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Karen’s Oesophageal Cancer Story

Hi my name is Karen Pratt and I am 47-year-old solo mum of a wonderful 10-year-old – Brooke. I have been a teacher for 17 years. Although I was born in Whanganui I have lived most of my life in the Waikato. In April 2019 my life took a sudden life-changing detour when I was informed that I had a nasty malignant carcinoma at the gastro-oesophageal junction which extended into the cardia and the lesser curve of the proximal stomach.

Back in December of 2018, I had started to notice that food did not go down so easily, and I needed water to help. I visited my doctor about this and again in early January 2019 about a dull pain in my breastbone. My doctor organised a series of tests and medications to try to see if they helped with swallowing. Blood tests showed some areas of concern but they were investigated and nothing came of it.

On the 7th of March, I felt extremely ill and took myself off to Tokoroa hospital emergency after I had problems swallowing solids and fluids for a few days. After more tests I was sent home but the next day I got a friend to take me to Waikato hospital ED because I was no better.
This time I spent 6 days in hospital, then after more tests in early April they suspected I had a dysfunctional oesophagus. After 4 months of feeling unwell, hospital visits and tests I had an endoscopy on the 5th of April which showed I had a partially obstructing malignant tumour of the lower oesophagus, the gastro-oesophageal junction, and the proximal stomach. Nothing can prepare you for news like this. It was very surreal.

On the 10th of April, a CT confirmed a large locally infiltrative gastro-oesophageal junction tumour, suspected involvement of the diaphragm, involved upper abdominal nodes and an indeterminate right hilar node. I had an appointment with my surgeon. He believed that it was too late and nothing could be done and that we would be looking at palliative care. However, because the CT scan was inconclusive, and he could not be absolutely certain if I was stage 3 or 4, I was sent for a PET scan on Good Friday the 19th of April, 2019. Thank goodness a PET scan showed that the cancer had not moved to my lymph nodes and the surgeon performed a laparoscopy. I was so happy when he said after the laparoscopy that he was going to operate. He’d spoken to the oncologist and they wanted me to have chemotherapy and then he would operate to remove the tumour. They moved fast and I was so grateful. I had hope and I held onto that. I truly believed I could get through this. I had a daughter who I was determined to see grow up.

My daughter and I after I had a PICC line put in and the day before the Chemo started.

I started FLOT chemotherapy in May. The top shelf chemo. I had 4 courses of FLOT every 2 weeks. I found the chemo tough and the last two sessions I had to have 3 weeks apart because my neutrophils were too low. The nursing staff at Oncology day stay are amazing and I don’t believe they are recognised enough.

Nothing can prepare you for all your hair falling out. I remember being in the shower 14 days after my first lot of chemo and running my hands through my hair and big clumps were in my hand. There is lots of wonderful support out there to help you with this. I got a wig but I very rarely wore it. I found beanies great. Kaus Hats have an amazing selection of scarves, hats and beanies.

June 2019 – chemo day stay

I had great results from the chemo and it had shrunk significantly. This was followed by a full gastrectomy operation on the 14th of August where my stomach was removed. This operation was huge and I was in the hospital for 2 weeks with a feed tube for 10 days until I passed a scan that showed no leaks. I was grateful that the surgeon was able to remove 95% of the tumour, he couldn’t get a small amount that surrounded one of my main arteries.

6 weeks after the op I started my first of four session of the second round of FLOT chemotherapy. Once again it was tough. The first 2 days following chemo were fine then it hit hard for about 8 days, the last 4 days were good and then it started all over again. I found the fatigue hard, and I was very sensitive to sound and light. Exercise was so important for helping me get through this stage.

A highlight was getting my PICC line removed on the 12th of November after having it in for 7 months.

Once I got through the chemo, I moved to 30 daily sessions of radiotherapy and chemo pills combination. I stayed at the Cancer Society Lions Lodge. An amazing place that I could not have gotten through this last phase of my treatment without. I finished my treatment on the 15th of January 2020. This was the toughest of all. My oesophagus became inflamed and I couldn’t eat and I was very weak. Some days I thought my legs couldn’t hold me up.

Radiotherapy on 15th January 2020

I lost a lot of weight through this and a lot of muscle tone. I’ve been working with a Pinc & Steel physio to work on strengthening my core to help with balance. This is such a vital part of recovery. I am extremely grateful for the funding. As you can imagine it is hard going through all of this treatment. I was unable to work so I’ve been reliant on funding. Learning to eat without a stomach has had it’s own challenges. I can now only eat small amounts every hour through out the day. The biggest change has been not being able to tolerate water, I found it too heavy and I just can’t drink it so have had to change the pH with lime or lemon or add powerade powder.

It helped me immensely to share my experience in a closed Facebook page. It helped me and it helped my friends and family understand what it was like.

March 8th, 2020   – almost 2 months after treatment    

Recovery is just as hard as treatment and the hardest thing is that everyone thinks you’re finished and that you can just get on with life. The support falls away and very few understand the fatigue or the emotional roller coaster that follows, not to mention chemo brain. Rebuilding your life and building up your strength takes time. It’s very easy to overdo it and it’s very important to keep life simple and as stress free as possible. This is easier said than done.

I’ve been lucky that I have amazing friends and family all sharing in taking me to hospital for appointments and chemo. This journey has been tough for us all but none of us gave up.

I have 3 monthly checks and a yearly scan. Unfortunately, after noticing pain and changes to my body we discovered that the cancer has come back.

This second time round has been tough, much tougher mentally to deal with. Somehow you have to pick yourself up and face treatment with a knowing of how difficult it is. That I was going to need to lean on my friends and family again to help care for my daughter. But also I had to face again the thought that I may only have a year with my family and friends. The only way to get through this for me has been to focus on today and accept graciously all offers of help. I am here right now!

No one knows when their time is up so I make the most of each day and keep believing that I can beat it again just like I did the first time. Since August I have been through 30 sessions of radiotherapy and have completed 3 cycles of 5 FOLFIRI chemotherapy.

I truly believe a positive – never give up attitude is important. I have found focusing on the positive and one step at a time helpful. Lots of self-care has been amazing for me. Making me a priority has become my new mantra. Also learning not to be too proud to ask and accept help. This is something you can’t and shouldn’t have to deal with alone.

I have shared my story because I believe it is important to bring awareness about gut cancers. Gut cancers don’t present symptoms until they are advanced and in a lot of cases too late to do anything. Pay attention to your bodies and if things change from your normal get them tested and make a nuisance of yourself. If it’s not normal for you, keep asking for tests.

It is because I paid attention to changes in my body and noticed pain and brought it to my GP and oncologists’ attention that I may have a chance of surviving a recent re-occurrence.