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.