Whack-A-Mole with kidney cancer

A blog by Charlotte Connolly

In January 2019 I asked my husband to leave. And my journey began!

I was working as an Education Welfare Officer travelling around schools, which I had been doing for nearly 20-years, when one day out of the blue I began bleeding heavily to the point where I needed to take a change of clothes wherever I went! This went on for nine-weeks when in the end one of the secretaries made me ring the NHS helpline. They told me to ‘go to your local A&E immediately.’ Due to my personal situation, I hadn’t told my parents about my husband leaving and I was the mother of three children- two under 18- who had lost their dad to cancer the year before, I didn’t go.

On Valentine’s Day I decided that instead of going to my Welsh language course I would take myself to A&E. During this visit I was told that due to being a 47-years young woman it was ‘probably’ menopausal, and I was prescribed pills and referred to the ‘Menopause Clinic’. So, I waited.

In the meantime, I’m diagnosed with raised blood pressure. The GP signs me off sick for a month blaming the high blood pressure on the stress of my husband moving out. I returned to have my pressure checked in April where I voiced my concern that I was still bleeding. The Dr referred me for a ‘transvaginal scan’, which came back normal but was not a pleasant experience!

While I’m waiting for the scan I find a lump in my breast in May 2019. Antibiotics failed so in July I was referred to the breast clinic in Port Talbot where I received amazing service. Thankfully, the lump turned out to be a large cyst which they drained and sent me on my way!!

I finally received my appointment in the ‘menopause clinic’ in Port Talbot Hospital in October 2019. However, the Dr informs me I have been sent to the fertility clinic! Oh, the irony! Anyway, she was happy to look at my notes and see what she could do. After telling me I had a ‘Meno Belly’ and to go on a diet until I was through the menopause, she agreed to fit a minerva coil. Cheers!

December 2019, I went to Cheltenham with some friends and was told my protruding stomach ‘wasn’t normal’ – Rude! They said I should go back and ask for an ultrasound and CA125 test ASAP. I did as was told, had the test, and waited for results to come through. The GP rang the next day and said the results were high (mine 135, anything over thirty was high) and that they were referring me for an ultrasound and transvaginal scan. When the appointment came through it was on 23rd December – Happy Christmas!

On the day of the two scans, I was informed that the GP hadn’t put enough info on the ultrasound request, so they only did the transvaginal which came back normal.

I then had an appointment in clinic in Port Talbot where they decided I needed a hysteroscopy, and they would fit the coil at the same time. Luckily, I had the procedure done and coil fitted in March 2020 just before the country ground to a halt because of the Covid-19 pandemic.

Fast forward to September 2020 and it’s back to school at which time my coil decided to make a surprise appearance. So, back to the gynae consultant who repeated my CA125 test (113). The consultant decided to just give me medication and not replace the coil and recommended the GP refer me “elsewhere.

I pleaded for an ultrasound (the one that I should have had a year ago just before Christmas!) but in her wisdom and after feeling my stomach the Dr decided to send me for a cystoscopy instead as she said that was better. That came back normal. As a result of this I, again, begged for an ultrasound in November as my stomach was getting bigger! Now I felt like a nuisance, but I was not going to let it go. I had just secured a promotion that I had studied for four-years, and I was buggered if I was going to be ill now!

So, I got on with the new job and received the ultrasound appointment for the 1^st February 2021 and off I went to the appointment. The following day the GP (male this time) rang me to inform me they had found a mass on my kidney. This was a shocker. He asked me to come in for a kidney function blood test on Friday morning, I also had a CT scan appointment for Friday afternoon and asked to ring up for results on the following Tuesday. I rang the GP as instructed who said blood was fine, but he didn’t know I had had a CT scan so didn’t have results, but he would find out for me.

I waited and waited, then finally on the 17^th January 2021 I refused to wait anymore so I rang the consultant urologist and left a message that I was waiting for the results of a CT scan. They rang me back and said they had a cancellation the next day and would I come in (alone because of Covid!).

I logged off at work and popped to the hospital. During the appointment, I was told, whilst on my own and wearing a mask, that I had a 15cm tumour on my kidney and three spots on my lung. So, my journey began in the throes of the second lockdown with 14 days isolation before the radical nephrectomy, which was performed on the 31^st March at the Morriston hospital. I went five-days, with no visitors, in hospital to remove a 16cm tumour (yes it was larger than originally thought). I was the subject of many interested students who couldn’t believe it had gone undetected or undiagnosed for so long.

I thought that was the end of it, as my surgeon said it was all fine and wasn’t concerned about the spots on my lung, but he has referred me for a blind trial with Professor Wagstaff in Singleton.

I agreed to the trial and was told at the first appointment that the tumour was grade 3 and the chances of it coming back were 85%. Great! I signed up for the trial and had a scan to check I was cancer free, which told me I was – let’s go! Immunotherapy (blind trial meant I could get one drug, two drugs, or a placebo) intravenous infusions started and took place every fortnight.

Halfway through I developed pain in my back and went for an MRI scan. I was called in to see Prof. Wagstaff and his results showed that they had viewed the wrong scan at the beginning and instead of being cancer-free, I had three spots of cancer in my lung; and they had grown. Prof. took that as a sign I was receiving a drug because immunotherapy can increase tumour size in the first instance and was advised to continue. At the end of the trial, I was told (in separate appointments) that I had heart failure stage C and the cancer had progressed in my lung and was being referred to Velindre Cancer Centre in Cardiff. What was going on?

Over Christmas I suffered mobility issues, which I put down to the new heart failure drugs, and blurred vision… After a visit to Specsavers, they discovered a mass behind one eye and sent me to the eye clinic the next day. The clinic then discovered a 2cm tumour in my brain stem. I was kept in for three-days while they started me on steroids, which added a lot of weight and gave me ‘moon face’!

It was the start of the downhill in my life. First, I lost my licence due to the brain tumours and had to go on the sick again. I had a mask made and received Stereotactic Radio Therapy (SRT) to attack the brain tumour, but three sessions were all I could have because it was strong.I started on tivozanib, which I took daily (tablets) and lost three-stone. I had to take a break from it in June, which was a relief. I was back in work and going on holiday which was a welcomed break. I was put back on steroids to kick-start my appetite but then I couldn’t stop eating!!! I hated that steroid-induced ‘moon face,’ though.

Although I haven’t mentioned my three children much, they did suffer because life was no longer ‘normal.’ In 2021 when I had my operation and had to isolate for 14 days after, my middle son was doing his GCSE’s. Luckily, he had special consideration and they had predicted his grades because of Covid. By the time I was having a break from tivozanib in 2022, my daughter had just finished her GCSE’s and she also had special consideration and my son had just completed his first year in college! My eldest was working and managing OK.

We had a good holiday in a caravan for the week in July 2022 (I couldn’t get insurance to go abroad) but I couldn’t manage anymore. When I came back it was starting to become apparent that I couldn’t manage a full week doing my role as a senior in a team supervising and advising staff. By October I was told I had to go back on the sick and sadly had to accept ill health retirement. They didn’t want me to go; I didn’t want to go, but by then the fatigue, the slurred speech, and the mobility issues were really putting a strain on the other seniors and managers.

Since the brain tumour diagnosis in January ‘22, I have had a variety of ‘mets’ appear. Mets appeared in a multitude of places including the bladder, pancreas, neck, and spine (this caused a fracture between T1 and T2 necessitating the wearing of a full body brace, which now has now become the use of a soft neck collar).

I have been on-and-off treatment (tivozanib and cabozantinib) in various dosages. I am now on Cabo 20mg, three-weeks-on, one-week-off. I’ve had three hospital admissions over the space of 15 months and it’s always the heart fighting the kidneys.

Throughout my journey me and my children have carried on as normal as possible, they are typical teenagers and as a family, we treat my cancer with humour; it’s the only way to keep us all sane. My goals were to see both kids finish their GCSEs,  then to see them turn 17 and pass their driving tests and then both turn 18. Tick!  Moving forward, my short-term goal is to see my son turn 21 in September 2025 and my eldest son turn 30 in October 25. And, long-term…… I want to see my daughter turn 21 in December 2026. Fingers crossed!

My oncologist said in January 2022, “we are playing ‘Whac-A-Mole’”, and he was right:  As the cancer pops-up, we bash it back down again and we fight each day as it comes.

Keep fighting and keep whacking!

Charlotte