Roberta’s story, three years on from her bone marrow transplant

Roberta underwent a total of ten lumbar punctures: there were supposed to be 12, but the results seemed encouraging. Yet each one was a gruelling experience: a small amount of cerebrospinal fluid was withdrawn from her lower back. Painful and uncomfortable. On one occasion, they had to try six times before they managed to collect the fluid properly so they could then inject the chemotherapy.

The prospect of a bone marrow transplant seemed the only way to beat leukaemia. From there came the search for a donor: his brother initially appeared to be a match, but shortly afterwards further tests yielded a different result. His children also proved to be incompatible. This led to the search for a donor in the databases.

One day, the doctors gave her a date: 3 January. It was almost a cruel joke: Roberta’s birthday is on the 4th – the very day she got married, and she would have preferred that date for such an important event. But the 3rd couldn’t be changed: a transplant has rules that you simply cannot alter.

Being admitted to an oncology ward is no easy matter. Everyone has their own story, their own suffering. But inevitably, you find yourself comparing experiences – comparing pain, treatments and side effects. Then there are the children. And then there are those who don’t make it.

The operation went well: Roberta remembers that day for the almost garlic-like smell emanating from the cool bags, which had arrived frozen by air. But she also remembers the pain and the hallucinations. “I saw rats running up the walls.” Inevitably, there was morphine. There were a few days of fever, just a few, to be honest. I fainted in the bathroom, and the nurse came to my aid. “All the staff who looked after me were absolutely lovely.” To my surprise, on 18 January, the doctor came into my room with the test results in his hand and said: ‘What if we sent you home tomorrow?’ ‘Really?’ I replied. I knew that, on average, you stay in hospital for a month after the operation, so I couldn’t even imagine being able to leave any sooner. My neighbour in the next bed was also wide-eyed: she’d been there for a month and a half…’

Recovery is not easy, and the first hundred days require great care due to the risk of rejection following a transplant of this kind. The alarm bells ring in the event of dysentery: it is a precursor to the worst possible outcome one could fear. Roberta is holding on, scrupulously following all the instructions: wearing a face mask even at home to avoid any infection, keeping her distance even from family members, absolutely no raw food, and being careful in enclosed spaces. And then there’s the change in blood group: Roberta has gone from O positive to B positive.

‘I never suffered from nausea or vomiting as a result of the chemo,’ she says. ‘At one point I started losing my hair; I asked for it to be shaved off. I switched to a wig, and wore a turban at home. But that didn’t matter to me all that much: I weighed less than 50 kilos, and I had no muscle in my legs. Meanwhile, all around me, life went on. My children didn’t talk about my illness to anyone: ‘It’s a private matter,’ my son explained to me once. My daughter, on the other hand, cried a couple of times.”

‘I lead a normal life now; I could, but I no longer eat raw food. I wash fruit and vegetables thoroughly with bicarbonate of soda, and I avoid rare meat. Fortunately, I was able to eat the pizza straight away, given the temperature at which it’s cooked. I’m well today – in fact, perhaps even better than before. And I’m getting ready to celebrate the fourth anniversary of my transplant. Four years – and the six months leading up to it – during which I never gave up. And as I told my friends at ADMO, if I’m here today, I owe it to that act: the bone marrow donation.”