“One night I was woken up with an odd feeling.” – Alyson’s story

This week in Community news we’re sharing Alyson’s story and experiences with Renal cell carcinoma, a form of kidney cancer,  from her first diagnosis to today.

At the age of 20 years old, I emigrated to South Africa with my then husband Gerard.  At the age of 40 years old I was working as a Logistics Manager for Howden Safanco and had been divorced for 2 years.  I had by this time two daughters, Kimberley (16 years old) and Katherine (15 years old) and I was holding down a very busy lifestyle.

"One night I was woken up with an odd feeling."

I started feeling very tired and had a niggly pain in my right kidney, which I thought could be the start of kidney stones or something.  I wasn’t one for running to the doctor all the time so I just put up with it. The pain wasn’t excruciating.  One night I was woken up with an odd feeling. I felt as if hot liquid was running through my stomach, it wasn’t painful very uncomfortable and made me feel sick. This lasted for about 10 minutes.

The next morning, I happened to mention it to a colleague, and she suggested I see a doctor as she didn’t think I looked well. Two days later, I opened my diary and my colleague Margaret, now known as my guardian angel, had made an appointment for me to see a gynaecologist.  My appointment was at the Morningside Clinic, fortunately I had private medical aid.  During the consultation the Doctor felt my stomach and asked how I was feeling in myself. I explained that I had been feeling tired and had a niggly pain in my side but generally okay.  He asked me to go immediately for an Ultra-sound as he explained he had felt a large lump in my stomach. 

When the radiologist had finished, he called in two other doctors. One of them held my hand and asked if I had any children. She then continued to tell me that there is a very large mass in my abdomen measuring 15cm which needs to be treated immediately.  I went back to the gynaecologist, he informed me that he had left a message for the Urologist Dr Geceleter to call him. Fortunately, he called him back whilst I was sitting there and he arranged to see me 07:00am the next morning (Thursday) for a CT Scan.  I had the scan and Dr Geceleter told me he would phone with the results Friday evening around 06:00pm with the results.  He confirmed that the tumour was malignant and I was to undergo a 7 hour operation the next day (Friday).  I explained that I had to first finishing making my daughter Kimberley’s debutante ball dress for the following Friday, so I could only go in for the operation on Monday.  

"I underwent a 7-hour operation and was discharged in time to see my daughter go off in the limousine to the ball."

I underwent a 7-hour operation and was discharged in time to see my daughter go off in the limousine to the ball.  The operation left a severe scar from top left under my breast to the top of my right hip, but within two months I was back in work.  Subsequently I had a follow up meeting with Dr Geceleter and informed him that I had decided to return to the UK as I was worried of a reoccurrence and worried about my daughters being left on their own in South Africa.  I arrived in the UK on 12th December 2001 with two unhappy teenagers.  I had regular 6 monthly scans and finally got the all clear in 2006.

In November 2017, aged 58 years old, I was working as an Office Manager for Carillion Rail.  I felt that niggly pain again but this time it was also under my left rib cage. I went to see my local GP who took a blood test subsequently sent me for an Ultra-sound.  Following the scan, the radiologist instructed me to go to my GP immediately and that he was going to call them to discuss the results of the scan.  On my way home the doctor called me and told me to go straight to the surgery.  She explained the scan showed two masses near my pancreas and that we needed to arrange a CT Scan immediately.  This was a Wednesday, and my Doctor said she would try and get an appointment on the NHS and as I had private medical aid, I would try that route and we could see who got an appointment the quickest.  She phoned me on the Friday and told me she hadn’t had any luck as yet but I managed to get one with a private urologist for the following Monday.  My daughter and I went to the urologist and he arranged for me to have a CT Scan. I can’t remember how long I waited for this but it wasn’t too long.  On our second appointment he informed us that there weren’t just two masses but one primary on my kidney and four in my pancreas.

He explained the next thing to happen is for my case to be discussed in a MDT meeting, this turned out to be the longest wait, 3 weeks in total.  From what I was told nobody wanted to take my case on, I guess they thought my case was hopeless.  It ended up seeing Dr Barber based at Velindre Cancer Hospital Cardiff.  He explained that my diagnosis was inoperable and that he would like to start me on targeted treatment called Sutent. For my condition, there are currently 5 treatments for me available should Sutent not work.  Unfortunately, by March 2018, Sutent did not agree with me and I ended up in hospital with a pulse rate at 200.   Shortly after that I was put on 400mg of Pazaponib which I am still on today, however on 200mg dosage.  Scans are showing shrinkage so we are heading in the right direction.  I asked if they would disappear altogether but told that was very unlikely. 

"I currently have good and bad days but I’m grateful for every second alive."

I currently have good and bad days but I’m grateful for every second alive. I am a positive person and I am very lucky to have plenty support from 2 daughters, 4 sisters, 1 brother and Gerard.

Pictures, Alyson in 2016, 2019 and 2020 (clockwise from left)

We want to thank Alyson for sharing her story with us. If you or someone you love has a similar diagnosis, please remember our Kidney cancer group is a safe place to talk to others and find support. Do you have a story to share? Let us know at community@macmillan.org.uk.