As part of our #HuffPostListens week in Birmingham, we are publishing a series of Life Less Ordinary stories from extraordinary Birmingham residents. Today, Sukhi Kaur, 34, tells her story of first being diagnosed with cancer aged 11, and processing it being a constant part of her life, and how she continues to fight the disease. To illustrate the series we have commissioned the respected photographer Vanley Burke to do a series of portraits, which will be on show in Birmingham this week.
I first learned my mum thought I was going to die by eavesdropping on a phone call. She had a little phone in her bedroom and used to call my aunties. She thought I was asleep, but I soon learned I could find things out by picking up the other phone.
The phone call was actually good news, believe it or not. I had cancer on 70% of my pancreas, it had spread to my spleen. At first doctors thought I would die, but a biopsy revealed a rare type of cancer, a low grade malignant cancer, which if surgically removed gave me a chance of surviving.
When I first heard the word cancer, I kind of blacked out. For me, cancer meant having a bald head and dying. That’s all I knew it to be. I had hair to my knees at that point, which I used to wear in two braids - because I’m a Sikh, we didn’t cut our hair. My hair was my best feature, I remember thinking ‘I’m gonna lose my hair and then I’m gonna die’.
Fortunately, the operation was successful and I became an outpatient at Birmingham Children’s Hospital, returning for annual check-ups. But in 2000, when I was 17 and about to start college, I learned the cancer had come back.
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I went for what I thought was my last scan. I came home from college and I got a phone call on my mobile. I heard: “Sukhi, it’s Dr. Stevens here.” And as soon as I heard his voice I knew, he never usually called me, and he said: “I’m so sorry. I need you to come in and see me.” They found lots of little tumours in my liver and lungs, about 11 altogether. It had spread, metastasised, and so surgery wasn’t an option - we had to have chemo and we had to start straight away. I can’t praise that hospital enough. From when I was 11 they looked after me, until they physically by law could no longer keep me, which was my 19th birthday.
It was a blur really. I didn’t handle it very well. I got involved with some not so good friends, I drank a lot of alcohol – I remember turning up a chemo drunk a couple of times. This is when my hair fell out in clumps and patches, my eyebrows, my eyelashes, all my body hair. Before it fell out my hair died, it turned into straw and I couldn’t get a brush through it. I tried to keep my hair for as long as possible, and had it cut into a bob, but eventually it had to go. I didn’t have the courage to sit in a barbers and have my head shaved, so my mum’s friend’s son was a barber and he came round to shave my head. He was a Jamaican lad, and he brought me these lovely, really funky bandanas.
My mum had always been scared it would come back, I had forgotten about it. My parents were getting a divorce at the time and my dad just kind of fell off the scene, got remarried and I didn’t see much of him. There was a lot going on at that point - I felt rejection and death just hung over my head.
For the next few years I had drug after drug, surgery after surgery. I got infections and spent time in quarantine, where no one could visit me unless they had gloves, apron and a face mask on. I was exhausted. My body ached. I hadn’t enjoyed a meal in years because of chemo. So, at 21, I decided to stop the drugs. I came to a decision, if cancer is going to finish me off I want it to be on my terms: not in hospital, not in quarantine, but living a normal life.
When you start thinking about death, you start thinking about God. I started rethinking my faith and went on a spiritual journey as well, I became a baptised Sikh. My faith helped me make the decision to have the chemo.
I was told my chance of having children was nil, because of the medication I’d taken, namely the breast cancer drug tamoxifen. So I thought marriage wasn’t for me. I’m from an Asian family and Asian men would not even look at a woman who - forget not having children - who has terminal cancer.
But then I met my now-husband, it was a semi-arranged marriage. He knew I had cancer and there was a chance I couldn’t have children - and within a month of getting married I was pregnant. In a kind of weird full circle, I found out in Birmingham Children’s Hospital, I’d recently started working there and took a test in the toilet.
It wasn’t an easy pregnancy, I was in a lot of pain and discomfort. When I got to 30 weeks, I had a lump over my baby bump. I thought it was a tumour and my pain was unbearable. I kept returning to the doctor and midwife with my concerns, and eventually went to A&E, where I was eventually taken seriously. I had an MRI scan, and there is a massive tumour on my liver, and they then took 90% of it out. The speed with which it grew was linked it to the pregnancy. The next day, I’m 33 and a half weeks and my son was delivered by C-Section and he weighed 3lbs 12oz.
For the first three weeks, I was separate to my baby. He was kept in the hospital and I was transferred to Wolverhampton. I was told I’d go into liver failure and that I should get my affairs in order. So I had a baby and a death sentence, at 27. At that point I went into post-natal depression, I went into despair.
I had an operation around eight months after the baby was born - the cancer had stopped spreading after my son was born, which shows there must have been a link between pregnancy hormones and the liver cancer.
I was desperate for a second baby, I didn’t want my son to be an only child. So in 2015, I had another baby. I had a textbook pregnancy this time, with no complications, but I also insisted on taking precautions this time. I had my oncologist refer me, I had regular MRI scans. I also had my faith, I just knew I would have a second baby. I prepared mentally and spiritually for it, I meditated a lot.
I still have terminal cancer, it just hasn’t killed me yet and no one for the life of me knows why. My husband says I’ve had a life of cancer and guess it’s taught me a lot.
Practically I have learned to always follow your instincts, if somethings feels wrong, go with it, walk away from a situation if you need to, pursue answers until you get them. I have very honest conversations with my eldest son about body parts and looking after yourself, very early on I will talk to them about testicular cancer and to be on the lookout from things that are not meant to be there, there is no shame in getting yourself checked out by a doctor or showing your private bits to a nurse! I want my kids to be comfortable with their bodies and take good care of themselves, that means removing any shame or fear in getting looked at if something seems off.
Life has taught me, that the human mind has such a being coping capacity when it comes to dealing with life and the challenges it brings. The biggest lesson I have learned is strength is not necessarily coping with everything “well”, it’s working your way back from the dark pages life takes you, to look at the bigger picture and nursing yourself back to a mentality stable space. This can be via many avenues, for me, sometimes it was counselling, having a good cry, writing thing down in a diary, talking to a friend or sometimes just being alone and meditating. My eldest has autism and ADHD and everyday we work through different techniques to help him find his ‘calming space’. Had I not had the experiences that I did, I would have found helping my son managing his bad days extremely difficult.
I want to teach others, particularly those in the Asian community, to be more open. I am shocked but not really surprised that the way Asians in particular handle having conversations around health. Sexual health, mental health, cancer, AIDS/HIV are all considered quite taboo subjects and conversations around these subjects, I have found, are seldom encouraged. If I could share one thing it would be this: Talk about your health, especially if your are worried about something. Do you notice a lump on your breast? Swollen testicles? Blood in your stool/urine? Don’t ignore it, get it checked out, your health is nothing to be ashamed or embarrassed about.
As told to Brogan Driscoll
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