Waiting for someone to die is crap! And that is what I am doing. I am here, in the UK, separated from my husband and children, waiting for my mom, who happens to be my best friend, to die.
We have been told that her lung cancer is so far advanced that there is no way of curing her, that there is no hope. Okay, I try to process that. Having been a nurse for a short stint, I know lung cancer is really not the kind of cancer you want to get. We are then told though, that all is not lost because the cancer is treatable. Treatable, but not curable. What the hell does that mean? Well, it means that they can offer palliative (not curative) treatment, which basically means she is being offered a very diluted form of radiation therapy or chemotherapy, which may or may not reduce the tumour to a size that will alleviate some of the symptoms she will experience whilst on the journey to death. I note that the news is kind of delivered in a tone that says we should be grateful for this ‘life’line. My parents struggle to understand and initally believe that they are being offered a chance at survival. Impatience is detected in the doctor’s voice as he, again, reiterates that my mom is going to die.
This news was delivered six weeks ago and, yet, my mom is still waiting for this so called treatment to begin. In fact, in that time, we have been told that unfortunately the cancer has spread to the brain and that the original treatment being offered to treat the tumour in the lung has to be put on hold, so that radiation therapy can be started on the brain tumour. That was three weeks ago! The treatment only begins on the 28th June which will last for five days. She then has to wait another three weeks before she is able to start the chemo on her lung tumour, and only then if she is well enough.
My mom was informed of her diagnosis on the 12th May and given a prognosis of around two months to live. This then begs the question: Why are they even bothering on the 28th June, since, really, according to them, she only has another two weeks to live? Mom is of the opinion that they know she is going to die, and they are actually delaying treatment in the hope that she will die, so the NHS won’t have to pay for any treatment. At first, I believed that to be a very cynical point of view, but now I totally agree with her.
Do I sound pissed off? You can be certain that I am spitting nails right now. This is a system that has totally failed my parents, and my mother especially. No-one cares. We have spoken to so many people, right from the oncologist to the MP of the local area to try and expedite the treatment that offers her no real hope and for which we should be eternally grateful. But, truthfully, no-one gives a damn about a 62 year old woman who is being taken from this earth far too early. No-one gives a damn about a family who has been given no time to prepare for the end, and who are trying desperately to hold some level of sanity whilst the insanity of death unfolds each and every day. And why should anyone care? She is only a statistic after all. A no-hope case that is just costing the NHS money. Not a woman who is courageously trying to die with some dignity, whilst being a support to her family like she has always been, despite us trying not to need her so much. Not a woman, who despite dying of cancer, shaved her head so that she could raise money for charity for a little girl who captured her heart. No, to the political cogs that turn the NHS, she is just a nobody and there is no denying that the venom I feel towards those political cogs right now is unsurpassed any venom I have felt towards anyone or any thing.
Today, my heart has physically ached – all day. I never used to have this kind of feeling when I felt sad, but my first husband passed away when I was 25 years old and ever since then, when I feel extreme sadness, my heart literally physically aches. Today it has ached more than ever before.
When I arrived six weeks ago, my mom and I were able to take fairly long walks along the beach. We talked and laughed and dared to hope that perhaps there had been some mistake made somewhere along the way. Whilst waiting for the treatment-for–which-we-should-be-grateful, my mom has literally withered before my eyes. She has good days, to be sure. Those are the days that she can get up, shower and dress herself and then retire back to her bed, or to the swing chair in the garden. On occasion, she tries to come out for a bit of an excursion with us, but that knocks her completely. On the bad days, which are becoming more frequent, she cannot get out of bed, is totally breathless and sleeps for most of the day. When she sleeps, you get a glimpse of what she is going to look like when she finally exhales her last breath. I cannot look at her when she sleeps for the pain in my heart is just too great.
I am trying to remain positive, but let’s face it, who made up that crap? Who said that in the face of losing a loved one, we should remain brave, strong and positive. Hello, there is NOTHING positive about losing a loved one. Not for the person being left behind anyway. Oh, you may find comfort in believing that they are going to a ‘better’ place, that this is God’s plan for them and that their time has come. If you are new-ageist, you will believe that mom has come to learn whatever lesson she was sent to learn, or experience whatever experience in the physical form she was meant to experience and that now her time had come. If you are law-of-attractionist, you believe that hey, she brought this upon herself.
I believe none of that. I don’t believe in God. I simply don’t. I am busy reading the bible to try to understand the comfort my mom currently finds in Christianity and I see a God that is pretty wonton and not very nice. He shows mercy here and there, but on the whole, I have a huge issue with the whole dictatorship thing who periodically puts woman down. Right from the first book in Genesis, we are painted as the evil ones, and frankly, I find that abbhorent. I have an issue with a bible that has numerous different versions, has numerous different interpretations with each faction declaring that theirs is the right one. I have an issue with a God that basically creates the earth, lets the devil and sin run amock for an indeterminate amount of time and then says but when I do come back to rule the earth, you had better listen to me, or be cast into a lake of fire. Now, I know that there are going to be huge outcries from Christians across the globe (not least my parents) who will say I haven’t read the bible extensively enough and then they will quote all the historical markers within the bible that must make it true. But, you see, that is all the bible is, nothing more than a history book. It, in itself, does not prove the existence of God. It only proves our need to want there to be something else for us, other than our allotted three-score-years-and-ten.
Even I am guilty of that. I have spoken to God. It is true, I have. I have asked him why after my mom had spent an entire lifetime trying to lose weight (thanks society for that, by the way), dieting and denying herself extensively, that, in her dying moments, when it really doesn’t matter what the hell she eats, has she now lost all sense of taste. Surely, this one small thing, the omnipotent, omnipresent, God could do this one small thing for her. I’m not asking for a cure, just a simple pleasure for her. The simple pleasure of sinking her teeth into a meat pie and actually revelling in its thick beef sauce and knowing you can eat without a care in the world. Is that perhaps too much for God? I also asked if he could cure her, just in case.
Of course, I will be told that if she dies, it means that God had another plan for her. Of course he did. How silly of me. He had her give up smoking 26 years ago, then afflict her with a disease that was, literally, her worst nightmare, to not be able to breathe and then deny her her sense of taste, just to make sure she couldn’t enjoy anything in her last few weeks here on earth. But, hey, God has a ‘plan’, I’m told. We don’t know why these things happen, but it is all part of his ‘plan’. So, whilstever we are believing in the ‘plan’, we are not motivated to find a cure, because the ‘plan’ shouldn’t be questioned, should it.
On the note of finding a cure, why is it that lung cancer is the largest killing cancer in the world, yet is the most underfunded in terms of finding a cure. Is it because, like obesity, we look upon it as self-inflicted? Or is it because the powers that be like the money generated from taxes gained from cigarettes. Why aren’t we targetting tobacco companies and forcing them to fund the amount that it costs to treat the 10% of smokers who get lung cancer. Better yet, screw freedom of choice, let’s just do away with cigarettes altogether. Smoking is an addiction and like any addictive drug, it should be banned. Sorry, but watching my mother die in this fashion has made me very firm on this. It is a horrible horrible way to die and it is like playing russian roulette, you just don’t know if yours is the chamber with the bullet in it.
Anger is the name of the game for me today. Anger, and extreme sadness and helplessness. It is hard living a life that no longer has hope. My mom used to be full of hope. I miss that.