Murphy’s Law

A blog for Kidney Cancer Awareness Week by Alyson Murphy

ROUND 1

Alyson and her daughters

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

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 as the pain wasn’t excruciating. One night I was woken-up with an odd feeling in my tummy. I felt as if hot liquid a was running through my stomach. It wasn’t painful, but very uncomfortable and made me feel sick and 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 I explained my symptoms but said I was generally felling OK. I was surprised when he asked me to go immediately for an ultra-sound explaining he’d felt a large lump in my stomach.

Following the ultra-sound, the radiologist called in two other doctors, one of them held my hand told tell me there is a very large mass in my abdomen measuring 15cm which needs to be treated immediately. I went back to the gynaecologist and he informed me that he had left a message for the urologist to call him. Fortunately, he called him back whilst I was sitting there and he arranged to see me 7am the next morning (Thurs.) for a CT scan.

Following the scan, the doctor phoned with the results around 6pm. He confirmed the tumour was malignant and that I was to undergo a seven-hour operation the next day. I explained that I had to first finishing making my daughter Kimberley’s debutante ball dress for the following Friday, so could only go in for the operation on Monday, which I did. I underwent the operation and was left with a severe scar from top left, under my breast, to the top of my right hip but I was discharged in time to see my daughter go off to the ball in her limousine. Remarkably, within two months I was back in work.

I had a follow up meeting with the doctor 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 back in the UK on the 12th of December 2001 with two very unhappy teenagers. I had regular 6 monthly scans and finally got the ‘all-clear’ in 2006.

ROUND 2
Fast forward 11 years to November 2017. I’m 58 years young, and I’m working as an Office Manager for Carillion Rail. It was then I felt that niggly pain again, but this time it was also under my left rib cage. Straight away I booked to see my local GP who took a blood test and 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. When I arrived at the surgery, the doctor explained that the scan showed two masses near my pancreas and that we need to arrange a CT scan immediately. It was a Wednesday and my Doctor said she will try to get an appointment on the NHS but as I had private medical aid I said I would try that route too and see who gets an appointment first. She phoned me on the Friday and told me she’d had no luck as yet, but I’d managed to get an appointment with a private urologist for the following Monday where he arranged for me to have the scan. 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 my case was to be discussed in an MDT meeting which turned out to be the longest wait; three-weeks in total. I have coloured them in yellow in the pic below.

From what I was told nobody wanted to take my case on, I guess they thought my case was hopeless. I 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. There are currently 5 treatments available for my condition should Sutent not work.

Unfortunately, the Sutent did not agree with me and by March 2018 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. So, at this point, I’m having good and bad days but grateful for every second I’m alive and very lucky to have plenty support from two daughters, four sisters, one brother and Gerard.

ROUND 3 

We are now into 2023 and I’ve been on Pazopanib; everything was stable and side-effects were bearable. So, I decided to have a summer break from Pazopanib, which I did for three-month and it was wonderful. Then when I started back on treatment and into about my third week I started having a bad headache, I’m used to these so I just put it down to side effects starting up again.

On October 5th, 2023, the headache was a bad one, not a frontal one as normal but like a painful nerve one behind my eye at the back of my head. I said to my daughters on the Monday, if it hasn’t gone by Thursday I’ll phone the chemo helpline. Well, it didn’t ease, so when I called them they said I must go to my local hospital and they would be expecting me. When I got there at 6pm it was packed. As usual it was a 7 hour wait. I explained I have metastatic cancer hoping this would pull a few strings but, no chance. Eventually, after an hour I had bloods then I at least managed to get a seat. Another hour passed and I was in agony and cold, so I went home, my daughter was not happy. I got into bed at 9:30pm and at 11pm the hospital rang asking where I was, told them in bed and would see them in the morning!

I was back in the hospital by 9am and by 12noon I was sitting with the doctor being told I had four clots and two aneurysms and they were admitting me! You can only imagine the shock for us all. There were no beds, so I had to sleep in a chair all night. They arranged for an ambulance to take me to another hospital to see an ophthalmologist as they were worried I could lose my sight. An hour before the ambulance arrived the nurse asked if I could make my own way there as they can’t get an ambulance. Really not happy about this as neither of my daughter’s drive, after complaining they eventually organised an ambulance.

The ophthalmologist was happy that my eyes were ok but still no bed so, another night in a chair with three other patients also in chairs. The lights were really bright in the room so I asked if they could switch them off as it really didn’t help my headache.

I was woken up in the middle of the night to say they had a bed for me, when they tucked me in nicely, not on a ward but a room in ICU, I asked them to turn the light off and they said; “oh sorry but the light switch has broken and the light has to stay on” it was so bright I went back to the chair in darkness to sleep. Murphy’s Law, I swear, if I didn’t laugh I’d cry. They eventually got me a bed in a side room off ICU.

Next day I had an appointment scheduled for my kidney scan at my local cancer hospital so I explained to the neurologist I cannot miss this, and he discharged me. I was shown how to inject myself with Fragmin and booked a follow up meeting the following week.

So, I had to stop pazopanib immediately and my oncologist decided to try something completely different from TKI and put me on an immunotherapy, nivolumab. In the meantime, I’m being seen by a Professor Pease for the clots and Dr Corkill for the aneurysms. My oncologist and the neurologist are in contact with each other and have decided to have five infusions before scanning to make sure nivobulom is working. They will scan my head at the same time to see if fragmin has dissolved the clots before they can decide what to do about the aneurysms. The fifth infusion has been booked for 4th February and the scan arranged for 20th. No results appointment received yet.

I’m forever the optimist and looking forward to clearer results, less visits to the hospital, the arrival of spring and a happy 2024.

Good health to all, especially all those on this journey. We will beat it.

Alyson.