Kidney cancer left me needing open-heart surgery and dialysis
A courageous care worker from Colchester has spent the past two and a half years rebuilding her life, after a tumour on her kidney led to thrombosis, a stroke, kidney failure and a five-month stay in hospital.
Mum of two, Clare Bullen, 50, had to re-learn how to walk and talk, after combined open-heart surgery and the removal of a cancerous kidney caused massive bleeding which led to a stroke. Since then, she has needed life-restricting dialysis treatment three times a week, affecting her ability to work, travel and engage in day-to-day activities.
Clare says: “When I first came out of hospital, I wanted to give up. I just couldn’t carry on. I had to learn how to eat, walk and do all the things you would as a baby. With the support of my family and professionals, I’ve been able to make a good recovery. However, life isn’t what it used to be and I’m not the same.
“Life before my diagnosis was really busy. I’d worked in a primary school, and had just started a career as a full-time care worker. We loved to travel around the country with our children for their rowing competitions. Now I’m exhausted all the time and only work a few days each week. I can no longer swim because of my dialysis line and cannot enjoy a holiday abroad due to the commitment of needing dialysis.
“Dialysis is not enjoyable, and I really do not want to do it. However, I know it’s necessary to keep me alive. I don’t know how we’ve been getting through this as a family. You never think something like this could happen to you.”
Cancer diagnosis
In August 2022, Clare visited her doctor after noticing she was having headaches and feeling out of sorts.
Clare says: “I had been stressed in my previous work and had high blood pressure. The doctor and I thought it could have been early menopause and I was prescribed medication for this. However, a subsequent scan showed a tumour on my kidney, and a thrombus [blood clot] was found in the inferior vena cava from my kidney to my heart.
“It was very scary hearing that I had kidney cancer. To find out that I’d also need open heart surgery to treat the thrombus was terrifying. It took a long time to get my head around it. I’m lucky my husband has been here to support me.
“In October 2022, my body was cut open for three days while I had multiple surgeries at Basildon University Hospital. The thrombus was removed, and so was my cancerous kidney. However, the surgery caused massive bleeding due to a tear in my liver. I had 30 units of blood transfused, and the trauma caused me to have a mini stroke. My gallbladder was also removed as it had become inflamed as a result of the surgery.
“I spent five months in hospital in Basildon, Southend and Colchester. I don’t remember a lot of what happened but I’m still living with the ramifications. The stroke caused the left side of my face to become droopy, and my left arm to be very numb and tingly. My remaining kidney ceased to function, and I have needed dialysis ever since to keep me alive.”
Life on dialysis
When Clare left hospital, she had to find a new normal – recovering from her stroke and adjusting to needing dialysis three times a week.
Clare says: “If you didn’t know me prior to my illness, you might not be able to tell that I am unwell, but I know I’m different now. I can hear my voice isn’t the same as it was, and I find it hard to walk in a straight line. I’ve had to build up my strength just to do simple tasks like holding a saucepan.
“Whilst in hospital, my family rallied around me, but I didn’t want people to visit and see how I was struggling. I couldn’t talk or feed myself properly. I was in bed and had a catheter. It has taken a long time to feel comfortable with myself again. I hated looking in the mirror because of the scars from being operated on. But now I see that it all tells a story.
“Throughout this I’ve been having dialysis in Colchester. It took me a long time to accept that this is how my life is now. The sessions are long, often far exceeding the four hours needed to be on the machine itself. It takes a lot of time out of your life. I don’t think people realise how exhausting it is, even on the days between treatment.
“Before I became unwell, I was a full-time care worker. I’ve started a new job in the care sector but can only manage up to 18 hours a week because of how dialysis affects me. My husband and I haven’t had much financial support. We’ve had to spend our savings to try and muddle through. He’s had to care for me, work and do everything for us.
“I’ve been diagnosed with PTSD because of all I’ve gone through, but mental health support has not been provided. I really needed counselling, but I was disappointed in the sessions I did manage to arrange. I still feel like I need support today.
“Things I used to love, like swimming every day before work, I can no longer do because of my dialysis line. I wish I could get away from the relentlessness of treatment by taking a holiday. However, I’d still need dialysis wherever I go and that’s no break.
“Going through this has changed my perspective on life and helped me appreciate what is actually important – my family and my health. You don’t know what’s around the corner, so you need to make the most of life.”
Hopes of a transplant
Clare can only be added to the transplant list for a new kidney when she has been cancer-free for three years. Everyone is hopeful this will be in the autumn this year.
Clare says: “I don’t want to have dialysis for the rest of my life. A transplant could happen quickly, or it might never happen. If it does, my body might reject the new kidney because I’ve had a lot of blood transfusions. There are no guarantees with a transplant, and it isn’t a cure. I am fearful of having surgery again. There are a lot of ifs and buts. I’ve just got to live life as best I can and keep positive.
“It’s amazing looking back at photos which were taken of me after my operation, stroke, and time in hospital, to see the progression I’ve already made. I’ve reconnected with friends and have become involved in lots of community groups. I support the Colchester Kidney Association to organise activities, and I’ve built close relationships with other patients at the dialysis unit. Everyone has their own story and it’s nice to meet different people.
“I try to get outside and walk as much as I can now. That’s why I took part in Kidney Research UK’s March March this year. I was so tired afterwards, but I did it around my dialysis and it made me feel good in myself. It’s nice to feel like that again.
“It does make me emotional to think about the difference that a transplant could make. Being able to swim in the sea again and go on holiday. I really miss that. Me and my husband have talked about our dreams of selling the house and going travelling around the world in a camper van if it became possible. I hope one day it will be.”
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