Saturday, 30 November 2013

Why Should I Wait For True Love?

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

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

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

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

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

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

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

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

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

Thursday, 28 November 2013

To Live Or Not To Live? That Is The Question

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

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

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

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

Wednesday, 27 November 2013

Heart Thoughts

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

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

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

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

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

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

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

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

An Answered prayer

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

Friday, 15 November 2013

Going Home

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

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

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

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

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

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

Saturday, 2 November 2013


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