Caitlin Frede

Caitlin Frede was in her first year at medical school when her father, Peter, was diagnosed with squamous cell carcinoma. He was 48 at the time and it was the middle of 2014. It started with some throat pain and a small lump at the back of his tongue. His GP sent him to the dentist as the lump was difficult to see without a dental mirror.

The close-knit Frede family is from the Sutherland Shire. As well as drawing strength and support from each other, they rely on their Christian faith. Caitlin says: “That was a big shock and we were all really scared. You hear the word cancer, which you never expected to happen to your family.”

The cancer was Stage I and localised, so Peter underwent surgery at St George Hospital in Sydney by head and neck cancer specialist Professor Jonathan Clark. Peter recovered quite quickly despite having part of his tongue cut out. He could still speak and eat, although his speech was a little distorted.

At the time, Peter was given the option of having radiation therapy and the family deliberated long and hard in deciding not to go ahead with it. The side effects would have been quite severe, like dry mouth, difficulties in speaking, swallowing and eating and having to carry a drip bowl around with him. The chance of recurrence was estimated at 15 per cent and the Frede family felt that radiation therapy offered little additional benefit given the severity of the side effects.

Life went on until around December that same year when Peter began to have trouble swallowing. At first it was thought that he had an upper respiratory tract infection, which he’d been susceptible to after his surgery.

The family had planned a trip to Hawaii in January 2015 to celebrate both parents’ 50th birthdays. They decided to go despite the appearance of these new symptoms. It was a wonderful family holiday, they went snorkelling and zip-lining. But Peter was in pain the whole time and couldn’t really eat. The infection wasn’t getting any better.

On the family’s return, Peter went back to see Prof Clark and that’s when they found out that the cancer had recurred and had spread locally. Caitlin says: “We were devastated, particularly with the decision we’d made in July not to go ahead with radiation therapy weighing on our minds.”

Peter was booked in for radical surgery in April. In the lead up to the surgery, Peter went in and out of intensive care as the tumour had haemorrhaged.

Peter’s entire tongue and larynx were removed during the 12-hour operation and a tracheostomy was performed. This is where a hole is made surgically in the windpipe and a trach tube is placed through the hole so the patient can breathe. A PEG tube was put into Peter’s stomach so that he could be fed as he could no longer eat without a tongue. A skin flap from his thigh was used to cover the wound left by the removal of the tongue. Without a larynx Peter could no longer speak.

Caitlin recalls: “It was really hard seeing dad like that. He was very weak and very puffy after surgery. He wasn’t conscious for the first few days. It was a very tough Easter, especially as we were staying in Camperdown to be close to Dad in ICU and were away from our church family.”

Eventually Peter was stepped down to the normal ward from ICU and discharged. “This is when my mother and I began our amateur nursing careers. There was a lot to learn.”

Despite being a second-year medical student by this point, the most part of Caitlin’s experience was out of a textbook. She hadn’t spent much timing doing clinical work. She and her mother had to learn how to fill the pump for feeding Peter via the PEG tube. Sometimes the tube would leak or get clogged. They had to learn how to keep the trach tube clean, as well as the home nebuliser, which could fill up with mucus.

They had to educate themselves on how to administer the raft of medications that Peter was on. He couldn’t take them orally because of the laryngectomy so they had to crush the tablets, mix up the liquid medications and put them into the PEG tube. They had to change fentanyl patches and be responsible for his opioid doses.

As well as the physical care, Peter couldn’t speak any more so he used a small whiteboard to communicate with the family.

Peter required around the clock care. Caitlin’s mother quit her job and became his full time carer.

“Because Dad wasn’t eating, we didn’t really feel like eating in front of him. Especially my Mum. She lost about 20kg that year. It wasn’t good, she didn’t eat. Our church family organised a meal roster and my grandparents would drop the meal off every day. They also did our washing, which was a huge help.”

Caitlin was still going to medical school five days a week, while her brother was studying music full-time at the Australian Institute of Music. “We would have really struggled without my grandparents,” she says.

In October of 2015, Peter started to go downhill. The family discovered that the cancer had spread all over his body. It was in his lungs, thyroid, adrenal gland and all around his head and neck. His eye was swollen and he couldn’t see out of it. Caitlin remembers being shocked on hearing this brutal news. During that consultation, it was decided that Peter would go into hospital for what was meant to be a day procedure to drain fluid from his lungs. This was in early November. Peter wasn’t to come home again after that.

His cancer progressed quickly and soon he could barely walk. Caitlin remembers one day when he decided he wanted to go to the end of the ward and look out the window at the view: “He’d never done that before, we hadn’t even been out of the room. We had to get some portable oxygen. But they made it happen for us.”

That was Peter’s last good day. The next day he slipped into a coma. Caitlin’s mother slept every night on the couch by Peter’s bed. A mattress was brought in and Caitlin and her aunt took turns staying on the mattress.

On the night that Peter passed away, Caitlin and her mum were asleep in the room. The nurse woke them at about 3am to tell them the news and they called Caitlin’s brother who came quickly.

Peter passed away on 1 December 2015 and the family has been dealing with the grief ever since. The first thing they did was get out of Sydney and head down the coast for a week. With Christmas and the fact that Peter was born on 15 December, it was a hard month for them.

Caitlin went in to her third year at medical school. This is where the hospital element of the training starts, which she found extremely challenging. She had so many raw memories to deal with. “The first time I witnessed a patient pass away I had a nervous breakdown. I had quite a few that year.”

Studying oncology was particularly hard and this is when Caitlin recognised that she should get some counselling. She saw a lot of families going through similar experiences to hers. “This brought up a lot of grief I hadn’t dealt with yet. You don’t feel like you can do anything to help them. Especially when I saw head and neck patients. That was the worst, obviously.

We had a week of palliative care which was awful. A lot of my patients died over that week. I also had a car accident. It wasn’t a good week.”

Caitlin thinks she’d suppressed a lot of grief. Events on the wards would give her flashbacks, like when they broke bad news to patients. “I was in denial that I needed help before then. It would have been good to deal with things earlier. You say that you don’t have time but in the end, it’s really not that much out of your week, no matter how busy you are.”

Caitlin says she dug her heels in at first. “I told my Mum and my boyfriend, if you can find someone that works out of hours, lives locally, is a lady, is a Christian and is not too expensive, I’ll go to counselling.”

Sure enough, they found someone who fit the bill. “It came back and bit me but it’s great. I struggled to understand why God would do that to us. It was good to talk to her.”

Now the Fredes try to do nice things together to remember Peter. Easter brings back bad memories so they go down to the south coast and spend time with each other. Peter’s ashes were spread there.

“My brother doesn’t really speak about grief at all but I can tell that he misses Dad a lot. Mum and I talk about Dad often. Everyone has their own way of dealing with it.”

In March 2016 Caitlin did a fundraiser with the Cancer Council called March Charge.

“I think that was my way of dealing with my grief. The last text I ever received from Dad, I had told him that I had got up to running 4km. His text said I’m very proud of you darling. So, this event was really special to me. We raised $7,000 and I’m really proud of that.”

Thanks you Caitlin for sharing your story.