I Have Cancer Big-Time
Beginning of August 2023, after problems with an ear infection, glands on the left side of my neck and face stayed swollen. This was regardless of oral antibiotics and cortisone-type eardrops prescribed earlier over several weeks. Getting access to my GP was problematic so, I decided to change clinics. My new MD recognized it was my Parotid and Lymph Glands that were enlarged and sent me for an ultrasound Xray. The report showed abnormal development that resulted in me being sent for a fine needle aspiration into the Parotid Gland under anaesthesia. The Cytopathology Report summarised that I had metastatic malignancy: numerous malignant cells occurring in loose aggregates and singly. This is a difficult diagnosis. This type of spread is Stage 4 Cancer and Parotid Cancer is rare. My doctor stated he had only seen one other case in forty years of practice. They occur at a rate of about 3 cases per 100,000 people per year in the Western world. The Cancer will have started in a Melanoma removed from the left-side of my face in October 2021, and CT scans may suggest any further sites. I have had a lot of Skin Cancer surgery including three Melanomas and hundreds of squamous-type cancers removed beginning in my late twenties. As well, I have one salivary gland excised and another required surgery to remove stones. So now, I have Cancer in a salivary gland. An uncommon Cancer and not the easiest to treat.
In October, I will be sixty-nine and this diagnosis is not what one wants at this age. Frankly, I have done some preliminary research on head and neck cancers and the prospect is daunting. The surgery is invasive and will change the way I look because of deep scars and the possible removal of bone and other facial tissues. The quality of my life may be broken. My independence will be shaped by further adjuvant therapy including surgery, perhaps radiation therapy. Certainly, stem cell chemotherapy is added, this will depend on the features of the cancer. So, Parotid Gland Cancer can cause physical changes while its treatment can cause side effects. The literature I have read suggests, some of these physical changes and side effects will go away soon after treatment, while others may be long-term or permanent. It is a gloomy prospect. I have had the stuffing knocked out of me these past decades and now I must battle this. Eventually, I may have to make difficult choices.
A phone message arranged by my doctor informs me of my Category 1 status for treatment at the Ear, Nose and Throat Clinic, Townsville Hospital. Meanwhile I am having more mundane tests and the results from my chest CT scan are coming in. My sleep is fitful, and I am agitated and irritated by the world. This is a horrible inconvenience in my life. Death comes to us all, but this seems like a messy ending full of pain and bitterness. The more I research it, the more unsettled I become. However, I have learnt from experience that going into surgery without some knowledge of the procedures can result in sheer shock. I feel wounded and locked in a place that disturbs me. My freedom has been denied; made worse by a hospital system that throws me into an insane storm that demeans my body making me useless for living. Too many unwanted touches, too many sharp pains, too many platitudes, and hospitals smell stiff and brutal to me. The hospital experience desensitizes me to any feelings I deserve a cure, a treatment, or good intentions which certainly pave the way to Hell because this is a dark journey. Nevertheless, I will follow reasonable medical instructions. It depends on the prognosis.
The process for a detailed diagnosis began on Wednesday 9th August, by my GP Dr Mohamed Rahman who arranged an appointment for me with urgency at the Ear, Nose, and Throat Clinic, Townsville University Hospital on Friday 11th August. At this appointment, I met my future clinician Dr Hanza Usman who looks like Leonard from The Big Bang Theory and is as bright and super intelligent as that character. I like that. His boss, Head of the Department Dr Claire Frauenfelder competently told me it was a metastatic cancer and further scans would identify the source and type of Cancer involved. I would need surgery and chemotherapy. She told me that some days later I would have a meeting with my surgeon and other medical staff for a plan forward. I was shellshocked enough at this stage. Although different days had been set for a PET and MRI scans starting the following Tuesday 15th August, the Xray team managed to do both on that day. All day at the hospital with a catheter in my left arm for the radioactive sugar dyes and having an unexpected time in an MRI. Magnetic resonance imaging is a medical imaging technique used in radiology to form pictures of the anatomy and the physiological processes of the body. MRI scanners use strong magnetic fields, magnetic field gradients, and radio waves to generate images of the organs in the body. The machine is noisy; nothing quite prepares one for it. The loudness of an MRI scan depends on the specific procedure and the machine used. MRI noises can often go above 90 to 100 decibels, requiring the patient to wear ear protection. The earplugs were ineffective for me, my autism makes me sound-sensitive, and I was exhausted by the experience.
So by 9.30am August the 22nd an appointment at the hospital’s Oncology Clinic for an assessment by the medical team was made. It was early afternoon before I met Dr Oskar Edkins ENT-Otolaryngology Surgeon, with Dr Hanza (Leonard) and a student doctor. Dr Oskar asked me what I knew. I rattled off the list; Dr Oscar listened. Then ever so gently I felt his words flow over me to wash me clean of any belief that this was going to be a quick fix. Melanoma was everywhere in the lymph glands on the left-side of my neck and face and along with the Parotid Gland they would have to be removed. The surgery would be a marathon and take eight to nine hours. There could be risk of injury to the facial nerve which penetrates but does not innervate the parotid gland. The gland is instead supplied by the glossopharyngeal nerve. Damage to these nerves will end in the left-side of my face dropping like a stroke patient. As well, another serious brachial plexus injury occurs when the nerve root is cut from the spinal cord and is a possibility in this surgery. Signs and symptoms of surgery injuries can include weakness or inability to use certain muscles in the hand, arm, or shoulder. My left shoulder could drop.
The removal of the lymph glands will result in Lymphoedema where fluid builds under my skin and must be massaged across my neck to flow down the right-side. To manage this I met a physiotherapist who alarmed me with her loud voice as though she was lecturing a crowd. I wondered if the pre-op meeting had spelt out the seriousness of the surgery which had set her off. It was unsettling and I stop listening to such types. Further to this I met an allied health Social Worker called Tanvi Kapoor who was eager to supply me with information from the Cancer Council and was able to have me linked to the patient transport service. This will give me free car pickups from my home to the hospital and returns for my continuing care especially for the adjunct chemotherapy and further scans. All the scans confirmed there is a small node in my upper chest which will be observed into the future. There is further home help should I need it. Dr Hanza Usman assured me that with surgery and chemotherapy I can expect to live on. Cancer is a word not a defining statistic.
Two pre-admission/anaesthetist appointments were booked for me on Tuesday the 12th of September; however, they were changed to Tuesday the 5th of September. My surgery is booked for a 7am start Friday 8th of September. I am shaken but not stirred by this news. The surgeon wants me in earlier. How the world around us unfolds itself is not up to us, rather how we react to it is. Yet, we tend to get disturbed because we do not like what is happening or what we want to happen does not happen. Neither natural disasters can be stopped from happening, nor can science prevent our bodies from aging. Wishes and people will go their own way; there are no guarantees. Nevertheless, accepting one’s circumstances can be difficult, especially when we face significant hardships. Adversity is not an excuse to behave badly. It is an opportunity to practice virtue, to be stoic. But I feel lost in the dark for now. Why am I in here? Do I have to be here? I am being forced to face how I will live beyond this. I am walking between worlds. It is asking the dark questions and maybe being afraid of what the answer will be. However, I have survived other dreadful life events and found my way through the darkest situations. It may take me a while to process another difficult event, so I face it with an observant and critical eye. Accepting my present moment is something I can do. Projecting hope or worry into my future is pointless as it is unknowable. Eventually, now will become a present-future moment and as I dealt with my past as a present point then I know I can handle what is yet to happen. The same stoic principles apply anywhere along my timeline. Past hardships have been survived. The present is for persisting and resisting. The future will be the present soon enough. I will add more to this post as I voyage onward.
