October 2000
"Your bone marrow is abnormal," the consultant tells me. "I'm afraid it's very abnormal." I am 22, have always thought of myself as fit and healthy, don't smoke, go to the gym (occasionally) and I am being told that I have leukaemia.
Suddenly, all the niggling little symptoms that haven't been worth going to my doctor about over the past few months - swollen glands, fever, exhaustion, bruises, aches and pains, breathlessness - add up to a life-threatening illness.
I have acute lymphoblastic leukaemia, which is the kind little kids get, and my odds are quite good actually: I have a three in four chance of survival. The problem is that it might recur.
The next day I am sent to the John Radcliffe hospital in Oxford, the town where I went to university. They insert plastic tubes - known as a Hickman line - into my chest, so that drugs can be fed directly into my veins. These are to be permanent and I have to be careful to keep them clean.
The first round of chemotherapy, to kill off my sick blood cells, starts the next day. The nurse appears with a large bag of orange liquid that looked like Tizer, I am hooked up to the drip and away it goes - I can't feel a thing.
The shock of all this is somehow dulled by the routine. Being woken up early for blood tests, taking 10 or so tablets, breakfast, lunch, more tablets - day after day, after day. I get bored. The next time my doctor comes in I ask when I can go home, and she takes my boredom as a good sign. I am free to go, she says, but have to come back to the day clinic each week for treatment.
November
On the morning I leave, my nurse arrives with the NHS equivalent of the party bag - a month's supply of about 10 different kinds of tablets to take at varying times of the day, a thermometer to take my temperature each day (if it goes above 37.5 I am to call the hospital immediately), dressings, swabs and various bottles of pink liquid with which to clean my tubes. I am told only to eat "clean" food - no takeaways, no leftovers, nothing from the deli; no raw fruit or veg.
In the last week of this four-week cycle of treatment, I have to have an injection daily, which a district nurse comes to give me. The drugs have to be kept in the fridge - I'm sure my flatmates find it odd rummaging around my medical supplies to find the butter. But at the end of the four weeks, I am in complete remission - when they look at my blood under a microscope, there are no dodgy cells.
December
The second phase of chemotherapy means new drugs - this time four days a week, including one which has to be injected into the spine - a toe-curling experience at best. It's exhausting - the drugs stop my bone marrow from producing red blood cells as well as white, which leaves me anaemic. I sleep for most of the time I'm not having treatment.
I'm not even sure why I need more treatment when I'm in remission but they have found over the years that if you only give a few doses, the bone marrow may go back to its nasty ways and start making dodgy blood cells again.
Christmas is odd - it's hard to be cheery and I can't eat nuts, dates or cold turkey. New Year is even stranger - a sense of not much to look forward to.
January 2001
January marks a turning point. I have to spend two periods of five days having high-dosage drugs in hospital. This is really tedious and confirms my general loathing of the place. I also have to make an important decision - whether to opt for another 18 months of chemotherapy, or to have a stem cell transplant.
Stem cells are baby cells that can become anything. Your bone marrow makes them, then they go whizzing round to wherever you need new cells. For the transplant, they make sure you are in remission, then take the stem cells from your blood. They freeze them, then with a combination of chemo and radiation, kill off your bone marrow - all of it. Then they give you back your healthy stem cells, which whizz round into your defunct marrow and start producing proper bone marrow cells again.
Apparently, giving several courses of chemo and then a transplant for good luck helps the bone marrow forget its lemming-like instincts. Or so I hope. Rather like cat-litter trays I guess - if you put it on the tray often enough, eventually the cat learns where to poo. "It's just magic," my doctor tells me.
This is still a new technique, and highly traumatic for the body, but I say yes because despite the weeks in hospital and the dangers involved, not only will it be a quicker, one-hit treatment, but only by killing off my bone marrow once and for all will I feel like the horrible disease has gone.
I'm earmarked for a transplant at the beginning of March, and suddenly there's lots to do. I have to have a barrage of tests - lung capacity, heart scans, HIV tests etc, to ensure that I'm fit enough to go through it.
Then my cells are harvested. I'm given injections to make the bone marrow overproduce stem cells and attached to a machine to remove them. This involves a needle in both arms, the blood going out of one, round the centrifuge and back into the other. I have to sit still for three hours at a time - I mustn't move my arms, not even to scratch my nose.
Unfortunately this process does not collect enough cells to make my marrow regenerate and so I have to have the rest removed directly from the bones. I have a general anaesthetic and they puncture my back several times in order to suck it out. Coming round, I feel worse than I've felt before or since.
March
The transplant begins with two days of chemotherapy - the same drug as before but in huge doses. It's weird: it actually makes you feel quite high when it's going in, a bit spaced out and giggly. By midnight, though, I'm throwing up and can't wait for the last dose.
This is followed by five days of total body irradiation. I travel to a different hospital each day, lie in a Perspex box in my underwear with electrodes attached to me, while a large x-ray-like machine beeps loudly for about half an hour. It's the scientific equivalent of the Chernobyl reactor and apparently it's going to help me.
Given that the treatment may also cause cancer, vital organ damage, cataracts and induce the menopause it seems like an odd choice, but I can only place my trust in science.
As soon as the last dose has been given I go back to my room to await The Transplant. As it happens, this is a bit of a let-down after so much build up - it's like a blood transfusion except that my cells are yellowish and reek of canned sweetcorn - it's the fluid in which they are preserved and of which I start to smell.
Then it's over. I just have to spend three weeks waiting for my cells to grow back. That is when the the thing I have dreaded finally happens - my hair falls out. I was lucky that only a bit fell out during chemotherapy - it looked normal. Now I'm completely bald.
My hair soon becomes the least of my worries. Just as my cells are starting to grow back I choke on a pear drop and start coughing up blood - I have a chest infection and spend several days on oxygen. I also have a couple of weeks of anti-fungal drugs and my cells just stop growing. I'm fed up with the same four walls and just want to go home.
The aftermath
They let me go home in time for Easter but eating chocolate (or anything) is difficult, as the radiation has stopped my saliva glands working. I'm anaemic, have no immune system and my blood doesn't clot properly because I have no platelets.
In the end my cells regenerate very slowly meaning that I am dependent on transfusions of blood and platelets until the beginning of September when I finally return to work.
Although I'm still in remission - and if I stay in remission for five years, I'll be judged "cured" - my blood test results are still not normal by any standards and there are new issues to deal with. Due to the numerous blood transfusions, I have extremely high levels of iron in my blood, which could cause organ damage over prolonged periods, so I have to have pints of blood taken from me to lower the levels.
My hair has grown back curly (apparently quite common) and is still very short, and I am getting bad cramps in my feet. It's likely that the chemo and months of inactivity have damaged the muscles.I also have a bone scan, which reveals that the density in my lumbar spine is very low - I've always had a bad back, but the steroids will have made this worse. My doctor suggests HRT.
Most importantly though I have to learn to live normally again. It's hard not to run to the doctor every time I feel a twinge or an ache, fearing the worst, and it's hard not to have the reassurance of weekly blood tests. Just as I've learned to live with being ill, I have to live with being healthy.
