IT was one year ago today that Katherine Sinfield heard the life-altering words: “You have leukaemia.”
As the 33-year-old continues to recover from a stem cell transplant and cherishes the news that she is now in remission, she looks back on what she describes as “12 months of hell”.
Katherine, of Balfour Street, Burton, said: “I had been suffering with extremely bad headaches for a while, coupled with chronic fatigue and painful stomach cramps, but it was always put down to the fact that I was a busy teacher working long hours and was thought to be suffering from irritable bowel syndrome.
“A couple of weeks before my diagnosis I started to suffer with bad cramp in my legs and we had to abort a day trip to Skegness after I struggled to walk more than 10 yards along the sea front.
“However, I continued to go to work the following week, although driving was now becoming a problem as I struggled to press the pedals without experiencing agonising pain. We knew that I needed to see a doctor as my leg was starting to swell, but we avoided visiting A&E over the weekend because I didn’t want to be labelled a time-waster along with the typical weekend drunks and pub brawlers.
“So off we went bright and early on the Monday morning to an empty A&E department at Queen’s Hospital in Burton.
“I was waiting in the assessment area having just had an ECG on my heart when a consultant, along with a nurse, broke the news that I had leukaemia – chronic myeloid leukaemia (CML) to be precise.
“I haven’t revealed this before, but the reality is that if I hadn’t have walked into A&E on Monday, April 15, 2013, I would probably have been dead within a month as the disease was so advanced.
“My CML was starting to mutate into acute myeloid leukaemia (AML).”
After 11 days at Queen’s, things looked as though they had turned a corner as Katherine was placed on the wonder drug Imatinib (Glivec), which keeps white blood cells under control and makes the condition manageable.
Some people can remain on Imatinib for years and can resume their normal day-to-day life.
This was the case for Katherine until mid-June, when her cell count started to rise again – her figures were jumping upwards by the dozen as each day passed and, by June 19, she was admitted back to hospital.
The next few months were spent undergoing intensive chemotherapy at one of the world’s ‘centres of excellence’ for leukaemia – the Queen Elizabeth Hospital in Birmingham. This culminated in a stem cell transplant in late October, which had been sourced by the charity Anthony Nolan to a suitable female donor in Germany.
Katherine said: “Since April 15 last year, I have spent 105 days in hospital undergoing some of the most demanding treatments you can face. I’ve had eight painful bone marrow biopsies, half a dozen CT scans, an MRI scan, a couple of ECGs, a bronchoscopy, a liver biopsy, dozens of X-rays, litres and litres of chemotherapy, four days of total body irradiation and close to 20 blood and platelet transfusions.
“I’m now in remission but there isn’t a magic switch which turns everything back to normal.
“Life is still tough – I have very low immunity, making me prone to anything and everything. I have low energy levels, I suffer with nausea, dry skin, occasional cramps and I’m very sensitive to the sun. I can’t eat anything containing grapefruit or Seville oranges and the occasional meal out has to be vetted to make sure the venue has a five-star hygiene rating.
“I can venture to the supermarket with assistance, but this has to be at ridiculous times to avoid the crowds. I’m still taking a handful of tablets each day, which in turn have their own side-effects.
“Going abroad is also out of the question until maybe next year and I still have to visit Birmingham most weeks for either routine clinic appointments or various tests.
“Being in remission doesn’t mean I am back to normal – it is just the start of a very long road to health.”
THE WIDER PICTURE
Katherine’s husband Stephen has been by her side every step of the way through her treatment – taking almost 11 months off work.
Speaking about the impact leukaemia has had on their lives, he said: “When Katherine was diagnosed, our lives changed completely. Dealing with the illness is hard enough, but alongside this are the mundane day-to-day problems which come with long-term illness.
“We went from two full-time wages down to surviving on just half of one wage, as long-term absence from work comes at a huge financial sacrifice. This came at a time when changes to the benefits system made claiming anything long-winded and almost impossible. Yet at the same time our costs continued to rise, with me making 70-mile round-trips to Birmingham each day.
“The bills do not stop arriving just because your wife has leukaemia. Not only do you have the stress and worry of Katherine’s illness, but you have endless letters, forms and telephone calls to make as you fight to keep your heads above water and you try to convince numerous agencies that your wife is fighting a life-threatening illness – not a sprained ankle.
“I’m now back at work, but the financial implications of Katherine’s illness will be felt for years to come.
“For example, we can no longer buy an off-the-shelf insurance policy – we now have to venture down the ‘pre-existing medical condition’ road, which invariably quadruples the price. There’s far more to an illness than just the science behind the disease, and all too often I think people fail to notice the bigger picture.
“I now see things in a very different light. This was a wake-up call for us both.”
THE CHARITY CHAMPION
SINCE Katherine’s diagnosis on April 15, 2013:
• She has spent 11 days as a patient at Queen’s Hospital in Burton and 94 days at the Queen Elizabeth Hospital in Birmingham.
• Add to this total her clinic appointments and test dates and she will have spent around 200 days of the year at one hospital or another.
• During this time she has received dozens of litres of blood and platelets as part of her care and treatment. Because of this need for blood Katherine spearheaded the Mail’s ‘Take Five Minutes’ campaign, which has boosted potential blood and bone marrow donor numbers in the area by 15 per cent.
• She has raised hundreds of pounds for the charities Cure Leukaemia, Anthony Nolan and the Queen Elizabeth Hospital Birmingham Charity.
• She instigated a used stamp appeal which has seen more than 40kg of franked stamps donated to the charity Leukaemia CARE UK. Katherine’s stamp appeal has been so successful the charity is hoping to replicate it in other newspapers across the country.
• She co-organised the BONE-shaker MARROW-thon, a charity motorcycle ride between Birmingham and Burton, which is set to become an annual event and grow in numbers.
• She continues to work closely with the charity Anthony Nolan and Burton MP Andrew Griffiths on the ‘Roadmap for Recovery’ campaign – a campaign which should soon be heard within the walls of Westminster as equal care for all post-transplant patients is debated.