Tuesday, 19 March 2013

Work Work Work

They say that if you do a job that you love, you will never work a day in your life. But why do we have to work in the first place? Even if you do love your job, you will still have days when you wish you could just pack it all in. Ok, so I guess the bills need to be paid and mouths need to be fed, but is that the fundamental reason for why we work?

I like work. Not all work, just the work I like. I like working with people and I like the satisfaction of getting a job done well. I like jobs which can be completed and I hate work that is never ending  I guess I am generally quite driven and motivated; if I put my mind to something, it will get done.

Currently, I am not working as a student or an employee and it is driving me insane. In the past, I have thought that if I came into a whole load of money which would mean that I wouldn't have to work, then I would be quite happy. I then realised that my mind started to wander and think about all the new projects I could start up with all the money I had which is when I realised that my drive to work must be more than just money. This stint in hospital has only just confirmed it.

I guess, to some extent, I find purpose and meaning in work, I feel useful because I am contributing using the skill set that I have been given. But, so people tell me, this is an opportunity to rest and recover. So this is my question, how exactly do you do that? Does it mean that I have to lie in bed all day? Does it mean that I need to do what I enjoy? Well, I enjoy working but that is not an option. But then maybe it is. It is probably dependant on how you define work. In some respects, writing this blog is both work and not work. It is work in so far as I have decided that I would start this project and see it through to completion. But, in another way, I don't think it is work because it doesn't feel like it.

I think there are two extremes in attitude towards work which most of us are carry out and a wise middle ground which a few land on. Sluggard and Workaholic. Being a sluggard has never been an issue for me but being a workaholic has been/intermittently is. The consequences of not resting for me have been catastrophic in the past leading to burnout and severe depression. I tend not to rest until it is forced upon me ie when I have crashed and burned. By that point, the ship has sailed for rest and it is recovery that needs to happen which is different and takes energy in itself.

For me, resting requires organisation and discipline. I need to organise my rest time so that I do something that I know will refresh me - if I sit in front of the TV for a whole day as my rest day then I will definitely feel depressed by the end of it. Resting requires discipline because it is very easy to let other commitments which masquerade as higher priority to invade time that has been set aside for rest. Ideally I would like to be able to set aside one day a week for rest but that isn't quite practical for me. Realistically, I could probably manage one day a month, but even that is a challenge. I think the challenge for work and rest lies in finding the right rhythm to life, as oppose to a jerky stop start approach.  I guess it is similar to clutch control in a car - when you first start to learn, gear changes are very jerky and stalling is common; but as you get more practice gear changes become seamless. For me, I'm probably still at the stalling stage, so I guess I'm going to have to continue working at resting.

Sunday, 17 March 2013

Fish Bowl

Tomorrow is my last day of treatment of chemotherapy for this cycle. In comparison to last cycle, this one has been a walk in the park. At the risk of a premature celebration, I haven't vomited once, my brain hasn't swelled up and I haven't been put into source isolation. I've felt a bit nauseous and fatigued, but that has been  it - the physical side has been reasonably easy. But I have struggled emotionally this time round. With cycle one, I was unconscious for the majority of it so time seemed to pass quickly. This week has felt like it has dragged on for a very long time. My days have been dictated by my chemotherapy schedule and there is no escaping it. 

I feel like I'm living in a fish bowl- bigger than your standard gold fish bowl, but nowhere near as big as the sea. I move around in the space that I have getting glimpses of the outside world I was taken from; a cruel reminder of what once was. Like a fish would play with a ball and hoop, in my tank there are things that I can do to keep myself occupied, but it is meaningless. The hope that this will be over eventually is followed by the realisation that eventually could be a really long time. I cling to the hopes and dreams that I hold dear, desperately trying to stop them from turning into fiction, trying to believe that all is not lost, that one day, they will come to pass.  I move around my tank to give the illusion of purpose. But when I can kid myself no more, I stop and find myself deflated, empty and wanting.

They say God never leaves us or forsakes us, well, He actually says that himself. But I feel disconnected from Him, as if He were in some far away distant place. I know in my head that He is near, but that seems to make no difference to my heart or how I feel. I often wonder why it is that I can seem so far away from God when He is actually by my side. I have come to the conclusion that it is something to do with me. There are times when I know that I feel disconnected from God because I am living in a way that is against Him - if I turn my back on God then it is logical that I will feel disconnected unless He intervenes. In other times, including now, I think I feel far from God because I am consumed by the heaviness of my circumstance and have lost sight of God's fatherly love for me. It is not wrong to grieve. it is part of healing, but it becomes unhelpful when the head is held continuously in the tear soaked hands. It is when the brow is lifted and the gaze settles on the One who saves that hope, true hope, flows back into the heart and the strength to carry on is rekindled. Even as I write this, my heart is beginning to feel a little lighter. 

But part of me still wants to reject this lightness of heart being offered to me in favour for despair. Maybe it is because I don't believe that God will save me from this and grant me the hopes and dreams I sorely long for. Yet this I call to mind, God is always true to His word and He has plans not to harm me but to give me life. It is highly likely that this will not happen in the way I think is best but that is a good thing because I am inherently flawed. Maybe the reason I choose despair is because I feel that if I stay in my fish bowl, I have the right to be angry with God, maybe I will feel better if I have someone to blame. I have been caught in that snare many a time before. The truth is that this path leads to self destruction. It is ok to tell God that you are angry and upset, but it is not ok to blame God for the current misfortune. It is not His fault and He is a loving father who grieves with you and is even more angry about the injustice than I could every be.

I don't know. These are just the ramblings of a little girl who wants simple answers to complicated questions from her Father. I know I won't get all these answers in this lifetime, but this I know. I do not have to settle for a life in the fish bowl. Life only has purpose and meaning when I am doing life with God.. I am in there for a season and the season will pass. But while I'm there, there are whole new journeys to be made and experiences to be discovered. My mediocre fish bowl may have just turned tropical.

Monday, 11 March 2013

Chapter Two

So my two week holiday on the outside has come to an end and I'm back in hospital now for round two. I have had a very restful and enjoyable time off, although bitter sweet at times as I mentioned in my last post. I got some fantastic news on Friday; I was told that I am in remission! This means that the chemotherapy has worked and and the bulk of the cancer has gone. The plan now is to continue with one or two more cycles (after this one) of chemotherapy treatment followed by a bone marrow transplant. The challenge now is to find a suitable donor for the transplant; this is done by searching the bone marrow transplant register. To find out more about bone marrow transplants and joining the register, take a look at the Anthony Nolan website http://www.anthonynolan.org/

Chemotherapy, this time round shouldn't be as physically harrowing as it was the first time because they should have found a combination of drugs that work best for me. I am likely to be in for the same amount of time as last time, roughly five weeks. I have started the chemotherapy regime today and will be finished it by Sunday this week. The rest of the four weeks will be spent recovering and waiting for my counts in my blood to recover. I know what's coming and how it is likely to play out which is reassuring but I think the main challenge for me will be emotionally. It was really hard coming back in today because I had just got accustomed to being free again. But, it is what it is and I just have to trust that God will sustain me one day at a time; He has always been true to His word and will continue to do so.

Time will tell what's in store over the next few weeks, but one thing's for sure, regardless of the storm ahead and the pain I endure, it will be used for good. Stay tuned.

Monday, 4 March 2013

When Sadness Dawns

I am half way through my two week holiday from hospital. I have spent my time sleeping, eating, playing with  the cats, reminiscing with old friends and catching up with my church family. The week ahead has in store much of the same, but it will end with a highly anticipated and long awaited visit from my brother, my sister-in-law and my beautiful baby niece. I am so grateful for my time out of hospital; but I find I am left with a bitter sweet taste in my mouth.

It has been wonderful being on the outside, but no matter how hard I try, the trauma of cancer and the beginning of the next cycle of treatment looms over me. It is like trying to escape from your own shadow. When I wake up in the morning, the ten boxes of pills tauntingly await me. I look into the mirror as I check the tube coming out of my chest to make sure the surrounding tissue is not infected; the fear of infection is never too far from my thoughts. I walk to the end of the road and I'm out of breath; I can't do what I want to do. I talk to friends, and while I am really glad to see them and find out how they are doing, I feel left behind as it seems that their lives move forward and, at best, my life stands still. I then realise that I am jealous of their lives, as I see the things they have that I want, and then hate myself for not being content. Every so often, out of the blue, sadness dawns and I don't know why.

When sadness dawns, everything seems irrelevant and pointless. I try to remind myself of the goodness that God has done in my life and how He is using this for His work, but it seems so shallow and fake. Maybe I use God's work as a crutch, a way to avoid facing the truth and allowing myself to grieve. Distraction has always been my number one tool for avoiding grief. The distraction would normally take the form of something church related so that I could justify the distraction because I was doing work for God. I am even doing it now through this blog. Well, maybe I am and maybe I'm not. This blog does give me the opportunity to talk about God but at the same time it forces me to pin down my thoughts and feelings coherently. If I didn't write things down I would be left with an aura of feelings which I wouldn't quite know what to do with.

So what do you do when sadness dawns? I'm reticent to say this, but I think the answer is grieve. Grieving is different from wallowing in self pity or entering into a hopeless spiral of depression. Grieving is allowing yourself to hurt and allowing yourself to be healed. Grieving gives you an opportunity to turn to God for healing. It may take some time and you may have to go through the process several times for the same issue, but those who hope in the Lord will never be put to shame. But this is all easier said than done. However, the beauty of putting my trust in the Lord is that I know that He is in control of my grief and my healing. I don't have to force myself to grieve in order to be healed. God knows when and how I will grieve and He will be there every step of the way. 

As I come to the end of this post, I am reminded of a particular chapter in The Chronicles of Narnia: The Magician's Nephew. The boy, who's name currently escapes me, is looking down at Aslan the Lion's great paws with tears in his eyes over his dying mother. Eventually, the boy gets the courage to look up into the eyes of Aslan. He sees tears in the Great Lions' eyes and knows in an instant that this Great Lion is more upset for the pain of his mother than He could ever be or imagine. My God feels my pain and grieves for me more than I can ever imagine or comprehend. Nothing or no one could ever compete with such love and compassion that He has for me. It is with this knowledge that my grieving and subsequent healing will begin.

Saturday, 2 March 2013

What Are You Waiting For?

What am I waiting for? Lots of things. For example, I am currently waiting for Button The Cat to vacate my room, more specifically, my bed - "Why don't you just through her out?" I hear you ask in an exasperated voice. I tried that already. I'm not a complete ignoramus. That didn't work out so well for me so I shall wait patiently...then bribe her with some food later - tactics. But there are loads of things I'm waiting for. I'm waiting to go back into hospital and to get back out again. I'm waiting for the results of my bone marrow biopsy and a match for a bone marrow transplant. I'm waiting for the end of this treatment and to be given the all clear in three years time. I'm waiting for the next chapter of my life when I can put all this behind me. I'm waiting to work and earn my way. I'm waiting for love and for a family of my own. I'm waiting for answers and epiphanies. But above all else, I am waiting for the day when none of this matters any more; I'm waiting to die.

Curiously, it is the only item on my list, and I'm guessing yours too, that I can be sure will happen. It is a strange concept, waiting to die, because the idea of waiting for something suggest that there is a desire to acquire what has been patiently waited for. "Good things come to those who wait" they say. Ain't that sweet. Unfortunately, it's not particularly true or helpful. It is a carrot at the end of a stick to stop us making a fuss along the journey. Dying can be a good thing or a bad thing depending on your perspective and world view. But one thing is for sure, we are all waiting to die; the fact that death is inevitability, is irrelevant. 

I hate waiting. Mostly because it makes me wish my life away and stops me living my life now. But then, maybe it's not the waiting in itself that is causing this unsettledness. Maybe it is my need for control and assurance. If I was completely guaranteed that my waiting list would be fulfilled the way I wanted it to be, then maybe I wouldn't be so bothered. Waiting to die does not make me unsettled because I know there is something better after it and because I know it is definitely going to happen. 

So why wait? Waiting forces you to relinquish control because there is no other option. But, more importantly, when waiting is forced upon you it may be a gift of wisdom in disguise. For example, if your three year old son asks you if he can play with your chain saw to help you cut down trees, you would tell him to wait until he was older. It may be that many of the things I am waiting for would do me a disservice if I had them now. But on the other hand, maybe I am made to wait for a completely different and unknown reason. 

So here's the question. Is waiting good or bad? Yes. It is both because it depends on why and what you are waiting for. Some people are professional procrastinators and just need a good kick while others need to pause and consider before acting. The key is to know which is which. I guess the answer can't really be illustrated in a flow diagram, but can be learnt through listening, trial and error, and guidance from people who give wise counsel. Up to this point in my life I have always jumped in cannon ball first without a second thought and reaped the consequences. It is only now (slow learner you see) that I am starting to learn to wait. 

Ask Away Answers

This part of the blog is dedicated to answering the questions you have. Post your questions in the comment box on this page or any Ask Away pages and I will answer them.

Answers For Becki
1. What form of cancer do you have?
I have Chemotherapy Induced Acute Myeloid Leukaemia. So basically, I have leukaemia that has been caused by the chemotherapy I had three years ago to treat Hodgkin Lymphoma. 
2. What can I do to help?
There is always a need for support for cancer. Being on the bone marrow register is a fantastic thing to do because it helps people like me who are waiting to find a match for a bone marrow transplant. Unfortunately, bone marrow matching is not dependant on blood type or as straight forward, but the advantage of going on the list is that it is bound to be of help to someone somewhere. Also, if you can, please give blood. I am B+ but there is always a shortage. If you would like to raise money, the Teenage Cancer Trust would be the organisation to do it for, here is the link http://www.teenagecancertrust.org/
3. Can I send post?
The best place to send post to me would be directly at the hospital because I am there most of the time. The address is:

Stari Gunarathne
Ward 94
Bexley Wing
St James Hospital

ps re cupcake flavour, surprise me!

Answers for Steph
1. Are you going through hair loss?
Yes and no. So I started to lose my hair at the start of the first cycle of chemotherapy, but once the chemotherapy eventually leaves your system after a few weeks, I stopped losing my hair and it started to grow back again. So if you saw me now, you wouldn't be able to tell that I have lost any hair. But eventually, I will most probably lose all of it, but it doesn't bother me too much. Irritatingly, you don't tend to lose body hair, just the hair on your head, so you end up looking like a bald yeti!

Answers for Liz
1. When does the next round of chemotherapy start?
It is most likely to start on Monday 11th March. It will hopefully not be nearly as bad as last time because they have reduced some of the chemotherapy doses and have found out what anti sickness medication works for me. I will probably have to play it by ear in terms of people visiting in the first week, but I shall let you know.

That's all folks! Keep the questions coming!