Wednesday, 21 March 2012

one-third of the way there

Chemo number two went without a hitch. I sneaked a peak at my blood test results and swelled with pride at the sturdiness of my little red and white soldiers. My liver is happy and my kidneys are coping well.

The bad news is they decided to reduce my dose.

My little holiday in Emergency Admissions suggested to my team that my chemo dose was too high, and my sore spleen finally convinced them to spare me the Neulasta injection this time (spleen rupture is one of the rare side effects). So they took a cautious approach and only prescribed me 80% of my previous dose of FEC 100.

I'm not happy about this.

Other than the neutropenia, I coped well with my first chemo dose. I was certain that most of my discomfort was down to the injection and the cold I was fighting rather than the chemo itself. This cycle - I'm currently on day 6 - has been embarrassingly easy. Some very minor digestive niggles (enough to notice but nothing that would interrupt normal service), a touch of mild heartburn, an 'off' taste in my mouth and tiredness have been the extent of my suffering this time. On day 2, I spent the day in Plymouth enjoying St. Patrick's Day; on day 4, I spent five hours working on my allotment - slowly, yes, but surely working the earth and drinking in the spring sunshine.

I don't want an easy time of this. I want it to work. That's it. If I have to suffer, so be it. I don't want to be back in these shoes in two years' time because my dose was lowered. Dosage seems to be a little haphazard, based mostly on your height and weight. I understand they can do nothing more than play with the numbers, hoping for the best possible outcome. But this study scares me a little: it references another study that found when dosage was dropped to 80% the 'cure' rate dropped by as much as 50%!

My plan is to stay healthy for the rest of this cycle, then ask for my dose to be upped again.

C'mon, neutrophils...don't let me down.

Tuesday, 6 March 2012

neutropenic sepsis

I've just come home from a three-day stay in hospital.

The sore throat, cough, and general achy malaise caught up with me on Day 10.

I had been wrestling with a headache, too, from around Day 8. It was there when I woke up in the morning - something akin to a hangover headache - so I took a paracetamol. Just one. I was keen to get off all meds, to give my poor body a break, so I only took one. It seemed to work. But the headache was back that evening. And it was there on Day 9, morning an evening. Meanwhile, the sore throat was getting more unbearable and on Day 9, Friday, I noticed some tiny white patches on the back of my tongue - almost certainly the beginnings of oral thrush, a common chemo side effect. For that, I phoned my GP and requested a prescription for Nystatin oral anti-fungal drops and some anti-bacterial mouthwash. No problem. Picked it up on my way home from the school run.

Friday was another in a string of beautiful days, and when I arrived at school to pick up my eldest daughter I was feeling good. One of the parents from my daughter's class gifted me with a gorgeous bouquet of English cottage garden flowers and I collected our dinner - kindly made by another parent for us - from the Parents' Room. My heart was singing. I can do this. I can get through this. The sun is shining and people care about us and we will manage.

By the time I got home I was tired. That night I slept on the sofa, having taken another paracetamol at midnight to try to soothe my aching head and raging throat. I didn't sleep well.

In the morning I could hardly raise my head from the cushion, it hurt so much. Rob brought me another paracetamol and some water. A few minutes later I got up but soon returned to the sofa; I really wasn't feeling very good.

I Googled strep throat. Symptoms: sore throat, fever, headache.... I had all three. I asked Rob to phone the duty doctor so we could take advice. Today was Day 10 - right in the middle of my low-immunity period - and I was starting to feel concerned about how bad I was feeling. The doctor on call asked me to come in to the community hospital for assessment.

I had already packed and stashed an overnight bag in the boot of my car. I had read on a 'Surviving Chemo' tips page that you should pack a bag in advance in case of an emergency admission. The 20-minute journey to the doctor's wasn't pleasant. The three-year-old had a very rare meltdown and literally screamed the whole way. I cried in pain.

We waited over an hour. That didn't seem right. I had to lie down on the waiting area chairs. My whole body was hurting; my head felt as though it might crack open and spill its contents across the polished floor. Finally I was called.

The very sympathetic duty doctor carefully took my history and examined me. I had a raised temp, but it was only 37.2. I had an inflamed throat, but it didn't look infected. I had a cough that was wearing me out, but my lungs sounded clear. The glands in my throat were swollen, but only just. It didn't seem serious.

So why have I not got the energy to even sit upright?

She phoned the oncology unit, who asked me to come in via A&E. Just to be sure.

We made the 15-minute journey, things a bit calmer in the backseat. I felt awful. Really awful. My head. Hurt. So. Much.

We arrived at 1 p.m. Another 20-minute wait in A&E. My paranoia about my low immunity found me sitting in the children's play area - the only part of the waiting area with no sick people in it. I was called through. A youngish Indian lady - I don't know if she was a nurse or a junior doctor - led me to a side room and asked me to lay on a trolley. The plan was to start intraveneous antibiotics, even without a diagnosis. I was presenting with mild symptoms of neutropenic sepsis - infection with a low white blood cell count - on Day 10 of my chemotherapy cycle. Protocol - derived from the finding that mortality rates dropped from 60% to 25% when appropriate IV antibiotic therapy was started within 60 minutes - dictated that I was treated immediately.

I lay on the trolley, moaning and miserable. My three little girls watched, each with a varying level of interest. The seven-year-old knew this was serious and scary and watched with wide, shining eyes. The five-year-old never stopped smiling in her joyful way, and often interrupted her play to hold my hand and will me to feel better. The three-year-old cheerfully planted kisses on my fingers through the side-rails of the trolley. We have been honest with them from the start, and there had been no time to find someone else to look after them. This is our life now.

Once several vials of blood had been taken and the antibiotics were going in my cannulated right arm, more blood was drawn from the PICC line in my left arm. Blood from my body and blood from my PICC line both had to be tested to try to find the source of infection. Finally, I was given some IV pain relief for the intense headache and body aches.

I was being admitted. A bed in a private side room with en-suite facilities was found in the Emergency Admissions I later overheard a nurse explain to her colleague, I "wasn't infectious...", I was "neutropenic". Basically, I had no immunity. I needed to be protected from germs.

It turns out my neutrophil (white cell) count was .3. I was told by the consultant that normal, healthy adults' neutrophil count is usually between 2.5 to 7.0. So yeah. This was serious.

I was on IV antibiotics and litres and litres of IV fluid for three days. I've been discharged with another 5 days' worth of oral ABs.

I was in good spirits during my stay in hospital. Since I got home I've been feeling low - I think it's hit me how serious this was. And that I'm no longer a healthy person.