Cancer Has Ruined My Life.
This disease that disproves of my wellbeing is the worst possible thing that could have happened to my sense of independence. Cancer has left me feeling debilitated, ugly, useless, and hopeless. The present immunology has undermined my confidence to deal with people, especially medical staff, as I flounder to make sense of the discomfort, dizziness, and burgeoning psoriasis released as the anticancer drug binds to the proteins in my T Cells that release the cancer. Cancer is another blow in many traumas that wants me to leave, die and just get out of someone’s way. I have battled all my life to stay part of something only to be rejected. I mean what does it want from me? That of course is the issue: looking for rhyme and reason in a dumb cosmos. Some suggest cancer is a cell gone wrong multiplying and becoming a kind of apoptosis designed to protect the integrity of the species, where those overwhelmed are killed off to remove mutated or damaged DNA from the gene pool. Which suggests a plan and made by someone or something who is acting for one’s best interests and by extension humanity’s best interest. Unacceptable because the world has a lot of barbaric attitudes and a lot of barbarians in it. Considering the many high profile people who have died from cancer then believing it to cleanse the gene pool is as idiotic as putting Jews into gas ovens.
Ideally, all I have wanted in my life is to be left in peace to make my arts and crafts. Life for me has not been so organized. I did the best I could with what I had. My cancer diagnosis and treatment and the challenges that time has brought was understood to be a difficult stretch. I expected acute side effects, but I felt utterly unprepared for the risk of long-term effects. For example, I am having chronic pain weeks after cancer treatment. Every day I experience discomfort particularly around my neck. Now, I find out how hard my life will be. My autism has my sensory overload button pushed down hard all the time; I have no peace. I struggle with making sense or comprehending of cancer life-saving treatments having such negative and long-lasting consequences.
The symptoms of my distress began with the radical surgery on my face and neck. The surgery was awful and has left me with scars and problems with my neck movement and left shoulder. The following radiology has distorted my sense of taste, given me tinnitus and fifty-percent hearing loss in my left ear. The removal of so much tissue and cutting of nerves left me with a sense I did not know the left-side of my head anymore. One doctor was insensitive suggesting I would feel better soon. Months later, the left-side of my face and neck are a foreign place; I do not have normal touch sensations from my ear to the back of my neck down the nape to my upper shoulder. This is permanent. My neck no longer has equal support from both sides and this lopsidedness has caused me extreme pain, a seven-to-eight on the ten scale. My GP has instigated a pain management plan which includes opioids and a nerve pain relief drug called ENTRIP (amitriptyline hydrochloride 10 mg) which over time builds up relief. The dependence on any medication for health seems counterproductive to me. A nerve for my lower-left lip was cut leading to discomfort in eating, drinking, and talking. The psychological damage performed on me from being prodded, needled, stared at, told what to do, all for my own good has activated my PTSD and made me very reactive to all advice. My nose was distorted in further surgery to remove another cancer and I have trouble regarding my looks as anything but scarred. This will grow as I age causing my left side of my face to droop. Most patients do lose their hair with chemotherapy, and I hope in a year or so my hair will regrow. As well, I run the risk of damage to areas treated with radiology that cannot be healed.
My perception of time has been altered. Serious illness makes one think about the length of one’s life. Cancer can be a death sentence and its treatments reduce a life span by helping mediate the onset of several chronic diseases. I have become impatient, more sensitive and easily frustrated by the medical system and the witless comments of many. I refute suggestions my lifestyle is to blame when I do not drink, gave up smoking thirty years ago, and avoiding the Sun in Queensland, the skin cancer centre of the world, is impossible. There is no scientific support that stress causes cancer. Frankly, whether one gets cancer is bad luck unless you have ingested a toxic radiative substance, ask the Russian secret police service. I have become a professional patient where my time and body are regulated by oncology and other related appointments. My body is restrained by the administered anticancer drug Nivolumab by being stiff and unfamiliar. It is also causing psoriasis to flare out across my skin in rough red areas while psoriatic arthritis develops in my left leg making it painful to lift myself out of chairs. Lethargy is a thing.
In retirement I had hoped to build my painting career and I will regardless pursue that but, the financial burden and discomfort I now endure will stymy any immediate high hopes. My expectations have been lowered. Another disappointment about events in my life. Another event that triggers my PTSD. Another recession eating away my finances. Another uphill battle where this time my energy is diminished by illness. I feel sad about my cancer diagnosis and while being treated for cancer. I feel sad about the loss of good health and am unhappy because I cannot do the things as I used to. I have lost so much that I enjoyed. The loss of my core strength challenges me on so many levels. Every day I must fight the learnt behaviour of my body about pain as I raise myself from sitting; it disgusts me. I was always naturally strong and that maybe lost to me now. I certainly feel despondent.
Some it seems, feel it is normal to feel sad at the end of cancer treatment. This is a time when you might grieve for what you have lost or think about the stressful times during treatment. I am certainly sad about the changes to my body or my energy levels. However, I will be glad when I can walk away from the hospital, a place I hate attending. I have very mixed opinions about the so-called caring professions. Science fiction offers us hope that the future will have faster care and attention and robots will replace nurses. I can understand why a person would go through years of arduous training to find better cures for the malfunctioning machinery of the human body, but nursing flummoxes me. Repairing the body is a worthwhile cause and involves intense scientific research. Nurses are hit and miss with me, I distrust their motivations because of many past abusive altercations.
I have always felt like withdrawing from people for a while during grief. Grief is a very personal experience, and one’s feelings do not have to follow any path but your own. Especially when the loss was unexpected, and I valued what was lost. In the past, I have generally coped with loss on my own. The support systems in other’s lives like family, friends, religious, and social communities failed for me, alienated by mental illness of my parents and the competition bred in groups. Friendship seldom got in and those special people have died before me. So, I feel the grief some parents feel burying their children too early; it is the same feeling. People on the autism spectrum like myself, need mentors at the right time. Now, in my senior years there is little assistance and a lot of misunderstanding. There is a myth that autistic people lack emotion, rather, most autistic people have very strong emotions.
Nor do autistic people have a deficit in communication; we just communicate differently. Neurotypicals look to find fault in us describing us as having a communication deficit and lacking intelligence because you do not think as logically, see patterns as well, or cannot speak at length about a specific interest or topic. It is easy for me to paint pictures quickly because I see the patterns in colour, tone, and shapes in a studied glance. I have no time for trivia or by extension gossip and malice. Sometimes, my autism makes it hard to manage feelings like frustration, fear, or anxiety I experience resulting in an emotional outburst called a meltdown. These meltdowns are relatively common among autistic people with low support needs. They can be the result of sensory overload, or high anxiety sometimes caused by frustration. Cancer is by its nature frustrating.
Regardless of being thought to be bright and capable I have suddenly exploded in anger, very childish. Hence, I may distance myself from my same-age peers, creating a less-than-equal relationship and, in some cases, alienating potential friends. Often, I have been called out for my repetition of childlike interests, especially when combined with childlike behaviours, like being too cute when younger, has had a negative impact on my work relationships and opportunities, and generally on all my relationships within the community. Eventually, age-inappropriate behaviour can undermine an autistic person even if that person is intelligent, articulate, hard-working, and good-natured. I do not feel understood by my oncology team.
The limitations of my life are now apparent in a way that has shrivelled opportunity and diminished my ability to achieve anything. I spend a lot of time walking. I spend a lot of time just zoned out. Sometimes life gets in the way of one’s plans and sometimes one gets in the way of oneself, so one keeps looking for the best in people and the positives in situations. As I can no longer deal with people face-to-face, I am using social media instead. No panacea as crazymakers, narcissists, and corrupt people run amok in the digital realm looking for supply to manipulate. Unfortunately, my independence requires it but, this is a mountain too high or far to tackle. Typically for an autistic person I am often too late to take advantage of opportunities offered or have lacked the executive-functioning to properly plan for long term obstacles. Cancer is what I have and although dreadful I must face a new set of circumstances, some uncomfortable. Cancer has ruined my life as it was, so I must renew what I want, easier said than done.
In any other time of grief, I would have firstly highlighted my accomplishments and showcased the positive changes I have made in my growth. Secondly, I would proactively seek opportunities to take on additional responsibility or projects that showcased my skills and dedication that can set the stage for recognition and advancement. Thirdly, and this is hard for me is to strengthen my Professional Art Network by connecting with colleagues and influential individuals in my industry by building positive relationships which will hopefully open new opportunities. One must emerge like the mythical Phoenix rising from the ashes of any challenges or delays transcending them with grace and determination. But now, I wonder if I have the knowledge, strength, and inspiration needed to meet my challenges because cancer is a very defeating disease. The medical system is made insensitive because of high demands on its services; my autism is ignored. I am so angry. It is messing with my Zen. But, if a problem arises, I know to be practical not emotional. In this careless world it is those who see a setback as a stepping stone who do better. Cancer is a part of my life, not all of it. Unfortunately, it reminds me constantly through lethargy and neck pain that it is a threat to my wellbeing. Looking into my past reminds me that was the time before metastatic cancer, now malignance is my present, my future is growing from all that. It is the basis for a grim tale that will only end badly because something has always been chasing me away from life. I have just failed to comply.