I thought today would come and go and not really feel any different, but I was wrong. Today marks an entire year since I had my transplant. Today marks an entire year of life that I was not supposed to see, being lived, enjoyed and celebrated. Today I can look back on where I was this time last year and thank God for how far I have come. Today also brings a touch of sadness though, for while I may be here, there are others I met along the way that are not. Others who I shared tears and laughter, fears and hopes, dreams and sorrows with, who were not so lucky (for whatever reason) as I was. Yet here I am. Has this experience changed me? Well yes and no. My DNA has changed, I am now closer genetically to a stranger than my own family. My faith has changed, I have learned to trust more in God and less in my own abilities. There is a couple of verses in Proverbs that state “trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight” and that is what I am learning to do, I have to trust in God even if I don’t understand the why’s and wherefores’ about a situation, even if trusting in Him means having to read six books on death in order to write an essay for Uni (oh the joy ;o) I no longer trust my body to do what it is supposed to and take each day in remission as a bonus, after it has stopped producing healthy blood cells not once but twice now. However, in many ways I am still the same overly optimistic, horrendously grumpy, cheerful, bad tempered, loving, hurtful individual that I was before this journey started. I still get things right but also get things so wrong, I make mistakes but learn from them and I am just so glad that I have had the opportunity to do so. I also get to tell my sister she is now at least 40 years older than me which makes me laugh. So what does the next year hold for me? If nothing else I can honestly say I have no idea. I guess there will be more treatments and tests, lectures and essays, more friends to make and others to say goodbye to, more to learn and also in my case to forget. In the next year there will be 365 new sunrises and sunsets and I can’t wait to see them all. Oh I know they won’t all be happy and full of joy but for me they are all a bonus, a gift and one that I intend to enjoy and share with you (oh the joy I hear you cry ;o) but without you in my life the last few years of fighting would have been purposeless and void of true meaning for what is the point of life if not to share (impose) all of it, the good, the bad and the indifferent with those you love and to be there to share in their moments too. Love you xxx
On the 13th of February I turn 1. It is hard to believe that almost a year has gone past and I am still here. I am one of the lucky ones and I do know that. In a year when we have lost so many, I still get to wake up each morning and face another day, both the good and the bad bits. I get to love and laugh, to fight and argue, to be right and shown how wrong I am and trust me that happens a lot. I get to talk to my loved ones, to struggle with lectures and essays, to go to church and worship with others, to try to find just where I fit in this crazy thing we call life. I get to do all of that and I am so grateful that I can, but that does not mean that I am not overcome with the feeling of panic just now, as it was at this point the last time round that the leukemia returned. Most days I cope, but just now I feel a bit like a walking timebomb. In the next few weeks I need to have the results of a blood test to show whether my donor cells are in control or not, I need to have another bone marrow to see if I am still in remission or not, I have to have an intrathecal to see if the leukemia has made it to my brain or not (and yes my recent MRI shows I have one ;o) and chemo to try to stop it. I need to be poked, prodded, and bled and I need to do it all with my fingers crossed and a prayer on my lips. I need to do it and I am so glad I can but there are just some days when I get tired, when I want to shout why me, what exactly have I done? (But the reality is why not me, what makes me think I am so special) When the anxiety becomes overwhelming and I wish that I could hit the pause button and just take a breath. There are moments when I want to say no more, no more needles and injections, no more tests and doctors appointments, no more trying to be fine and strong and sure when I am not, when I am scared and tired and sore. Then I remember how blessed I am, how loved I am and the knowledge that I am not doing this alone, that you are there with me makes everything ok. So the 13th, unlucky for some, but not for me, this time I am going to make it. Bring on the doctors, the needles, the chemo, the waiting for results, for if nothing else these last few years have shown me that there are some days when I may be down but I am not out, not by a long shot (I hope ;o) xxx
So this time last year my house was full of friends and family all coming together to welcome in 2020 – I am not sure that was our best idea ever. This year it is so different. To begin with this year I am no longer a genetic match to any of my family members (I am not sure who wins there ;o) and my house is fairly empty with only three of us in it tonight, dad, Oliver and myself as mum sees in New Year in hospital after a suspected heart attack at the weekend. She is planning to break out tomorrow after discovering that hospital is not as much fun as she thought it was – I have been telling her that for years. What a way to end the year. Mum was the fit and healthy one and I know that I have to take a fair bit of responsibility for her Inverness vacation as I have put her under so much stress these last few years. Even saying all of this I do realise how lucky I am. I have made it to the end of 2020 with all of my family still here, even if we are not in the same building and are somewhat bruised and broken we are all accounted for. There were a few points this year when I was not even sure I was going to make it, yet here I am, home, studying at Uni and training for the ministry. It may be hard but I am doing it and this is only because of the support of my wonderful family and amazing friends (trust me you are the best group of people anyone could ever ask for in their life), the donor that is saving my life and also due to all the fantastic NHS staff that have and are keeping my family going.
Please, please think about these staff tonight if you are planning on partying, and then rethink as staying in and staying safe is the best gift you could ever give them.
With all this in mind what about 2021? Well, I am just going to tiptoe into the New Year. I am going to take it one day at a time. I am going to try to be a nicer, kinder more generous version of myself and I am I going to try and show and tell all of you, who are so dear to me, that I love you as often as I can, because we honestly don’t know when the last time we might say those words will be. I LOVE YOU – see I have started already. I am going to tiptoe into 2021 but I am going to do it full of hope and faith. Faith that God is in control, even when I can’t see it. Faith that I am following His path. Faith that I will have the strength to deal with whatever 2021 has up its sleeve and let’s not pretend it is is going to be a cakewalk. Hope that my family is healed. Hope that the vaccine works. Hope that my friends lives are full of peace, love and happiness. Hope that hurts are healed and lessons learned. Hope that this time next year my house is full of friends, family and love because out of the three of them, faith, hope and love, the greatest gift of all is love. Have a happy and peaceful New Year and see you all in 2021 (after I have rescued my mum ;o) xxx
One day the phone will go and I will get good news. You have won a new car, you don’t ever have to write and essay again, they have discovered a cure for cancer, you know that sort of thing. My phone calls tend not to be like that and today was no different. Turns out my last blood test shows I have toxoplasmosis, go me. For those who don’t know what it is ” toxoplasmosis is a parasitic infection that infects a large proportion of the world’s population, but rarely causes disease. Certain people, however, are at high risk of severe or life-threatening disease from this parasite. They include infants who are infected at birth, people with AIDS, people with cancer, and people who have had bone marrow or organ transplantation.” Yeah me. Sometimes I do wonder who I have annoyed upstairs!!! On the plus side no matter what bug is living in me nothing is stopping me putting up my Christmas decorations, well apart from essay writing which I should really be getting on with. Maybe if I am lucky I will lose the phone in the Christmas decorations and then I wont have to deal with real life till next year when I take them down, or maybe I should just turn it off asking people to ‘please don’t leave a message after the beep – unless you know I have won a car, you have cured cancer etc.’
I have the best dad in the world. He just drove for 10 hours so that I could get my new cells – and while there may have been millions (or more) of them in this bag – this is the actual amount that I was given after all that driving.
So as it was explained to me, the kind of leukemia mutation I have is not that afraid of chemo! Why does that not surprise me??? There is very little that scares me any more so why should my cancer not be cut from the same cloth ;o) Giving me these cells means that it should reduce my chances of having another relapse, but again as my doctors explained (thank you very much ;o) my kind of cancer does not like to give up without a fight. They also had the grace to look a bit sheepish when they said that any reaction to this dose will probably start within 4 to 6 weeks. I know Christmas/New Year but really what other choice is there? However, I am totally full of faith tonight (or maybe that is the piriton, who knows) and I just know that this is going to work. I have not spent the last week trying to write an essay on ‘what is preaching and what is its chief end’ for it to not count for anything (I would like to say that I could tell you the answer to that question but I will have to wait for my lecturer to tell me if I actually know ;o). So there you go cancer, there may be very little that scares you but my God, my family, my friends, my donor and my NHS (I feel after this many years that they are mine ;o) are bigger, stronger, better and more courageous than you and we are going to win. If all else fails I also bought toffee on the way home to bribe my new cells, some might call it stress eating but if it works……so maybe it is the piriton AND the sugar that are making me so positive but as I have already said if that works….
So I got the phone call today. I have to go back to Glasgow for 10.20 on Thursday morning (although I am not able to stay in Glasgow due to Covid) to get my top up cells or donor lymphocyte infusion (DLI). The idea being that this should help prevent a relapse which is something that I actually think would break me at this point. While a DLI is not a cure-all and can cause problems of its own it is the best option available to me right now.
What amazes me about this whole process is that some stranger not only saved my life when he donated the first time, but he has repeated the process, and I know it was not easy for him this time around. I may not know his name or anything about him but I know that they only managed to get a small amount of cells from him because he was unwell. He was unwell and still donated. There are truly some saints who walk amongst us.
So maybe this is it. Maybe Thursday is the end to this nightmare? Maybe I can start to breathe again? Although I don’t know if that will ever truly be possible, when every few months they have to stick needles in my hips and spine and then I have to hold my breath until the results come in. I guess all I can do is hand it all over to God and see where we go from here. At least if nothing else this journey called life is not boring. I sometimes just wish mine had less needles and doctors in it (and maybe more calorie free chocolate and kisses ;o)
Tonight I am struggling. Not something I often admit to but tonight the panic is getting the better of me. Today I thought about getting a kitten. Not a huge thing, just a little kitten instead of the puppy I was promised when I relapsed last year (yes my mother was panicking but she said those words ;o) However this coming weekend I have to go back down to Glasgow for some tests and things and it left me thinking what if I get the kitten and I am not here in 6 months time? What if I get the kitten and they find that I have relapsed again? What if? What if? What if?
This week I had my first assessment for Uni and while I was worried about it, it is nothing like the fear of having to go to Glasgow and sign the form with these words in it
“I understand that donor lymphocytes offer the chance of long term survival. However, I also understand that there are definite risks to my life and health resulting from the performance of this procedure.”
There are some days when I just don’t think I am strong enough to keep doing this. There are even more days when I don’t think I am strong enough to keep putting my friends and family through this – it just feels so selfish. In order to even attend the appointment I risk infecting people I love with Covid and that just feels crap (sorry but it does). It has been over 5 years of fighting and most days I am doing good, doing great even. BUT there are some days, days like today, when I know that tests and procedures are required and breaths need to be held as I wait for results that I just want to run away and hide. I know that none of us know the day we will be called home, but sometimes I get tired of looking death in the face and saying ‘come on if you think you’re hard enough’ because each time I do that I lose a little of myself to him. But the reality is what choice do I have? These are the cards I have been dealt and it is only by playing the game that I can find out if I hold a wining hand or not! Cue a Kenny Rogers song.
It is hard to believe that I have been in Glasgow for over a year now but finally the doctors are saying I can go home soon. While it is true that I need a top up of cells from my donor, he is sadly unable to do this at the moment, so there is no real reason for staying down here. I spoke to the docs today and asked them what the chances are of the leukemia coming back yet again and they told me with a cell top up it is 50/50 – I did not bother asking them what the odds are without. So 50/50 I get my life back. With this in mind I have confirmed that I will be starting Uni this year (although I am not sure that my brain is agreeing with me on this ;o) Here I am now being faced with reading books that have words with more than one syllable when in reality Netflix has become my new best friend over the last few months. I can tell you everything you need to know about Hawaii 5-0 but when it comes to the differences between exegesis and hermeneutics that is much more of a struggle. I must admit there are days when I have questioned whether staring training now is a clever idea but if nothing else the last few year have taught me that life is short and while I may not be feeling completely up to the challenge I am not willing to run from it either. So for now I can start planning on moving forward, for moving home, for trusting that this is still the path God is asking me to follow, to pray that my donor is able to give me the cells at some point, to believe that a 50/50 chance is enough and that my brain can cope with something more than bad tv cop shows – this last one is probably the most doubtful but only time will tell ;o)
I would never consider myself to be a delicate flower, more baby buffalo, but even I appear to have met my limit. On Monday I had to go in for another bone marrow, lumber puncture and chemo. I have lost count of how many I have had but lets just say I am now a pro. The bone marrow was as good as having a needle stuck in your hip bone can be, but then they moved on to the lumbar puncture and let me tell you it is nothing like you see on those made for tv films. There I was sat on the edge of the bed, good as gold, as they tried to push a needle in to my spine – well one minute I was sitting the next minute I was waking up to an oxygen mask being put on my face and then if that was not bad enough I decided I had to start throwing up. You would honestly think by this time I would have seen/done it all, but obviously not. To top it off I was told on Monday I will need a top up of cells as my donor count has dropped again. This means that I will be stuck in Glasgow for at least another few months as there could be issues with this procedure. On the plus side my mother does like a good charity shop rummage so she is in her element now the shops are open again.
With all this in mind, one might not think that this is the time for make huge life changing decisions, however it turns out that is not the case. This week I had to decided whether I was going to start training for the ministry as well as start Uni and this has not been an easy decision. While I could put it off for another year I have come to realise how short life is and after much prayer and debate I found myself ticking the yes boxes and as of Friday I start my training. While I have no idea how easy or difficult the next stage of treatment is going to be I need to try to move forward. While it is true that I am not in the clear yet, I feel that this leap of faith is the right one to be making, after all there is very little that can stop a baby buffalo (except for a needle in the spine ;o) especially if she has faith.
So I was asked a couple of weeks ago by a friend why I had stopped posting updates and it has taken me a while to find an answer to that question. I guess I though that the main reason was that with all of us in lockdown we were all in the same boat and I should just get on with it and I guess that is what I have been doing up to a point. On reflection however, I believe that the main reason that I stopped posting is that I have lost myself a little along the way. Unlike the last time fighting this disease, the spark that is in me (that is me) has become a little diminished and I am not sure how to get that back. I guess that this time I am more tired than previous and it means that everything is just that bit harder. I have asked the hospital if I can go back home but they have said no just now to that little idea. This is due to the fact that my own cells are not giving way to the donor cells (I always knew I could be stubborn but did not relies that went down to cellular level) and they need to do some more tests to decide their next plan of action. They have said that it may mean that I need a top-up of donor cells but that raises the risk of GVHD so they are just playing the waiting game. On the plus side this would not mean having to go back in to hospital as I can continue to be treated as an out patient but really I am just tired of this disease. So while I may have given up a bit in the last few weeks and months I have recently given myself a bit of a shake and have even been in contact with the Church of Scotland and Aberdeen Uni to see if my places are still available for this year (chemo brain beware) which they are. So my plan now is to try to pull myself together, to continue with the tests and treatments but to get home as soon as possible as both mum and myself need out of here. This is the view we have had for the last 3 months and I can tell you this even mum is missing Glenelg at this point.
All I can say just now is that I am so grateful to the friends and family that have supported me thus far and can’t wait till I can see you all in person again, but until then keep safe and be kind to yourselves and each other. Love you all xxxx