'I have not been myself for the past six months'. That was what came to my mind instantly as a response when I apologised to a good friend for a poor decision I made in a situation in an online game where I had control and opted to be strict rather than forgiving. Yes, it is a game, and I was struggling to make sense and to organise a new, rather complex option in that game and I felt that we needed some fairly strict rules to provide a fair atmosphere for every member in our Community, but...
First of all, my friend was urging compassion and forgiveness. She saw the human behind the player who had broken the rules. I was struggling to deal with two horrendous situations: the medical diagnosis of Stage 3 Breast Cancer for myself and Stage 4 Lymphoma for my mother, but is that not MORE of a reason to try to be as forgiving and compassionate as possible of others??? Instead, I felt pressured, pushed against a wall, felt that the player was taking advantage and simply not respecting the rules we had created... in retrospect, I regret the decision I made to remove her from the group. Whether or not she was taking advantage a little, whether or not she respected our rules... she still was a human being who had gone through her own real life difficulties and upsets recently and it would have been 'more like me' or the me I like to think I can be, to have been kind and let it all slide.
So this made me consider the entire concept of 'I have not been myself.' It has no validity whatsoever. A person who is in a good situation in life may find it easier to be the 'best' self he/she can be, but a person who is in the very worst situation in life still is the same person and how one deals with that situation is another aspect of the same SELF. So I cannot excuse anything by claiming that 'I have not been myself' the past six months even though I do not FEEL like me, do not respond in the ordinary ways to life and have undergone profound sea changes in my soul because of the cancer. I am sorry that I could not be better than I have been. I have not been cruel or mean deliberately to any one, but perhaps I could have been more patient and forgiving in certain situations.
It grows very tiresome when people keep banging on about keeping a 'positive attitude' where cancer is concerned and even worse when one is told that a positive attitude is essential to survival. I have NOT had a positive attitude. This cancer should have been caught two years ago. It did show on my mammogram but the tumour was ignored.... so that, for a start, rather put me in a less than positive frame of mind. Then there are the lies and half-lies and propaganda of the medical profession and the pharmaceutical companies who are making money hand over fist because of cancer. If one blindly accepts all of the pronouncements and treatment options, perhaps one could have a positive attitude, because that is one of them and people who look upon physicians, 'experts' and indeed any authority figure almost as a god probably would be able to have a positive attitude because there would be blind faith, a sort of general safety net for sorrow, pain and despair.
Unfortunately, many of my own physical disabilities could have been avoided or at least made less severe if I had received GOOD medical attention long ago. I therefore am not disposed to believe in any diagnosis or pronouncement from any one in the medical profession. I do have doctors whom I respect and whose advice I usually will follow, but I do my own research and I have avoided some potentially deadly results because of it. Doctors do not read the patient's charts comprehensively and often will prescribe a medication to which the patient is allergic. That is fact. A new drug is released and promoted... how many doctors really study the details before they prescribe it? In all fairness, allergies to medications are not that common, but even so, potential side effects, and especially serious long-term negative effects should be considered and that is not done.
Cancer treatment is a case in point. There is a protocol that is followed and it is rather rigid. Treatments depend on number and size of tumours, whether or not lymph nodes tested positive... and I think there are a number of factors that cause doctors to follow these protocols rigidly rather than questioning them too much.
Cancer is a killer and the world is desperate to hope there can be a cure. The world is desperate for FAITH in the current treatments.
So you have:
Chemotherapy
Radiation
Drug treatments (tablets for a five year or ten year stretch)
If you have been diagnosed with Stage 3 Breast Cancer, you will be told you need all three of these.
Never mind that chemotherapy basically consists of pumping the patient's body full of poisons, after prepping that body with steroids. Never mind that chemotherapy actually can CAUSE cancer. Different cancer or in different places, yes, but deadly cancer nonetheless. This beyond the nausea, loss of hair, depression, and whatever else is associated with chemotherapy.
I could not accept chemotherapy because my body does not tolerate steroids, so that was the end of that. Before the doctor explained that chemotherapy actually required steroid treatments, though, my surgeon was infuriated that I even questioned the details of chemotherapy and its effectiveness.
What I have seen, more than once, sadly, is that you can have two patients with the same breast cancer, same stage, and both undergo the very same treatments. Three years later, one has survived and the other has died. Even in the case of two sisters, where biological foundation was similar: one died and one survived. So what does this do to that very loud statement: CHEMOTHERAPY WILL DESTROY ANY CANCER THAT IS IN YOUR BODY EVEN WHEN IT IS TOO SMALL TO DETECT. It is a false statement!
Radiation now is a different matter. It causes its own problems, but I do see some validity in the idea that the place where the cancer lived must be cleansed of any remaining particles, and especially if the cancer had grown to a point where it was very close to other organs. They call it 'safe margins' and whether or not radiotherapy is prescribed has to do with the size of those margins. I had almost no safe margins so I agreed to the radiotherapy.
Six weeks of it, five days every week. Every one at the Cancer Centre was very kind, gentle, sympathetic, but I must complain about one aspect of the propaganda... Radiotherapy can and does cause nausea for many patients and yet, when they asked me about nausea and I told them, quite honestly, that it was so bad that I barely could eat anything, the response inevitably was: 'That is surprising. Radiation does not cause nausea ordinarily!'
Why say that when it is very much documented that, although not every patient will experience nausea, many do? It always made me feel somehow inferior or that I was being doubted or that they felt I was some sort of hypochondriac. Really upsetting to be honest, especially when it was the same response each week when they asked the question.
I changed my diet. I did everything I could to minimise the nausea, but still would be awakened in the middle of the night with it on occasion...
In any event, that treatment is done but radiation can continue to be active for three weeks after treatment stops, and I definitely can attest t . My skin now will become irritated in a new spot that never was afffected for a day or two, so somehow it still is active in there. Almost three weeks now though. I pray that all of the symptoms, including the residual nausea I continue to experience, will stop soon,
Finally, the anti-cancer drugs that are given in tablet form. There are four that are given for breast cancer. Mainly because I wanted to demonstrate willingness after the chemotherapy rejection, I tried to work out a choice with the chemotherapy doctor in charge of all aspects of chemical treatment. It turned out that two of the drugs were steroids and the third actually caused blood clots. As I experienced a blood clot a couple of years ago, he said it would be very dangerous to take that drug now. So that left one drug... and it is an extremely dangerous medication that can cause uterine cancer, inter alia.
I had an allergic reaction to it. My tongue became so swollen I thought I would choke. My throat felt as though it were on fire. I had terrible headaches. I took benedryl to try to counteract the allergic reactions, and cut the tablet in half... I struggled with this for about a month, and still nothing became easier. Finally, the chemo doctor told me to stop taking it. I feel that was a GOOD decision. When the body rejects something that violently, it cannot be positive, and I do not have any desire to trade breast cancer for uterine cancer.
This was not supposed to be about cancer treatment, however. I was writing about the idea that I have not been myself for six months....
Well, obviously, physically, I have been a different person, with the nausea, the other side effects both of the cancer and the treatments. I am extremely emotional now, weeping on a daily basis at the drop of a hat. This is partly the cancer, but I know it is partly real sorrow over the loss of my mother.
In fact, I began to suffer, thinking of my mother's ordeal, even before I discovered the breast cancer. From July of last year, I was tormented by her situation. The doctors diagnosed many different problems, and some of them were not communicated accurately to me. I lay awake night after night, literally worrying myself sick about her. Then the actual diagnosis of her lymphoma at the same time as my cancer diagnosis, and I began a new path of torment. In a way, I was affected more by her situation than my own. She flirted with the idea of chemotherapy, mainly because all of her friends and family believed it actually could cure her. They do say that it is the only possible solution for lymphoma and it can rid the body completely of the cancer. True? Who knows? All I know is that gradually, I came to a realisation that she had absolutely no intention ever of undergoing chemotherapy. She kept making new appointments, then changing them. She kept every one in a state of hope, I guess, but she knew she was not going to do it.
So who is this woman who cries every day? I hate crying. Always have hated it. I become congested and it gives me a headache when I cry, and yet, I cry and cry. I cry alone in my room... something will remind me of my mother or I will think about my own future, fraught with insecurity and hard decisions and the tears will come again. And again.
I understand that I cannot have my life back. What is gone is gone, and yet, there are things that matter to me from my past and I do not want to lose them. As some one who is quite disabled physically, my world is for the most part reduced to whatever surrounds me. Little material possessions that are attached to people, memories or stories mean a lot to me. Those are the things that keep me sane in the dark moments.
The world is divided between collectors and what now are called 'minimalists'. My mother was a collector. I am a collector. Where other people want to clear a space, I want to fill it. I want to see memories and beauty and imagination at work. I need that to breathe.
What is extremely difficult is living in the house of some one who is a minimalist. What is difficult is not having a place of my own, always living on the edge of uncertainty, under threat of eviction. I know things could be far worse, but at my age, what I would like most is some place that would be mine completely, where no one could challenge my use of the space or put me down for my love of little things, of pretty things, of unusual things.
What I have collected through the years never was based on monetary value. In fact, I consciously devalued some of the items in order to make them less vulnerable to possible sale by any one who looked at things, not for their beauty or interest but strictly for their financial value. So there are no dolls that are NRFB (Never Removed from Box) or at least very few, because I wanted to enjoy them and because I did not want them to be seen as 'collectibles'.
Now that my mother is dead, there are people who look at her home and see a lot of clutter or 'junk' but if I have any control over the situation at all, I am not going to allow some Ebay vulture to go through everything and put it up for sale. Those items have significance, not only to her but to myself and possibly my sister. We need to go through them to separate what is invested with familial or personal meaning from those items that simply may or may not be able to help pay off her debts.
Again, though, I have gone off the track I mapped for myself.
I HAVE NOT BEEN MYSELF OF LATE. PLEASE FORGIVE ME.
How easy to make that claim and in many ways, one has not been the SAME self one was prior to all of this. I cannot allow myself to justify less than stellar behaviour with this, however. If I have been impatient or less than fully invested in life, please forgive me, but cancer and loss are not an excuse. They are a REASON but there are no justifications on this earth,.
I do not believe that now that I have pondered this, and searched my soul. The people who go about shouting and heaping abuse upon others are responsible for their actions and the hurt they cause. That is what I believe. Moreover, I know it is a deliberate course of action that makes them feel powerful, better, whatever... but that is no excuse either. You do not hurt other people to make yourself feel better. That simply is not on.
There is some truth to the idea that, if you loved some one, you should have treated them properly while they were alive. When some one goes about talking about the deceased as though she were the centre of your existence, the most amazing person in the world when in fact that person ABUSED the deceased verbally, emotionally, and possibly even physically by withholding pain medication and medical aid to me is one of those situations where the feather of Maat will weigh down the scales to convict.
I really tried to be good to my mother before she died. I tried very hard not to let my own cancer make me less than patient with her. She was opinionated, critical, and infuriating, but I loved her dearly, and I now see that her refusal to look at reality squarely was born of her own ordeals in her youth. She had breast cancer when she was 42, and she survived four more decades after that. She created her own mythology that allowed her to have a good life. 'I was born happy', she would declare. I think she simply stuffed everything else down as far as it could go into the hidden depths of her soul, and focused on a surface that was bright and lively. She did this primarily by being a very social individual. She could not stand to be alone. She could not survive any intense soul-searching, really. She never apologised for any wrongdoing, for any of her defects as a parent, for any cruel or unkind words to any one... but I think she was incapable of doing so. She had created a coat of armour to protect herself and it had to be solid. If she admitted any mistakes, the floodgates would open and she may have been destroyed.
I have not been myself... my mother never said that, incidentally. She very much was herself to the end.
I WILL NOT BECOME THE THING THAT I HATE.
That is another aspect of 'being oneself'. All my life, I have experienced temper tantrums from others. My mother was very fond of them. She said a good temper tantrum was better than a cup of coffee to awaken her properly in the morning. Early every morning as a child, I was awakened myself by the clash of pots and pans, and loud cursing by my mother. What glorious freedom of expression that represented...
There was only one person who was allowed to have a temper tantrum, however. The only time I tried it, I was punished severely, whipped with the little red belt. (In those days, corporal punishment was not prohibited.) So I learned quickly it was not an option for me.
There was one point in my life, however, when I was involved in a relationship with some one who was so gentle and passive that I could have screamed and shouted at him without ever fearing any physical or even verbal retaliation.
To my shame, I did throw a glorious, fully-fledged tantrum that obviously had been building inside me for decades. It was a wonderful feeling of freedom, but followed instantly by intense shame. I realised I did not wish to become the thing I hated most. I would not become an abuser, a bully, a person who felt entitled to behave badly for whatever reason. I would not be any of that ever.
Once in awhile, when my cats are particularly naughty, I shout a little at them. Fortunately, they are not intimidated in the least. They do not cringe. Sadly, the bad behaviour does not cease either, but even those small outbursts make me feel bad. They do not really deserve that much drama simply because one of them tried to eat a piece of plastic and spewed it up onto the floor.
Recently, I have seen a new trend in British television particularly, which is to go to a train or underground station and scream as a train goes by. How I would love that!!! That is a valid way of expressing all of that emotion that cannot be dumped on innocent bystanders. Sadly, not a train in sight...
No comments:
Post a Comment