my body rejected the drug which almost killed me. Twice. They found high levels of antigens in my blood. But after two ‘failed’ attempts, my body seemed to accept the drug and it hit the ground running! The progress from the drug was spectacular. Like any drug though, there is side effects. This had an A4 sheet of side effects! There was 3 groups. The 1 in 10 - 1 in 50 and 1 in 100. I looked over the sheet and began ticking off the side effects I had encountered so far. It would have been more like ticking off what I hadn’t. One that I ended up with was Pneumonitis. 1 in 100 side effect. My lungs were basically turning to Styrofoam. So with this, I had to stop the treatment to take steroids to counteract the Pneumonitis. The doctors told me coming off the programme could jeopardize my recovery from cancer and I could be taken off the drug. Luckily for me, my body responded so well to the treatment before the side effect they kept me on course.

Through all the meetings and hospital trips, my 3 monthly examination was the worse mentally. These created anxiety within me. You go there and never know what to expect. Is it going to be good progress? Are we going backwards? This started to engulf me with everyday life. I would go to work and sit in my car. I didn’t want to face things. I put jobs to the side. I would walk away from doing things as I just didn’t know how well it would go. Even with this, I always had a forward focus. I didn’t plan for 3 months. I planned yearly. I set long term goals past each 3 months so if I made them, it was great! I didn’t want a 60th Birthday as it was not too special. It was too close. 61st was a bigger birthday. If I made it to that birthday then I had lived for a year longer, given they gave me 3 months to live basically. It has been a long road but I was never going to give up what I have in life.

I taught myself to wake up in the morning and have a 3 way conversation with my mind, my body and my personal god. We would just chat how we are feeling and what we were going to do for the day. Not what we would like to do or what we could do but what we were GOING to do. This might happen two or three times a day. At night time when I got into bed I would decompress myself. I would thank my mind, my body and personal god for the great work during the day. I would go as far as thanking my legs for walking. My heart for pumping. My head for determination. As soon as I had relaxed doing these things, I would fall asleep very easily.

I was recommended to seek counselling to get my thoughts straight and help understand what was happening and learn how to decompress. To help develop a way forward with life and help give up the sleeping pills. Depression might not come as a surprise when you are diagnosed with cancer but might be a surprise that it is a big issue after cancer. It is a big change in your life. So much to comprehend in a quick amount of time. You are mentally being strong trying to keep the negative thoughts away. It helped my mental state. I remember there was only ever one negative thought that crept in. I was cleaning the house with the curtains pulled, the ranch slider doors open and it was a beautiful sunny day. Could hear the birds clearly singing and I had my favourite music playing in the background. Then in a brief moment I stopped and everything looked perfect. I thought to myself ‘This could be the last time I see things like this’ but this was quickly pushed out. I was always going to see this. The counselling has helped even more now, though I am in ‘remission’ without it being said. I have just lived my life at a million miles per hour and suddenly it all kind of stops. Your coming out the other side and life is returning back to normality. It is hard to get back to what you were doing as you have been so tired or ill to do simple things whilst fighting the disease. All those drugs and the adrenaline of a long fight comes to a slow down. I was living longer so nothing was a rush. When you're being told you need to live your life by every 3 months and being told to get your affairs in order, it is pretty strong stuff. But here I am. Doctors have said my results are amazing. I was recovering 18 months ahead of their timeline!

The support I received from everyone - Family and work colleagues was phenomenal! I cannot thank everyone enough. It was all mentally warming. Having that support was a huge help. There was a young girl getting an infusion at the same time as I was once, who didn’t seem to have anyone with her when she came in. I couldn’t imagine going through this alone. My bosses and business owners gave me immense support and comfort. They never questioned what I was doing or what I needed to do. I was left to get on with it. Though somethings I needed help with I wanted to try and carry on with work life. No-one tried to stop me as only I knew what I was capable of. I just cannot thank the support enough. It really did help. My wife had to ferry me around. To and fro for work and it was not just a few minutes down the road. It was a good hour round trip. ”.

Has your lifestyle changed since?

“No. I am still as active as I was. I eat the same. Well mostly. I am a little careful what I eat. I am getting older and with not being as active the past few months I had put a little weight on but I am working towards losing that and becoming fit again. I want to do the Kepler mountain run December this year so there is my goal to work towards. Cancer was not going to change me. It doesn’t define me as a person. I think I have changed a little as a person. Emotionally. I have learnt to appreciate people around me more as they were there for me. Maybe I have become a little softer? I don’t feel as hard arsed about certain things in life anymore”.

Do you have any advice or a message for others out there?

“I would look at the good things that are going on in your life. Things that you can still do. The people around you. Don’t dwell on what you can’t do. If you can’t do certain things then don’t. Appreciate the small stuff.

Focus on what will get you better and makes you feel good. Getting better is your end goal. If you are fully focused you don’t need to think on if you don’t get better. You are going to get better. Something that I repeated to myself was ‘Cancer does not own you!’. Cancer lives within you but does not control you. YOU have the power and ability to control it and overpower it.

Add to that. If you have a gut feeling something isn’t right even after you have seen a doctor then keep trying. I think the medical profession do an amazing job but gut feelings can also be right. Listen to it. Not everything is ‘it will be alright’”.

Lung cancer is one of the hardest of the cancers to detect and sadly, it is too late once detected in a lot of people. The cases to death ratio in lung cancer are incredibly high and very saddening. Bernie did not give up and is still fighting even after being given a stage 4 diagnosis. Cancer can strike at any time. It has no limits. No preference with who. No age is left out. It could be a 1 year old who has barely seen past their own house or a 90 year old who has lived life by the book. It just does not matter. Most of us have had someone close to us or know someone who has had a battle with some form of cancer. They may have lived and carried on the happy life. Some don't and succumb to cancers devastating effect.

I know doctors and medicine and procedures cost money but it is shocking in the difference between public and private. Why is there such a cost on someones life? Aren't we all just as important as each other? Don't we all deserve the same treatment at the same time? There is so much talk about people being treated equally yet, if you are rich, you can pay to go private and be seen in half the time as someone who doesn't have a lot of money. That could be the difference is someone's life. I can see Bernie's frustration in a 10 week + wait. When life is in the balance, 10 weeks + could of cost him his life!

Here is a link from WHO (World Health Organization) regarding cancer rates within 2018 world wide.

For cancer rates in New Zealand, here is a great visual to show the rates. Some are pretty shocking between cases to mortality rates. Have a look for yourself.

If you would like to know more about World Cancer Day 2019 and about the new 3 year theme "I am and I will", head over to where you can do your part to in making a commitment to help ease the global burden. Could be something so small but can make a huge difference.

"It takes but one person, one moment, one conviction, to start a ripple of change" - Donna Brazile

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