“I’m going to discharge myself from palliative care!” were my excited words to my best friend Kirra just a few weeks ago. I discovered this was an option after reading a blog post from a fellow young terminal cancer sufferer. She discharged herself after responding well to a new treatment, and like me needed no extra support to manage life with her terminal illness. You can find her blog here: http://www.dearmelanoma.com/.
I haven’t actually had much to do with the palliative care team, though I’m sure they’re awesome. Despite this, I HATE being under the palliative care umbrella. HATE IT. For me, it screams ‘YOU ARE GOING TO DIE SOON’ and doesn’t match what my life looks like. Everyone assures me that they aren’t just there for the death part, more so pain management and support in leading as normal a life as possible. But I can’t help but see it as something I want nothing to do with. The kind of pain they manage, because my doctor no longer can or isn’t involved in my treatment anymore, usually means death is fairly imminent. One night, not long after I was discharged, a lovely palliative care doctor came to talk to us about death, about what to do when I die; if it’s at night, in bed, etc. It was one of the most confronting conversations I have ever had and I don’t remember much about it. They called me a couple of times after and I was quick to tell them how fine I was. Last phone call, I politely said I would call them when I need them. So when Kirra and I were chatting, she ever so gently reminded me that it’s been no biggie having them linked in and I should probably just kept it that way so when I need them everything is ready to go. But I was pretty adamant. They can disappear for a while! And why not? Everything in LyndseyLand has been ticking along smashingly. I’ve been well and active and tolerating chemo so well that my doctor decided to take away my breaks and hit me a bit harder. We all know that in LyndseyLand, more chemo= more time, so this was a winner in our eyes! Surely I wouldn’t need palliative care for aggggeesss yet?! I hear you asking, Dear Reader, so why is it a big deal? I don’t really have an answer for you except to say that I suspect that it’s really just another way for me to avoid the fact that I am actually dying. I don’t want to be dying and certainly don’t want to be labelled as such.
A few days later I was hit with that stinky, week old trout of a reality check. A nasty fever and some pain took me into ED and meant another stay with my friends up on ward 5B. I remember two of my closest friends, Kirra and Laura, feeling very melancholy about me being in hospital again. We texted late at night and they couldn’t explain why everything didn’t feel right this time. I brushed it off assuring them I was fine. Every other time that I wasn’t fine, I knew within myself well in advance. Plus, I was already feeling much better and pretty positive that it would be a quick stay. I was wrong. Boy was I wrong! A routine CT scan to check the cause of my pain lit up like a firecracker. One nasty spot on my T6 vertebrae meant so much more than what I was prepared to hear. My cancer had moved into my bones and established itself there quite comfortably. And where there’s one, there’s bound to be more. More tests found them easily enough. Another one on my T3 vertebrae and ninth rib. I remember my doctor breaking the news to me. It was the first time I’d heard bad news alone and it destroyed Mum that she wasn’t there to hold my hand (as she has through every other bump in the road). I felt numb and terrified. Was this finally it? The beginning of the great decline? I felt as though I was standing at the top of a huge, rocky mountain that I’ve been hiking up for a long time. All of a sudden, in that moment, I reached the top and a segway appeared underneath my feet. I began to speed back down the other side, wobbling about and loosing all control. We all know I’m not the most coordinated tool on the shelf, and I didn’t even have time to put on my helmet or catch a second to enjoy the view.
My doctor was quick to assure me that these new tumours in my bones shouldn’t shave away too much time. She was, however, honest in admitting it could really impact on my quality of life, especially as it continues to travel to the bones I need to weight bear. Apparently bone cancer typically spreads quickly and can get pretty painful and nasty. I will have radiation treatment to blast the suckers when this starts, and have started a new treatment to try and strengthen my bones and slow down the growth and spread. This has been a big contributor to what has been a month of hell. My body hates it. I’m currently writing from a hospital chair after my second dose of the drug so innocently named ‘Zometa’. My second episode of near 40 degree temperatures, hallucinations, pain, low blood pressure, dehydration, vomiting, and so much more you really don’t want to know. This is a big deal when you can’t take Panadol or Nurofen to settle it all down. I have to ride it all out with fluids and rest and lots of pain relief. I was also wrongly prescribed a nasty fluid tablet that did some big damage. Severe muscle weakness in my legs to the point of having falls and needing the walker again, terrible leg cramps that would see me wake screaming in the middle of the night, crappy kidney function that almost stopped chemo, severe fatigue, low blood minerals, etc. And all of this just before our Christmas/ New Year month. So life at the moment has been a whole bundle of hard. Hard for me, but even harder for Nyah who has watched her mum pretty much disappear. Thankfully, Ben has been on holidays and has distracted and shielded her a bit. I’m terrified of how different our days will look when he heads back to work and I need to stay awake for more than 4 hours at a time, and continue to try and fill her life with the happiness and new experiences that all 6 year olds deserve. Previously our school holidays have been rich and active. These days I can’t even take her to the pool because I can’t even get in and out of the sucker. So, you could say that dying has been front of mind lately. I’m not ready. I’m not ready to die and I’m not ready to be as sick as I am quickly becoming. I feel that I have transitioned into a new cancer phase. I was in the #ihaveterminalcancerbutimsmashingtheoddsandlivinganormallife phase. During this phase, my experience was to fight and gain. Fight hard and gain energy, strength and independence. I could work with that. The hard days were okay and fight was worth it because boy did I gain. These days though, I am just living in the #ihaveterminalcancer phase. The one where I’m just always fighting, fighting so hard, but my cancer is stronger than a brick shithouse. It’s been a long time since I’ve won any kind of battle and I’m so very tired.
I spend a lot of time thinking about what it will be like to die. Will it hurt? Be quick? Will I know that’s what’s happening? I often wonder, will there be someone there? Perhaps a passed family member that is standing in the corner and comes forward to take me somewhere? I think this is the thing that troubles me most about dying. I’m pretty sure it won’t hurt but I’m truly terrified of doing it alone. Throughout my whole life, I’ve never had to do anything alone. My Dad and Mum spoiled me terribly and held my hand while I faced every hurdle. They could fix anything. Then I got lucky enough to find Ben who treated me the same way. For some time now, I have been carried by the three of them, wrapped up in a happy little bubble. Every choice and movement I have ever made has been made with their blessing, advice and support. I wouldn’t have it any other way. We have tried so hard to parent Nyah in the same fashion, so that she can navigate through life simply knowing that we will always be her safe place. That no matter what she does, we will love her unconditionally and be there to support her. So this whole dying thing is not only the biggest thing ill ever have to face, it’s the first thing I’ll ever really have to do alone. In my deepest darkest thoughts, in those barely wakeful hours, I’ve caught myself wishing I could just take Ben and Nyah with me. Not because I want them to die, but because I never want to be without them. Of course, the horror of those thoughts quickly takes over and I realise what the heck I’m thinking. But, it is my sincerest hope that somewhere along the line, there will be someone there to hold my sweaty hand, lead me along whatever path one walks along into death, and tell me it will be okay.
One night soon after I came out of hospital, I think I almost did die. I remember lying in the hospital bed with Ben and Nyah fast asleep beside me. I was feeling really funny, kind of out of body, then all of a sudden it felt as if I was lifting off the bed. I can’t find the words to describe the feeling. It wasn’t pain medication induced and it’s something I hadn’t experienced before or am yet to again. I gripped the bed so hard and willed myself to stop and come back. I remember feeling quite peaceful up until I felt my body lifting, then sheer panic set in when I realised what was happening. I get the worst case of shivers whenever I recall this experience and that feeling of calm and peace. I have often heard nurses and doctors describe death as peaceful. That there is a chemical in the brain that takes over and makes it all okay.
I also spend a lot of time lately questioning my faith and beliefs. I started going to church and developing my knowledge of religion, specifically Christianity. I was not raised in a religious household, but everyone was very supportive of my choice to explore this. I admit, I started going because I was scared. Death is the great unknown and it is scary. So, I desperately searched for peace and something to ease the fear. I wanted to believe. I wanted to believe so bad that there is a heaven and that Jesus will meet me there. That I will rest in some kind of beautiful infinity, happy and whole. And I almost got there you know. But then one night, my faith was shattered by a single thought. And I just can’t regather the pieces. I was lying in bed, thinking about how much I want for Ben ‘after’. How I want him to be a husband again and find love and happiness. I almost feel the need to somehow start canvassing for him just to make sure he does, because boy does he sure know how to be a husband. The very best. So there I was wondering what it will be like to sit in heaven and watch him love another, still loving him myself and waiting for him to join me when it’s his time. And then it hit me, so violently that I actually spewed. What if he doesn’t want me anymore? Chances are, his next great love will be longer and therefore stronger and deeper than ours. I love him more every day, minute, second. So of course, if he grows old with another their love will be strong. I want that for him. I truly do. He deserves this and will give back nothing less in return. But when the time comes, and he walks through the pearly gates, who gets him? What if there are two of us waiting and he loves her more? I want him. He is mine. I was kind of okay with the thought that he will find love again, because I’d just always assumed we would be together again in the end. But really, when you think about it, that probably won’t be the case. So that was the moment my faith came crumbling down. Like I said, I tried to pick it back up. I asked a lot of questions to my little church community and Christian friends to get some answers. This actually made it worse. According to the bible, in heaven these relationships will no longer be of any significance. We won’t feel these connections and intense love anymore. We won’t have these labels or relationships. I think it is this that I hate the most. Because I don’t know who I am without my love for Ben and Nyah. My connections with them define my very soul. These connections are, in my mind, unbreakable through time, death and space. I do not want to reside in any kind of place that doesn’t maintain this in a tangible way. My idea of heaven was that I’d head up and watch. Watch my baby grow and live life alongside her, experiencing the full force of all those wonderful emotions mothers feel and sharing in her joys, successes and failures (just from a place she can’t see). So you can see my problem. I can’t possibly believe in this Christian version of heaven anymore because I’m not willing to compromise on my beliefs about my infinite love for my family. I wish I’d known what the bible says about heaven earlier. It was an awful shock. I continued to go to church for a few weeks after these awful realisations, but felt like a big fat phoney. I was terrified, however, that if I stopped going God would strike me down in some way. I hear you laughing at that Dear Reader, but I have cancer and I don’t want to mess with ANYTHING that could even remotely impact negatively on my life or time. I do feel sad that we aren’t an active part of that little church community any longer though. There is something to be said about people with faith. They are incredibly kind, generous, warm, loving and just genuinely good people. Their prayers were piled onto our little family in abundance and it’s my hope that Nyah will possess all these qualities as she grows. As for where I’m headed, I’ve decided that I do still believe in heaven, just my version. The one where I get beautiful angel wings and ride the rainbows and stars, all the while sharing in the lives of my loved ones. It’s a truly beautiful place.
There has been a lot of chatter lately about dying with dignity after the beautiful Brittany Manyard chose to end her life on her terms using a euthanasia drug only available to terminal patients in five US states at that time. (You can find her story here, http://thebrittanyfund.org/) People have asked for my thoughts on this as I face the same situation. We all know how cancer ends, and as I’ve said before it’s NEVER pretty. My cancer will eat me alive from the inside out. I will most likely end up in a hospice on palliative sedation which I understand to be the slow starvation and dehydration of my body comfortably through the use of pain medication, etc. So would I take the drug and choose when to end my life? Heck yes I would. In a heartbeat. Not for me though. For Nyah, for Ben, for my whole family. I don’t want Nyah’s last memories of me to be in a hospice, lying on a bed and wasting away, incoherent. It is my request that when this time arrives, she be told that I have already passed. I so desperately want her memories of me to be of a vibrant, whole Mummy. I also don’t want Ben or my family to have to sit at my bedside while I slowly fade away. Thinking at every turn ’is this the moment?’, then possibly facing a guilty kind of relief when I finally pass, because it will have been a truly traumatic experience. I would actually give anything not to be anywhere near the hospice. My home is my happy place. Ideally I would like to remain comfortable there. I’ve had many people tell me this is actually possible but again, what if Nyah came in one night or early morning for a cuddle (as she often does) and I was gone? I could never place that on her little heart. Never in a million years. The palliative sedation phase is easier to hide from her in the hospice. So yes, I am a huge champion for this drug. HUGE. I sure know I’d have a lot more peace if I could be guaranteed that my actual palliative stage was to be quick and painless for everyone. If I had access to the drug, my choice would be simple. I would wait until the very end. Until I couldn’t hold out on those pain meds anymore. I’m talking about the big stuff that actually takes you from being a person to a vegetable lying in the bed. I would read my daughter a bedtime story, try to express how much I loved her, say goodnight and let her fall asleep snuggled in my arms. I would then add my husband and puppies into the mix, take the tablet and simply fall asleep myself, wrapped in his arms. This is my happy place and this is how I want to die (of course Nyah would be moved after!). I’m the first to admit that I am the most politically naive person to ever walk the face of this earth, but I’m just not sure how there could ever be anything wrong with helping people die in the way they want to if death is imminent anyway.
I haven’t actually planned my funeral. Those who know me will find this very strange, considering I plan and control every inch of my life, down to the finest detail. I’m sure that you, Dear Reader, are quickly realising this too. Mum and I had a laugh about it during our last stint in hospital. I threw it out there that I don’t really mind what they do, but that I have a list of songs that I love and may be nice. I think she half expected me to pull out a detailed list, noting colour scheme, flowers, order of service, etc. Okay, I admit, this is more my style, BUT really I actually don’t care. As long as it’s not boring and long, and as long as everyone wears bright colours and flower crowns, I’m cool. I’d like to be cremated and rest in a nice spot under a beautiful old rose bush. One of those ones that still smells like a rose. It is my hope that Nyah, Ben and my family won’t feel the need to ‘visit’ me there too often. Mum and Dad bought me a star for Christmas so I hope that Nyah can feel our connection and access me whenever she needs as the stars appear each night. I wish that I could donate my organs. This is something I have always felt very strongly about. What a wonderful thing it would be, to give capability or life to another in your passing. There probably wont be much left that’s good in my body in the end anyway, but I hate that cancer has stolen this from me too.
When I was first diagnosed, we received a lot of advice on guardianship and power of attorney. It was suggested that I sign over all legal rights to Ben so that he was able to make decisions on my behalf and control finances, etc. It was hard learning that my liver could end up making me quite confused and incoherent. There will never be enough words to describe the anger this arose in me; the horror, embarrassment and indignity at the thought of no longer being me and of not being able to make legal choices anymore. Despite this, Noah’s ark would have floated again before I signed on that dotted line. Again, I hear you ask Dear Reader, what’s the big deal? Ben is my husband and has always and will always make the right choices for me and our family. I trust him with every fibre of my being. BUT, I want to die with my own power of attorney firmly attached. As Lyndsey. Another label that cancer is trying to steal as it strips me bare. I’m holding firmly onto this one though, and it’s comforting to know that even without power of attorney, when I no longer can, Ben gets to make all those decisions anyway. I know he will make those tough choices about my end of life in consultation with my family and my wishes.
So, I guess for now, I keep my links with the palliative care team and I give in a little. Give in to the knowledge that yes, I am riding the segway down mountain. And yes, the start of my great decline has begun. I know, however, that there are lots of people jogging beside me and helping me steer around the bumps and slow me down. I’m going to change the nature of my fight. It definitely doesn’t mean I’ll stop, because I can assure you that I’ll continue to fight to the very end. But I think I need to change my expectations. I’m not Lyndsey living a normal life with terminal cancer anymore. I am simply Lyndsey who is sick, and I need to accept this as my new normal. I will never again be a fully functioning mother, wife or person. I need help to be all three, though if I could have one wish, it would be that I could hold on to being the mother that I was until the very end. As I write this, I cannot breathe for the heartache I feel for my beautiful Nyah Joy. I simply cannot expect that my terribly broken body will continue to achieve the things it has in the past year. I get incredibly mad at it when it doesn’t and fails me in the worse ways. It is too heavy and exhausting and I am so tired. As I look back on the past year, I actually wonder how the heck I managed to do half the things I did, and can’t help but feel grateful for that.
The subject of dying is a heavy one Dear Reader, but one I think we need to talk about more. I mean, we’re all headed there one way or another. If you’ve actually made it to the end of this post, I want to thank you for sharing in this hard with me. At the end of the day, no one will ever know what our journey will look like into death. There is one thing that I am very certain of though. If there is even the slightest way that it’s possible, I will be there, ready and waiting to hold your hand.