Monday, 16 December 2013

Letting Go Of Control

I started this post four days ago, but haven't managed finish it in one go. But today, I am determined to at least tell you something. A momentous event has occurred. I actually told the doctors that I have got to the point where I will just allow things to happen as oppose to questioning them at every turn. I told them that I am handing It was, and is such a strange feeling; I have literally handed over my life into the hands of someone else. But it was challenging. I found myself, that even during the night time drug rounds checking the tablets I had been given; they were all fine, but it did bring to light how anxious and unsafe I had been feeling without consciously noticing it. I think the difference this time round us is that I feel safe. I trust the team that are looking after me and I  know in my heart that they have my back. Maybe, this change of perspective has been accompanied with the knowledge and acceptance that long term plans don't really matter anymore. My night sweats are starting to settle now, although I have to be very careful about my speed of movement and how long I stay awake. I have also observed that I tend to get more distressing dreams and hallucinations when I know I have to wake up for an appointment etc.

I've been thinking about this last year and how God has transformed me. If I had the chance to re start 2013 without all this rubbish stuff, would I do it. Would I pay the price? Would I sacrifice my relationship with the God of the Bible? No. The work that God has done in my life is more precious than silver, gold, or any earthly treasures this world has to offer. I know it sounds crazy, but it's true. Once you know Jesus, everything changes.

But it has been a great source of frustration in the process. I was sure that God had been building me up for something, giving me invaluable tools to serve in His Kingdom, to help people, to show Gods love for people. I started to think about the story in the Bible where God has promised that Abraham will have a son called Isaac and Isaac would become a great nation. Then, God tells Abraham to go travel for three days up a mountain and kill his beloved son! Abraham doesn't even question God, nor does he explain his thoughts and feelings. At the very last moment, God speaks to Abraham and tells Him not to harm the child. But then, what was the point in that? There are many reasons, but there is one has struck a nerve with me. God already knew the outcome of the situation. Was it Abraham, Isaac's, or both their faiths that were being tested? I think it shows to Isaac the extent of trust and faith that Abraham has for God. It shows that strength of the link between God and Abraham; you can't piggyback on someone else faith. Abraham knew that even if he did have to plunged the knife into his heart; somehow, God would make it alright. I feel like I'm on that three day journey up the mountain, trusting in God's promise of salvation and knowing that He will make it all right. Another case study. John The Baptist. He spent forty years in the desert, doing goodness knows what. It was only until the very end that his ministry exploded with the fire of the Holy Spirit; I guess he also must have felt quite frustrated. How peculiar, that God should choose this path.

But then came the clincher. It occurred to me that when Jesus was born, He would of spent the first thirty of years of his life learning to be, well, human. His mission only lasted three years. He must have been so frustrated! I bet He must of though that there was so much more he could do if He had a little bit longer time on this earth. But He knew of a deeper, greater truth. He knew, that for in order for everyone in the world to meet Him, He had to leave His physical form and send the Holy Spirit to continue on the work because the Holy Spirit is not bound by time or space.

Thinking about these stories in the Bible has completely changed my perspective on my life, once again. I don't feel short changed anymore. I feel like God is telling me that we are still on mission. The mission He gave me was to live my life in a way that shows how much Jesus loves other people. Not by beating them over the head, or using scare tactics of Hell, but by offering them a free gift, no strings attached. That is my primary mission. There are so many more things I want to do for God's Kingdom, but that is not the task God has set me to do. Everything else will fall into place with or without me. Nothing is impossible with God; seriously, you cant make this stuff up.

When It became apparent that I was terminal, I told my university. If, I'm completely honest, I did feel quite short changed at the fact that I had been in the University of Leeds since 2007 and nothing to show for it. But out of know where, I get a letter saying that they have awarded me 2:1 BSc Hons in Human Life Sciences. It completely blew me away! Prior to this letter, I had just decided to let sleeping dogs lie, because, afterall, I wasn't going to be taking it with me. There was another spin off desire that I have that I thought would never come to pass, given my circumstances, and that was to give some teaching about being a medical student and having a terminal illness; from a holistic perspective - that also seems to be be falling into place without me doing anything extra. This has also had the knock on effect of significantly reducing my perceived pressure of turning this blog into a book. My task is to tell my story, God will choose how He wishes to do that; then I will get to go home.

I was thinking about Christmas time,and how I would be spending it in hospital. Apologies if I've already talked about this before; it is becoming more and more difficult to distinguish between reality and dream state. But there is a melancholic beauty that surrounds this concept. Jesus was born, homeless, in a stable next to animals and their poo. He was born into a mess. But, He was born for people like us. For people who's lives are out of control and their seems that no one can save them from their pitiful squallier. For me, spending Christmas day in hospital, provided I'm not at deaths door, is a privilege; I get to share a small part of that experience with my King.

From early child, I was always mesmerised by the story of the Ugly Duckling. I always considered myself to be fat, an underachiever, and just generally disgusting. But that story gave me hope because eventually that ugly duckling became a beautiful swan. There was a point in my life, after I was recovering from the first cancer and I looked into the mirror and that story popped up into my head and I thought to myself "I've arrived". Finally, I felt acceptable, beautiful, I felt a prayer had been answered. But I look at myself now, and I seem to have reverted into an ugly duckling version of a chipmunk. But I get it now. We all start off as ugly ducklings, because of the sin and evil in the world. However, all is not lost. It is God that transforms us through this life into his beautiful swan; His beautiful bride. It is when we see Him face to face the transformation is complete. This is a little bit random, but hang in there with me. I was thinking about when Jesus says that "In my Father's House they are many rooms, I am going to prepare one for you". I can almost see Jesus in in Workman's gear painting my room and doing a bit of DIY - He was a carpenter by trade, you know.

So how do you let go of control? The key is to follow your deepest desire. Not your deep desire; but your deepest desire. Before, I thought my deepest desire was to be married and children, but there was always a tiny something in the back of my mind that wondered if that would be enough for me. I always longed to be married to have that person would cherish me, never let me go, be faithful, always love me. There is nobody who can fulfil that desire of mine apart from Jesus - He is my deepest desire, and only He can fill that space.


Wednesday, 11 December 2013

Human Being or Human Doing?

I had a meltdown yesterday; not surprising I guess. I hadn't slept properly the night before, when I was moved back into the bay, and I was plagued with horrific nightmares and people obliterating and overstepping my boundaries that I had put in place to help keep myself safe emotionally. I felt suffocated, alone, helpless and completely out of control. 

Once again, the final straw came last night in the bay, when all I wanted to do was cry and scream and shout but couldn't because I was in a public space. They had moved me out of the side room, for managerial purposes, orders from above. Death is ugly and undignified and I thought to myself, "why is it that all my fallen comrades were able to die with dignity and in peace while I have to suffer this humiliation?" There is a reason why I am on the "fast tract" pathway and it is because I am going to die very soon. As far as I am concerned, there is no other higher trump card than that. I was so distraught, but what can you do. It is so painful to be told that you are the "top priority" when being treated in such a way. I hope, that those who managed beds will read these words, and when the time comes for them, remember them.

The other main source of pain for me is seeing visitors, reading texts and emails. As I've said before, my eyesight is failing and it is really difficult for me to look at screens. Thankfully I can just about touch type but it takes a lot of energy. I really appreciate your words of kindness and they do build me up, but it would be better if people could send me cards so that someone could read them to me. The address is:

St James's University Hospital
Ward J94,
Level 5
Bexley Wing
Beckett Street
Leeds 
LS9 7TF
Tel: 0113 2069194

I've got to the point where I can't plan in advance to see visitors. So if you do want to visit one day please phone the ward, tell them your name and if your from, church uni etc, and the nurses will be able to ask me. Please don't contact me directly, to arrange visits due to my eyesight and the amount of time I spend sleeping, as I wont reply.

I long with all my heart to see you all but on each encounter I am acutely aware that it is likely to be my last encounter you. Each time, it is like having a dagger rip my heart to shreds and I can't take it. I am currently walking a tight rope of not knowing when I'am going to die and entertaining a small hope that I will be miraculously healed without falling into the trap of false hope. But it's so hard. It's so hard, to constantly submit yourself to God and say "I trust you and no matter what happens you will make it alright somehow". Constantly, relentlessly I have to tow that line and I'm tired. I try to live each day for moments of joy and peace, but they are short lived as I dread to peer around the corner for the next thing that will rob my peace. Every day, I have to get use to a new routine, as I realise that my body will not function as good as it did the day before; their is no stability, no reference point, no scaffolding from which to work on. Night is day and day is night. How long can one endure such torture?

I wrote in one of my very first blog posts about how, through all the trails, troubles and despair I have faced, God was preparing me for something that would draw on those skills. I half jokingly commented that I wonder what on earth He had up His sleeve that could be worse than all that I've already been through; well, now I know. I just can't believe how things have turned out. I can't believe that over the last year God would transform me in such a way that I would have the toolkit to help others for His Kingdom, and then, at the very last minute take it away. One of the blessings about living with lots of different families over the last year is that I got to experience how to do life from multiple perspectives. As far as I was concerned, this counted as my training for when all this was over. 

But oh what a waste it all seems now! What is the point! I have lived my entire life striving to do what is right, trying to learn, trying to be more Christ like. And for what! For it not to be used. I have so much left to give and it kills me that I can't deliver. I have never been content just being, I want to be doing. But maybe that is the lesson that God has been trying to teach me my whole life. I need to be a Human Being not a Human Doing. Maybe, the only lesson He has been trying to teach me is that He loves me and wants to be and rest in Him. I am dispensable. God's will and His plan will prevail regardless because His power is made perfect in our weakness. But why can''t I be a part of the vision to come; I feel so robbed, so let down, so cheated. I don't know. I'm grieving and  it hurts intensely. But then, it all comes back to towing that line of tension of trust and submission, despite the outcome. Faith and hope comes from knowing that God has saved us for eternity; not from death in this life. If there is one thing that would bring joy to my heart, it would be to know that this simple truth has been engraved on your heart also. There is only one God; in all situations, turn towards Him.

Tuesday, 10 December 2013

Visiting Info Update

Hi all,

Just to let you know, I'm in the bexley wing st James, level 5 ward 94 and the phone number is 0113 2069194. Visiting hours are very flexible, but it is easier for me to have visits between afternoon/early evening hours of the day. I do really want to see you but I will only be able to manage 30 mins max  in one go due to energy levels.

Monday, 9 December 2013

Visiting

Thank you so much for your love and support. It's got to the point where I get very exhausted seeing visitors and it's really unpredictable on the day for me to make plans. Tuesdays will be the day where I won't have any visitors. The best thing to do is if you want to see me is to phone the ward on the day and ask them if I am up to visitors, which would then give me the option of saying yes or no. It's easier for me than checking my phone cause my eye sight is fading. I'm so sorry it has to be like this because I want to see you but don't have the the energy anymore. Thank you for your love and prayers. 

Sunday, 8 December 2013

The Next Step

I think it's time for an update. My health is deteriorating much quicker than I first expected and so I was admitted into on thursday evening. To be honest, going by the way I was feeling then, I'm not convinced I'm going to make it into 2014. My gut feeling is that it will just take one more infection to finish me off. I have had a bag of platelets and two units of blood, and feel better for it. This, of course, skews my perception of my prognosis and how long I have left.

I am back in hospital on ward 94, and I will remain their until I die. My main symptoms are fatigue, shortness of breath; but thankfully pain is under control at the moment. It is getting to the point where I need more medical intervention to keep me comfortable, which is one of the reasons I have decided to come back in. Plus, dispensing my medication and juggling care in the community was getting very difficult and causing an unnecessary amount of stress. My sleep pattern is still quite poor but, hopefully it will improve when I start to get more of a routine in place. Sleep deprivation is a killer, please pray for refreshing sleep. Being in hospital, also means I can use the little energy I have to do things I like to do, rather than spend it on travelling time to the hospital. I am allowed to go out of the hospital so I am planning to use this as a base and have the odd outing now and again.

A Christmas interlude. It has just occurred to me that, God willing, I will be spending Christmas day in hospital. At first it was quite a shock, but I actually think I like the idea mainly because I have never done it before and its somthing different. I have always struggled with the commercialised Christmas; it really grates on me because it seems so superficial. I've always liked the idea of maybe spending one Christmas day helping out in a soup kitchen or something like that because Christmas is what Christ did for us. I think there is something beautiful about being together on Christmas day, with other people who know that life shouldn't be like this, but standing firm together regardless. After all, it is the sick who need a doctor, not the well, and that's what Christ  came to do. He came to make the sick well.

I had my photo shoot yesterday; thank you to everyone who came along, it really meant a lot to me to capture those memories. I must apologise to those who came after the shoot had ended - I was under the impression that we had more time, but the photographer had only been booked for an hour, I'm very sorry about that, but thank you for making the effort. I don't know how I had so much energy yesterday, I can only thank God for His favour. I don't normally look that energetic. It's a tiny bit frustrating because, on the outside, I actually look well, but I feel far from it. Sometimes, I wonder if it would be easier for myself and other people to process if I just looked how I felt. But, at least this way I should get some nice pictures. It was a very enjoyable experience and I was truly happy, at peace and content. Thank you for making that possible for me.

When I think about it, the idea of having a photo shoot is very bizarre. I am not one for posing in photos, in fact I find it quite embarrassing. I was quite surprised at myself for actually wanting to have a photo shoot done. But as I reflect on it, I think I know why that is. I think I just wanted to do something completely random, out of character and different. I'm not going to take that photo album with me, but at least I can say I've had the experience. Another interesting observation that I made half way through the shoot, was that there was a paradoxical egotistical quality to having a photo shoot in the church. Church is about God and not about the individual; however, it is also about community and people coming together. In a happy accident way, I think that ethos may have been captured. I guess, the whole experience was also very reminiscent of what would happen at a wedding. Even though I was not getting married, the shoot was a microcosm and a taster of what it will be like when Christ comes back to collect His bride, the church.


Monday, 2 December 2013

The Bucket

People have often asked me if I have made a bucket list. But, to be honest, I haven't given it too much thought. But, in fairness, over the last year, I have managed to inadvertently complete a bucket list. I learned to knit, crotchet, start to learn to play the and the ukulele, paint pottery, see some sights, pat some horses, meet my new niece, meet and walk alongside people I have never met before, live with multiple families and be involved in family life, write a blog, and generally just get in touch with my creative side amongst other things; whilst having a few laughs along the way. I don't think I've done too badly. But now, the situation has changed. In theory, there are things that I would like to do, for example, go to the beach, but the problem is that I just don't have enough energy. I do get the occasional wave of inspiration and excitement to go and do something, but when the time comes, I have no energy to actually enjoy the activity and all I want to do is be in bed. 

I think part of the reason I am not to fussed about seeing and doing things is that I know when I get to heaven I will be able to see and do all those things again, but they will be much better; in fact they will be perfect. At the moment, my number one priority is to be comfortable and at peace. As I said before, I don't have much energy, but I do really enjoy and find fulfilment in being at peace and having family and close friends around me just for a quick ten minute chat until I fall asleep again. I guess, for me, my bucket list is about relationship rather than places. Strangely, I get quite a lot of satisfaction from writing these blog posts and letting you all into my life in real time. I feel like I've achieved something, even if that something is just to encourage you. 

I like having mini projects, I guess its just part of my personality. I've decided that I'm going to turn my blog into a book; the only thing that is holding me back is fatigue. I find it very frustrating that I spend most of my time during the day sleeping and that I can't utilise the time that I have in the way I would want to. But I guess, its all part of learning the new process.

Where is my faith at the moment? It's in a funny place. I don't feel far from God but at the same time, I don't feel super close. I just wish I new how long this period is going to last for. It's so hard, living each day by day, fighting with your own emotions and the emotions of others when you don't know where the finish line is. This is the toughest endurance test I've ever had to take, but God has trained
me well.

I went to visit the hospice the other day and I have decided that when the time comes, I would like to die in the hospital instead. The hospice is very nice and the staff are amazing, but it did hit me that all the patients were old and I would have to make new relationships with the staff; I just don't feel like I have the energy to do so now. Neither option is perfect, but I think, for me, it is the lesser of two evils. 

It still is strange talking about dying, mostly because I am aware that the people I am talking to aren't on the same page as me when it comes to this grieving process. One thing I have noticed though is that people will always tell me to have faith and hope. It is an interesting concept, faith and hope, that is. It is interesting because the real and more important question is "where should the object of my faith be rooted in?" "What am I asking for faith and hope in?" My faith and hope are firmly rooted in God, but that does not mean that I am praying and asking God to keep me alive. Having faith and hope in God is knowing that your salvation is safe. I know where I am going; we've all got to die at some point and of something. For me, that is what it means to have faith and hope. 

If I am to be completely honest, it is too painful to think about God healing me; for me, there is nothing worse than false hope. As far as I am concerned, even though, I'm out in the community, I'm not getting better, my symptoms are just different, and I am going to die soon. A part of me just wants to get it over and done with it. But as always, it's not my will but His that I want to be done; I just wish it wasn't so painful. 

This life is just one drop in the ocean. This story is not about me, it is about Jesus Christ who saved me. It is about making His name known as Lord, God and Saviour. I have been put on this earth to do the task that he has set out for me to do; no more, no less. I feel that my mission is to be a faithful Christian and be honest to the many people around me about what it is like to know God. God didn't tell me how He was going to do this, but I believe that through my blog and the people that I have met, He is accomplishing this task. It doesn't matter that I potentially have so much more left to give. God loves me and He knows how hard this life is; I want to go home and have every tear wiped away from my eyes and here Him tell me "well done good and faithful servant; welcome home my child".


Saturday, 30 November 2013

Why Should I Wait For True Love?

Because I'm not dead yet. This post, potentially will turn out to be one of the most open, honest and explosive pieces of writing to date. Anyone who has two brain cells that they can rub together has an opinion on this topic regardless of their beliefs or moral code of conduct. The topic: Sex. I am aware how thorny this issue is and as I write this post, I am mindful of other peoples feelings, views, hurts and heart aches; the last thing I want is to add to your burden. The first thing I need to say, is that I am writing from my own perspective as a Christian. I do not see or judge people differently if they hold or live their life in another way. The issue for me is always, "do you know Jesus?" not "you shouldn't do this or that". The way someone lives their life automatically becomes different, because God changes your heart, when you meet Him. The question is not "how good do I have to be to get to heaven?" but "how close a relationship can I get to have with Jesus to enjoy Him". So I write this post to you purely from my own experience to give you another insight into my life. As I write, I pray that the Lord will draw close to you and heal up any painful experiences that you may have had to endure. Here goes.

I am twenty six years old and I have never had sex, and now, most probably never will. This one simple statement by its self already throws up a thorny number of questions. What counts as sex? Is sex, actual penetration? Does it include foreplay, does it include kissing; if so where? This is a question that has always baffled me. The Bible uses the term sexual immorality, which is pretty much a junk drawer term for all things that you do which are sexual in nature outside of a married man and wife relationship in the eyes of God. Fair enough in one sense; although, what does that mean for today in this age when it comes to courtship and dating. Culture has changed and it is arguably no longer the norm for people to be betrothed in marriage from a young age.

I have battled with the question of what counts as sex for many years, until I had a change of heart. The question I was actually asking was, "how close can I get to the boundary and still be ok?" It is kind of like playing that rather dangerous childhood game of "chicken" The idea is that you wait on one side of the road and then you run across to the other side just before a car comes without getting run over; the winner is the one who makes it to the other side. To put your mind at rest, I have never played that game for fear of death. Back to the plot. The question I now ask myself is "how far can I stay away from the boundary to enjoy a relationship with a potential spouse while having an enjoyable and life giving relationship with God at the same time.

For me, the answer is simple in a way, but needs to be exercised with caution. Would I do what I do if my parents were sitting in the same room as me? Now, if you asked me that kind of question a few months ago, I would say that I would have my boyfriend sitting at the other side of the room and I may exchange the occasional hello with him in the presence of my folks. But my relationship with my folks have changed in a massively positive way, where I would be more comfortable being with my boyfriend around them. But the most important question I ask myself is "how does my actions behind closed doors influence my personal relationship with God?" Do I feel ashamed, guilty? Or do I feel happy, at peace and blessed? Now this is where it gets tricky and I find I really need accountability. It is possible to repeat an action many times so that it doesn't way on your conscience and bother you anymore; you can effectively lie to yourself and make it seem ok. This is why, for me, I have tried to put up my own boundaries before getting into a relationship.

I love hugs and I am a very tactile person. But I told God, to honour Him, I would not kiss my boyfriend on the lips before we were married. To a lot of people, that will sound incredibly extreme; and I agree it is, which is why, I would never enforce that on any other person. But for me, in order to stay pure and not get carried away I need to be very strict with myself, because above all, I live to serve God. So no, I have never had sex; but I have crossed my boundaries, by my own doing, more times than I care to remember. When this has happened in the past, I was always left with a sense of shame and its horrible. But God is a loving and forgiving God and He sees my heart; I take comfort in knowing that He forgives me and continues to love me despite not being able to control my sexual desires.

I have chosen this life for myself not because it is laid out in the law of the Bible, but because God is my first and my True Love and it brings me great joy to live a life that is pleasing and fragrant to Him. But how I struggle. All my life, since my childhood, I have dreamed, longed, yearned to meet my soul mate to hear those special words, when he looks into my eyes and is focusing only on me and tells me Stari, I love you. Even though, I have in the past given my heart completely away, those words have never been or will ever be uttered or even whispered to me and it cuts me so deep into my soul its unbearable. The one thing I ever wanted, will not come to pass. I long to be in that embrace, to experience that touch and warmth, but it will never be. I often asked the question, what is wrong with me. I could never understand, why it seemed so easy for other people to become a couple but not for me. I guess, in hindsight, given my imminent death, it is the kindest way out of a horrible situation to die single than to have another loved one tormented by this ordeal. It doesn't make it easier though.

The high esteem I held relationships to in the past was very damaging to myself and needed to be broken. For me, having a husband would solve all my problems, it was a way to escape my life horrors. My husband would take care of me, love me, never leave me or forsake me; thats what I thought. Having a husband became my idol. The only problem is that there is nobody on the earth that can fulfil that role apart from Jesus Christ Himself, because we are sinners. I once heard a preacher say that when he conducts a wedding he always tells the couple that there are only two problems with marriage; if you get over them then you will have the perfect marriage. The problems are the man and the women. Both are sinful, both are going to hurt each other and unless you know what to do with that sin hurt and pain, your marriage will fail. That is why it is so important to have Jesus in your marriage, because He is the one who forgives sin and He is the one who heals pain. We can't make marriage work by our own strength; we need our Saviour and His name is Jesus Christ.

So given that I am not going to be married when I die, why don't I just go out and have sex, so I can experience at least some part of this unknown pleasure? I'm not harming anyone after all am I? Well, I am actually harming myself. Sex is not just physical; it is emotional, physical, spiritual and psychological. God designed sex and He designed it to be pleasurable. But that pleasure was designed to be enjoyed in the safety boundary of marriage because that is where true intimacy is found. I am looking for that love and intimacy; I am not looking for carnal sex because that would be soul destroying, I would feel worthless.

In heaven, there will be no marriage. I'm not sure how that quite works, but I trust Jesus, and He says that there is something better than human marriage. He says, that being the bride of Christ is better than marriage on this earth and I trust Him. That is why I will wait for my True Love.

Thursday, 28 November 2013

To Live Or Not To Live? That Is The Question

Part of the end of life care process involves making decisions regarding if you want to be resuscitated or "brought back to life" in the event that your heart stops working. This particular form is called a DNACPR, which stands for Do Not Attempt Cardio Pulmonary Resuscitation. I have learnt quite a bit about this process during my medical training, but never thought I would be faced with making this decision at such a young age.

Incidentally, I have signed the form instructing the doctors not to resuscitate me, but the gravitas of this decision hit me on monday when I was facing the potential hickman line readjustment procedure. It occurred to me that, if by some freak accident, my heart stopped working on that operating table, that I would die then and there. I had previously made my wishes explicitly clear to the palliative care team that the DNACPR was only to be enforced in the event that the cancer was causing the death, but I became acutely unsure on that operating table whether or not the current team of doctors were aware of that.

It made me rethink whether or not I should withdraw the form. On the one hand, I don't really want to die just now, but then on the other hand, I want it in place for when I do die. To be honest, I just want to die peacefully in my sleep with my friends and family around me.

In some ways, it feels wrong to refuse treatment at the end of life because it feels like I'm taking my life into my own hands and not giving control over to God. But, it is God who knows how many days I have left and it is Him who will come to take me home, I just can't wait to see Him face to face. My hope and joy comes from Him; today my heart is glad. 


Wednesday, 27 November 2013

Heart Thoughts

It would seem that technology has beaten me once again. I have made three attempts to upload a video blog, all with futile results. I wanted to do a video blog because it is getting to the point where typing is becoming more of an issue due to my not so great vision and energy levels, so please be grammatically lenient when you read these posts as I cant really see what I'm doing.

I think most of you will already know by now, but thankfully I didn't have to have my hickman readjusted on monday - somehow it just automatically flipped back into to place by itself. I was so thankful and grateful not to have to endure further pain. I got to come back home, i'm in headingly now, on Monday and was very grateful. The transition has been difficult because I have struggled a lot with symptoms of night sweats and bloatedness, plus not being able to sleep through the night. They have also put me on steroids which means I feel more bloated and have gained weight around my abdomen and face - I have proper granny pinching cheeks now! 

It's little things like that which start to pile up and get me down. It is really hard to accept that I'm not getting better and that I have to adjust day by day to a  potentially worsening quality of life. Care in the community is very different to that in the hospital; there are lots of people coming and going to check if your ok; which is great when your living on your own and pretty much need full time care. But its not so great when your like me and semi independant; I start to feel a bit useless. 

I went to visit the hospice yesterday, which is where I had originally decided that I would like to die. It is very nice, but I have changed my mind. I want to die in the hospital back on ward 94 - I started my journey there and I want to finish my journey there. I know the people, and even though the hospice staff are brilliant, it is not the same; plus there is no one there who is my age.

It's very surreal thinking about dying. The acceptance part is hard. It almost feels that this period of time is pointless; I feel like I don't really have anything to live for. Part of me wants to just die and be done with it, but part of me still wants to be with people. I find that I'm not very motivated at the minute, which I hate because I like planning and I like having things to look forward to, but there just doesn't seem much point anymore. I just wish I had a bit more energy.

One of the hardest parts of accepting that I'm dying is knowing that I'm not going to be able to be married or have kids. If I'm honest, I do feel cheated. I feel like this was a desire given to me by God and just when I think that maybe it could happen, it is taken away from me. I keep thinking of all the stories in the bible of women who have been barren or had a horrendous life, but it would seem just at the very end, God would swoop in and save the way. I often wonder if this is my story. But it is hard not to get false hope. Everything is held in tension and it is learning to live in that tension knowing that God is a loving father and has my best interests at heart that is the struggle. But that's life.

I did do one thing to make myself feel better about the whole situation. I got myself a ring. I have always wanted a ring and the fairytale wedding, and I thought to myself, why cant I have a ring to symbolise that true love waits? Granted, I'm no longer waiting for my husband and soul mate but I am waiting for Jesus to take me home. So, I have a ring and I am proudly wearing it on my left hand. It was very emotional putting it on, but I'm glad I did it.

Please pray for me. Please pray that my hope and joy comes from God and that He gives me energy and comfort. I miss you all, but know that you are in my thoughts and prayers. Till next time.

An Answered prayer

As most of you will know, I was supposed to get my Hickman line adjusted today because it was in the wrong place. But thanks be to God that it has moved itself automatically, which means I didn't need the op! 

Friday, 15 November 2013

Going Home

My dear friends, for that is what you have become to me as you've walked theses last 11 months with me. This is day 114 post transplant it is probably the most coherent one I have written over the last four weeks of this hospital admission.

Please allow me to attempt to explain the madness of this current hospital admission. I was admitted into hospital four weeks and two days ago, Wednesday 16th October 2013, with a severe case of tonsillitis. Initially, when I went in, I only expected to be in for a few days, one week tops; but as it transpired, this was not to be thee case. I was severely ill for a a week for a week, unable to eat or drink anything, while having to contend with raging temperatures and aggressive rigours. The infection was not responding to to any of the antibiotics, and blood cultures weren't growing anything. I can't  tell you how hopeless I felt at that point. Eventually, I coughed out a large ball of pus, which was bigger than my actual tonsil, which then grew three different types of bacteria which meant the infection could be treated strategically. 

I thought, that this was the point where I had turned the corner, but how sadly was I mistaken. While some of my symptoms, had started to resolve, new ones, had started to rear the ugly head, namely vomiting. Despite not having to contend with the pain of swallowing, I could not keep any food or liquid down, invariably, vomited the contents violently back up. To make matters worse, due to the high pressure of vomiting and low platelets, I had caused a bleed in the retina of the back of both my eyes and my optic disc was swollen, which has made it very hard to see until today. Seeing is still difficult, but it is improved day by day.

I could not understand why my symptoms were not getting better. The doctors kept telling me that I am doing better, with regards to the tonsillitis, but I felt like I was getting worse. It was a little over a week ago now, when I was given the first "warning shot" so to speak. When you get to day 100 post transplant, it is protocol that a bone marrow biopsy should be down. Now, up until this point, I had been refusing the biopsy on the grounds that it was protocol, the one from day 30 went very well and I was still currently in real discomfort. But it was then when the consultant revealed a tiny bit of information that changed everything. They told me that they needed to do the biopsy as soon as possibly because there is a real fear that the cancer has relapsed and come back. If it is a relapse, there is nothing they can do for me, I will die. 

It was in that week, that I got all my family to come down here. Literally, within the hour of the phone call, they had left Aberdeen in the middle of the night and were on their way to be with me. I cannot, possibly express sufficiently how grateful and relieved I was to see them. There were, a few times, during their visit, that it felt like this was it and we were saying goodbye in this life to one another. I got to meet my newest niece for the first time, which was a completely beautiful experience. My only regret is that I didn't have enough energy to play with them. But they will be down again soon. I had some beautiful moments with brother and sister-in-law which I will cherish for all eternity; likewise with my parents also, which I never would have expected in my wildest dreams - God answers prayer, He just doesn't tell you how He is going to do it.

A week later, now to present day, I have those results. The cancer has come back and I am going to die soon. They have given me a rough estimate of time scale of about three months; but it could be more, equally, it could be less. I have so much to share with you about how I'm feeling, how it feels to know that I'm dying, how it feels to know that I will be leaving you all behind; but that is for a post in the near future. But please, be assured, that despite everything, I am at peace. I have the peace of God that transcends all understanding . I am happy. I am free. I am going home.

Saturday, 2 November 2013

Eh?!

Today is day 101 post transplant, and I feel very far from celebrating. I have had a really rough couple of days with high fevers. The antibiotics that I'm on have improved/almost cleared the tonsillitis infection but it still isn't touching temperature. What's more, now that I am no longer delerious and hallucinating, once again, I am finding holes in the very basics of my treatment. I feel very rough, but at least I haven't vomitted. Given my (controlled) eruption last and today, I find that are actually listening to me and not treating me based on body systems but as a hole. It would seem that this stint in hospital has not been as plain sailing as I had initially naively assumed it would be. Will keep you posted when I can.   

Thursday, 31 October 2013

What Happened?

Appologies to those who haven't heard, but I've been in hospital for the last week. I was very ill with a severe case of tonsillitis, and the doctors have taken a while to start to get ahead of the infection. I am, very slowly getting better., but I'm still unwell, I would say on average, I sleep for 10 hours a day. But over the next little while, I shall share this tale of woe with you all. I hope to write something tomorrow, but I will see how I, I think tomorrow is day 100 post transplant. But then again, I'm not cognitively awar enoughh to make  that judgment. We shall see.

Monday, 21 October 2013

Did Ya Miss Me?

It feels like it has been a long time since I've written any posts, well, it probably has been. Today is day 86 post transplant. The weeks seem to blur all together, but a few things have happened in that time. I moved house again, shortly after my last post and I'm settling in very well. 

Healthwise, things are progressing nicely, my blood results have generally been fine, although still struggling with the drinking two litres rule. However, I have had a few niggling issues. I've got a bit of a viral infection at the moment, nothing too serious as it does not need to be treated. Unfortunately, it has completely wiped me out; hence my lack of blog posts. Nothing too dramatic, just an ear infection accompanied by complete and utter exhausting; but generally, the symptoms are getting better although some days are better than others. Annoyingly, this has made the headaches worse, but they are currently under control at the moment. 

Inconveniently, my joints have decided to test my patience; left shoulder, right knee, I'm talking to you! They are very painful which is making mobility an issue, plus my left elbow is attempting to join the band  wagon. I must say, for those who cope with joint pain on a day to day basis; I take my hat off to you, you are a picture of endurance. To add to my list, I am getting skin pain over the back of my shoulders, back of my arms and palm of my hands. There is no rash to be seen, but I think I'm experience either neuropathic pain, similar to the episode a few months ago, or it is a mild form of Graft Versus Host Disease. The last minor inconvenience I'm experiencing, is an inability to control my radiating body temperature. I think I may be experiencing hot flushes but I'm not sure its severe enough to be classified as that; plus, it isn't apparent to other people because I don't turn red so its difficult to asses. Most of these symptoms which I've described haven't been reviewed by the doctor as of yet, however, after a despairing look from my pharmacist friend, I shall endeavour to tell them about it tomorrow.

I've just read the last paragraph back to myself and I've realised that it is quite a long list of ailments, but really, its not so bad; it would take quite a lot more than that to knock me off my perch. Pain is relative; I guess that's one of the silver lining blessings from this whole debacle, the smaller things don't bother me as much. But then again, the down side to that is that I'm less likely to tell the docs about them because I don't perceive them to be much of a problem.

So yeh, generally i'm in good spirits. As usual, the hospital visits are tiering but hopefully the frequency of them will reduce soon.

Saturday, 5 October 2013

Oh Little Star

Last night, out of nowhere, I had the sudden urge to pen this poem. Which was slightly untimely since this desire hit me square between the eyes at 11:30pm - I have strategically made this post public at a reasonable time of day so you will not know how late I stayed up. 

This experience was very strange and slightly bewildering. I picked up a pen and paper, which I never do anymore, and just started writing, I have absolutely no idea where it came from.  I have never been keen on poetry and I haven't written a single poem since I was at school. In fact, I'm not even sure I remember how to write poetry. I am completely dumbfounded at the fact I've written a poem. I'm sure there are a multitude of poetical errors present, but nevertheless, I hope you enjoy it.

Oh Little Star

Oh little star, why so downcast?
Shine your beauty so bright, surely that will last?
Oh little star, what have we here?
An arrow pierces your heart and fills you with fear

Oh little star, see how you fight!
Fight you will, with all of your might!
Many have come to put out your flame,
But guarded are you, by the Holy Name

Oh little star, this fight has begun,
And weary you seem, so nearly, nearly done,
Attack and attack you must face,
But there is One, who overcame all through Grace

There is One, no stranger to pain,
He gave His life, so today you may gain,
A little piece of Heaven, a life that is free,
Because of His love, your light will always be

Oh little star, you must decide,
To face these troubles on your own, or with Him by your side,
Oh little star, do count the cost,
For then you must carry, your own Cross

Silly little star! How black the night sky!
Your little light will surely die!
Match you are not, for darkness prevails!
Down, down, down you go through the deadly veil!

Oh little star how true that would be!
If Saviour you had not, who died for you and me!
Pain you will feel and suffering there will be,
But perish fear not, for Jesus claims Victory!

Oh little star, be not downcast,
The love you've been given, will forever last!
Oh little star, the day draws near,
When He will come, to wipe away every tear

Oh little star, what glorious day we shall see!
When home we go, and meet He that made us be,
And when we see Him face to face,
It will testify, that we were saved by Grace.

Friday, 4 October 2013

Bittersweet

Today was clinic day and it is day 69 post transplant. The appointment was fine, nothing new to report, which at this stage, is a good thing. However, today was more draining because, once again, I didn't sleep well. I guess the strain of the whole experience is getting to me a bit at the moment.

Question. How do you kill an extrovert? Answer. Put them in isolation and then put them under house arrest. This week I've been struggling with motivation. You might ask, why do you need motivation when technically, you have nothing to do? Yes, well, I was under that same illusion, but as it transpires, when I lack motivation, I become depressed. It doesn't even have to be motivation for huge projects. Just little things like finish knitting the baby booties for niece number two, Ariabella Faith Gunarathne. Ariabella, which means prayerful, was born on Sunday 29th September 2013, surprisingly on her due date. Apparently, this one cries; it would seem they have got a real baby this time unlike Elliana Grace, meaning "God answers our prayers", who is so well behaved that she could pass for a doll! With regards to the booties, in my defence, even though it has taken me months to complete such a small item, I am now actually on my 4th bootie - the first one didn't look right, the second one was fine, the third one was fine until I sewed the cross over flaps the wrong way round which meant that I had two left booties; hence bootie number four.

It has been a week of mixed emotions, but things are maybe looking up? It's just frustrating that when I seem to be getting into the swing of things, something seems to knock me back again. But I guess its part of the process, its that good old bumpy road again. The Elders meeting for our church was held here last night. They where here for ages! Goodness knows what they were talking about. They wouldn't let me stay and chat for very long, something about avoiding crowds and not overdoing it, but I think the real reason was that they wanted to start playing monopoly - why else would a meeting go on for so long? Although, I would never say that to their faces for fear of not be able to run away quick enough...yet. I was so excited and happy to see everyone, I literally felt like an excited puppy! 

But once again, it was bittersweet. It reminded me of what it would have been like in biblical days when someone would get an infection and they would have to stay outside the camp so that it didn't spread. The only difference is that, this time, it is for my own protection. But even though I am blessed by people visiting, it is a lonely place to be. I hate not being involved. I never thought I would say this, but I hate not being able to go to church meetings - that's how desperate the situation has got! I just want to start living my life. In my head I know that my last statement is incorrect for a number of reasons but my heart doesn't believe them, maybe my heart doesn't want to believe them. But it's not long to go now; I have about a month left of my house arrest sentence, but there is still fear associated with the freedom that will follow. There is always the fear of infection, and the fear of developing Graft Vs Host disease once I come off the immunosuppressants. I feel so close to the end point, the point of safety, the point when I can say that this is all over; but at the same time these fears always seem to move the goalposts at the very last minute.

I have felt far from God this week; well further in comparison to the last nine months. I think its because I've been avoiding talking to Him about what is hurting me; I just don't want to cry anymore. It drains me completely and leaves me empty. I just want to be happy. I want to escape to a different world. It is a world where I am in control, where only good things happen to me, where I craft out my life. However, it is a world where God refuses to be present, or maybe I refuse Him entry, and that is always the part that kills the dream, that leaves me with despair, that brings me crashing back to this world full of pain and suffering, but with God. Something inside me hates to admit this, but it is much better and fulfilling to live a life of pain with God, than to create my own perfect world without Him. It always brings me back to the same place, I cannot live without Him, He is too important too me; when all is lost, He is still there and that is more than I can say for my "doll house" of a world. 

I know that I have been through much pain and grief over such a short period of time. I know that the only way to heal is to revisit these issues a little bit at a time over many years, because the pain is too intense to deal with in one shot. But each time an issue comes up, that I have grieved about before, I cant help but feel exhausted and a sense of failure. Once I have grieved, it always feels likes I've managed to complete a task, I've managed to tick a box. But it is not the case. 

When I was growing up and even into my earl twenties, I never dealt with any of the pain and grief I experienced because I didn't see the point; it wouldn't change the outcome. I just needed to put it away in a box and get on with things. I did myself a great disservice. What I didn't realise at the time was that I was not a machine with the soul purpose of achieving outcomes. I didn't know I was more than that. I didn't know that I was a person. I didn't know what I was worth in the eyes of my Creator. But, now that I know who I am in Christ and how much He loves me, everything has changed. Healing from the past and present is happening. I once didn't see the point of being healed, but I now know that I was living in shackles, I was owned by my grief and my circumstances. I never accepted that because I was under the illusion that I was in control of my life, I was able to keep spinning the plates without letting one drop. However, history tells a very different story. It tells of a lost, struggling, sorrowful little girl who convinced herself that everything was alright in order to survive because she didn't know that there was someone who could or wanted to save her from her pitiful existence. 

It is a painful business, healing is. I quite often set the agenda with God about things I want Him to heal in my life, but thankfully, He never agrees to it. He chooses the item, He chooses the time. Sometimes, the healing will happen after a horrid nightmare, sometimes it will happen through reading the Bible, and sometimes it will happen through a faithful friend who can see past my facade. But what ever way it happens, God is in control and there is no safer place to be than in the palm of His hands.

Sunday, 29 September 2013

When Words Are Not Enough

Generally, I find it relatively easy to put my emotions and feelings into words. But the post I wrote yesterday really challenged me. I could not find the words to express my grief. Last night, I rediscovered a part of me that I had lost, a part that I had forgotten, I part that I had ignored. It is the way my soul connects with dance and music. I am not a dancer, nor am I a musician. When I was a child, I went to ballet class but, I was bad at it and hated it, plus I was too fat. I also had keyboard lessons and, as I said in a previous post; or on facebook, I can't quite remember now; I had never played the piano which I am now learning to play along with the ukulele. But my limited experience in dance, music, sport and self defence has taught me some valuable lessons. They taught me how to move with fluidity, or with sharpness, but most importantly, with a natural rhythm. But there was something about dance and music that I hadn't quite appreciated, that is,  until last night. There is something about dancing and something about playing music that brings me into a different world. It is a world where there are no limits, it is a world where you can get lost in and still be safe, it is a world where I can be me in my rawest form, it is a world that is perfect. 

I had forgotten how much I loved to dance. It was only when I decided to vary my exercise regime to include dance to work on specific muscle groups instead the standard gym routine. But something happened. Something changed. I felt myself connect and suddenly my brain wasn't in control. My emotions, my hopes and my dreams were being poured out through my dance. It was a painful but beautiful feeling. I probably looked ridiculous, but I didn't care, there was no one who could see me apart from my God. It was through the act of dance that I was able to laugh, to love, to hope and to grieve freely. In someway, I know not how, dance enabled me to give my emotions away, I was able to let go of my burden. 

When I finally stopped, my intended hour of exercise had turned into two and a half hours; but for me, time had stood still, there was no concept of time in my mind. As I stopped to reflect on what had just happened, I knew that this experience was healing for my soul. It was completely unexpected, but it was beautiful. It was a precious gift that I will cherish.

Saturday, 28 September 2013

A Hard Week

Today is day 63 which means only 37 days left to go! I had my usual date with the clinic yesterday and so far so good. On Tuesday, I was threatened with IV fluids because I wasn't drinking enough and my kidney function was off. But yesterday, those sets of results hadn't come back yet and they haven't phoned me since, which I take to mean that I'm off the hook. In my defence, drinking two to three litres a day every day is really quite hard work! I'm only little! All my other blood results are in the normal range and they are very happy with the progress. 

However, this past week has been quite tough. The docs wanted me to reduce the paracetamol that I was on because the headaches that I was having hadn't occurred for a while.  Reluctantly, I followed their instructions, much to my own surprise, and lo and behold, the headaches came back with a vengeance. Of course, I immediately returned to my original regime, but it was too late as far as the headaches were concerned. If I take regular paracetamol, the headaches are kept at bay, but if I stop or reduce the dose then they will come back and take longer to get rid of. Which is why, for most of this week, I have spent it in bed, completely wiped out. But, the headaches are getting better now, they are still in the background but soon I wont feel them at all. 

To add to the misery of this week, I started to have menstrual pain. I feel slightly awkward talking about this because I generally don't go around announcing my menstrual cycle to the world; however, one of the things I promised myself when I started this blog was to talk openly about the hard issues, the tough issues and yes, the slightly embarrassing/taboo issues. The other reason why I'm going to let you into this world is that it is relevant to the next stage of treatment and recovery. 

I've been on a tablet for the last nine months that stops the menstrual cycle; it effectively tricks your body into thinking that it is already pregnant, via hormones, so that the body doesn't ovulate again and bleed. I was on this tablet to avoid bleeding during the treatment as my blood counts were low and I would have just bled out. But last week, they took me off them completely, which is a good thing because it was time to see what state my ovarian function was in. However, having not had period pain for nine months, the experience of rapid onset period pain was especially painful, obviously the intensity of the overall pain experience was compounded by the headache factor. 

Now for the technical side of things; apologies, it is slightly complicated, but I will try to write clearly and plainly as I can. When I came off the drug I had a break through bleed, hence the period pain. A break through bleed does not mean that a period has occurred. The period or menstrual cycle is the name given to a series of events that include the rise and fall in hormones, namely oestrogen and progesterone, which would lead to ovulation which is the point when the egg is realised. A break through bleed is just in response to the cessation of the drug. To put it another way, its a bleed of left over blood. 

After stopping the drug, the next step is to wait and see if the periods return. If they come back, it does not mean that I am fertile, but what it does mean is that my body is producing oestrogen and progesterone which is a good thing. Conversely, if they don't restart, then those hormones will not be produced. This is bad for two main reasons. Firstly, I will go into early menopause; and secondly I will be at high risk of osteoporosis at a young age. The treatment for this is Hormone Replacement Therapy (HRT). However, it is likely that even if I am producing those hormones, I will not be producing enough of them which will mean going onto HRT anyway. I have my reservations about HRT but there is no other alternative. In the next few weeks, I will be referred to the Early Menopause Clinic to start this discussion. 

This topic is one that I have tried not to think about since I made the decision not to go through egg harvesting. But, alas, it seems that the time has come to reopen this very painful can of worms. It was a hard and terrible decision to make. One of the reasons was because it felt, and to some extent still feels, like I was choosing to be infertile rather than take the risk to at least have a chance to have children of my own.  I still feel numb talking about this subject because it is so overwhelming and heartbreaking. But I know as time goes by, I will start to grieve again little by little and find healing in the process. 

I absolutely adore children. I know that adoption will be the way forward and I know that I will love that child completely but there is still sadness that lingers. I feel this most when I see my beautiful niece on the odd occasion. I love her and I love seeing her, I wish I could see her more. But it is always bitter sweet. That is when the emotion rises, even just thinking about her brings me to tears as it has done now. I find myself shouting at God, telling Him that He knows perfectly well how much I love children. He knows I would teach them about Him, introduce them to Him and His great Love. He knows that I would be a good mother. So why is it that He would see fit to take that gift away from me at such a young age and allow child abusers to have babies left, right and centre? 

I was thinking about all the women in the Bible who were barren. For quite a number of them, God blessed them with children when all hope was lost. People say this too me to try and encourage me. It doesn't, in fact it's rather annoying. This is for two reasons. Firstly, I already know and believe that God works against all the odds. Secondly, having a blood born child is not my idol. I have submitted my life and my will to God because I trust Him and I know, from a lot of experience that His way is the best way. So if it is His will for me to be barren, then so be it. It hurts, but I trust Him way more than it hurts. 

I bring up these Biblical women because there is another side to the story that I think is overlooked. When the women are sorrowful, it is always, I think, in relation to not being able to give their husband a child, not the fact that they themselves are barren. Invariably, I would take the perspective that their sorrow was mainly due to their status and identity as a women that was prominent in that time and culture. But I see it differently now. I feel their pain. I mourn with them. It is not about status or womanhood. It's not about carrying on the family name. I don't know what it is, I can't put my finger on it. I then wondered to myself if I would think of or love my husband less if the situation was reversed. Absolutely not. But somehow, the thought of not being able to give my husband a child is equally as painful as knowing that I can't have any children. I don't know but maybe it's something to do with, what has happened to me is also affecting him. But then, isn't that what happens in marriage; you are one? Maybe is a small reflection of the part of me that wants to protect others from the hurt and pain that has so burdened me; I don't want to go through this, but I certainly don't want anyone else to be affected because of this. Maybe it's knowing that I wont be able to share a child with him? I don't know. I'm just speculating, but not too well, its hard to see clearly through the tears.

Even though the pain is still present now and intense; deep down, I think I know the answer. Adoption is at the centre of Gods' heart. We are His children because He adopted us. I've always asked Him to share more of His heart with me, and haven't always like the result. Maybe what has happened is bigger than I can see right now, maybe the plan is much bigger than what my current circumstances are at the moment. Maybe God will give me a house full of children; each one saved from an abusive home and redeemed in a loving family. Maybe, just maybe. What do children who have a terrible start to life need? The need love. They need to be taught and introduced to God and His love for them. What they need is a good mother.


Thursday, 19 September 2013

Rules Are Made To Be Broken

In the grand scheme of things, I have never been much of a rule breaker, or maybe a more accurate portrayal is that I have never considered myself to be much of a rule breaker. But today, I found myself in a battle of wills. It is the battle of Doctor Vs Stari. Do I do what the doctor has said or do what I want to do. It is a battle I have faced many times before, but today was different. This is day 55 post transplant, and my health has improved dramatically since day 1. I'm at the stage where my neutroblinkits and my lymphoblankits are within the normal range. This rapid recovery has been unexpected as you would normally expect to see these kind of results closer to the day 100 mark. So the docs say, even though my counts are up, I should still avoid crowds of people until day 100. Now here's the dilemma. My counts could probably manage crowds but the docs are stating the guidelines to me. I wont to go out, but I don't want to go out just to end up back in hospital. I want to go out but its been such a long time since I've been out on my own that I'm actually scared of going out in case something happens to me.

So this is the debate that I had in my head today which you are privy to. "I want to go to the post office and the shop. But it's raining. You have a coat and an umbrella and your skin is waterproof. But am I allowed to get on the bus? There are people on the bus. There are people in the hospital where you go twice a week you plonker! Does my new bus pass give me free travel or reduced travel? Just ask the driver. But I don't want to look stupid. You are stupid! Plus the students have arrived and they will undoubtedly look more stupid than you when it comes to bus travel. Maybe I should walk? But it's quite far and I've not walked that distance outside in 'harsh' terrain before. Ok. Compromise. Take the bus at a time when its quite there and back. If you see anyone who is 'diseased' slyly cover your nose and mouth with hand or scarf, turn your back and remember to sanitise when you get home. Sounds like a plan. Oh. Wait. The school kids are about to be let out. They are little bug incubators, who knows what their harbouring! Plan foiled. Maybe I'll go tomorrow. Or maybe not. Tomorrow is clinic day. Sigh.

Like most people I would take risks if I didn't have much to lose, but I do not enjoy taking risks when the stakes are high. When I watch Deal or No Deal on the telly I always find myself giving in at least two or three box opens than the optimum value. In this situation, the stakes are very high for me. Under no circumstances do I wish to go back into hospital as an inpatient. But am losing out? Am I being over cautious? Am I encouraging behaviour in me that is so risk adverse it is unhealthy? One of the great blessings about living with people is that they can keep an eye on me. Even though they feel like they are being overbearing, I receive it with good will and it is definitely needed. I have come to realise, albeit slowly, that my judgement is impaired. To have have someone advise me takes away the stress of having to logically work it out and arrive at the wrong conclusion. It is easy to start to believe that the docs make these rules out of spite or even just to make their own lives easier. This thought pattern reminds me of how a child responds when the law is laid down by a parent. But the parent does so out of love, even if that does mean disciplining/punishing the child. Maybe this is what I should remind myself when I have these debates in my head.

When it comes to rules, there are some that I know inherently to follow and some that I think I can get away with bending. I think this is true for all people, the only difference is where the boundary lines are set. For example, I know not to murder because inherently, I know it is wrong. However, some people do not hold the same view and so they murder; they don't think or maybe they don't care that it is wrong. I once saw a broadcasted interview of an american young adult who was fanatic about the Nazis and declared, in foul language, that all the Jews should be killed. This same person was then asked if he thought he was a good person and he said yes. My point is that we judge good and bad by our own standards and commonly compare ourselves to others saying at least I've never killed anyone, that makes me better than them.

I would say, and I think most people would also confirm, that I am a good person. However, the following examples might cast a shadow of doubt in your mind. When I see the sign in the library that says no talking and no food and drink, I can safely say that I have broken that rule many more times than I have obeyed it. This doesn't seem so bad when you compare it with a rule like murder, however, its morality takes an interesting twist when the motives are exposed. So why don't I follow this rule? I guess its because I'm selfish and don't care if I disturb others and, even though I always tidy up after myself, who cares if the cleaners have to hover up a few extra crumbs? So basically, it comes down to the fact that I'm selfish. That doesn't really paint me in a good light. Surely a good person isn't selfish? I tell lies, but that is to keep the peace or protect myself. No, it's because I'm a coward and proud and wont tell the truth because it causes trouble for me. But what about the odd white lie? Surely that isn't so bad, in fact, I'm protecting the other person. Well, proverbs 27:6 says that "faithful are the wounds of a friend; but kisses of an enemy are deceitful". When you think about that properly, you know its true. It is better to tell someone kindly the truth, than allow them to be continually deceived. I lack integrity and humility; surely these are not the characteristics of being a good person? But I'm just human. That's just another way of saying I'm just bad. The truth hurts.

The point is that even though people perceive me to be good, probably by the things that I do, I am not a good person. For the sake of argument, say we go down the path of good deeds outweigh bad deeds, bearing in mind that motives and thoughts are counted becauses they are part of us and they are the predecessor to action; then if my good deeds outweigh the bad then I'm good. I would suggest, however, that no matter how saintly I behave, my bad deeds will always outweigh my good deeds by a magnitude to the nth degree. Even if you only weighed the number of lies I have spoken, not the ones I've thought about, in my life, they would still outweigh all the good things I have thought and done.

Good and bad is not relative to each other nor is is it relative to other people. Take a spotless immaculate white sheet of paper. Even if the smallest drop possible of blank ink were to fall on it, it would no longer be the spotless immaculate white it once was. But it's not as bad as that other piece of paper that is almost completely black. The other paper isn't white and my paper with one spot isn't white. White is white; it is not relative. White is the set unmovable standard.

So we're all bad who break rules out of selfish ambition no matter what the cost is to others. Is that what I'm saying? There's no point beating around the bush, the answer is yes. This is how God sees us. But there is hope, you don't have to keep hold of your damaged white paper. When you believe God, Jesus will replace your damaged white paper for His immaculate white paper, every time it is damaged or you damage it yourself. When God looks at you, He will not see what you have done, but what Jesus has accomplished for you on the Cross thereby enabling you to be spotless in the sight of God. This is the Good News of the Bible.

Sunday, 15 September 2013

Looking Back

When I get on a train, I always try and find a window seat that is facing backwards. I like seeing what has gone by, and in some respects, what has gone by stays in focus longer than what's coming ahead and seems less threatening. Today is Day 51 post transplant and I am now over halfway through my probation period, so to speak. But what amazes me more is that this whole ordeal started on Monday 7th January 2013, with treatment starting on Monday 21st January 2013. Which means that, from the 7th January, it has been 35 weeks and 6 days, or approximately 9 months and a week. 

This morning I was thinking about the day I stood up in church and told the congregation that I had cancer. It was Sunday 13th January 2013. I had only just been given the news a few days prior and I guess I was still in a state of shock. Unlike the first bout of cancer three years ago, this news was so much more devastating and unexpected. I remember thinking that I didn't want to take the treatment and that I would be happy enough to die. I was so confused. I was told from the outset that it was effectively a 50:50 chance of getting through this and I didn't want anymore pain. 

During the first bout of cancer I would have never considered not taking the treatment, nor would I have considered standing in front of a large crowd and telling them the news, let alone starting a blog and publishing the information on facebook. But this time was different. In a way, I was giving my farewell speech. I wasn't convinced at all that I would make it through and so, in effect, I wanted to say goodbye now just in case. There was no positive spin that I could put on this cancer, nothing was for certain and I could not guarantee that I would come out the other end alive. When I was speaking to church, it pained me greatly, that I could not give them a message of hope. All I could say was I trust God and His will be done whatever that may be. There was no fighting spirit in me.

Looking at the journey ahead from that point was explosively daunting. Even thinking back to that point fills me with the same fear, pain and distress as before. But one thing had changed. I knew the only way to get through this was to give the reins of my life over to God. With that, came the acceptance of help and support from those around me. Three years prior, I would try as much as I could to sort things out myself, but things were very different now. I was completely dependent on God and everyone else.

I'm at the stage now where I'm being followed up by clinic and on the wards as an outpatient. I have survived but many of my comrades have not. The other day, I find out that one of us had died at 23 years of age leaving behind her little boy. Friends dying is hard, but there is one more thing that is as nearly distressing. I find it very difficult to chat to patients who have got serious and permanent complications. I met someone roughly my age in clinic, who also had a bone marrow transplant about two months before me. He has a complication that has meant that he can no longer see in his left eye and they are trying to save his right eye but it is looking bleak. I feel bad, because I know they look at me and think why did she have to have it so easy? I know this because I do the same thing when I see patients who are doing better than I am. It is a strange mix of feelings because, you are full of joy that they are getting better, but it is a bitter sweet joy because you wish you could be in their position. How then do you celebrate with someone when it causes you so much pain? When I have had good news myself, I have tried to be a bit more restrained for the sake of others who are suffering, but it is almost impossible to do so. I have on occasion, because of this, had the experience of survivors guilt. Why did he have to suffer? Why did she have to die? Why am I living and not them? To that, I have no answer. 

Although my journey is still not yet complete, the picture is very different. To be honest I can scarcely believe that I am still alive. Looking back, I can see God's protective hand with me every step of the way, even through the darkest moments. I don't know if you are familiar with the Biblical story of Job, but in his story, God allows suffering  to come to Job but He always draws a line to it - this far and no further. Throughout my ordeal it really felt like that for me, pain will come my way, but I will not let you be killed. You might ask how could a loving God allow so much suffering to happen to me. But my answer is simple. I do not and would not have wished to go through any of that, but the person that God has made me to be from this experience is more precious than the finest gold and I would not give up the relationship I now have with God for anything. God is good and that is always my starting point. If I waver on that, then everything is thrown into chaos. He suffers with me and is in probably more pain than I am. The world is fallen and broken. Ultimately the war has been won by Jesus Christ, but the battle still continues. I don't know if you've done this but, have you every picked up a book and read the ending first? If you have, then you know, that no matter how sticky a situation the main character gets into, even when it looks like they will surely die, you know it's going to be alright because you know that in the end, they come out victorious. I know the end of the story, so even though I may suffer now, I know that I'm safe because of Jesus Christ. 

Tuesday, 10 September 2013

The Story Unfolds


Firstly, an apology. I found out some good news on Friday and it only occurred to me that I should tell you all about it today - in my defence, granted a weak one, the good news was overshadowed by some terrible headaches which are now, thankfully being kept at bay by painkillers. So here it is *drum roll* the bone marrow transplant has been successful! The results from the bone marrow biopsy I had a few weeks ago shows that there are no cancerous cells and that the graft has taken. As I'm sure you can imagine, it is a huge relief to hear this news. The smoothness of the bone marrow transplant has been nothing short of a miracle, God never ceases to amaze me.

Today is day 46 post transplant and I thought i'd catch you up on what's been happening. Well, I've now moved to headingley but, you'll be glad to know, still resisting the temptation to go out all the time and have wild parties. I'm still going to hospital on tuesday and fridays for bloods and clinic. I've got a few endeavours that I'm working on at the moment; unfortunately, I can't publicly disclose their nature, so for now, I'm just going to leave you hanging. It's funny, because originally, I was only supposed to start off with three projects, but somehow they have miraculously increased to six; it really is a wonder to me how these things happen, maybe it's one of those feeding the five thousand things - but not to worry, I'm still taking it easy. In other exciting news, I'm teaching myself to play the piano and I've started off with Bach's Prelude No 1 in C Major from the Well Tempered Clavier. I've only every played the keyboard, but haven't played properly in eight years, and I've never played or read base clef before. What can I say? I like a challenge..

I'm still getting use to being on the outside. In a way, it feels like a dream, in another way it feels like a nightmare. The usual fears that I have talked about in my previous posts are still there, but don't bother me too much. But another challenge has arisen. How do I get back to being normal? Once I'm better, will I be able to get back to my usual life? But for now, I am content - I think. I am still waking up at 2am and 4am in the morning, but I have devised a clever plan to outwit and mock the sleep thief. I do a bible study during those times, topped off with listening to a sermon which, without fail, sends me off to sleep. For those of you who think that's incredibly pious, I assure you its not. It's simply a method for filling my head with something good. Plus the sermons are a much more effective sedative than the individual or cumulitive effect of codeine, morphine, zopiclone and lorazepam; but maybe with the exception of levomepromazine which sadly I'm not allowed anymore - something about making me too sleepy and happy, I dunno, I think they were just being grumpy. The down side, is that I have to listen to the same sermon two or three times to get the full content because I normally fall asleep in fifteen minutes. A wee disclaimer - I am not in anyway suggesting or endorsing that sermons are boring and they put you to sleep; I am merely using the sermons in another way for a different purpose.

The blessing and the curse of waking up in the early hours in the morning is that my mind is fully awake and I usually have my best ideas come to me or material for this blog. I was thinking last night about change, leadership, success and failure. It was a long drawn out conversation in my head but this is the summary of the conclusion I came to. The way to make change happen is to lead by example with humility, integrity, knowing your limits and a teachable spirit. The way to succeed is to first learn how to fail well. Multiple setbacks, builds up perseverance, resilience and teaches you to learn from your mistakes. If you learn to take the blows of failure and get back up again, then you will succeed at pioneering and leading change. I have been told many times in my life that I'm just chasing after the ideal and the world doesn't work that way. For some reason, this has always added more fuel to the fire for me and gave me a reason to pursue the ideal and not settle for less. You can call me a dreamer but there is one thing I know for sure. Nothing is impossible for God. The numbers of the opposition do not matter. God always counts as the majority, even when it is just God or God plus you. After all, if God is for us, then who can be against us.

Tuesday, 27 August 2013

Chapter Five: The Road To Recovery

It's funny to think that six days ago, I was lying in a hospital bed wondering when they were going to let me leave. I feel like I've been out for more than six days, despite having to go back three times for blood tests, in a way it feels like a lifetime ago. When I got out last Wednesday, it was a real shock to the system. The simplest of tasks became impossible to do. In my head, I thought that recovery would follow a similar pattern to what I had experienced previously, which wasn't too bad, but this was certainly not the case. I was completely exhausted, small things like getting in and out of a car were very trying and don't get me started on the stairs; all I shall say is that it's a jolly good job that there are two banisters. 

My body was weak and feeble but my mind is as active and agile as ever. I would wake up in the morning making plans for things to do and sort out and vow to myself that I would do them all after breakfast. The scene after breakfast: me lying across the bed, face down and fast asleep - didn't even make it under the duvet . This pattern would continue to repeat itself and I have to say, it's rather frustrating. However, I do generally feel much better, albeit for a little while, after a sleep, especially since it is so peaceful here. I am staying in a beautiful house in the countryside, it's like living in a fairytale, and for the first time in a long time I am starting to properly relax. However another source of frustration was rising - being called back into clinic for blood tests. I cannot stress how much I hate going back into hospital; it reminds me of exactly what I want to forget. But I know its for my own good and it has to be done. It's the same feeling I get when I take my pills, but I have to remind myself that in three months it will be better. 

By Friday, physically, I am feeling much better - I can now manage the stairs without using either of the banisters. I find this very encouraging; so encouraging in fact that I overestimate, once again, my capacity. By Sunday I am a blithering blubbering mess. I find that there is a direct correlation between my physical state and my emotional state. I woke up on Sunday morning overcome by thoughts of despair, thoughts of the future and thoughts of hopelessness. At that point in time I can truly say that I completely and wholeheartedly despised my life and my body. I asked God in anger why He had given my such a pathetic excuse for a body - it keeps breaking! I looked in the mirror and I didn't see me anymore. For some reason, I looked more bald than usual and in the last eight months I had put on ten kilograms, which meant my clothes didn't fit anymore. I knew in my head, that this was all very superficial and things will change in time, but I found no comfort in that knowledge. Unfortunately, when I get into a state like that I tend to make very bad and irrational decisions. My response, when faced with a problem is how to fix it. So naturally, with regards to the weight, I decided that I would start to exercise and go the next day to some shops to get clothes that would fit, thereby making me feel at least semi human again. In hindsight, if someone who was in my position where to say that to me, I would definitely beat some sense into them, provided that their platelet count could cope with such an assault.

Thankfully, I am staying with some very kindhearted and sensible people. It was gently pointed out to me that it has only been four days since I came out of hospital and medically speaking, I still have a long way to go. It may seem obvious, but it was then that it hit me that my recovery would not depict a directly proportional graph, but one of peaks and troughs with a gentle upward trend - I would have some good days and some bad days. Since then, I have felt much better, and a kind friend of mine has got me some clothes - yeh, even if you discount the fact that I'm not suppose to be around lots of people, I still wouldn't be able to manage a shopping trip, I get that now. I had a wonderful bank holiday Monday and todays' hospital visit was not traumatic. In fact, I got some good news. The blood test results shows signs of the transplant working. It has been a good day.

As I reflect on all of this, I know that I am almost certainly going to have these same anxieties again. But I am learning to be kinder to myself and allow myself to rest and grieve when I need to. I was lamenting to God the other day about my future, saying to Him that I know where I'm suppose to get to in the end but I don't know how to get there. Like a shot the answer came to me, with a hint of sarcasm I must note. I think God said to me "generally speaking, in order to get somewhere, you tend to put one foot in front of the other". "Hmph" I said in reply, but point taken.