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.

One Step At A Time

I woke up this morning feeling rather stressed. I was plagued with thoughts that, broadly speaking, said "What am I doing with my life". I know that might seem quite bizarre, given my present circumstances as I should be focusing on recovering, however, I hate not know what the plan is. When others go through similar anxiety provoking periods I preach "One step at a time"; I now publically acknowledge and admit to being the chief hypocrite of this statement and its ethos. 

A brief interlude: To relieve the stress of my current thought predicament I turned to do what I always do - clean. Unfortunately, that wasn't really possible and would be highly frowned upon if I was found on my hands and knees scrubbing the floor. But not all was lost. Sitting on my windowsill was a pile of letters that I received from the bank, benefits and such like organisations. The answer was staring me in the face. I could partake in a favourite pastime of mine - filing! I love filing. I love ring binders, file separators, staplers, hole punchers, which in my opinion is an ingenious invention, paper clips, index cards, I could go on but I'm guessing you get the gist. I hate disorganisation. I hate having things just hanging around without a proper place. When I was living with a particular friend, I was sitting in her room while she was picking up her folder. To my horror, a massive bunch of bank letters fell out of it. I just couldn't take it, I even offered to file them for her. In the end, I never got round to it, but I would always glare at it every time I saw it. Another thing I hate is when people move my stuff that I've intentionally placed in a certain order which, by the way, happens every morning when my room is being cleaned; I find myself watching them intently fighting the urge to tidy up after them, it is a daily exercise in self control. Anyway, I borrowed a hole puncher and stapler and entered into administrative heaven. I was so happy with the outcome of my file seperated ring binder, that I actually sat and looked at it for a little while with a big grin on my face. But I digress, just thought I should share the madness with you first. 

The sorts of things that I want answers to are where am I going to live once I'm fully recovered, what am I going to do, when do I fully recover, when can I start making plans without the threat of readmission stalking me. But in the midst of my circular argument something pierced my thoughts like an arrow. It was a passage from the Bible that suddenly came to mind. Jesus said do not worry about tomorrow because today has enough troubles of its own. I must have heard that passage hundreds of times but it would always make me grimace in a way that conveyed well thats easy for you to say, you're God! But today for the first time, that little verse resonated deeply within my soul and I finally agreed with Him. The former part of that passage talks about how God will look after your needs because He is a dad who loves His children. I have always struggled with that, always trying to take control. But today I was reminded, how, even though I have suffered greatly in my life, He has always provided for me, both materially and spiritually. I have no reason to believe that He will not continue to do so.

There was one other verse that jumped out to me that day. It is Proverbs 3:25-26 and says "Have no fear of sudden disaster, or the ruin that overtakes the wicked, for the Lord will be at your side, and will keep your foot from being snared". This verse is not necessarily talking about the physical disasters, but also spiritual. God never promises that tragedy won't come. I used to get angry that I had to endure much suffering while others, who I, in a proud heart, deemed to be less deserving than myself, lived a happy life with no trouble. The truth is that disaster doesn't discriminate between the so called good and the bad, it comes to all people. The difference here is that He promises to stand beside His children. I used to pray, "God get me out of this" but I realise my mistake. The prayer is "God get me through this"; and as surely as the sun will rise, He does.

The Event - Part Two

It is official, the transplant has been completed. It started at 15:30 and finished at 18:00 which is a lot longer than most; Normally, for this type of transplant, it would be done and dusted in about half an hour. For your entertainment, I have taken a few photographs to walk you through the process. Health warning: there is blood involved, if squeamish, do not continue further. 

This is the "Dalek" It contains my transplant cells

This is what happens when you open it - good old fashioned liquid nitrogen pours out.

This is what comes out of the Dalek - two incredible small bags of cells; they hold about 20mls each.

The bags of cells then go into this water bath to be defrosted and warmed up to body temperature.

So in hindsight, this is kinda funny. The bags of cells come in another sterile bag encasing it, shown here. It is so you can take out the smaller bag, with the cells, and still maintain a sterile field. Unfortunately, during the defrosting process, the inner bag split releasing the cells into the outer bag which you can see here. I was unaware of this at the time, because the nurses literally legged it out the room to speak to a doctor. So instead of sucking up the cells with a syringe from a neatly contained smaller bag, they were doing it from the bigger one as you can see here. Thankfully it makes no difference to my treatment; although it is kinda funny that I was joking with them before hand to make sure they didn't drop the bag!

This is them pushing the cells into my line. They use larger needles for this process to all for the size of the cells. They had to keep changing needles every 1-2mls because the needles kept getting block. There 40mls in total to be infused which equals a lot of needles and a lot of time.

So there we have it, the story of my transplant. I feel fine at the moment, although I am tired and my stomach feels a tiny bit funny. So now it is a waiting game. It should take about a week for all my blood levels to drop to zero and then another four weeks for them to recover. During that time, the transplanted cells will somehow magically find their way to my bone marrow and know that they are supposed to turn into bone marrow cells.  It's absolutely mind boggling when you think about it. We also worked out the the children, from whom these cords belong to, will now be two and four years old. To them, their parents and the medical team, I would just like to say, thank you for saving my life.

The Event - Part One

Today is the day - it is the day of the bone marrow transplant. This is what the last seven months have been leading up to; this is the hopefully the miracle cure we've all been waiting for. It is due to happen in the next thirty minutes. How am I feeling? I don't know really. I don't feel scared nor do I feel excited, maybe a little indifferent. The week leading up to this has been tough. I really struggled to settle in and I think I was in a bit of denial about the fact that I was a patient again. Physically, the chemotherapy and the radiotherapy weren't that bad - I haven't thrown up yet which is always a good indicator of health. But I've had a wee wander off the ward, back up to the friendly face of ward 94, over the last couple of days and it has done me the world of good. But this is it now. There is no more galavanting allowed and now I am truly restricted to my room. Anyway, I'm signing out for now but stay tuned for The Event - Part Two.

Chapter Four

In some ways, this chapter is the beginning of the end. The last seven months, retrospectively, feel like a blur, it feels like I was watching somebody elses life. It has been a hard transition, coming back here that is, especially since I've had such a long time on the outside. But, after a turmoilous week, I feel as ready as I can be. The room I'm in is nice by hospital standards, but I do miss the creature comforts of the young adults ward upstairs. That said, one of the nurses that was on the ward upstairs is working on here temporarily so at least I know her and have her to talk to. I've unpacked and settled in, and as you can see, my internet is working! That is an answer to prayer and a huge relief.

I've only been on the ward for two hours and have already been AWOL. But in my defence, it was only a quick sprint off the ward and as from tomorrow, I promise to try to be on my best behaviour. Tomorrow is the start of the chemotherapy regime. Initially, I thought I would be having chemotherapy for only some of the days, but as it happens, I will behaving it every day for the next week, which is slightly unfortunate. But I accept that it needs to happen. I'm not looking forward to the weeks ahead, but I know that He will get me through it.

Watch this space. 

Radiomonster

Before the feature story, an update - I got the internet sorted for when I go into hospital. 

The main thing that strikes fear into my heart about the bone marrow transplant is the radiotherapy. It's probably because I've never had it before and because I know too much for my own good. I don't remember ever feeling like this before I had chemotherapy three years ago. I have, and still do, view chemotherapy as less potent than radiotherapy. The type of chemotherapy I had for the Hodgkin Lymphoma had the so called promise of minimal long term side effects attached to it. Radiotherapy, on the other hand, will have long term side effects that can manifest now or several years down the line. I wont bore you with all the consequences of radiotherapy now, instead, I'll let you google it for yourself so you can have the pants scared off you that way. Radiotherapy is the sort of thing that keeps you looking over your shoulder. As morbid as it sounds, I do feel that when the time comes for me to die, however many years that may be, it will be because of a side effect of the radiotherapy; but for now, I am allowed to cheat death, at least for a little while. But it is a peculiar feeling; knowing that the choice I'm making now is potentially going to be the death of me. I guess, we've all gotta die somehow, I would personally opt for an instantaneous death but I don't really have a choice in the matter.

Today, I had my test dose of radiotherapy. They give you a test dose so that they can observe the amount of radiation absorbed at different points on your body. They do this so that they can prescribe the correct dose of radiation for when the time comes for me to have my treatment dose. The dose they gave me today was tiny which meant that I didn't feel any effect of it. Although, I do have a headache which could either be psychosomatic or stress related, or maybe a mixture of both - I have already ruled out a brewing infection from the differential diagnosis. Allow me to describe my experience to you. 

I arrived at the department, to be told that the machine that I have been allocated has been "playing up" today but not to worry. Blood pressure starts to increase from already elevated pre-anxious state. I then walk into the changing room and the first thing I see is a sign above the sink. It read as follows: "Patients, please do not spit blood into the sink, ask for a sick bowl". Palpitations now present. I make my way into the treatment area where I am greeted by four friendly staff. Palpitations beginning to subside. I am then asked to lie on what I can only describe as a giant blue bean bag which inflates to mould into your body shape once you are in the correct position. Heart rate rises rapidly as I try to get on sed bean bag in a dignified fashion that doesn't involve frontal flashing. I should add that there are both male and female staff present. I am asked to contort myself into an odd adaptation of the foetal position while they stick electrodes on me in places I rather not mention. The fight or flight response has given way to the lay down and die response. I am then told to lie as still as possible while the fire the beams at me. Unfortunately, fight or flight response kicks back in and I now have to fight the urge to jump/roll off the bean bag and run away. 

So that was my experience in a nutshell. I have been assured, that there will be significantly less faffing on the day of my treatment dose as they now have all the pre-measurements they need. Todays' experience has been the emotional tipping point for me. I have found myself overwhelmed by sorrow and all I want to do is hide in my room and never come out. But I know that's not possible. I'm trying my hardest, in these last few days of freedom, to make the most of it and enjoy myself. But I cant. I feel like I have completely lost control of myself. I can't sleep properly; I haven't been able to sleep properly for a while but the difference is that now, once again, my dreams are haunted with cancer. I am stress eating like there's no tomorrow - ironically, once I get admitted on Friday, as far as eating is concerned, there probably will be no tomorrow. I don't know. I'm exhausted and I haven't even begun. Once again, I am reminded of when Jesus was in the garden of Gethsemane a short while before he was about to be handed over to face his death. In a small way, I feel like I share some of that pain; but there is hope. The hope is of deliverance. I don't feel very hopeful at the moment, but thats ok. I'm assuming Jesus didn't either in that moment. If it's good enough for Him, it's good enough for me.

The Final Countdown

It would seem that my time of freedom is fast drawing to a close. I have enjoyed my time out of hospital immensely and I am ignoring the fact that the countdown to the biggest challenge I am to face as of yet has begun. Up until yesterday, I was in blissful denial as to what was to come. Yesterday was my last day at church for quite a while and I think that's when my wall of denial started to crack. Today, the full realisation has hit me and once again I find myself in a state of anxiety as I pace up and down the house; much to the cats' confusion as she patiently follows me around the house waiting to find my resting place.

I go in for the bone marrow transplant this Friday (19th July). When I go in, they will start a week long intermittent diet of chemotherapy and radiotherapy. The purpose of this pre-treatment phase is to kill off all my existing bone marrow so that the stem cells in the transplant can graft on and develop into new bone marrow. I will receive the actual transplant the following week, the 26th July. Receiving the transplant itself is pretty uneventful, it is just like having a blood transfusion. After that, I will spend the rest of the time in recovery. This is the period of time that is the most dangerous which is when I will get infections. There are many complications that could happen during this time of recovery, the main and most likely one being graft versus host disease. Since, through the transplant, I am effectively receiving a whole new immune system, my new immune system may detect my body cells as foreign and start attacking everything in my body. In a way it is the opposite process to an organ transplant - instead of your body rejecting the transplanted organ, in my case, my transplant, which is my immune system can reject my body. 

I will be in hospital for a total of six weeks. I will be in isolation for that whole time which means that I wont be able to leave my room. To reduce the risk of infection, I am only allowed two visitors for that whole time; they are allowed to visit every day but it has to be the same two people. Unfortunately, I may not have internet or phone signal due to the impenetrable fortress design that is the Bexley Wing. So it is likely that i'm not going to be able to communicate to the outside world in the normal way, but I am currently figuring out ways around this and hopefully I will be able to keep you updated through the blog. After I leave hospital, it is highly likely that I will be very weak and still unable to see lots of people. The total recovery period after the transplant is six months, so there is a long journey ahead.

For those of you who would normally visit me but now can't, there will be a box in the foyer of church where you, if you would like to, can put any cards/letters/gifts etc in and one of my two designated visitors will bring them to me in the hospital. For those of you who are further away, you can either send post to the hospital, address below and please note that I am on a different ward to before, or to my postal address which I can give you upon request.

Stari Gunarathne

Ward J89

Bexley Wing

St James Hospital

Leeds

LS9 7TF

So I guess that's all there is to say really. I am terrified but all I can do is hope. I choose to hope.

  

Healing

Do I believe in the healing power of God today? Yes. Have I ever been instantaneously healed? No. Have I seen other people been healed in an instant? Yes. Does God heal everyone? No. Does that mean that He is not good? No. One of the questions that I have had to battle with through this episode of cancer is why doesn't God just heal me and make the pain go away? Is it me? Do I not have enough faith? Is He angry with me? 

Just before I was diagnosed back in January, I, and many others, prayed fervently that God would heal me instantaneously so that I didn't have to travel down this torturous road. But, as we know, the answer was a big fat no. It has taken me a while to gain peace about this issue. When I got the diagnosis, I was suddenly confronted with many questions about God's nature and why He allows suffering. But here's the truth; all the pain and suffering in this world is not His fault and is not of His doing. This is not the way that God intended His creation to be. When sin entered the world, through our rebellion against God, it tarnished and set out to destroy God's perfect world. God grieves over this more than we can ever imagine. But, there is hope. He sent His Son, Jesus Christ, to this earth as a human to conquer satan, his servants, his works and effects, which He did on the cross. This has profound implications. It means that because satan has been defeated, God's creation is no longer damned for eternity. When Jesus comes back, we know not when, then satan will be thrown into Hell where he will suffer for eternity. At that time, God will restore creation back to its perfect state and those who follow Jesus will live with Him for eternity where there will be no more pain and suffering.

That's all very well, but why didn't God heal me? Well, in actual fact, He is healing me. All healing is miraculous, the time scale is irrelevant. Healing through medicine is just as God given as healing instantaneously. It is only now that I have started to understand why God has chosen this path for me. The work that God has done in my life and in those around me through cancer is incomparable. That does not mean to say that God made me get cancer, rather, He will turn something horrid into something beautiful, not allowing the suffering to go to waste. I am a completely different person to what I was six months ago, and it is definitely for the better. 

I have often asked why I had to go through the pain in order to be changed. I don't have a satisfactory answer to that, but there is one thing I've noticed. I can tell people about the lessons I've learnt the hard way but out of the masses that hear my words, it is in only a very few that those words sink into their hearts and produce a lasting transformation in their lives. In most people, it makes them think for a little while, but then it fades into the background and becomes something theoretical. Theory does not produce transformation. It is theory applied to the heart through the knowledge of God's love that produces transformation; it is a transformation that will withstand the test of time and trial. If at all possible, open your heart to what you hear. I would highly recommend learning from the lessons of others rather than going through them yourself. 

In this life, all healing is temporary because at some point, we will all die. But there will come a time when Jesus will wipe away every tear from our eyes. That is the day that I long for, but until that day comes, I will live my life for Jesus and doing the works that He has set out for me to do in the hope that when I see Him face to face, He will say, well done, good and faithful servant. It is then, that I will be home.

A Collection Of Reflections

While I am out of hospital, and also when I am in I guess, I am completely dependant on other people; a pill that has be quite a challenge to swallow. I have always valued my independance, knowing that I didn't have to burden anyone else with my needs, but the tables have turned and I have gone from one extreme to the other. The sacrificial love and care that I have, and continue, to receive from those around me is overwhelming and unparalleled; I would be well and truly stuffed if it wasn't for them. I will never be able to pay back the generosity that I have been given nor can I sufficiently convey how grateful I am. But receiving has been a hard lesson for me to learn. If I'm honest, I still find it hard and uncomfortable, but I have come to discover something about myself. I think pride lies at the heart of the issue. I think it is my pride that stops me from receiving; I guess, when it comes down to it,  I don't want to appear incompetent or incapable. Maybe I'm scared that if I were to let people in, they would see who I truly am and see me for the fragile fraud that I really am. Maybe it is, maybe it isn't, I'm speculating. The truth is, I have never been independent, even though I have fooled myself into believing it to be so. I have always needed people, be it family or friends. Moreover, I have always needed God. I can't do this by myself. My proud psyche of self sustaining capability is the reason why I have found it difficult to receive, accept and submit to God. I don't know how to fix that, but I'm positive that if I tell God about it, not that He doesn't already know, He will do something about it and change my heart; that's my prayer anyway.

Receiving has not been the only challenge for me; being completely reliant has been just as grueling. I'm not the sort of person who would choose a backpacker holiday moving from place to place, but as it happens, in some small way, I think I'm experiencing it while being back on the outside. While I'm out of hospital, I can't care for myself, which also means I can't live on my own. So far, I have been housed and looked after by three different families. It has been a great blessing to be able to live with them for a short while. Even though I know I will never be out on the street, it is disconcerting not knowing where I will be going next. I was thinking about this the other day and a passage from the bible came to mind. Jesus was sending his disciples out into the surrounding towns and villages and he told them that they were not to take any supplies with them, not even an extra shirt, and they were to rest in the houses of those villagers who would offer. Well, I have two(ish) suitcases and I know the people who I'm staying with, so I'm already in a much better position than the disciples, but I think I can relate to how it must of felt for them not knowing where they were going to rest their head. But what it is teaching me is total reliance on God and trust in those whom He has provided for me.

I don't know why or how these things I think about come to me. I don't purposefully set out to think about my flaws and failings even though many of my blog posts would suggest I do. I know it must seem like I spend most of my time being morose, but it is not the case. Most of the time, when I am with people , I do genuinely feel happy and for a short while I get to forget about my life; for me, it is a welcomed distraction. It is when I'm alone, mostly at night, that I have no choice but to face up to the war raging within me. I do wonder at times if it is healthy to use distractions to escape the pain. I guess it depends on the nature of the distractions. But ultimately, at some point, the emotions will need to be accepted otherwise they will manifest in different and more subtle ways. I noticed this a few days ago. I found myself, getting extremely angry and jealous of the apparent ease of other peoples lives. Although I know that everyone has their own struggles to face and although I would never wish for the lives of others to be filled with hardship, I find myself seething. Seething at the fact that I just don't seem to be able to catch a break. I find myself asking the unhelpful question of Why does this have to happen to me? It is unhelpful because there is no answer. It is unhelpful because it is the wrong question. The question I should be asking is... Well, I haven't figured that out yet, but when I do, I shall let you know.

So there you have it, my collection of reflections. There is some comfort though, even though my reflections are news to me, they are not new to God. He has always known me for who I actually am, warts and all, but still loves me not because He can change me into someone worth loving, but because He is who He is
.

End of Chapter Three

At long last, the end has arrived; I get to leave hospital tomorrow for about five weeks. It is a strange feeling, I am so relieved at being able to leave, but at the same time there is a part of me that is scared about being back on the outside. It is a completely different life in the real world and it will take me time again to find my feet and adapt. As I am back and forth between hospital and the outside frequently, I find adapting to these environments quite exhausting and emotionally draining. I always tend to overestimate my energy levels when I'm on the outside, maybe this time I will get it right, well, at least for some of the time. So it is a bit of a rollercoaster, but still, I am absolutely elated that I'm getting out of here.  

So what's next? Well, I had this amazing idea, that since I have a good while off, I would go on holiday out of the country. It seemed like a perfectly reasonable thing to do in my head. But my plan was foiled when I was told that I would still have to come into hospital once a week for bloods. Grr. Plus, I will probably have a few clinic appointments dotted about to make sure everything is ok, and to make sure I hadn't been "irresponsible" and done something like leaving the country I suppose. I'm sure there's a conspiracy to keep me to keep me on a leash. When my five weeks are up, I will be back into hospital for the dreaded bone marrow transplant. It has been provisionally been booked for the 17th July but things can change. They have a potential match for me, but nothing will be definite until the very last moment.

That's all folks, signing out!

The Time Between The Times

The last few days, even though they have been dreadfully painful, have brought desperately needed healing to my soul and clarity of mind. I feel like my life currently depicts a microcosm of the time between the times. I am in a state of suspension, as it were, knowing that the end of this saga will eventually arrive but not knowing when. Likewise, on a larger scale, I know that one day, there will be no more pain, suffering or death, but I know not when. 

My current affliction has challenged how I live. It has forced me into a state of waiting which, as it happens, I greatly dislike. There is a temptation to wish away this time between the times until it is over so I can get on with my life, but this is a season to be grasped by both hands. Through this season, God is teaching me how to be completely reliant on Him; this is something that I have never been able to do. In this season, nothing is in my control and nothing is for certain. But, when you think about it, it is also very true of life on the outside. The only way I can get through this is to trust that God will look after me each day. By no means does this mean to say that I may take liberties and do nothing. What it means is that, while I am learning to wait, I learn to prayerfully consider my next steps before taking them. This is certainly not my default position; I'm more of an act first think later kinda gal which is fraught with disasters waiting to happen. 

I am still very much a novice at this discipline, but I know now how to live in the time between the times, regardless of the scale. Wait. Pray. Act.

In The Heart

My pain is real and my heart is hurting, but this I know with all my heart, mind and soul - my God, my Saviour Jesus Christ is real, is tangible, is true and has overcome all pain suffering and death. This is the paradoxical truth. I asked many "Why" questions in my last post Behind The Smile, but it is not the final word. My heart is suffering, but at the same time I have found peace. Not a superficial "feeling" type of peace, but one that holds me firm, one that anchors me in the storm.

When I had cancer three years ago, I often told God that He didn't love me because He was allowing me to suffer in such a horrific way. There is a difference this time round. I know God loves me, not because of what happens in my life but because of what He did for me when He was on the cross. Jesus went through all the pain that I went through and much more because He loves me. He felt the sting and still bares the scars. As He hung there being crucified, mocked and hated, there was love in His eyes and forgiveness in His heart. He didn't have to go through what He; He chose to because He loves me. This is why, when my life crumbles I run towards Him and not away from Him, because He is the only one that not only understands, but has and will overcome this broken world.

Jesus has painted a great canvas and the cross is the centerpiece. At some point, all of us will arrive at that crossroad. Trouble will come, I know this well, but God is good - it is the great paradox. Following Jesus does not mean that you avoid trouble, but it means that when trouble comes as it will for all people, there is  an ever present anchor that will never fail.

My suffering and pain, beit in cancer or otherwise, does not have the final word because it has been overcome. The final word is in my heart and His name is Jesus.

Behind The Smile

A smile is a versatile facial expression. It can be used to express happiness, joy, comedy and love; but equally, it can express or cover up disgust, hate and sadness. People tell me that I smile a lot. A little girl once said that it would be really hard to tell if I was actually sad because I would still smile. She is right. Most of the time, no one knows that I'm hurting, no one sees the pain; my smile is my mask.

Behind the smile is a desperate sadness, it is a pain that cannot be put into words. I am left with this feeling and I don't know where it has come from or what to do about it. It seems to have a protective mechanism; when threatened with exposure; the pain, like a puppeteer, contorts my face into a smile to combat the vulnerability that is attempting to take control.

I hate my life. I hate what has happened to me and what continues to happen to me. Why must I carry on? Why do I have to do as I'm told? Why do I have to continue to fight? And for what? What good does it do for me? What do I gain apart from more scars? Be positive, I'm told. What other option do you have, I'm asked. I am suffocated by my struggles and all I want to do is scream. This is as honest as I can be about how I'm feeling at the moment. But there are no answers that will take this burden away from me.

I write this with tears streaming down my face. I knew that this eruption was fast approaching. I could feel it gathering momentum over the last few weeks but especially the last couple of days. I tried my best to stop it from surfacing but it is cunning and chose to manifest itself in other ways. Irritation, trouble sleeping, non compliance, and the feeling of a constant lump in my throat were just a few of the signs. I tried to get ahead of the game and resolve the issue before it dissolved me. I tried to give myself space, because that normally works, by escaping off the ward last night so that I could remember what it was like to be free but unfortunately, I was spotted, twice, so had to return. Next time, I must take a mask. I wanted to keep walking, never to return, but there would be nowhere to go without being immediately being frog marched back to hospital. I know what I did was reckless and I know I shouldn't have put my physical health at risk like that, but I was desperate, I wanted to be me again. I have no control over anything in my life and trying to regain it is futile, as I have found out.

I guess this had to happen. I guess, at some point, I had to grieve over the pain and the loss. This is the pattern; once the immediate physical threat has subsided or kept at bay, I unconsciously start to deal with the emotional baggage until it surfaces to the conscious. It guess it is probably better to deal with one onslaught at a time, maybe I should be grateful.

This time, I have no epiphany, no hope inspiring words of encouragement. Just grief. But it is grief that is necessary for healing. This is part of the storm. I've know what's behind the smile and now you do too. Maybe it is the first step to knowing comfort.

In Loving Memory

This entry is dedicated to Aaron and all those who love him. May your soul rest in peace.

Dear Aaron,

Even though my words will disappear into the ether, I write them in memory of you. I did not know you well, I have only spoken to you a couple of times on the ward, but I want you to know that you were in my thoughts and prayers. When you came into hospital a little while ago, I guess you knew that you wouldn't be coming back out. I don't know what it is like to know that your time is running out rapidly; to have your life taken by cancer so young. I don't know how you coped or how you felt, but I prayed that you find peace, I hope that came true. It is clear that you are loved dearly and you will be missed sorely. The pain that those closest to you are going through is unimaginable but I hope that they can find comfort in knowing that you are no longer suffering. May all those who read this letter to you keep your loved ones in their thoughts and prayers.

We miss you but maybe we shall meet again.

All My Love,

Your Comrade In The Fight Against Cancer