Today's Notebook is a retrospective from 2014 as a contribution to Blood Cancer Awareness Month. Every 20 minutes, someone in the UK is diagnosed with blood cancer. Spotting the symptoms of any blood cancer is essential, because, of course, early detection saves lives. Today I'm joining others to share stories in a concerted effort to raise awareness of the signs and symptoms of leukaemia.
My symptom story is similar to many: leukaemia is a silent, fickle disease, and far too many sufferers, and their GPs, do not spot it until patients become emergency admissions to hospital, often too late to be treated effectively. Spotting symptoms matter, especially during a pandemic, when people are reluctant to visit their GP, and symptoms are even more likely to be missed.
Our cousins from Canada were visiting so I was more active than usual. On a particularly lovely day, we had fun messing about at the local tennis club. Suddenly I felt woozy and nauseous, and had to lie down on the court. It was terribly embarrassing. As someone who has low blood pressure, I put it down to that.
Since April, I have felt exhausted despite not partaking in much physical activity. Increasingly spending more and more time in bed during the day. It must be stress, I thought. That would account for the disturbed sleep and night sweats. An extremely difficult time at work had now passed, but it had left me worn out. Or so I thought. I'm also finding some bruising in usual places. I'm getting clumsy, I thought. One morning, I pulled on a pair of jeans and, inexplicably, was gasping for breath after this mundane activity. I remember telling my husband how odd that was. I must take more exercise. But the more exercise I forced my body to endure, the worse it got.
My husband put me in a taxi to Central Station where I'd take the train to Wemyss Bay and a ferry to Rothesay. He asked if I'd gone for the mammogram scheduled a few days earlier while he was at work. I confessed I hadn't attended as I had struggled to get out of bed that morning. Right, he responded, you need to go to the doctor as soon as you get back to Glasgow.
Trudging down the ghastly ramp at Rothesay pier, my mum was there to meet me. Eileen, she said, you look ill – your face is grey. I began to cry and told her how awful I was feeling, and that it must be stress. That evening, we went for a meal in the Black Bull. I left early with my niece who accompanied me on the walk up the famous Serpentine: a winding steep hill to mum's house. Usually not a problem, I had to keep stopping every few yards to catch my breath.
The next morning my husband arrived, and we went downtown with our daughter and niece to buy their pencils, pencil cases and other paraphernalia to start school the following week. I felt so weak, I could hardly keep up and had to sit down in every shop. One shop had nowhere to sit, so I sat outside – embarrassed again – on the pavement. 'That's enough, we need to get you home', insisted my husband. Winding slowly up the Serpentine, I hung on to him, but at the top of the hill, my legs buckled completely, and I collapsed while throwing up. A man in a tractor (of all things) stopped to help us. I just wanted to crawl back to mum's, but neither man would agree. Steve ran to the house to get mum and the car to take me to the local hospital.
Routine checks were taken. The nurse said I looked anaemic. Aha, that's what it is, I thought. Bloods were taken. A doctor arrived looking more worried than anaemia warranted. 'I want you to go back to your mum's, but do not leave the island', he said. He had sent my bloods to the mainland.
The following day, I felt a bit better as I had not moved at all.
That evening, a Sunday evening, the doctor from the hospital called at around 7pm. The hospital did not have my details as I lived in Glasgow, so they had spent some hours trying to find me. Luckily, one of the hospital staff recognised my mum. You need to return to the hospital, he said. I said I'd be there first thing in the morning. 'No,' said the doctor, 'you must come immediately, we have a bed ready. Tomorrow morning, you will be taken by ambulance to the Southern General as an emergency admission'. What? For anaemia? I had no idea what was wrong but for the first time, felt rather anxious.
Ward 24, Southern General
Nurses bustled around my bed. They were so gentle, yet strong and determined. Still, I didn't know what was going on, nor even realised that I was on a haematology ward. My consultant arrived, the lovely Dr Macdonald, his face etched with concern. He stood opposite my husband. 'I'm afraid the news isn't good,' said Dr Macdonald, 'you have leukaemia'. I stared at my husband and remember being curious about the little bubbles of perspiration breaking out on his forehead.
I was diagnosed with Acute Lymphoblastic Leukaemia, a secondary cancer emerging from chemotherapy treatment for breast cancer. It was so far advanced, much-needed blood transfusions could not be infused. My white cell count was sky high, and a very high percentage of my blood cells were 'blast' cells. At some point, Dr Macdonald warned me of the perilous state my body was in, and the reality of my prognosis was serious indeed. In brute terms, I was expected to die.
For the next few days, I lay in that bed organising things in preparation of my untimely death. The brain is a strange beast. I was remarkably calm and focused: a state of tranquillity largely induced by wonderful nurses on Ward 24, who never left my side.
I hadn't seen Dr Macdonald smile, but he bounded into my room a few days after my diagnosis, with a grin. 'You've done it,' he exclaimed. 'Your body has brought down your white cell count, all on its own! We can now treat you.' Transfusions, God knows how many, began. I was coughing blood, blood dripped from my nose, and my body, especially my cannula-pierced hands and arms, were covered in huge, ugly bruises.
But I was lucky. Despite months of gruelling treatment, repeated infections and painful interventions, my wee sister Julie was found to be an exact match and was able to donate her stem cells. My date for the transplant was Christmas Eve in 2014. Julie, my doctors and nurses from the haematology and the bone marrow teams – the latter sourcing a 'compassionate dose' of new immunotherapy following a relapse in 2015 – saved my life. And I should not forget to mention the alert doctor in Rothesay.
If my story has had any impact at all, I hope it is two-fold. Firstly, be aware of symptoms that you may, like me, mistake for stress or exhaustion. Early diagnosis saves lives. See www.spotleukaemia.org.uk
for symptoms. Secondly, again, I was lucky. Not all blood cancer patients have siblings with a match, so please consider (especially if you are a reader in your 20s) to register as a blood stem cell donor at www.dkms.org.uk
. Thank you.