The consultant told me it was the largest he had ever dealt with. He said it was HPV aggressive, but that it was treatable. He warned that I faced “the journey from hell” and he was right.
Looking back, I had symptoms that were telling me I had a problem. Fluids had been coming out of my nose, I thought my voice had changed. I also had a small lump under my right ear. Lots of follow ups didn’t show any problems. It wasn’t until I got a very sore throat that revealed some infected tissue after I coughed.
Seven weeks of radiotherapy followed, and five weeks of chemo. I live in an island community, so I had to leave home to receive treatment on the Scottish mainland for the duration, leaving my children at home with family.
The weight began to drop off… after three months, I had lost six stone
I got through the treatment phase better than I could have hoped, but it was my onward recovery when the problems really began. I struggled to swallow anything because of the size of tumour and damage done by the treatment. My throat and tongue just couldn’t do the job anymore. I had eaten perfectly normally for 45 years, then in a few months, it was gone.
The weight began to drop off. My sister tried to keep me going with high-calorie smoothies, but I was only managing a tiny amount, and after three months, I had lost six stone. I was terrified of the thought of a feeding tube, but in the end it was that or starve to death.
Through trial and error, I learned which foods I could manage to swallow
I was admitted to the hospital and a percutaneous endoscopic gastrostomy (PEG) tube was fitted. I was told to take “nil by mouth,” as a video x-ray deemed it too dangerous for me to try and swallow anything. However, I didn’t want to give up so I learned my own techniques of how to manage a little water, leaning my body at an angle so the liquid would go down the correct way.
I survived with the stomach tube and slowly began gaining strength and weight. Through trial and error, I learned which foods I could manage to swallow—tiny amounts initially. Everything had to be mashed up with water as I have no working salivary glands anymore, courtesy of the radiotherapy.
It was a horrendous time in many ways, but my husband and I often reflect on how close it brought us as a family
I never gave up, though. I loved food too much. It’s April 2020 as I write this and I was able to have the stomach PEG removed four months ago. I still have one or two high-calorie milkshakes daily to boost my intake, but I can manage a bigger variety now. I cannot swallow any lumps and never will be able to, but I can enjoy a limited selection. The experts did not believe I would ever swallow again—I was given a five to ten percent chance. They also did not know if I would be able to speak, which I manage fine.
It was a horrendous time in many ways, but my husband and I often reflect on how close it brought us as a family. We have been to hell and back—and survived. He looked after me in ways a husband never should have to, but we have come out the other side.
My advice to anyone going through this: live each day as if it’s the last, as you never know when it might be
I was told the treatment had been a success in March 2019. So I now have two monthly check ups. I have had one scare with raw tissue in my throat, but a biopsy and scan came back clear. Now the coronavirus means no check ups for the foreseeable future which worries me, but there’s nothing I can do about it.
My advice to anyone going through this: live each day as if it’s the last, as you never know when it might be.