A month ago today my father died. One month. Four weeks. 28 days. 40,320 minutes, since he took his last breath and I have finally discovered something, I don’t know how to grieve. I know how fill in forms, how to make phone calls to the bank, the electricity company, the newspapers, the oxygen people. I know who to phone when dad’s car decides to play up (again ;o), I know not to avoid hospital appointments, to keep writing essays (although they may be of a questionable quality), to keep working at my placement. I know that most days by 2pm I am exhausted. I know all of this but I have no idea how to grieve, how to say goodbye to the man who pretty much hung the moon and the stars for me. I know that this is partly due to the fact that I have learnt over the last few years to be strong, to hold it together when receiving bad news, then worse news, when getting jabbed and poked and prodded, when hurting. To always look to the positive, because a positive attitude when fighting for your life has to be beneficial – mind over matter and all that (although I am pretty sure there were many positive people who lost that fight). To keep going no matter how battered and bruised you feel (or can no longer feel). While all this may be true, I also think Covid and all its restrictions, may be making the grieving process more difficult, and not just for me, but for so many people who have lost someone over the last year. Because, you see, grief while personal is also something that happens with friends and family, it happens in community. It happens over a cup of coffee, in visiting a friend, in sharing moments and memories, in visiting place that were important to you and your loved one, it happens in the arms of someone else who has also lost, it happens in the silence, it happens in a hug offered after a funeral. It happens in all these and so many other ways, but it struggles to happen when these things are not possible. It struggles to happen when we are unable to meet others, it struggles to happen when all who are left are trapped in a house together and private grief is impossible, it struggles to happens when you are trapped with the clothes and the possessions of the person who has died because charity shops or recycle centres are closed, it struggles to happen when there is no place to sit, to light a candle, to reflect and let God in. It struggles to happen when we are all stationary and moving forward is no longer an option. In a year when we have lost so many people, one in which there are even more left grieving, we have all been left with wounds. Wounds caused by death, by loss, by isolation, by fear, wounds caused by riots, and hatred, by unemployment and loneliness, and these wounds are going to take a long time to heal, for we are sociable people, we need each other to love and laugh, to hold, to weep and to mourn with. We need each other in the highs and the lows of life, and without that interaction, what we are left with is the walking wounded; those of us who move forward, who keep putting one foot in front of the other but whose wounds have not been treated. In the months to come, we who are left, are going to have to find a way to heal. We who have lost loved ones, homes, jobs, identity, faith, who have not cuddled our grandchildren, or held the hand of a dying partner, who have not been able to attend school/college/university, who are scared to leave the house, who have missed hospital appointments, who have nursed and treated so many sick and dying patients, are going to have to find a way to move forward, to recover. We are going to have to find a way to mourn and to grieve, for until we do that, we get stuck at the cross and miss out the glories of an Easter morning and that is not good for anyone, trust me I know.
I know that I have used this blog to talk about my cancer fight, to put all the highs and lows, the good and the bad, down on paper (so to speak) and out of my head but tonight I am using it for something slightly different, although it is still connected. Tonight, I am using it to tell you about one of the most amazing people I have ever known. This is someone who has supported me in all my crazy plans and schemes, who taught me to talk (yes he is to blame), to walk, to ride a bike, to drive a car, who taught me physics and maths (both of which I am awful at). He showed me how to fight for what was important, to stand up for the voiceless, how to be stubborn and pig-headed, how to laugh and cry. He taught me that following your dream was one of the most important things you can ever do, but loving and being loved, was by far and away the most important. He is the man that has stood beside me all of my life, picked me up when I fell and told me I was being an idiot when I was (see he was also very strong and brave). He has driven me to my appointments, fought my corner, supported me on my ministry journey – after all who does not want to just work one day a week ;o) I hate that my leukaemia took so much. not just from me but from the time mum and dad had together over the last few years, but I am so glad that we got home when we did and have had the last few months together as a fantastic, loud, aggressive, opinionated, loving, laughing and caring family. My dad taught me so much but I am not sure he taught me how to get by without him but as of yesterday I am going to have to try. Oh I know I am going to make mistakes, I am going to do things that would have driven him crazy but I am also going to try to find a way to be the person he saw in me, and if I can be even half the person he was then I think I will be doing ok.
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)