Never give up, never back down.

A  special blog for Kidney Cancer Awareness Week 2023 by Amanda Towse

Hi, I’m Amanda I’m 55 and I live in Devon with my partner, Leon, and I have metastatic Kidney Cancer.

Amanda & Leon

Before my diagnosis I worked fulltime for the NHS enjoying my job in Admin. Leon and I used to love mountain biking, spending time with my partners two children, our families, friends and going to West Sussex to see my two grown up children and grandson. We used to love going out shopping and eating out, just like any normal couple.

I was first diagnosed in August 2019 after feeling unwell with severe stomach cramps and lingering tenderness, I also developed a dark plum coloured bruise in my belly button which was getting bigger and bigger, I was advised to go to my GP after showing my partner and the matron at work.

I saw my GP and was referred to the Assessment Unit at the hospital (where I worked) that same day and asked to come back the following day for an ultrasound. It was here they found that the pain I was experiencing was caused by a right sided fibroid with probable bleed. But there was also an incidental finding of a renal mass of 6.4cm in my right kidney; likely to be renal cell carcinoma. We were in total shock, we never thought it might be cancer! Who’s heard of kidney cancer that’s not common, it must be a mistake. The waiting between appointments and scans was horrendous and added so much to my anxiety. I couldn’t function, I couldn’t go to work especially in the hospital, all I could think about was cancer and dying. All I wanted to do, and did do, was stay in bed and cry.

I had no obvious symptoms of kidney cancer, or so I thought! But looking back there were very subtle signs I had brushed off as the menopause like night sweats, aches, tiredness. I had more scans and tests and then saw a Urology Consultant.

On the 25th September 2019, I had a full nephrectomy and was told my cancer was gone. The squatter had been evicted!! My histology came back as Grade 4 Clear Cell Renal Cell Carcinoma pT1b with clear margins. Fantastic news.

To be honest this was the worst time. After my nephrectomy I mentally fell apart and suffered from extreme anxiety and couldn’t cope on a daily basis with what had happened, it took me seven months to get back to work.

On April 7, 2020, I was back at work when I got the news that my six month follow up scan showed a recurrence. I now had a new bulky mediastinal lymphadenopathy 22mm tumour in my right pretracheal (lymph nodes in the neck), a 29mm subcarinal node (bronchial) and 14mm right hilar lymphadenopathy (lungs).

Funnily enough, I actually took this news fairly calmly at the time as I had never quiet believed my cancer story was over. The hardest thing was telling my partner and all four children that my cancer was now uncurable.

It then hit me hard and I went through a grieving process of everything I wouldn’t be here for, my gorgeous grandson starting school, my son getting married, I probably won’t be here to meet anymore grandchildren, or grow old with Leon; all the things we take for granted now were never going to happen for us. Every happy memory was now sad because I thought they would never happen again.

I started on a treatment which unfortunately after 6 months hadn’t worked and showed some significant progression. I found this news devastating and almost decided to give up on all treatment, I was very low and was in hospital having my right lung drained when we found out the treatment wasn’t working. I felt so down, tearful, and didn’t think it was worth trying another option because I felt so ill due to the side effects of treatment.

But I started on immunotherapy in the September 2020 and after initial problems with my pituitary gland, sepsis and then covid which ended

in a 30-day stay in the High Dependency Unit. My treatment is working fantastically well, and the last two surveillance scans showed that all the tumours have shrunk and are not now detectably on a CT scan. I’m so glad I stayed on treatment, in fact my life is wonderful, and I am seeing all the things and events happening that I thought I wouldn’t be here for. Also, I have made some amazing friends on my Instagram account @Amanda’sKidneyCancerChronicles.

I can now see that, remarkably, cancer has actually had a positive effect on me and my life.

Never give up.

Amanda.

#kcaw2023