The Diagnosis
It is hard to imagine that a tiny red dot on my right forearm could have changed my life so dramatically. It was June 1989 and I was a healthy thirty two year old woman, happily married to Bob and the mother of two young children, Carolyn (seven) and Hayden (five). I was in my kitchen busily putting the dishes away, when I knocked this tiny red dot and a shot of pain travelled up my arm. The next time I visited the doctor, I told him about this experience. He examined this unusual skin blemish and said, “No, that’s alright, don’t worry about it.” I didn’t feel comfortable with his response, so asked him kindly to go ahead and remove it, to which he replied, “Oh alright, if it will keep you happy.” So off we went to another part of the surgery and he excised it. I had four stitches and went home.
The next morning, I received a phone call from the doctor asking me how I was. My first thought was, “Wow, I haven’t had service like this before”, and then the penny dropped. This wasn’t a courtesy call to enquire about my wellbeing; he was calling to tell me that the insignificant looking red dot on my arm was a melanoma. My stomach turned and tightened like I had received a severe blow to this area. My greatest fear was melanoma! Was this really happening to me? When I was thirteen a family friend died three months after giving birth to her baby girl. Kay had a melanoma removed a couple a years’ previously and thought nothing more about it. When she became pregnant, the melanoma took over and spread rapidly throughout her body. Everyone was devastated when she died, leaving a loving husband and her delightful baby. Life appeared to me to be very unfair and witnessing this event at such a young age, created a fear of melanoma deep within me and now I was facing this same diagnosis.
The doctor requested that I return to the surgery where he was arranging for me to have a wider excision to ensure all of the melanoma was removed. After the plastic surgeon made the wider excision to ensure clearance, he skillfully pulled my skin back together, although it looked as though a vicious creature had taken a bite out of my arm. Over the years I have had many dark moles and freckles removed but the biopsies always showed they were benign, so it hadn’t occurred to me that a melanoma could be raised, red and look like a pimple. Five years earlier, I remember waking up after an unrelated operation with numerous wounds and stitches all over my body. It looked like someone had gone mad and stabbed me. I had asked the doctor to remove any suspicious moles while I was under the anaesthetic and he certainly did that. I joked at the time saying that if I had a drink of water I would look like a sieve leaking.
Now with this diagnosis, I was terrified. Desperate for knowledge, I visited the Cancer Foundation and asked what I could do to help myself and hopefully not have the melanoma spread. The lady just looked at me in surprise and said, “There’s nothing you can do, you just have to wait and see”. Great! It felt like I was stuck on a railway track and all I could see was a train coming straight for me. I couldn’t get off and there was no-one to assist me. There was a pleading from within. Help! Someone please help me.
Initially my life continued normally as a busy mum, but over the next couple of months my right underarm became tight. I returned to the doctor, and after examining me he said that he couldn’t feel anything. He put the tight sensation I was experiencing down to damaged nerves from the surgery. Nevertheless, the discomfort continued. I returned again for an examination, but still nothing. The doctor, through his body language and comments, made me feel as though I was being paranoid.
In March 1990 my legs broke out in large, inflamed, bright red blisters. My legs looked like they had been badly burnt. Back to the doctor, and yet again there were no answers. Where were the answers? He called in two of his colleagues to have a look. There I was with three doctors examining my legs and all agreeing that they hadn’t seen anything like it - the blisters, not the legs! The rest of my body appeared just fine but it was really strange that my legs were covered in these watery blisters. I asked the doctors if this could be related to the melanoma. “No”, they assured me. I knew deep down within me something was seriously wrong. Blisters like these don’t just appear on a normal, healthy body.
I was referred to a dermatologist who was equally perplexed by the blisters. He excised one and sent it to the laboratory. Again I inquired, “Is this related to the melanoma?” “No”, he assured me. The dermatologist phoned me a couple of days later with the results. “It’s a disease called Bullous Pemphigoid.” I asked him what that was and his answer was, “We don’t really know, it is very rare and usually happens to old people just before they die.” What! I’m only 33 and I don’t intend to die now. After many doctors’ visits, potions and lotions, the blisters finally cleared up, but I noticed that the tightness and discomfort under my arm was becoming extreme. Perhaps I could also feel some swelling or was I just being paranoid? In any case, I was worried. Very worried! Within a week or so, I knew it was not my imagination. When I lifted my arm, a lump the size of a golf ball would appear. When I put my arm down, it disappeared. Panic was really starting to set in now.
As I was having a small skin cancer removed by the same plastic surgeon as before, I asked him about the lump. He suggested I return to my GP who examined me and recommended that I see a surgeon at the hospital ASAP. After examining me, the surgeon stated that I did have a large mass under my right arm and that it must be removed immediately. He spoke to another surgeon, who had informed him that the operating list for the following Thursday was full, his answer to this was, “Get rid of someone”. It gives you a horrible feeling when you look down at your medical file and see a big red URGENT sticker slapped across the front. My heart pumped faster and my stomach churned. This was when I knew for certain that my life was about to be turned upside down. I mentioned the Bullis Pempnigoid to him and asked his opinion. He told me that in his opinion, my immune system was so locked into fighting the tumours, that it had broken down and this was the way in which it showed. I wondered why my body had responded in this particular way. At least I had an answer now. Somehow the answer provided little comfort.
I was in hospital for five days after the operation that took place on 3rd May 1990. It was challenging to stay optimistic during these days, and always in the back of my mind I was waiting for someone to walk in and say, “Sorry Cathy, this has all been a big mistake and there is nothing wrong with you.” Unfortunately, that person never turned up.
I also found it very difficult filling in the long hours waiting until I could be discharged. Everything felt so sterile and the air smelt stale from the disinfectants. One afternoon I decided to go for a walk, dragging the metal trolley supporting the draining bag from my wound, behind me. I caught the lift to the second floor where there was an outdoor area for people to sit in the fresh air. This area was very bare except for a couple of large pots containing struggling plants. As I sat there in solitude, contemplating my future, a butterfly appeared from nowhere and fluttered around looking for somewhere to land. It reminded me of a movie I saw when I was a child in which the story relayed that if a butterfly landed on you, everything would turn out okay. Then I could not believe it. As I was sitting on the chair reminiscing about this movie, the butterfly flew over and landed on my shoulder. I quietly turned my head to watch as it sat there and rested, slowly flapping its wings backwards and forwards. I fervently hoped that this was a good omen for me.