Advocate of the Month – October 2012: Susan’s Story logo

The Mesothelioma Cancer Alliance would like to introduce you to a wonderful woman and our advocate of the month for October – Susan Ralston. Susan kindly shared with us the story of how her life has been affected by mesothelioma. Read more about her family and inspirational stepfather, and watch for her throughout the month as she plans to be a big contributor to our social community!

Cancer. My memories of cancer. I had a lovely stepsister named Lyndsay, who was the same age as me. She was diagnosed with a rare type of cancer in her late teens – Cushing’s syndrome. I did not know anything about this disease, and was probably a bit naive about it all. All I could see was my stepsister gaining weight without an explanation and after several misdiagnoses, finally a right one. I have never known such a young person to show so much determination and fight in her. You could see the fear in my stepdad Ronnie’s eyes, but she battled. Unfortunately, 10 days after her 19th birthday we got the dreaded call. Lyndsay had passed away. That was the day part of Ronnie died too. But you know, I think that he has somehow found that part again and is using it to fight his mesothelioma.

The worst and most painful memory of cancer has been my stepdad’s diagnosis with mesothelioma. In the summer of 2011 he developed a persistent cough that just wasn’t getting any better. After a few visits to his doctor, he was sent for a scan. It showed fluid in the lung, so he was given medication. It didn’t help. After several hospital appointments and a few admissions, he was told he had cancer the week before Christmas.

Everyone was a wreck. Ronnie was Ronnie– calm and strong. All I’ve ever known him to be. Over the Christmas season, we tried so hard to put it at the back of our minds. With the focus on my two children, we managed a bit of normalcy, but it was always there. New Year’s was specifically hard, trying to toast a new year of health and happiness when we had this going on. It was tough, especially for my mum, as she is fighting a battle of her own with a fatal kidney disease. She has been putting her own health on the back burner for a while throughout all this.

The biopsy was finally done in the New Year. We finally had a diagnosis. Sitting in the doctor’s room; my mum, Ronnie and myself. We were shaking and trembling. Then the doctor said, “mesothelioma”, “9 months from diagnosis”, “very serious”.

I couldn’t believe this. It was February. The doctor had just given my stepdad 7 months to live, as he was technically diagnosed in December.

That day was awful with everything floating around in my head. Frantically, I started researching on the internet this “meso-whatever-thing” that I couldn’t even pronounce. How on earth do I tell my kids that their papa is seriously ill? My 7-year-old son, Liam, and his papa are the best of friends. My 18-month-old daughter, Olivia, dotes on her papa. Ronnie worships his grandchildren. They are his strength in every way. They keep him going.

I was supposed to be getting married in April 2013. How on earth could I wait until next year? Ronnie might not be here. That’s all I could see. He needs to be at my wedding. He was like a second dad to me. The only option was to bring the wedding forward. So it was decided, and the wedding was rearranged within 12 weeks, eleven months ahead of plan. A determined Ronnie kept wondering what all the fuss is about. “But I’ll still be here next April” he reassured us, and we hope to God he is and we will have another party then to celebrate!

The wedding came and it was a great, but very emotional day. Our family had been through so much this year that we were ready for a party. And a party we had. My husband Scott has been my rock. Dealing with my moods, my bad tempers, and he has stood by my side throughout all of this.

Ronnie endured chemotherapy every few weeks and was wasting away in front of me. This once strong, sturdy man was becoming very weak and thin. It was all starting to get to him, and his emotions started to show. This was hard to see, especially for my mum. How on earth could she cope with this, I will never know. She has been a star for my kids, my step dad, and me.

The next consultant appointment came and extrapleural pneumonectomy (EPP) was thrown around the room. We were lucky enough to have the only doctor in Scotland that performs this procedure, as it is still only a trial here. “Lucky” is actually not a word I feel I would use in making the decision that could kill Ronnie on the table or make his remaining life a painful one. The doctor decided that Ronnie wouldn’t be able to cope with the lifestyle that would follow an EPP and operation and was set for pleurectomy instead. They wanted to perform the operation a week before the wedding. Ronnie was adamant. “No operation at that time.” So it was scheduled for the 27th of June.

The time for the operation came and Ronnie was a wreck, as were my mum and I. She was shaking; her nerves making her sick. Ronnie said goodbye to my kids. He did not take that too well. They give him strength and courage; a courage I have seen continuously grow in Ronnie. He has been determined from the very start of this journey to fight mesothelioma with every tooth and nail of his body. It is a courage and strength I admire with all my heart. After a long day of wondering what was happening and how the operation went, he finally came up to the intensive care unit. He looked awful, but he was doing ok.

After recovering in the hospital and eventually going home, he endured an awful lot of pain, but was on the mend. A scan was performed and the doctors were happy with the results. The scan looked good and the 7-month life expectancy was taken off the table. I could not believe it, such wonderful news! But there is mesothelioma still lingering in his chest and it’s also surrounding his heart.

Ronnie has a rest from chemo for right now to help his body recover from the operation. He is due back in December to see what happens next, although that may be brought forward a bit as his symptoms and pain are returning. My main worry is how they will treat around the heart.

I have never seen such fighting spirit. Ronnie is determined to be here in this world for as long as he possibly can, and together we will make sure he is.

The fight continues.