The Cancer Diaries

So today I did something that is long overdue.  Today I wrote a letter to my donor.  It is such a hard thing to do, to find the right words to say thank you to a total stranger, a stranger that saved your life.  I am not sure if I have managed to really show my appreciation and gratitude, but I have given it my best shot.

So why am I writing it today you may ask?  Or even, why did I not write it before?  The simple answer is that it always felt a bit like tempting fate (yes I know, but still ;o) however today I just thought sod it.  I must take a quick trip down to Glasgow for a hospital appointment on Monday, and yes in truth I am terrified.  I hate the poking and prodding, and I hate the fact that it causes me to worry that they will find something.  I also hate sitting with people in a waiting room knowing that for some reason I got lucky but not all of them will.  Yes, I know we all have to die sometime, but few people have to face their possible demise on such a regular basis as those of us who are diagnosed with a life-threatening illness.  The funny thing is that day to day I can forget all about leukaemia, but when that hospital letter comes in, then all bets are off.   And even then, during the day, while the fear is still there it easily ignored, at night however it grows arms and legs. There is something about being alone in the darkness that allows the panic to take root and grow.

The other day I came across these words on Facebook.

“I dream of never being called resilient again in my life. I’m exhausted by strength. I want support. I want softness. I want ease. I want to be amongst kin. Not patted on the back for how well I take a hit. Or for how many.”

I don’t know who wrote them, but I do know I also dream of that day.  I dream of the day when I don’t fear a bruise, or being tired, or a cough, or blood test results.  I dream of the day when I don’t have to be brave and strong, when in truth all I want to do is run and avoid (I cancelled this appointment once already, but hey it was the week before Christmas, kind of a busy time). So Monday I will go, I will smile and laugh, get poked and prodded and wait for the results, which I know now will be fine, but come 2am I may not be so sure. 

Love always, xxx

So tomorrow is going to be an interesting day, one filled with equal amounts of joy and fear. Tomorrow, after 7 years of treatment, I will hopefully have my last chemo. It is hard to explain the joy of knowing that means that I will no longer have to consent to procedures that “may cause significant harm or death,” I will no longer have to worry about having fits as they stab and jab me in my spine, or about having biopsies every three months (although they will still happen from time to time). No more waiting with breath held for results, knowing that the possibility of the leukemia being back is always there but praying that no trace will be found. But with that joy comes the fear, fear that without the chemo, without the regular checks the darkness that lives in my blood will start to grow and multiply again. But the truth is there is nothing I can do about it except leave it all in God’s hands. There is a sadness too as I write this, because I know that dad and Fiona would be so happy that this day had come. In fact I can hear Fiona telling me that it is about time I stopped pretending there is something wrong with me. So tomorrow, I pull on my big girl pants one more time, I let them stick needles in my bones and my spine, I let them take the biopsies and give me the chemo, and then I lift my head high and walk out into a new future, one with less hospital visits and more possibilities than I ever could have imagined at the start of this journey. I do this, however, knowing that there is empty space beside me where love ones should be, that there are wounds which are still raw and hurting even now. But I also do so knowing that no matter what the future holds I will have you, the best friends and family anyone could ask for, walking beside me, supporting me and cheering me on wherever this path leads and you have no idea how much that means. Love and thanks as always xxx

There are some days when I don’t think I am strong enough for this. There are some days when I feel so much more than just bruised and broken. Today was one such day. While thinking about Fiona’s funeral (nope we still have not had it), mum and I got out dad’s kilt and it hit me then that I am not even close to being over the loss of him, never mind dealing with Fiona’s death. Then in the post I received not 1 but 3 hospital letters, oh such fun. To top it all I am trying to keep up/ catch up with Uni and keep on top of my placement. Sometimes I think the One in charge believes that I am Superwoman, but I can tell you now that I am not. This is hard, so much harder than I could ever imagine and I just want to keep picking up the phone to talk to her, and at least once to shout at her – after I noticed the rude message that popped up on my phone when calling Chad in front of the minister, only Fiona would preprogramme my phone do that ;o) I know tomorrow is another day, and it will be better I hope (well at least there is not post ;o) but today I feel a bit like I am drowning and there does not seem to be a life raft near me. Tomorrow is another day, but today right now I can officially say life sucks xxx

This is where I always come to deal with the hard stuff in life. You know the you have leukaemia, the leukaemia is back, the chemo is not working, mum’s heat attack, dad’s death, you know the hard stuff. But never, not once did I imagine I would be trying to put into the words the pain of losing my sister. Fiona was the loudest, kindest, most caring, annoying, argumentative, brilliant, funny, loving, vibrant spirit you could ever be lucky enough to meet, she brought light, life and joy into the world and I can’t believe she is gone. Writing here has always helped me in the dark times but try as I might I just can’t find the words this time, I can’t find the light. I am blessed that she has left me the most amazing brother-in-law, three wonderful children and the greatest bunch of friends – all of whom have a little bit of her in them, so I guess she is not really gone. If nothing else this year has shown me that you never know what is around the corner, so love each other harder, say those words you are too scared to say, don’t put off the important thing till tomorrow, show each other how much you care, love each other harder (I may have already said that). Life is short and we don’t always get a second chance. I would end with something about Fiona resting in peace but you know Fiona she is probably causing mayhem as we speak. xxx

Hello from Aberdeen. Tomorrow I start to attend lectures at the University here. Ok, I know I started last year but sitting in my own front room is not quite the same. In fact this time last year I was still in Glasgow, I was yet to start my placement in Strath & Sleat, or Drumnadrochit, mum had not had her heart attack (or little incident as she calls it) and dad, dad was still here. How things change. For me this must be one of the most bitter sweet moments of my life. It feels right being here, I know that this is what I am supposed to be doing but it is terrifying being near so many people when Covid numbers are so high. It feels right being here, but I miss my dads gentle humour about what I am doing, but I know beyond doubt that he was proud of me. It feels right being here but sometimes I can’t help wondering why I made it when so many others did not. It feels right being here because this is where I know I am being called but I also have to wonder why me, what have I got to offer? Tomorrow I will walk in to Aberdeen University aware of what a privilege that will be, how lucky I am to be here (not just in Aberdeen) and what a difference a year can make. I will be remembering both the good and the not so good, knowing how blind we are to what our future holds but trusting God to keep leading me on the right path and thanking him for the wonderful people that he has placed in my life (that is you by the way :o) Love as always xxx

Ever had one of these days? I seem to be having one of these lives. Last week I had to go in for my intrathecal but try as they might (jab, jab, ow) they could not get the needle in between my spine so today I had to go back in again to have it done under guidance. First they tried it without (jab, jab, ow) then they tried it with pictures, but still struggled (jab, jab,ow), however when the ow became an AAAAHHHHHHHH they knew they were in the right spot. They then took some fluid out to send off for testing and put the chemo in. However at some point during that process I decided to pass out, still with a needle in my back, and possibly have a small fit, the expression “bite your tongue” is one I am now more familiar with than I need to be. Thankfully when I came back round the needle was gone, the chemo was in and all was well with this human voodoo doll, or as well as can be. On Tuesday I have to go in again for a bone marrow (jab, jab, ow) and then wait on all the results. Do you want to know something? I am done in. Tonight I am beginning to question whether I am swimming, treading water, or drowning and just don’t know it. I am so tired. They came round today and asked if I wanted to keep having these intrathecal procedures and how does one answer that, yes (I mean what else can happen) or no (cross our fingers that the cancer is gone). After getting all this done, they kept me in for observation and then I got the bus back to Drum, back to my placement and tomorrow I will get up and keep putting one foot in front of the other, tomorrow I will smile and engage with everyone I meet but tonight, tonight I am hibernating, disengaging from the world (especially the one that is full of needles), licking my wounds (ok maybe not actually the one on my back) and spending some time with God, because without God (and you lot) I have no idea how I would be doing any of this. Thanks once again for listening to this grumpy pin cushion princess, love you all xxxx

Today has been an interesting day. Today I moved to Drumnadrochit to begin a 10 week placement in the Church of Scotland there. This is something I never imagined I would be doing this time last year. In fact there were days last week when I did not think I would be doing it, as I struggled with exhaustion on a level I have not felt in almost a year. But here I am. Handing everything over to God and trusting that He has me exactly where I should be. Trusting God, even when driving here today was so very difficult, as it is the first time that I have left to go somewhere and dad has not been there to tell me to be safe, to check this, that or the next thing, to tell me to phone when I arrived. I was halfway over the hill when it hit me, and gosh I miss him, crying and driving down that road is not something I would advise. But then I had to laugh, as I have peacock seat covers in the car, so there is a little bit of dad coming with me even if he would never choose to leave Glenelg to go work for the Church (although his family came to Glenelg to work for the Church). So here I am, ready for my next great adventure. I would like to say bring it on, that I am ready, but with the way my life tends to work that might just be asking for trouble ;o) Instead I tread softly into the coming weeks, softly but with a small spark of hope in my heart.

There are some days when it feels like cancer is winning, and I don’t mean that it is back (at least I hope not) it is just that it takes and takes and takes and gives very little in return – nope nothing, nothing in return. No that is not true, it has shown me the true meaning of love, love of God, love of friends (thank you Fiona for driving me to Inverness) and love of family. But while it has shown me the true meaning of love it has also taken time away from me and those I love. Anyway, I went for a bone marrow two weeks ago but it got damaged in the post, so I had to go back for another one today. Every time it gets harder to walk in to the room where you know they are going to cause you pain and all you can do is laugh and all they can do is say “sorry, oh by the way in a months time you have to come back for a intrathecal.” Not a needle in my bone that time but one in my spine to give me chemo and check for leukaemia cells there. Today they also took blood to see if my transplant is working better and if my beasties have gone – my life is not so much sex, drugs and rock and roll, more blood, bone, and beasties. Every couple of months I have to cross my, well everything, pray and hope for the best, but living on hope is so hard at times. It seems like I am always either getting stabbed or waiting on the results. Some people think what I do is brave, but tonight all I feel is tired and numb, so numb. And I know that tomorrow I could get run over by a bus, and there are millions of people worse off than me, but when you are constantly being tested, treated or waiting on results life can become somewhat grey around the edges. Grey and numb that just about sums me up at the moment, but tomorrow is another day. Tomorrow, who knows what tomorrow will bring, while there may be no sunshine, sparkles and glitter (I don’t live in that kind of world), there will also be no needles and tests (yippee) instead there will be friends, family and God and I think that will probably be enough.

Just for fun, this is the needle that they stuck in my hip bone, sort of like a corkscrew – maybe I am like an old wine xxx

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.