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Three incredibly dull weeks

The next three weeks were super dooper boring and highly uneventful. Every Tuesday, Mum and I would wake up at around 5am. Mum would eat breakfast, but I would have to fast and could only drink water up until 6am. Then we would drive to Melbourne so I could have a lumbar puncture with Ondanetron, an anti-nausea drug, so that I wouldn’t feel as horrible as I did after my first procedure, and sometimes a bone marrow aspirate.

After about half an hour in the recovery section, Mum and I would go up to the sixth floor, wait around for ages to see John and be told what kind of chemo I would be having in day oncology that afternoon. We’d go downstairs for some lunch, then back upstairs to day oncology for more chemo before we were finally able to trek home. Highly exciting stuff, I say. Over these weeks, I made it to school a grand total of three times. Had a meeting with Hutchy (the senior school coordinator, Mr Hutchinson), and attempted to go to school on the last day of term, but I was so unstable walking up the five steps to the front office that Mum said maybe I shouldn’t go after all. That was a good day; we went and saw Up instead. Such a cute (and funny) movie!

* * *

Freedom (just for a little bit, anyway)

Holidays have never been a particularly busy time for me. Usually they mean I work two or three days at my crappy job at the local McDonald’s, but I had put that on hold until I was in a better state and could make it in to work for a short shift here and there. But that would be a while away. In all truthfulness, I really had no intention of ever going back there, but for some reason Mum said I shouldn’t resign, I should just not work for quite an extended period of time.

Anyway, these holidays were to be quite different. On the Monday, I had a blood test. That was all the exciting events of that day. The next day was another exciting one — off to the hospital for theatre, doctor’s appointment and then chemo. You know — the usual. Today was not just an average day, however, as Yome collapsed, I think, and Ellie drove her to Melbourne so she could be admitted to the Alfred Hospital.

After our thrilling day at the Children’s, Mum and I stayed over at Ronnie Mac (Ronald McDonald House), as we had appointments at the hospital the next day. Mum had organised to meet with the financial assistant, and with good old Centrelink, and I was supposed to be doing some sort of intelligence test with the Murdoch Institute in the hospital. It was surprisingly fun, and it proved what I have always known — I am truly terrible at maths. Worse things could happen.

* * *

Thursday was an uneventful day in Leongatha. Yome was still in hospital, but after a lumbar puncture in the morning to relieve the pressure in her spine, she would be fine. Mum drove down to spend the day with her, and returned home at around 6pm.

* * *

The next day was an interesting one. Nothing really happened until Mum went to Traralgon for a nerve test at 3pm. She thought she had pinched a nerve or something in her elbow, so Larry wanted her to have nerve tests done.

When you are diagnosed with leukaemia there are a few diseases you are warned to avoid at all costs, because your immune system is compromised. Those diseases are measles, mumps and chickenpox. At the hospital, we were told that if anyone we knew or had spent time around had been diagnosed with those illnesses, I must come in for an injection within seventy-two hours of being exposed to the disease. To our amusement, Mum found out that afternoon that she had shingles. Shingles is a type of chickenpox. I had spent two weeks with my shingley mother, which is considerably longer than seventy-two hours. So, now that it was too late for me to be immunised, we just had to hope like hell that I didn’t get shingles from her (note: we need not have worried as shingles is not contagious).

* * *

From the first week at the Royal Children’s Hospital (RCH), we knew that Peta’s illness was aggressive. Because of her age and size, she was a high-risk patient. We had been told that her illness could be life-threatening, but that we could expect a cure. They were the final words from our doctor, John, the day we had our plan of attack laid out before us. We all focused on the positive: that Peta had a good prognosis. I relayed all of that information to family and friends and to Peta’s school principal, Michael Delaney, and vice principal, Jason Scott. Jason was online as we spoke, seeking information on ALL so he could give the students accurate information. An eighty-percent cure rate buoyed us all.

We were now six weeks into treatment and were no longer the new kids on the block at the hospital. Peta and I could walk into day oncology and have some idea of what the day would bring. Our routine involved having a blood test every Monday at Leongatha. Tuesdays meant an early morning drive to Melbourne for theatre, clinic and chemo, then maybe a late drive home. We also had our backup hospital, Latrobe Regional Hospital (LRH) at Traralgon, where Peta would have her emergency care and transfusions, and our GP at Foster. It was a busy schedule and we basically lived life in the car. LRH was designed to cut down on travelling; the only problem was that we had to wait for cross-matching, then for the blood products to arrive on the V/Line train, which was never quick. In reality, a transfusion at LRH was nearly always a two-day process. It would have been quicker to travel the two hours to Melbourne and back.

* * *

Three days of pain

Boy oh boy, what a painful (sort of) weekend. On the Sunday, my silly father came for a brief visit. He moved to Queensland some time ago for work, and announced that he and Mum were separated (this was news to Mum) sometime in June. He hadn’t come to see any of us since he helped us move to a new house in July. We were expecting him to act relatively meekly, as we thought he knew that not one of us actually liked him all that much anymore. We were greatly surprised and very ticked off by his unexpected attitude. Dad waltzed into the house, kissed Mum on the cheek, said ‘G’day, dear’ and acted as if nothing had ever happened. I could have snorted, truly. I just thought, ‘Who do you think you’re fooling, dude?’ but I said nothing, and he continued on with his deluded ‘happy family’ charade.

The next day I had made plans to finally catch up with my friend Emma, who I hadn’t seen in AGES. We were going to see (500) Days of Summer, which I was really looking forward to. Lunch was good, and the movie was truly awesome, but when I called home asking someone to come and pick me up, Dad was there. He immediately stuck his hand up a little too overexcitedly at the opportunity to spend about three minutes of ‘quality’ time with his youngest daughter. Gee, thanks, Dad. As soon as Mum told me he was coming, I groaned and said I did NOT want him to pick me up. I believe I then may (or may not) have made various non-threatening threats to Mum for allowing him to come and get me. I was not looking forward to the three very long minutes it would take to get home.

* * *

Peta survived the drive home, and indeed the rest of her father’s visit, although I wouldn’t say it was comfortable for her. Not so long ago we were a normal (although some might question that!), happy family who enjoyed each other’s company. Sadly, this was no longer the case. I cannot explain how or why things changed so dramaticaly for us. My focus was purely on Peta and her illness and treatment. Nothing else mattered.

Peta went to school when she could and tried to maintain some sort of normality. We had adjusted as best we could to life with cancer. We had very little time to think about anything — a cancer diagnosis does not allow time for that. You just put your trust in the people who know what they are doing. You have to believe that everything will be alright. The whole family embraced Peta’s illness with our typical humour. Peta was known to use the line, ‘I can’t do that, I have cancer,’ when asked to perform a simple household task. Her sister, Justine, soon extended that to, ‘I couldn’t possibly do that, my sister has cancer!’

Peta had always possessed a droll sense of humour and we laughed heartily when one day she recounted a conversation with a fellow student. It had been a warm day at school and a concerned classmate asked Peta how she was. Peta thought she could have considered her response a little better — she had simply replied, ‘Ohhh, I’m dying!’

We had learnt so much about ALL in the short time since Peta’s diagnosis. ALL is all about numbers. The numbers indicate how your body is: haemoglobin, platelets, neutrophils, these three things were the most important indicators. When you are on chemo, those things can change overnight. I made sure the car always had a full tank of petrol, as we never knew when we would have to grab a bag and go to Melbourne or to Traralgon. Emergency situations happened just like that. Every time we pulled in to the RCH car park, Peta turned her nose up at the smell of the city. She had always had a keen sense of smell and this was heightened by the chemo. Her reaction made me laugh every single time.

By now we were regular visitors to Ronald Mac House, a place we were very grateful for. Prior to Peta’s illness we had never supported McHappy Day, but that had changed for us now. I was so grateful for this facility. It became our home away from home; and while it wasn’t home, it wasn’t hospital either, which was important for Peta. Depending on whom I had spoken to in the office, we often had a downstairs room. That was so much better for Peta, as Vincristine gave her terrible knee and ankle pain. This told us that the drug was hitting the spot, as blood is produced in the marrow in your joints. Climbing stairs was far too difficult for Peta when her body was reacting as though she were in her veteran years.

We now understood the science of chemotherapy a little better, and knew that a large part of treatment was preparing the body for the hit of chemicals it was about to receive. Peta had a course of Prednisolone to help protect her organs from the effects of the chemo and she wore a big, round, rosy face as a result. Diabetes can be a side effect of steroid treatment as it makes you ravenously hungry but, thankfully, Peta was spared that complication. Six weeks into treatment, things were becoming more intense. The transfusions were more frequent, making neutropenia — a decreased number of neutrophils, which help protect the body against infection — more likely. This meant that infections were now more frequent, too.