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We need more time

Today is a beautiful day. The sun is shining, blue skies everywhere, birds flying in and out of the bird feeder and pond in my parents’ back garden and you could easily be fooled into thinking life is good. I went into my mom’s bedroom and lay with her for a while. We chatted about the events of yesterday and she commented on the beautiful day it was. “I must get out today”, she said, “but after I have had a bit more rest, I am tired today.” Comments like those are becoming more frequent.

My dad is frustrated. He believes that we are all giving in. He wants a remission and I feel for him. We all want that, but he feels he is the only one who is trying to fight for it. I left my mom to rest and my dad went into the room. Their room is actually inside a conservatory. Light floods the room and mom has a wonderful view of their beautiful garden. I would love that view when the time came for me to go. I hear dad say that he won’t allow her to stay in their room all day and her pleading with him, saying that she is not giving in, but just needs to rest.
I understand dad’s frustration. He has been the patriarch of our family for ever. Always in control, always the problem solver. Volatile, but passionately in love with his family. Now, faced with a problem he cannot solve, frustration and vulnerability have overtaken him. At times, we have caught him crying and as my sister and I have approached to comfort him, anger flashes in his eyes and he orders us to leave him alone. Even now, the only person he can let close to him is my mom. I fear for him, for how he will really cope without her. The cracks have started to show – some of his behaviours have been irrational and not like him, although the way he is handling the stress is very much like him, only ten times worse. I have assured my mom that he will be taken care of, that he can come and live with us, if he wants to.
Mom is so worried about him. In fact, she is worried about everyone. This process of watching mom die seems to have brought out the worst in us, rather than the best. I am usually the peace keeper and healer in the family, and yet I have turned into a ball of anger, finding fault in everyone except myself. I feel martyred at times, resentful of all that I am doing for everyone else and feeling like no-one appreciates me. My sister, struggling with so much outside of this journey, seems to me to be a shadow of the person she was. My brother has retreated to the sanctuary of his family and who can blame him. Watching someone you love ebb into death is not easy. My poor dad is trying so hard to keep us all going. To keep us believing that mom will find a way to go into remission, to give us more time to have with her. I, sadly, do not have that faith and my lack of religion/God belief does not allow me to pray for it, what is the point?
I love going through to my mom in the mornings. I lie with her on the bed, in my pyjamas. I find myself studying her. Her eyes are so blue and so kind. They are eyes that have seen heartache, but have loved so much. I study her hair, now shaved. I love the shape of her head. Her ears stick out and I absolutely love them. She seems so fragile lying in bed. I usually suggest we do something for that day, she usually agrees but asks for time to rest, just a bit longer.
I have noticed that she is wanting to sleep more. Our palliative nurse said this would happen. She said that the cancer needs energy to grow, and that it draws this from the body. This starves the body of energy and so the body’s response is to sleep, since the lack of energy will make you tired. Bit by bit, the body will shut down as the tumour grows and your body is starved of more energy and eventually, you will slip away. Watching mom sleep fills me with dread. I know that while she sleeps that monster growing inside of her is drawing energy from her increasingly weak body. I know that when she puts off going out with me on a beautiful summer’s day to sleep, it is because the monster is willing for more of my mom to help it grow.
A frustration rises in me again. Why isn’ she getting the treatment she needs, even to just keep the tumour at bay for a short while. Why can’t people see the urgency? Why can’t they see that we need more time, mom needs more time?
As I sit here looking out into the beautiful clear sky, watching the birds, and admiring the glorious garden, I wonder how much time we have. All of our days are numbered, for certain, but mom’s days are much fewer. Each day I wake up and think, another day gone. I do celebrate her life and the wonderful person she is, but, perhaps selfishly, I look to the skies and rue the timeline that is our life and the shortened version that is my mom’s. My mom is so gentle and kind and I can’t help thinking, “We just need more time”.
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A hope that once was but now is lost!

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.
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What If…

Such a long time since I have written anything down and such a lot has happened. Sobriety remains strong but no longer is the focus of my life. My mother is dying of lung cancer. That changes your focus and brings a lot of things into perspective.

As I pen these words, I am sitting in her lounge in the UK. Lee-on-the-Solent in Hampshire to be exact. The lounge is cluttered, but comfortable and, being half past midnight, I am basking in the quiet – a commodity not easily found of late, but more of that later. I have not seen much of her today. As the pressure of the ebbing of her life bares down on me, I feel a much stronger need to withdraw. I don’t particularly like this quality, but it is one I am having to face. The irony is that although I am withdrawing, I also have a need to be around people. It means that I want to be near people, but I don’t want to be bothered BY them. I want to be left alone, to let the world go on around me, whilst I sit here, in suspended animation in my own thoughts and actions. Of course, that isn’t always possible, but today, for some reason, my family sensed I needed it and gave me the space I needed.
So what did I do with this space I had been afforded. Not a lot actually. I transferred all my contacts from my mac book pro contacts to my entourage contacts. There was purpose in this madness. My mother, who is dying, has decided that she would like to help a little girl at her church called Grace. Grace is 19 months old and has Rett Syndrome. She cannot talk, sit, walk and finds eating difficult. She has captured my mothers heart. My mom has to undergo radiation therapy because her lung cancer has spread to her brain and she has decided to shave her hair off before she loses it to cancer. She has asked us to organise an event, inviting friends and family to witness my dad shaving her head. She is asking everyone who comes to please make a small donation and she is going to donate the money to Rett Syndrome research. A local newspaper picked up the story and came to interview her. They asked her why she was doing this amazingly inspiring thing. She replied, “My life may be coming to an end, but Grace’s is just beginning. Why would I not want to help her.” I am emailing all my friends to make a donation to my mother’s cause.
My mom has been given only a few months to live. How does one deal with that information. One day, you are imagining growing old with your mom (who is only 19 years older than you are) and the next you are forced to imagine a life without her. I have decided that I definitely don’t like this game. Life continues to be unfair.
My mother has only recently become a Christian and given her life to Jesus and to God. At around the same time, barely a few weeks before her fatal diagnosis, I decided that there was just too much evidence to prove that God did not exist. Like a child that discovers santa claus does not exist, I grievously mourned the letting go of something so ingrained in my socialisation. I felt like I was lost and alone in the desert. But the evidence, or lack of it, was irrefutable, I had determined. Of course, my mother’s affliction only served to prove my point of view. What kind of a loving God would put what I consider to be the most wonderful, graceful, beautiful soul through such a thing? Surely, no loving God could or would do this.
I arrived in the UK angry, scared and desperately wanting to be strong. For someone who didn’t believe in God, I found myself really angry at Him a lot. I am a Humanist, I declared to my now solidly Christian family. I had gone from being the kind, dependable one in the family to the one who didn’t believe – EEK! Yet my mother, who had only recently made this act of commitment to God would proudly introduce me to her Christian friends and tell them with pride that I was a Humanist. They would all nod and smile as if to say ‘It’s only a matter of time.’ At first, this annoyed me, like I was some sort of lemming that would hurl itself over the cliff like everyone else. But, slowly, as I have gotten to know these remarkable people, I have been unable to deny that there is something there. Something peaceful resides within this Christian mob and that peace feeds my mother.
The jury is still out with me. It is a fine line, this God thing. Religion, and the atrocities committed in the name of it, does not sit well with me. But, my research has hit a bit of a dead end. Whilst science can largely prove the big bang theory, there seems to be little evidence of of what caused the big bang. So, what we are left with is no way of irrefutably proving the existence of God but also no way of irrefutably denying the existence of God. Well that isn’t any good really, is it? Especially for an intellectual thinker like myself. I like proof, I like evidence, but, strangely, I also like to think that we are not alone. Especially at times like this. I secretly admit to wanting someone/something supernatural to hold me and let me find peace within this seemingly unreasonable predicament. I have dared to hope for a miracle. I have contemplated getting on my knees and praying, although I didn’t because I felt that lacked a certain amount of integrity since I would be doing it really just to hedge my bets and not truly because I believe that God will cure my mom, or make her suffer less, or whatever else He has in store for her. True to form, I asked my mom that when she dies, if there is a God and Heaven, if she could please send me a sign. Faith is something, it seems, I sadly lack.
So, where does that leave me? In a vast, gaping, no-man’s land, it seems. I don’t totally believe there is no God, but I also cannot totally believe there is a God. To support my education on all things religious and supernatural I have done research into other Gods/prophets, etc. I like the idea of Buddhism, that whole cause and affect thing (Karma), really appeals to me. Taoism is also a good one, although not as good as buddhism, I fear. Hinduism is not really my cup of tea and I have yet to do full research on Islam, although my dad, the other intellectual thinker of the family, has been giving me a bit of insight into it. I wasn’t brought up Christian per se, but being anglo-western, it is the easiest for me to grasp because it is a part of our culture.
Mortality is funny how it brings up these questions on the meaning of life and where we go when we die. I am selfish. I want my mom to reside with me, so that when I come across life’s hiccups, which anyone who has read my blog will realise happens to me a lot, I can ask, as I have always done for her advice, and she can impart it and the balance of my universe will be restored. Why would God want to upset that? If he has the power to create an entire universe, can he not take away the tumour that is ravaging her lung and sapping her of all her energy? It was her biggest wish not to die of a disease that will cause her not to be able to breathe. Of course, the Law-of-Attraction proponents will say that my mother brought this on herself because she attracted that which she most thought about and feared. I can’t put here what I think of that (insert any expletive you can think of). But I do ask the question, why would God allow my beautiful mother to die of a disease that has frightened her the most?
Strangely, and like a true Christian, whilst afraid of dying, she doesn’t question God’s plan. My problem is that we are expected to accept the plan without any documentation of what that might be. Why would He give me a mind that is totally on the go all the time, questioning EVERYTHING, accepting nothing, if He wanted me to buy into His plan? I ask you God, why would you do that. I consider it to be a form of torture. Yet, niggling in the recesses of my thinking brain is the question What If…