The Road to A&E

A  special blog for Kidney Cancer Awareness Week 2023 by Janet.

Having had a successful career as a chartered accountant and mathematics teacher, I was talked into travelling to Spain which meant selling the beautiful house we built in my father’s garden, leaving him and my fabulous son behind. This wasn’t really my dream, but that of some close friends and my partner, so plans were made.

The move happened and I hired a large left-hand drive motorhome to drive down to the Costa del Sol and off we all set; me, our dog and three cats, and my friends two small dogs. We drove all the way down through France and Spain in horrendous weather at the beginning of December 2020. All this, and in the middle of Covid-19 pandemic.

I’d rented a villa in the beautiful hills of Competa for us all to live in and we set about settling into our new surroundings. But, by the time summer came along, it was clear that living together as two couples was not going to work as a long-term thing. So, our friends moved out into their own place and…. we were no longer friends.

By the end of the summer, it was clear to me that I was ready to come home and so my partner and I planned to travel back to the UK in the November of 2021 to look for somewhere permanent to return home to. Before this happened, some close girlfriends I knew from teaching came out to stay with us, and between them and my partner they decided I was not acting myself. I was tired all the time and couldn’t concentrate. I was still working online on a part-time basis and even that was not going as smoothly as it should have.

I refused to go to a hospital in Spain as I didn’t want to get stuck in another country if there was something serious wrong with me. My friends persuaded me to come back to the UK earlier and go straight to A&E.

I travelled back at the end of October 2021 with one of the girls and went straight to Aintree A&E, the doctor immediately sent me for scans, and I was admitted.

Because of Covid-19, no visitors were allowed, and I felt quite alone. The following day I remember being surrounded by a group of doctors, including students, and the curtains being drawn around my bed. It was then they told me I had an 18cm kidney tumour, a brain tumour, and some suspected lung nodules. It was an extreme shock to say the least. I think, because of my tiredness and lack of concentration, my friends and I had all thought I had suffered some sort of stroke. 

A few days later I was discharged and went to stay at my father’s house. My son and stepson were arranging to get their dad, my partner, back to the UK, along with our dog and three cats. In the meantime, the neurosurgeon informed me that he needed to operate quickly on the brain tumour. Once my partner was back, we saw the neurosurgeon for the plan and the operation was scheduled for the 9^th  November 2021 and I was admitted to Walton Neuro. After the surgery all I could think about was whether the boys had managed to get back across the channel with my pets. The headache was excruciating but pain relief helped but I think the nurses all thought I was  mad.

In the following weeks I had various appointments with the neuro and oncology teams. They informed me that the cancer had been identified from the brain tumour as aggressive Renal Cell Carcinoma and that I was to start immunotherapy- which would involve a course of nivolumab and ipilimumab- before Christmas. I did some research and the side-effects of the nivolumab and ipilimumab sounded horrendous but, it was the only option. The kidney tumour was too large and because it had already spread, they didn’t want to operate.

My treatments were scheduled for every four weeks after the initial infusion, firstly with an infusion of the two drugs, and then a reduction to just nivolumab along with scans of the brain and torso every three months. The worst side-effects were the diarrhoea and for a period of time I experienced very bad headaches. My scan results in July showed the immunotherapy treatment had stopped working. Unfortunately, I knew this before our meeting as I’d been admitted to Southport Hospital mainly due to extreme tiredness and a few other symptoms. While there one of the doctors I saw in A&E let slip the results of my most recent scans and I found this very unprofessional behaviour.

But there was another plan from the oncologist; I was to be moved straight away onto Cabozantinib. This involved taking a daily tablet instead of having infusions so practically it was easier to deal with. I also found out that my adrenal glands had stopped functioning properly and I would be on hydrocortisone, potentially for life. I had also developed steroid induced diabetes, most likely from the high doses of steroids when the diarrhoea was at its worst. But I was still alive, and the first scans only six or seven weeks on this new drug showed significant shrinkage in the tumour in my kidney.

Today I have been on Cabozantinib six months. Due to some liver function tests the tablets have had to be paused occasionally and I’ve been reduced to 40mg from 60mg. My scan in January 2023 was stable, no spread anywhere else but no shrinkage like last time so, carry on with current treatment. I have had some other side effects from the tablets but luckily, I seem to have so far escaped some of the nastier ones. I’ve had hair loss and what is left is going white. I have a sore tongue and bouts of diarrhoea and I’m definitely feeling more tired than I used to.

If I look back a number of years following the extensive internet researching, I have done since diagnosis, mostly on technical and research papers, I could maybe have suspected something not good was brewing. The 18cm tumour on my kidney had clearly been growing for quite some time and I’d been experiencing very heavy night sweats for a couple of years even when the air conditioning was on full blast in Spain. I never discussed this with my GP in the early days as I just put it down to the menopause, as I suspect my GP would have done plus many of my friends of a similar age were experiencing this, too. Now, through research, I know that persistent night sweats can be a symptom of cancer. Also, in the last few months before I was diagnosed, I could feel a swelling on my right-hand flank. It was not sore or red, but I could clearly feel it when I was lying flat. On reflection, that is not surprising due to the size of the tumour. And, the tiredness, and the headaches, combined with the swelling and those night sweats! I should have seen these as a red flag. I cannot help but think many kidney cancers could be caught at an earlier stage if there were adverts on the TV like the stroke adverts, and maybe if GPs were more aware of some of the symptoms. But with the lack of that kind of support, we all need to talk about the symptoms of kidney cancer and not have the first time we, our family or friends, know about it is when we they receive a diagnosis as I did.

Spread the word.

Janet

#kcaw2023