Chemotherapy - Alicia: My Battle with Wegener's Disease book excerpt

Here is another instalment in my series of extracts from my book, Alicia: My Battle with Wegener's Disease. This time the chapter is all about Alicia's chemotherapy treatment.

We are like butterflies who flutter for a day and think it is forever.
— Carl Sagan, Astronomer, astrophysicist, cosmologist, author

The doctors began to talk about chemotherapy as the next step. As Wegener’s is an auto-immune disease, the body’s own white blood cells begin to recognise a normal part of the body as an enemy and attack it. In the case of Wegener’s Disease it’s the small blood vessels that are singled out for attack. The doctors hoped that chemotherapy would wipe out Alicia’s white blood cells and therefore stop her body from attacking itself.

This would be a drastic undertaking and might have some serious consequences. The foremost in the doctor’s minds was Alicia’s ability to have children. The doctors arranged for Alicia to go to the Centre for Life, a pioneering life sciences centre, which fortunately was in Newcastle. They wanted Alicia to talk about her options.

Alicia knew that she wanted children but sometime off in the future. It was something she didn’t want to have to plan for at this stage of her life. It just wasn’t a priority for her, but the doctors made it a priority and forced her to think about it.

Alicia met with Dr Stewart in the Young Peoples Clinic to discuss her fertility issues. Dr Stewart talked about theoretical possibilities for ovarian tissue, immature and mature egg storage. In principal the best option for restoring Alicia’s fertility would be to consider a cycle of IVF treatment, egg collection, IVF and embryo storage. However, Alicia was severely limited for options because of the unplanned cyclophosphamide. Even without the cyclophosphamide, the high doses of steroids and Alicia’s general ill health meant that the chance of a satisfactory cycle resulting in embryos worthwhile storing, and therefore giving a reasonable chance of successful subsequent treatment was small. Alicia could take no action now. The priority was to get over the acute phase of the Wegener’s Disease and then come back to see Dr Stewart to see what her options were. 

Alicia’s symptoms had worsened to such a degree that the doctors couldn’t wait. They had reached the end of the line with the standard drugs. They had to give her the chemotherapy now or she might die.

Alicia: My Battle with Wegener's Disease - chemotherapy

Alicia would take a cocktail of anti sickness drugs before she had the chemotherapy as severe nausea is one of the most prominent side effects. She would normally be given it on a Friday. Alicia was given the cyclophosphamide intravenously, through a line in her hand. She would sit in the hospital room all day while it slowly crept into her veins. Claire and Christine were the nurses assigned to look after Alicia while she was undergoing chemotherapy.

Alicia would be sick continuously all day Saturday and Sunday. She would have to have a bucket next to her at all times, to catch her vomit. Alicia didn’t eat at all. She was still feeling the pain from the Wegener’s but now her whole body was hurting from the chemotherapy too. The pain was so overwhelming that Alicia would fall asleep. When she woke she would take more anti sickness drugs, as well as her painkillers, vomit and then pass out again. This cycle repeated itself again and again over the whole weekend. 

Incredibly, Alicia was at home almost every time she had her chemotherapy treatment. Christine would have to do everything for her daughter. She would get her up from bed, dress her, take her to the toilet and wash her hair. 

By the time Monday arrived, Alicia was starting to come around. 

Once, Alicia was so ill that she had to have the treatment in hospital. The doctors put a line directly into her stomach which had a box attached that had a plunger inside. Over time the box would automatically dispense anti sickness drugs directly into Alicia’s stomach. Tablets taken orally just weren’t getting into her system quickly enough.

Alicia’s direct memories of this time are sketchy, as she was so ill and taking so many drugs. She can only remember flashes, or tiny seemingly inconsequential memories.

Alicia remembers someone eating a bag of crisps nearby and the noise was magnified to the degree that Alicia felt that her head might explode. Similarly another patient was watching television in bed and the volume was so loud that Alicia wanted to get up and yank the plug out of the wall. A visitor sat by Alicia’s bed one day and rustled a carrier bag. Alicia wanted to throttle them with it! 

The pain meant that Alicia was on edge all the time. 

Alicia’s family visited her when she was in hospital but she has scant memories of this. Most of the time she was unconscious and unable to speak. 

The chemotherapy did not relieve any of Alicia’s Wegener’s symptoms. Instead, she had to cope with both the pain of the Wegener’s and the sickness caused by the cyclophosphamide.

If you liked what you read and want to find out more, please check out my book on Amazon.