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

I have been posting a series of excerpts from my book, Alicia: My Battle with Wegener's Disease, over the past week or so. Today, I have a chapter entitled Rock Bottom.

God gave me Parkinson’s to show me I’m just a man like everyone else. To show me I’ve got human frailties like everyone else because that’s all I am – a man. If I die I have no regrets. I’ve tried to live a good life and do the right thing. But I’m not scared to die. Because I’ve made my peace.
— Muhammad Ali, Boxer


The need for Alicia to undergo her tracheostomy underlined the fact that her current treatment simply wasn’t working. Dr Higgins had said that there was no plan B. 

Alicia was breathing from a tube in her neck. She was still in pain. Alicia was massively overweight from the drugs. Her skin was horrendously scarred. She was taking high doses of steroids, methotrexate and the chemotherapy drug cyclophosphamide, and the Wegener’s Granulomatosis still wasn’t under control.

Alicia’s relationship with Kev was pushed to breaking point. She was living between the hospital and her parents house. He was working full time. Alicia was trying to rebuild her working life but it was virtually impossible. Stephen was working normal hours but Christine was on compassionate leave. Alicia was relying heavily upon her parents. 

Meanwhile Christine was trying to stay strong but every avenue of treatment had been exhausted and none of them had worked. Christine was trying to remain positive while grappling with the fact that her daughter had a tracheostomy, the same procedure that her own mother, Audrey, had undergone before she died. She was facing up to the fact that she might lose her daughter.

Alicia: My Battle with Wegener's Disease - rock bottom

Alicia: My Battle with Wegener's Disease - rock bottom

Alicia’s situation looked bleak.

Even if she somehow got through this immediate crisis what sort of future could she expect?

What else would the Wegener’s Granulomatosis hit her with? Would it spread to her lungs, liver and kidneys? What medication would she be dependant upon and what side effects would they have? Would she ever be rid of this hideous disease?

If Alicia did survive, what sort of existence would she have? She was an attractive young woman in her early twenties before the GPA had hit her. Now the disease was behind her nose, destroying her septum. The rapid weight gain linked to the steroid medication had given her stretch marks from her shoulders to her knees. The chemotherapy drugs had threatened her fertility. 

Would Kev still find her attractive? If their relationship ended would she ever meet anyone else who would accept her?

How would the disease affect all of her other relationships - with her family, friends and work colleagues? 

How could she possibly return to normality?

Alicia had far more questions than answers. The big question, though, was how was Dr Higgins going to treat her, now that all of the conventional treatments had failed?

If you want to continue reading, please check out my book on Amazon.