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
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


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".