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My battle with Cancer and ToF

25th May 2016 - I was sat in outpatients waiting to see my specialist cardiologist Dr D. Wilson, even though this was a routine appointment, I felt awful. I’d been to my GP numerous times struggling with my monthlies. I’d been told I was run down. I thought I was peri-menopausal, they said at 42 I was too young.

At the consultation I told Dr Wilson I felt dreadful, I was hot, dizzy, and nauseous.  My ankles and feet were swollen, as was my stomach.  In a matter of weeks I had gone from a size ten to a size fourteen. I felt constantly ill and couldn’t go on my treadmill after work as I was utterly exhausted. 
He did an echo, gave me some diuretics and told me to come back in two months. I was terrified, convinced my pulmonary valve was packing up.  I considered the possibility of pregnancy, however with my partner, Mark, having a vasectomy it was impossible.

I was on annual leave, so the next morning I took the diuretics and went back to bed. Mark came home lunchtime to check on me. Apart from feeling sick and having a raging thirst I felt alright. Late afternoon I got worse, suddenly I was violently sick. I couldn’t stop being ill so I phoned Mark and asked him to come home. He immediately phoned the surgery who saw me as an emergency. 
I was sent to A&E with a suspected blocked bowel, then hooked up to a drip and catheter. I was still being violently sick. I had pregnancy and blood tests; an X-ray; then later a CT scan. In the early hours of the morning I was told they had found a mass and transferred me to a ward.

I was delirious, family were called in as doctors didn’t think I would make it. Sleep deprived, pumped full of drugs and frightened, I hadn’t handled the news well.  There was worse to come.  After a biopsy and draining of the asities my mass was declared a cancerous ovarian tumour. The gynaecologist was not prepared to operate because I had complicated CHD history. Though she did refer me to the specialist cancer centre in Singleton Hospital, Swansea. I asked a doctor on her team what were my chances. He said “Well, you should do your bucket list.”

At Singleton I met my new Oncologists Dr K Lutchman-Singh and Dr G Bertelli, the best consultants in Wales. Several appointments were made including another biopsy, more draining of asities and a Nuclear Test, where heavy metals were injected into my bloodstream to establish the rate of the toxins dispersed. The results used to calculate the dose of chemotherapy I could handle.

Dr Lutchman-Singh wanted to operate then follow with chemotherapy. I asked what was the point if doctors at my local hospital said to do my bucket list. Encouragingly, he replied “Do you think I would ask you here, if I thought I couldn’t help you?”

“What about my Fallot’s Tetralogy?” I asked.

He replied “Well you will be my first one to be operated on. We will have a cardiology team on stand-by. And we will operate in Moriston Hospital, which specialises in cardiology.”
I was kept in after the second biopsy as they found a small blood clot in my groin. As I was on the ward, Dr Bertelli came to see me. He gave me paperwork to read about Taxol and Carboplatin the drugs he would treat me with.  I told him I was terrified of the chemotherapy, and I wanted to know would my heart cope with it. He said, not unkindly, “I don’t know how you will be. I don’t know how your heart will respond. Chemo is going to make you very ill, the drugs can damage your heart. I don’t know if it will save your life. I have never given chemo to a Fallot’s before.”

“I don’t suppose you can give me anything for my periods, can you?” I asked, “They are making me physically sick each month.” 

He said he could, I was given Prostrap injections to stop them.  

When I was discharged Mark was taught how to inject me in the abdomen with Tinzaparin for the clot. I was too weak to do it myself.

Time dragged on. I kept being admitted to hospital with complications, the first operation was cancelled as I was too unwell to have it. The second because the specialist anaesthetist left to work elsewhere.

In August I asked Dr Lutchman-Singh how likely was my cancer to spread with all this waiting around. I wasn’t complaining, I was just petrified, I’d already had 12 litres of fluid drained from me and I was under seven stone. He listened to me, considered, then said they would do chemotherapy first. 

I had the pre-chemo consultation on the 25th May 2016, at my local day unit. I met the nurses who would look after me. I got a “goody-bag” containing factsheets, a thermometer, emergency phone numbers, blood, stool and urine sample bottles. Macmillan leaflets, and a collection of pre and post session medication. 

I became unwell a few days later and was admitted for a blood transfusion. Chemotherapy was rescheduled.  The first session fell on my birthday. I opened my cards, but left the presents at home for later; I wanted to give myself something to look forward to.  

Cannula inserted and drip attached the workup antihistamines and steroids were no problem, apart from feeling like I was having a night on the tiles. Ten minutes after the Taxol was added, the room started to spin. I felt an incredible pressure in my chest, I started to get breathless, I asked Mark to call the nurse. The next thing I remember was coming around to the Sister tapping my neck, another nurse was removing a needle after a shot of adrenaline.  The drip was out, anxious faces swam into view. I was allowed to sit for a few minutes before being transferred to a side ward with a bed. Of all the side effects to get, I had to end up with the rarest one: anaphylactic shock. 

I was scared, not just because of the adverse reaction but because I thought that now there was no treatment available for me. Thankfully though, after about twenty minutes and drip re-attached, we tried again. This time with the pump running at half speed, my body better able to tolerate the toxic flow.

There is much I could tell you about sixteen weekly chemo sessions - the exhaustion, the nausea, being bald, raging hunger pangs from the steroids, or I could tell you the good bits – where you find out how amazingly supportive your medical team are. Friendships forged with other patients, choosing wigs, help from family and friends. The kindness of strangers too.  

My final session was on 17th January 2017; on Valentine’s day I had surgery. There was no guarantee I would be strong enough to handle it; a full hysterectomy plus tumour removal was a big operation. I may have needed a colostomy as it was unclear if the tumour was attached to my bowel. 

I was anaesthetised by epidural, waking up in ICT many hours later. I hadn’t needed the cardiac team nor the colostomy. Later I was transferred to a ward; a week later I went home.
Late May I returned to work. That first morning went well, I was on phased-return, that same afternoon Mark took me to the optician’s. Walking to it I felt tired, I assumed it was post chemo fatigue. I collected my glasses, headed back to the car. As I reached the end of the shops, I had to sit on a bench. I was exhausted. I managed to get back to the carpark. On the journey home, I could hardly keep awake. I gave up on supper after a few mouthfuls and went to bed but woke up being violently sick.

A&E suspected food poisoning, I was admitted to Adult Clinical Decision Unit.  On the following Tuesday my non-specialist cardiologist did an echo, it revealed blood clot in my heart. My kidneys were failing, my body shutting down. 

Stage Four heart failure is as scary as cancer - but thanks to my team I pulled through. Nine months on the heart failure is at Stage Two. Life has changed dramatically for me, but I’m still here enjoying it.


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