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.

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.

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.

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.

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.

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.

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.

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. 

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.

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.

End Of Chapter Four

After thirty days of being in that place, they let me out! I am now sitting in a house in the countryside and I can hear sheep! I haven't heard sheep for a such a long time. I have never felt so relieved to get out of that place before. Discounting the two platelet reactions, medically speaking, this stint in hospital has gone incredibly well. In other ways, not so much. It has been tough emotionally, but I look back and wonder how on earth did I manage to be in isolation for such a long time without scratching at the walls. For me, this last stint in hospital has been an answered prayer. 

I had a bone marrow biopsy yesterday. Normally they would take a biopsy later but because I signed up to a research trial they have taken the sample earlier - the treatment regime is the same for both trial and non trial. The results from this will be the first indicators of the transplant having worked or not worked. 

So now what? Well I will be monitored closely in clinic twice a week for a while and I still have to abide by strict neutropenic rules while on the outside - restricted diet, avoiding crowds, avoiding people with coughs and colds. Once I get off my immunosuppressant tablets, then I will be able to start to be a bit more liberal. Normally, I would break the rules, but if there is the slightest hint of infection or new symptoms, I will be straight back into hospital - that is something I would like to avoid at all costs.

This for me recovery for me is when things start to get exciting. It is a time when I can figure out how to be me again and see where God's plan takes me. I don't know how long it will take, probably six months or more, but I know God will get me there. Watch this space.

This Was Not Part Of The Plan

Ten years ago, if I were to ask myself where would I be in ten years time, I would have said that I will finish medical school at twenty two, get married around about that same time, starting to specialise in psychiatry, have a house and thinking about starting a family within the next three years. Hmm, wasn't really expecting what actually happened. For years, I ingrained this plan into my head and it was fine until I hit my Highers (AS level for you english folk) that my plan took the first hit. Didn't get the grades for medicine. This was the first step of the plan, how could I have failed at the first hurdle? Automatically the anxiety started to rise about how this misfortune would alter the time scale of my plan. But it was ok, I still had a bit of a time buffer. By age twenty, I started medical school. Finally, the plan was coming into shape. Age twenty one, I was repeating the first year of medical school, I was getting a bit short of time for the plan to succeed. Age twenty two, got cancer. Not married, not in a relationship, get told that because of the treatment I should aim to complete my family before thirty five. So now the pressure really is rising, now there was a solid deadline for having children. By age twenty four, completed second year of medical school. Still no relationship. By age twenty twenty five completed third year of medical school. Now I'm on a roll. Age twenty five and a half, get cancer, how to leave fourth year of medical school. Age twenty six, not married, no relationship, now can't have children, not graduated, no occupation and no house. This was not part of the plan.

It was painful to watch my friends progress through life, attaining the landmarks that I so desperately wanted. I always felt like I was left behind, or had missed the boat. I felt like I had failed as a human being. For years, I lived with the constant stress and anxiety of not achieving the plan. Set back after set back, I still clung on to the notion that the plan was still possible. I was completely deluded, and completely fixated on achieving this unattainable goal. I was getting more and more bitter, although I did not realise it at the time, and it started to get painful to answer the question, "What are you up to these days?" and "Are you in a relationship yet?"

But, I am glad to say that I am no longer tormented by the plan. I still deeply desire some of those things, but it doesn't have the hold over me that it once did. The grasp of the plan had been weakened after each setback, but the final chain was broken when I was told that I would not be able to have children. This broke and still breaks my heart, but then again, breaking free from a captor is always accompanied by pain. For once, I was free and suddenly my life was open to a range of possibilities; it was akin to being given a clean slate; a chance to start over.

I could not be a better illustration of this verse from Proverbs 19:21 "Many are the plans in a persons heart, but it is the Lord's purpose that prevails". The plan that I wanted was not necessarily evil or wrong, but it was that the plan that God has is infinitely better for me. It is a hard pill to swallow and it doesn't happen overnight. But once you know in your heart that God is only good and you learn to trust him, eventually you will be able to submit your plans and desires over to God and trust him regardless of your circumstances. But this is a process and it takes perseverance in prayer for this to come to pass, God will not push you if you are not ready. 

But one problem still remains. In the twenty six years I've been alive, what do I have to show for it? It says in 1 Corinthians 3:19 "The wisdom of the world is foolishness in God's sight". The wisdom of the world would tell me to keep striving to achieve those goals, keep climbing those ladders, achieve those landmarks. I am not implying that it is foolish to be conscientious and strive to achieve, quite the opposite in fact, but what I am saying is that it is foolish to have your life based and built upon those things, plus it causes unnecessary stress. When those things fall, and they will, what will you be left with. Moreover, when you die, what good will your CV do for you when you stand before God? God is concerned about the condition of the human heart. He is more concerned about who you are rather than what you do. I may not have pieces of paper to show for myself but that does not mean that I have failed as a person. The work that God has done in my life is more precious that the finest silver or gold. 

As I look back to my original plan, I can't help feeling a sense of boredom. To be honest, it would have been quite a boring life. The life that I've had so far has been full of colour, with ups and downs and unexpected twists. I have stories to tell, war wounds to show and there rarely is a dull moment - granted quite a few of those moments are painful, but they are anything but dull. This was not the plan I would have chosen for myself but it is the one I choose to follow. The road ahead is unclear and uncertain, but that's part of the thrill of a rollercoaster, you never know what's going to happen next.

So Long My Friend

It never gets easier. No matter how many times you see it, it just never gets easier. People say death is just a natural part of life. I would beg to differ, death happens but it's not natural. It wasn't su[[osed to be this way. If so, we wouldn't cling onto life with such ferocity, nor would we be finding ways to keep ourselves alive for longer. Death is a horrific process to go through. Slowly but surely, your body stops functioning until you can no longer speak, eat or drink and you are just skin and bones; a world away from how you know yourself to be. I do not believe we were born so that we would die. If so, there is no point in life. I believe that we were born to live. I believe we were born to live for a purpose. I do not accept death as the final destination nor do I accept life to be pointless.

My friend Mike, who I met up on ward 94, died on Friday morning. I couldn't believe it when I first heard that he wasn't going to make it; I saw him the week before and I would never has seen this coming. It was a shock to everyone. Mike was everybody's friend; he was gentle, kind hearted and always made you laugh. I remember fondly the times we would chat and knit together - well I knitted and he did one or the other as he couldn't multitask. You will be greatly missed. But someday, I hope to meet you again in paradise.

An Unfortunate Day

I have had an awful day today. This post is rather painful for me to write as the experience is still raw. Bear in mind, I'm still grieving as I write this, and flashes of anger may appear. I have tried my hardest to be as fair as I can while writing this, but I am not sure if I have achieved this. So please bear that in mind when you read this, I must emphasise that the staff here are overworked and try their best, I have nothing against them and they do a brilliant job. I must also stress that at no point was I at risk of dying through this event, nor did I believe that I would die, nevertheless it was an extremely traumatic experience. Please read this with an open mind and do not judge harshly. After all, the first person to present their case seems right until another comes with questions and you hear the other side of the story. That said, let us begin. 

Today, I had a platelet transfusion - platelets are you used to help the blood clot and my levels were low hence the need for the transfusion. They hung the clear bag with yellow fluid neatly on Boffin, my drip stand, and set him to start transfusing. All was well through the process, that was until Boffin sounded the familiar Bing Bong indicating his job was done. I noticed that I had problems swallowing, my windpipe was clear, it was just very suddenly painful to swallow. At this point, I wasn't too concerned thinking that maybe my throat was dry, unfortunately water didn't help. But still, not too concerned because my airway was open, I was still breathing and I had a pulse - ABC check. The nurse came in, and I told her I had problems swallowing; she looked at the inside of my throat and but couldn't see anything suspicious. She went out the room to get a flush and when she came back I had a full blown urticarial (hives) rash and I was trembling. I was having an allergic reaction to the platelets. The nurse came back with drugs to counteract this reaction and administered them. Unfortunately, my heart rate hit the roof, I could feel my heart thumping furiously against my chest wall and I was starting to lose control of my breathing and began to hyperventilate. I was then left alone. Predictable my symptoms got worse, but still I had slight comfort in the fact that in terms of basic life support training I was in no risk of dying.

I waited a while, trying to get control of my breathing, knowing that now anxiety was setting in and exacerbating the problem. I couldn't take it anymore, I started to wheeze and the pain in my chest was unbearable. I pressed my buzzer, desperately hoping that someone would come quickly, despite past experiences. I thought, surely they would, they know I am having a reaction to the platelets, they know its a risky situation. But nobody came. I saw a number of people walk past my door to look at my chart, but none of them came in. I looked up at the crash buzzer which the staff used it and willed myself to pull it, but it was too far out of reach. In a last ditched attempt I shouted for help, when I saw someone near my door, but it took four attempts for someone to finally decide casually saunter in. He took one look at me and asked me what was wrong, all I could manage was the word nurse, with that he legged it out the room. The doctor came back, and took my pulse which he noted was very high and helped me get control of my breathing, he reassured me that my wind pipe wasn't going to close up but put me on a nebuliser because I was very weezy - the joys of asthma. I was comforted by the kindness of the doctor and the time he took to stay with me - being on your own in a room when no one comes to help is very frightening, for want of a better word, when you know time is of the essence. After the administration of the nebuliser, I finally fell asleep after my ordeal. 

But, there was one more obstacle to come my way. After I woke up, I went to the loo, and discovered that I was bleeding from back passage. I can't tell you what words I used at that moment, but they aren't used in polite conversation. I calmed myself down and used my medical knowledge to deduce that it was only a superficial bleed and not serious. In any case, I knew I had to tell the nurses. I told them my symptoms, in the style that my medical training had taught me to do so. The nurse confirmed my diagnosis. I don't know if it was because she knew I was a medic, but there was a distinct lack of empathy and acknowledgment of how distressing this situation actually was; knowing that it is not serious is beside the point, that fact alone does not take away the trauma that has just been experienced. 

I really felt dehumanised in that instant, and because I had no serious red flags, as they call them, I was deemed fine and that was that. It seemed  to me in the cases of the allergic reaction and the rectal bleeding, my body was perceived as a machine, all that was required was to follow protocol and that was the job well done. What I needed in those times was someone to sit with me and acknowledge my pain, and treat me like a human being.

A furious rage began to rise up within me. It was last week that I had officially raised concerns about the time it took for a the buzzers to be answered, this was after I had waited forty minutes for someone to answer my buzzer the previous day. I pointed that this time delay was a real risk and that had I, or another patient, been choking, or having a reaction I would be well and truly dead with no chance of resuscitation by the time they got to me. I said that this just can not continue. Effectively I was dismissed, albeit politely I should admit, and was told that I should write to the PM to campaign for more staff. I'm sorry, that's just not acceptable. There are many changes that could happen at this level, maybe solutions should actively be sought out rather than shot down by people who would rather take the default position of there is nothing we can do. It is only because it is easier to do nothing rather than stand up for what is right that nothing changes. 

Given this experience today, I will not let this issue slide. Having the background that I have, I understand the pressures that face the staff of the NHS, the staff are overworked and need more support, but they do a fantastic job with the resources they have to work with. But I also know what it is like to be a patient, and the stress and the struggles that we patients endure for no good reason. What the NHS don't realise is the psychological damage they cause to patients after they have been  through their doors, is long lasting, painful and cannot be fixed by a pill. I am a person first, not just a patient. This change in attitude that is required has to happen on an individual level and it is called empathy. It can not be forced by managers, it comes from pausing one moment, actively listening, and thinking about how you would like to be treated if you were in their position. It is up to each individual to choose to change. After all, an ocean is made up of a multitude of drops, we all need to do our part.  

I have debated at length with myself whether or not to publish this post. But it is my duty to speak up, not for myself, but for all the other patients who aren't able to speak for themselves. I am in a position where, due to my training, I can interact more with my treatment and spot potential dangers early. Most people who come through these doors, are not able to do this. If you are reading this and you work in the NHS, I implore you to take to heart what I've said. It is not down to someone else, it is down to you to change things. All it takes is to simply give more thought to your actions. I understand the pressure you are under and its not fair, but one act of kindness is all it takes to soothe the soul.

Good News

So a lot has changed in the last week. It turns out that, if all goes according to plan, I might be able to leave this place next week. My neutroblinkits are 1.32 today but because I've had a cord transplant they have to get to 2.5 before they let me out. They have been rising quite well, so hopefully it won't be to long. In terms of my symptoms, that I described in The Story So Far post, my back and shoulder are feeling much better and I feel comparatively much stronger - there's nothing like a good old fashioned blood transfusion to put a spring in your step. The strange pain that I was getting in my palms and soles has somehow got better very quickly and its quite mild now. To top it all off, I actually felt refreshed after last nights sleep. So things are going well. Thank you for all for your prayers, messages, cards and gifts. They have really encouraged me when I have needed it most.

It's Just Part Of Me

One thing I have noticed being on this ward is that, compared to the ward I'm usually on, there are far more Christians. What's more, most of them seem to be in an ethnic minority and seem to be on the housekeeping team. Don't get me wrong, I don't go asking people as soon as I meet them if they're a Christian; if it comes up in conversation or is relevant then I will go with the flow. But on these occasions, I didn't have to do any investigating, I just knew. I knew not because I had a divine word of wisdom, but because they would usually come into my room singing, albeit quietly, Christian songs.

It was clear that being a Christian was more than just what they did on a Sunday or even just their identity; it was a living, breathing, singing part of them, intertwined deeply with their body and soul. When I was talking to them I could see that their faith was strong. Recurring themes in our conversations/monologue would be trusting in God and His healing power. Ashamedly, I have to admit that it was a bit irritating and I felt like saying "I do trust in God and yes, He heals, but He doesn't heal everyone in this life but He does works for the good of those who love Him". Of course I didn't say that, instead I said a little prayer in my head to make them go away; I know that sounds bad, but in my defence the God answered yes and made them go away; or should I say, led them away. I digress. The point is that it got me thinking about why or how their faith was so strong. I could be totally wrong, but I think your faith is made stronger when you face disasters and the words you know about God in your head are being put to the test. It's also experience, I think. The more you see God answer the prayers that you've said, the more you trust Him which in turn builds up your faith.

In the past, despite being a Christian myself, when I would see people waving their arms in the air and shouting praises, I would assume that the silly plonkers had been brainwashed. Being a Christian was good enough, but there is no need to go over the top with it. I am proud to say that I have now become one of those silly plonkers; but I have not been brainwashed. But thats what all brainwashed people say, I here you retort, but there is a difference. It's not enough to just be a Christian; when I say this I am not referring to going to heaven, but I mean that you are getting short changed. The difference between "being a Christian is just what you do" and "being a Christian is who you are", is comparable to you consciously choosing the smart price brand over the extra special range in food shops when the prices are the same. It's like seeing a buy one and get a hundred free offer and just taking the one to the counter. You are losing out for no good reason.

I started to think back to the point in my life when Red Bull was switched for Rocket fuel. I remember for years wondering when God was going to speak to me and change my life like He seemed to do for other people. Then it happened, Everyone's story is different but I think I can broadly split mine into four stages that spanned over a good few years. Stage 1: He allowed me to have a trampolining accident that was devastating, not for my body but my ankle was pretty much ruined, but for the success I enjoyed at competitions. I should point out, however, that the accident was completely my fault and God did not make me or cause me to have an accident, however, He does know all and can intervene in situations when he chooses to. Being part of the trampoline club at university had become my life and I was totally devoted to it. So why did God take away something so precious to me? That's exactly why. The only thing that should be held in such high esteem and be such an all consuming part of my life is God. He basically knocked trampolining of the throne of my life.

Stage Two: a series of unfortunate events that caused me a great amount of pain. Basically suffering. This suffering, although it took many forms, went from age twenty to present. Why did this happen? My best guess is that now God had made space for Him on His throne where He rightly belongs, it was time for me to learn that in the deepest darkest moments of my life, the only one that could help me was God. Once again, I must emphasise that God did not bring suffering upon me but He used it for my good. Although it was a painful lesson that lasted years, I learnt a few things that set the foundation of my faith. Firstly, God is not out to smite me, just waiting for the moment that I mess up. Secondly, despite the circumstances, God is good and does not do things to harm me. Thirdly, He loves me and cares about me and wants to be part of my life. Fourthly, I can't just expect God to bail me out everytime when I've been foolish and caused the problem myself; it was time to listen to what He said then act, rather than acting and asking for help. Fifthly, Jesus Christ personally made it possible for me to have a relationship with God.

Stage Three: Prayer from people in a foreign land in a language I didn't understand when it was minus ridiculous degrees celsius. There were things in my life that I just couldn't shake off. It mainly centred around not knowing in my heart that God really loved me and thinking He was out to get me. The reason I went to Latvia was to visit a friend, and she, knowing my woes, suggested that I talk with one of her friends. It was during that talk with her friend that I felt the first chain break. I knew for the first time in my heart that Jesus loved me and it was and is such an amazing feeling to know this. I took up the offer of prayer from some people who I was meeting for the first time and they prayed in Latvian while my friend would translate bits of it. We prayed for two-three hours and I can't explain it but after that, my life had changed. I didn't feel a sudden difference, but I did noticed changes had happened in my heart and a burden had been lifted off my shoulders.

Stage Four: The present. After going through all this, I suddenly found a new desire in my heart to speak about Jesus and what He had done for me. I don't know where it came from or how it happened but it did. That's the Holy Spirit for you, hits you when you least expect it. My desire grows for Him as the days go by and even though I endure hardship I now turn to God saying, not "Why have you done this to me?" but "I know that you will get me through this and I trust you". He is just part of me, I can't help it.

I guess what I'm trying to say through all of this is that being a Christian is a process and sometimes God needs to first remove things that are sitting on the throne of your life so that He can take His rightful place. But do not lose heart. If you ask to know God or know God more, He will do so, but if you ask, be prepared to accept His methods of doing so. Until He does so, only He knows when, keep asking in the meantime. When it does start to happen, keep asking  because there is always more to discover about God. 

The Story So Far

It's been twenty days since this hospital admission and it is now day fourteen post transplant; I thought it was time for a wee update. This has been a hard week for me - I say hard, but it is relative to the rest of the time for this admission which miraculously, has been  a walk in the park. I have had no major symptoms and haven't missed a meal, well apart from the time when they took me down for radiotherapy and they binned my meal because I wasn't on the ward, which I was kinda annoyed about because it was sticky toffee pudding for dessert which is my favourite. But never mind, right back to the plot. This week has been hard because I have been completely exhausted; I would sleep and it would make no difference. So I have spent most of this week asleep. It's funny, because I thought I had got away with it and then my hair started to fall out, really fast, So I decided to have my head shaved. Below are two pictures for your entertainment:

Thought I'd try a new style - hmm, maybe not

The finished product

In terms of the tiredness, I feel better now, but the smallest of movements take a significant amount of effort. I found also that I was getting muscular pain in my back and shoulder, but I am now being seen by the physiotherapists and things are improving. Strangely, I have developed symptoms on the palm of my hands and the sole of my feet. Don't worry its not hand, foot and mouth disease. Whenever pressure or heat are applied to them I get a burning sensation in my hands and feet, even though they themselves are not hot to touch or red. The docs call this type of pain neuropathic pain, which means that my nerves are a bit confused and are active, or firing, inappropriately which causes the sensation of burning pain. It should go eventually, but in the meantime its rather inconvenient because walking, washing hands, showering causes a decent amount of discomfort. But I have found ways to reduce the intensity, for example, double gloving when showering helps somewhat. There are pills that I can take, but I don't think that this current level of pain warrants medical intervention yet.  

From the blood result side of things, I had a bag of platelets, which help your blood clot, and I'm nearly at the level where I can get a blood transfusion - hopefully tomorrow. As an aside, blood transfusions are amazing! One minute you feeling faint and struggling to move without getting short of breath, and then two hours later you feel like you could do circuits; although granted, its hard to do when you are constantly attached to a drip stand. My neutrophils, or neutroblinkits as a child once called them which in my opinion is a much better name, have been steadily rising with the injection they have been giving me. They need to stay at 1 for two days without the injection. I was 0.78 yesterday but 0.73 today, so they are starting to stutter a bit. To be honest, the staff were quite shocked and how well they were rising, but now they are behaving as the would in a normal individual who has had this treatment.

So thats pretty much it. I think I'm going to have a nap know, my computer screen keeps going in and out of focus, may have overestimated my capacity slightly. That's one lesson I've learned/learning this week - pacing. For a go getter like me, this is quite hard. But I am thankful, I really feel like God has kept me in a protective bubble and has given me the resources to cope with acute illness if it comes. Each day that I wake up and I don't feel like death warmed up is a miracle for me, especially considering my previous hospital experiences. It just affirms to me that God cares about the little things. I can sleep easy knowing that He is on it.

Uncertainty: My Travelling Companion

This morning, while I was having my room cleaned, the housekeeper made a comment that sparked off a train of thought. She said, "I bet you must feel so relieved when you're told the cancer has gone". It's not so simple. Firstly, you are never told that the cancer is gone, you are told you are in remission. It's a difference that adds uncertainty to the context. Being in remission means that, with the technology available, there is no cancer detectable. But the catch in that statement is "technology available"; potentially there could be cancer cells but the number is too small for the equipment to detect. While being given the news of remission is an answer to prayer, it keeps you looking over your shoulder because the cancer could  come back, or in my case, a different cancer could arise. 

The other thing that robs the expected joy from being in remission is that you still have to continue treatment after the fact to ensure a higher success rate. When I think back to when I was given the news of remission for the Hodkin Lymphoma three years ago when I was half way through my treatment regime, I was not overly excited. Why? It was because I was more concerned about potentially needing radiotherapy.The real relief came when I was told that I didn't need treatment. This time round I was comparatively significantly more relieved, but I think that was because this was a more serious situation and the stakes were higher. But

I still couldn't fully celebrate because I knew the bone marrow transplant was still to come. Am I relieved now that I've had the treatment? I don't know, a bit I guess, but I thought I would be more relieved. The recovery takes a long time, about six months or longer; this makes this whole experience feels like there is no real end point in which to focus the relief around.

The two bouts of cancer have made me think about being cured in a completely different way. Physical healing is always temporary. There is no cure for death. I don't know if I will have more episodes of cancer in the future; but I suspect I might. Maybe I will, maybe I wont. I know that sounds pessimistic, but in fact it is realistic. In this life, physical healing is a;ways temporary, but healing of the soul is not. That can't be taken away because the soul lives on after death and instead, God adds to it day by day. 

The problem with pinning your hopes on a long term cure is that it is an illusion. We have to die of something in the end. But surprisingly, I'm ok with that. It doesn't fill me with fear or foreboding because I'm not bothered about living forever. This treatment I'm having has bought me more time. It could be a lot or it could be a little. But having this mindset has uncovered the need for stewarding time wisely. When I have recovered, I will live life to the best of my ability, and if I get ill, I will recover to the best of my ability. I'm learning to live with uncertainty and it's ok. I't means that I learn to trust God in all seasons of my life. When God is the centre of your life, you loosen your grip on the things of this life; instead you hold onto Him tightly knowing that He will get you through. You don't know what the outcome will be, but He will get you through the journey. That is why I am not afraid. Don't get me wrong, I really dislike pain. But there are higher things at stake and I endure pain because someone died for me so that I could live, His name is Jesus.