In 2007 after being unwell for a long period and being told by my GP that "you just had a virus" I discovered I had a very rare aggressive form of thyroid papillary cancer. It was rare because the cancer had spread in a downward direction near my heart, instead of the usual outward direction. Due to my ENT surgeon having to co-ordinate his busy schedule with a cardio-thoracic surgeon's busy schedule, it meant the only date they could operate before my ENT surgeon's 6 week holidays was on my 30th birthday! I had four surgeons working on me and the operation took 7 hours.
I woke up in ICU screaming in pain. It took weeks for the Doctors to diagnose me with neuro-pathic pain. For nine months I was in excruciating pain, waiting for the severed nerve's roots to die. It felt like a cigarette lighter was burning against the scar and my chest felt like it was on fire. Neuropathic pain is very subjective. Some people have it for weeks, months or years. I only started to get some relief when the Community Palliative Nurse came to visit me at home. I was on enough painkillers to sedate an elephant, yet got no 'buzz', nor complete relief from the pain. Sleep was a good escape. Many days it was so bad I just wanted to die, but somehow I managed to make it through.
Thyroid cancer does not respond to chemotherapy so you have radio-active isolation treatment, where you are given a radioactive tablet to swallow and kept in isolation until you are no longer radioactive. I was terribly nauseous and incredibly lonely. Luckily I had responded so well to the treatment so the Oncologist reduced my treatment-I only required two radio-active isolation treatments and no longer required radiation therapy-I was thrilled!
In 2012, pre-op blood tests for a minor procedure indicated that I had a high white cell count. Days later, I had to undertake a very painful procedure called a bone marrow biopsy (where a needle is inserted into the hip bone to extract bone marrow). Within a week I was diagnosed with Chronic Myeloid Leukaemia (CML).
The hospital had a shopping mall opposite and I remember sitting on a bench in the shopping mall for two hours in complete shock. This was more daunting as it wasn't like I could chop out my blood and recover like my thyroid cancer experience. Unfortunately, this cancer I would have for the rest of my life and have to keep it in check with daily medications. At present there have been 3 medications for CML in Australia. These medications were different to chemotherapy in that they were specifically made to target the leukaemia cells so didn't kill off the 'good cells', yet the medications came with several nasty side effects. I was unfortunate to suffer nasty side effects for 2 of them and so all my hope was pinned on this last medication. My CML journey was filled with numerous trips to emergency, almost weekly illnesses and fortnightly visits to see my Haematologist in a desperate bid to get my CML under control. CML progression is marked by a blood test called PCR-abl. The desired range is 0.00 and at once stage my PCR was 203%!
On Tuesday, Sept 24th, 2013 I saw Dr Kennedy. He entered the room clutching papers and excitedly proclaimed “your blood tests are all within normal range” He then stepped closer to me and stopped mid-step when he noticed the large golf-ball sized swollen lymph gland in my neck and asked “how long have you had that for?”. I replied that it had been about 2 weeks and I had been to my GP whom told me I just had the flu.
Dr Kennedy then examined my neck and surrounding area. I mentioned that I had noticed another swollen gland in the area near my left collar bone. He stated he thought the swollen lymph gland in my neck could be a blocked salivary gland and that he was concerned that the other swollen lymph I had discovered was not on the same side as the two glands are connected. He then did a quick check of the other main lymph glands in my body and told me he couldn’t find any other swollen glands and to wait there and left the room.
Moments later he brought in a colleague whom he introduced as the Cancer Care Co-ordinator. He dictated to her the tests that he wanted booked for me. She asked me if I had any plans that week and I informed her that I had planned to spend some time with my parents. Dr Kennedy stated that he didn’t want me to wait a week to have the tests done. I was shocked as he is normally one to ‘wait and see’ so I could tell that he was quite concerned which of course then made me worried. After making phone-calls the co-ordinator stated that the earliest that the tests could be undertaken was on Friday. I asked Dr Kennedy what was wrong and he was rather evasive saying he wanted to wait for the test results. I had an iron infusion and then took a taxi to my chiropractor as had been battling a migraine all day. My chiropractor did an adjustment and I then took a taxi home. I went straight to bed with an ice-pack. To be honest I wasn't too concerned about the swollen lymph gland as often this would become swollen when I was run-down or unwell after having thyroid cancer.
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