Here I sit. Again. Yes, I’ve been here before. In this room, sitting waiting. I’ve checked in to reception before. It all is so familiar. I’ve had the chat about the bill it will cost before. So I know that is yet to come. Even living in a country with good medical access and having insurance on top of that, staying alive is costly.
That’s what I’m trying to do. Stay alive. For a bit longer. Time. Sometimes you can buy time. How much would you pay for a few more …. ? Well I don’t even know what I am paying for. Days, months, years? What about minutes or hours, would you pay for those?
Of course there is prayer. It’s the free ticket out of here. I don’t think prayer is a lottery. But sometimes it feels like it. Oh, there’s people that will tell you that there are free tickets of healing are available to everybody. Which makes me relieved that my belief is that unanswered prayer is a mystery. Because otherwise, what have I done wrong? Why isn’t my free ticket working?
The God I worship loves infinitely. I have peace in the midst of my turmoil. A peace that divine love will still be present during the best case scenario of healing or the worst case scenario.
Someone told me that they were healed, “God is good!”, they exclaimed. I’m not healed. But God is still good. I believe that.
I haven’t given up hope though. I hope that the true statement is, “I’m not healed YET.”
The nurse is understanding. She can see that I’m a frequent flyer in the medical corridors. A patient used to conversations behind locked doors. Used to parroting my name, address, birthdate. I may be young but I have the demeanour of the long term patient. The innocent caught up in the criminal activity called cancer.
I sit. I wait. It is a surprise when you don’t have to wait. You learn how to become productive during waiting.
Time. I don’t want to waste the minutes. Being a stage IV cancer patient teaches you that life is precious. A realisation that is always there. But when your mortality feels precarious, you are aware all the more. Even still you find yourself wasting minutes. Fighting, scrolling, sighing, loss of concentration. Before I berate myself, I realise wasting time is being human. We all do it. I just want more time to waste. And even more time to live productively.
When Mum has cancer the whole family is affected. The house gets messy. The washing and ironing piles can tower. Waiting times increase when the children need things, whether it’s waiting for pair of pants to be mended or waiting for a new piece of school uniform to be purchased. Trips to the library, or other special places become less frequent. Special Mum and Dad time often slips off the agenda. The fridge can become a little more empty and the meals a little more simple. Events can be forgotten or missed. Mum might not be in the crowd watching as frequently as she once was. Sometimes life feels more sad than normal. Sometimes it can be easy to feel despondent. Tempers can fray. Tears come easily. The family can be living on the edge. Emotionally and physically.
While I was doing chemotherapy most of the above list was being checked most weeks. Sometimes beautiful friends and family would help and make sure things were happening for us. People cooked meals or gave vouchers for us to buy meals. My Mum and a friend helped with ironing. Family and friends looked after children. People came around and helped tidy the house. Practical help when you are dealing with a chronic illness is so appreciated.
Things may not be as bad right now. However it takes time to recover after an intense period of Mum being unwell. It is even more difficult to recover emotionally when there is no certainty of treatment ever stopping. Then there is times (like we’ve experienced recently) when a flare up occurs and Mum is out of action again. This time it was more briefly than last time, but things can quickly become discombobulated and emotions that have only just started to settle brim to the surface very quickly.
Unfortunately a month ago or so I started feeling really achey in every join in my body. It was starting to slow me down and I was finding it difficult to function in the mornings. The most unfortunate thing for my kids was I was allowing myself to be irritable and snappy. The tone in a household can be affected by any one person’s behaviour. But I find when Mum is crabby things deteriorate really quickly. It seems that our family’s default emotion is anger. We have really been struggling with a lot of angry little bodies, (OK, let’s be honest, the big bodies have been angry too!), to be truthful, for quite some time, family life has been really tough, and during the past month or so, even more so.
Fortunately my oncologist recognised my pain as a side effect from the immunotherapy I’m still receiving. Taking doses of Advil frequently and regularly has helped the arthritis get under control again. Now we’re working on getting the family to be calm again too.
I wish it was as easy as swallowing a pill to make us humans less reactive! Sometimes it is simply taking a break and slowing down filling a child’s love tank. After a particularly tumultuous weekend, one little fellow really wasn’t coping so yesterday he stayed home from school and had a “mental health day”.
It was day of going slow, apart from pumping through three loads of washing. (Which really is huge in our 11kg machine!) I was doing a little mending job and he was interested in the needle and thread so I taught him how to straight stitch and sew on buttons. It amazes me sometimes how children can find delight in simple things. He sat there for well over an hour sewing buttons onto a scrap of fabric. He then wanted to learn how to use the sewing machine, so we did that.
He ran around outdoors while I put the washing on, throwing the ball at me. He laughed hard at me as he tried to catch me out by throwing it at me when I wasn’t ready! He noticed the roses so we went down and picked some. We literally stopped and smelled the roses!
We put them in vases and he delighted in putting a little vase in his sister’s room for a surprise. When Dad came in for lunch he delighted being “an only child” for a little while having Mum and Dad to himself. He persuaded Dad to play table tennis with him for a little bit and then asked for my help to clean his room. (The issue that had brought him to a tumbling into a heap on Sunday afternoon.) We didn’t get it all tidied, but I know he felt supported that we can work on solving problems together.
Did it make family life perfect again? No. But things were just that little bit calmer yesterday. Including when the child in question lost his temper once the annoying siblings returned. But this time he was able to calm down much quicker than the day before. Sometimes we just need to give ourselves or our spouse or our children a pressure valve. We need to slow the pace and give them a chance to release steam safely so that it doesn’t burn the others.
Besides when is family life ever completely perfect? If you ever achieve it, it is only for a moment. An hour or two perhaps of bliss before the inevitable bickering starts or pressures of life and humdrum of living interferes.
When Mum has cancer the whole family is effected. Beauty can still be found in the chaos. Roses can be sniffed. Time can be spent together in the simplest of activities. In the forced going slow moments, family members can regain respect and feel cherished. When Mum has cancer families learn to support each other in the mess and support one another during the hardship. When Mum has cancer the family can exhibit a resilience of spirit that goes deeper than the outbursts and the pandemonium. When Mum has cancer love can still be found in the family. Even if you have to scratch a little below a layer of self protection.
PS. Some friends have been encouraging me to vlog. I don’t really know how to do it, but it feels like something nice to do at the moment, so I’m going to give it a go. One of the activities we were doing yesterday was fiddling around filming from my iPhone. We’re starting simple. Apologies to those who know how to do this properly. Feel free to send me advice! It will be full of mistakes but keep tuned to my Caitlin’s Happy Heart Facebook page or Instagram page. If I work out how to edit our day, I’ll post a YouTube link maybe in a few days time! (Plus like and subscribe if you want me to keep going, I’ll be looking for feedback to see if it’s worthwhile!)
At the end of 6 treatments of Etopside and Cisplatin chemotherapy I was feeling battered physically and exhausted emotionally. After the last treatment all the side effects increased and physically it took two weeks before I stopped feeling sick. Meanwhile throughout all these horrible feelings there was a prickling feeling of discomfort and concern about the inevitable scan at the conclusion of the treatment.
Scans are a necessary part of cancer treatment. We need them if the results are good or bad. But waiting for them. That’s when you get scanxiety. I think there is a sliding scale of how anxious you feel leading up to a scan. Generally I am fairly calm on the exterior, concerned on the interior but just trying to consider the possible options and keep on keeping on. However, I can be like a bear that’s poked if there is the slightest provocation.
At the end of this round of treatment I was expecting to see an improvement but I didn’t think the cancer would be completely gone, so in my head I was contemplating many different scenarios of what would happen next. I think this certainly increased the scanxiety I was feeling. The morning that I was going to the scan I was being particularly snappy with the children and then I paused and realised that I was probably more worried than I had realised about the upcoming scan.
Realising this helped me to calm down, however I probably didn’t handle it the right way! I explained to the child I was yelling at that I was worried about the PET scan I was having. He asked why I’d be worried, which I explained in simple terms, however even though I try to be honest but not create fear when I talk to the kids about cancer, this time I unintentionally transferred the scanxiety onto him. For the rest of the morning he proceeded to meltdown about everything! Cancer hits families, not just individuals.
Part of my concerns when it comes to scans is having the cannula put in and then during the CT part of a PET scan I can often experience intense pain as the dye is released into my body via the cannula. This time it wasn’t a smooth run with the cannula, it went straight in, but they had to use a vein I knew is painful and once the needle was in it was sitting near a nerve so it wasn’t comfortable. However it wasn’t painful during the scan, so hooray for small wins!
I’m sure the real information you are wanting to read is what the results were. Much better than I expected! The cancer in the centre of my chest and lungs has predominantly gone! Insert happy dance! There are three areas where the PET scan still show that there is some type of activity occurring. We will need to wait until the next scan to properly assess what is occurring. But for now I am finished with the chemo and feeling so much better for it!
I will continue to receive immunotherapy every three weeks. Hopefully this will deal with any remaining cancer and also be preventative for recurrence.
So for now I’m cautiously optimistic. I think you may need to have your own cancer experience to understand why there is a part of me that can’t fully celebrate. There has just already been too many twists and turns during this journey for me to reach the conclusion that I’ve entered the “live happily ever after” stage.
But right now, I’m enjoying that I’m not feeling so sick. I’m getting stronger and enjoying the extra energy that is allowing me to start catching up on some neglected tasks. My children and family have been so excited about the good report and it’s so comforting to see their spirits lifted.
As for scananxiety. Well, that’s lurking below the surface waiting for the results of the next scan. For now I acknowledge that I don’t know the future and that it could contain both good or bad. I know that either way I will deal with it and keep moving forward. Until then, I will keep loving life and enjoying all the blessings it contains.
It is the day before chemo. I have woken up too early. It’s a common occurrence for me and rather annoying because it means I will likely be tired throughout the day and not functioning at optimum capacity. Which is irritating because I always have a long list of things I want to get done before chemo starts. I always pray that the side effects won’t appear or that they will be minimal. I am definitely handling the chemo quite well, but so far there are still side effects. Tomorrow will be my sixth treatment and I have found a rhythm to the cycle of chemo. As much as I don’t like having side effects, it is somewhat comforting to know that there is a pattern and know what to expect. But at the same time I have a feeling of dread because I know how I’m going to feel like tomorrow. Worse still, I know what I’m going to feel like on the weekend, which always when I feel worst. Of course unless there’s a miracle that is different to previous weeks. I always hang out that this might happen, even though I’m grateful for small miracles that my symptoms are less than they could be.
The weekend was very pleasant full of family celebrations and church family. But it’s over now and it’s the day before chemo and there is a long to do list to conquer.
Todays To Do list:
Getting ready for school.
Lunchboxes made. Instruments and music books packed for music lessons at school. Making sure kids are dressed and beds made and bedrooms tidy before they leave. (We don’t always achieve those last two chores. Perhaps because I’m not naturally tidy I find it really hard to teach my children to be tidy.)
Washing and folding. Because it never ends. Also as the week progresses I will feel far less enthused about keeping up with this never ending task. And given that my appointments are all in the morning, it can be quite challenging to get the washing done before I leave. If the baskets are as empty as possible at the beginning of the week it will mean there will be less to catch up on next week.
At the beginning of the week I’ll have enough energy to cook meals from scratch but as the end of the week progresses I will be relying on as many cheats as I can. Thankfully I have a stockpile of freezer meals at the moment due to the kindness of my brother cooking up some meals for me. (In sous vide bags. He’s loaned me his sous vide this week, so this will be my first venture into this French way of cooking!) I’ve also got some meals from a local restaurant that does home cooked meals thanks to the generosity of a beautiful group of people who pitched in to buy some vouchers for us. The menu plan will help me know when to get the meals out to defrost and what I need to get from the shops to accompany the meals. I also need to take stock on what supplies I need for the kids lunchboxes during the week. I have a few frozen biscuits that someone has kindly baked for me, but I do need to stock up on some savoury supplies to balance out the sweet for the kids.
It’s no secret that tidiness is not my strong suit. I’m always on a mission to rectify the problem. It normally feels like a losing battle. Since the children have gone back to school this year, I’ve been a bit more systematic and I feel like I’m making some progress. So on the agenda is to get one more area decluttered.
Appointments for children.
I need to pull two children out of school for a couple of hours to take them to a paediatrician’s appointment that was booked six months ago. They aren’t happy because it’s during their morning tea break so I will have to swing by Maccas on the way there and see whether a McFlurry will appease them for missing out on playtime!
To stock up on fruit and snacks for lunchboxes and all the missing items that we’ll need for dinners during the week.
Update chore chart.
My kids have a weekly chore chart, but it needs updating because some of the jobs aren’t working on it and some jobs that I’ve had on the chart previously need to make a return.
Pick up kids.
Pick the kids up from school and do our afternoon routine. Washing lunchboxes (their job!), music practices, jobs and most importantly playing! I’d like to do some baking with someone to have a bit more for lunchboxes during the week. Baking is one of my joys in life and I find it’s a great way to bond with the kids when we bake together.
Dinner and Night Routine.
I’m anticipating that by the time the day has ended I’m going to be feeling pretty tired since I woke up so early so I’m hoping that I might get a little bit of relaxing after dinner in front of the TV. I’d like to watch The Amazing Race Australia with the kids, it’s been Alex and my favourite show ever since season one aired in the US. I love it that they could still do it in Australia last year and even though they aren’t racing around the world it’s been great seeing so many iconic Australian locations. After that, hopefully I’ll be able to get to bed and then fall asleep! Just because I’m tired doesn’t always mean that this little night owl sleeps when I go to bed!
Looking in the mirror and seeing hair disappearing or nothing at all.
Thankfully not all chemotherapy these days result in hair loss. However for those of us who are unfortunate to be receiving a treatment with this side effect, hair loss can be heartbreaking. Yesterday I went to put on my eye make up and realised that I no longer have eye lashes. After that first realisation, it’s all I could see when I looked in a mirror the rest of the day! My eyebrows have been thinning over the last week or two. I think I need a refresher on how to use a brow pencil. I tried filling them in this week and one of my kids asked why my eyebrows looked weird! (Nothing like children to keep it real!) There’s barely any hair left on my head and over the rest of my body. This is my second chemotherapy treatment. I also lost my hair back in 2017.
My skin feels super, super smooth everywhere. Hair does add a texture to your skin and when there are no longer follicles that are even growing a new layer of hair, it feels so different. I think my skin feels as smooth as glass, only softer. One of things that amazed me both times that I’ve lost my hair is how much you don’t pay attention of where there is hair on your body until it is gone. For instance, hair on the back of my neck! For some reason I always notice in photos that my neck somehow looks different once I’ve experienced hair loss. There’s also a missing sensory feeling when you are alarmed or nervous with no hair prickling on the back of your neck! It’s odd the different things a person will notice. I don’t know if others have experienced this, but it’s just something that stood out to me!
When I sat down to write this today, (my kids are having a sleepover at their grandmothers so I’m taking advantage of the quiet house!), I discovered that I had started writing a few months ago when my hair began falling out. I’ll include some of those thoughts fresh from the experience:
Three weeks ago I had the first course in my current chemotherapy regime. It took three days, then there is a three week “break” and then this week I will begin another three days.
Last Sunday I was washing my hair and I noticed that I lost more hair than the usual amount that your hair naturally sheds. It wasn’t huge, but because this has happened before, I knew that this was the start and I also knew that within the week most of my hair would be gone. I knew I would probably have a tough week. The first time my hair fell out, I was not expecting to be as emotional as I was. I thought I would be sad, but I didn’t realise that sadness would make everything more intense and that at the drop of a hat my emotions would bubble over. It turns out, that it was still highly emotional having hair fall out a second time!
As a mother, the first time it happened, I found it really hard dealing with the children because I was so emotional I just had no more energy left to deal with all the typical issues that accompany children. Children don’t tiptoe around you with a heightened sense of cautiousness when Mum has cancer. They resume living, and having all the same issues that children have. They still fight, they still lose things, they still don’t want to clean up and they still have character that is developing. Plus, they are more emotional themselves, because it’s unsettling for them also when Mum has cancer. I wasn’t prepared that having my hair fall out would be highly emotional for the children as well. To them, when my hair fell out, the outward appearance changed, I no longer looked like their Mum, even though I still sounded like her and acted like her.
When I found out I was going to do chemo for a second time, it was the first thing the kids asked, “Will your hair fall out again?”. The reply that my hair was going to fall out brought on more tears from the children then hearing a few moments before about the doctor’s prognosis about the growth of the cancer. (Sidenote, being open and honest with our kids while not oversharing has really helped us to process the journey as a family and has helped the children to freely ask any questions they need to which has lead to some excellent examples of resilience from all five of the kids.)
I try to respect that the hair loss is really hard for the children and make it a bit easier for them. One way I do this is by wearing something on my head most of the time even when I’m at home. At the moment it is Summer in Australia and it has been hot! I would much rather be walking around the house without anything on my head, but it’s a small little thing that I felt like I can do. I’ve talked to another Mum and she said that even though her kids hated seeing her bald they just got used to it. I think it’s all up to individuals how we handle it. For me, there’s one child in particular who really can’t handle seeing me bald. Sometimes at the end of the day I might rip of my scarf for a little bit of fresh air, and four of them are getting a bit more used to it, but this one child really can’t handle it at all. He can’t look at me, his eyes stay averted and he gets fidgetty and can’t concentrate on what he’s saying. Last time he used to beg me to put it back on, this time he’s a bit older and more sensitive, but even still, I can see it’s uncomfortable, so it really is a very small thing for me to just keep my head covered.
Most of the time around the house I wear a square cotton bandanna folded in a triangle, it’s the coolest option I’ve found. I really dislike wearing anything that is synthetic on my head, so even though I have some head gear that is lighter and thinner, if it’s not a natural fabric it just doesn’t do it for me. The bandannas actually belong to Toby and Jayden, (it isn’t that easy finding a square scarf that’s not too big and not to small as it turns out!) they were given to them from a Filipino friend, so they have loved loaning them to me .
Realising your eyelashes are missing is nowhere near as hard as those initial days when my the hair on my head fell out. For me it happened over the course of a week. Every time I ran my hands through my hair I would be left with a handful of hair. It didn’t work if I just had self control I stopped touching my hair. That was actually worse because the hair would keep falling out but it would be one big knotted tangled mass and to get it untangled I would end up with a large ball of hair in my hands. So I found the best method was to keep running my hands through my hair and putting hair in the bin. It really is a bit depressing to look into the bin and see it full of long hair. The first time I had my head clippered once I started getting bald patches. This time I didn’t seem to have as many patches of baldness. Even though my hair kept getting thinner and thinner it meant so much to the kids that I still had any hair. They liked it much better when there was bit of hair left out while I was wearing a cap. By the end I was tying up the most pathetic little ponytail ever with toddler hair bands! Once it got to the stage where the pony tail was too small I cut my hair short and a few little bits just poked out here and there. I liked this better than the first time when I clippered everything off. (Sidenote: Both times there has been a small bit of hair that remained. Last time it was just little fuzz, now it’s just a few strands of hair.) This time it was nice having a little bit of a fringe for longer, it made me feel a bit more normal. There was nothing normal when I took my hat off, the tiny bits of hair that I had looks crazy sticking up everywhere!
I generally don’t like wearing a wig. It’s hotter and scratchy. Last time I started getting good at tying scarves, but I was having treatment in the winter and spring when the temperature is cooler. This time I couldn’t be bothered. My favourite headwear (apart from my home bandanas!) are pre-fashioned bamboo turbans. They are so comfortable, stylish easy to throw on and the bamboo is cooler in the hot weather and warmer if it’s colder.
I’ve deliberated whether I add a bald picture to this post. I know before I lost my hair the first time I went googling what cancer patients looked like to know what to expect. I’m really grateful to those ladies for sharing their pictures. I’m glad they felt comfortable to do this. I’m not going to share pictures, so if you are someone who is bald and don’t want people to see you what you look like without hair, that’s OK too. It’s OK to acknowledge what you do or don’t feel comfortable doing and not feel like you need to do something just because others have done it. I am very comfortable with my body and I love my body, but I’m aware of some of its flaws or bits I don’t like and I cover them accordingly. When I get dressed, I dress in a way that I feel most flatters my body and makes me comfortable and I cover the flaws accordingly. I wouldn’t feel comfortable taking a photo in my underwear just to prove to everyone that I have a wobbly tummy and a saggy bottom. In this Instagram world, sometimes there’s a pressure to expose all in order to be raw and honest. I think women need to know their boundaries and not feel the pressure to show more than what they are comfortable with. For me, my words are where I choose to expose feelings with rawness and honesty.
When I look in the mirror, I love me, but I don’t like being bald. There are some women who, even though they prefer to have hair, still look amazing without hair. Then there’s certain shaped faces that really do look better with something on their head. I’ve been around a few women now who have no hair and cancer, while they are all beautiful, some really do look better than others when bald. It’s kind of like the difference between some women looking good in a bikini and others look better in a one piece. I just don’t look good bald. I know if I posted a picture there would be many people rushing to reassure me that I look beautiful. It wouldn’t matter to me, when I look in the mirror, I don’t hate me, but I don’t feel beautiful until I put some headgear on. No wonder why my kids prefer seeing me with something on my head, so do I!
So a last photo to leave you with because it was so fun I can’t leave it out! Yesterday my hubby and I went on one of our most exciting dates ever! We flew in a helicopter over Brisbane to Sirromet Wines where we had lunch together before flying away. At some point during lunch I had a few tears when I was saying how frustrated I am that I can’t work anymore because want to earn some money for a few pieces of furniture we need in the house. It’s nothing urgent, but it’s just frustrating that cancer has for the moment stopped me doing a job I love and the pocket money always felt good that I was helping contribute. Anyway, those tears washed away my eye make-up so my unlashed eyes were on full display for the world to notice! I’m fairly certain that no one really noticed my missing eyelashes! It was so delightful to spend some time together without children and just enjoy one another, plan for the future (like Alex assuring me that we’ll work out the furniture issues, haha!) and acknowledge some of the uncertainties. It was a great way to belatedly celebrate our 23rd wedding anniversary hair loss and all!
I woke up this morning feeling not particularly well. Not terrible. Just not particularly well. The tumour under my breastbone was a bit painful and my body was aching and I was still tired after a night’s rest. I received chemotherapy this week and the weekend afterwards is always when I feel the side effects most.
23 years ago I woke up on this very same date excited, nervous and full of optimism about the days to come.
It was my wedding day 23 years ago!
I hope you’ll excuse the grainy old photos and indulge me a little trip down memory lane.
There’s a lot of anticipation and expectation about wedding days. For good reason. My wedding day was one of the best days of my life. It also has been one of the most important days of my life. A day where Alex and I became our own little family. Which has miraculously become a much larger family thanks to the blessing of the five beautiful children who have become a part of our life. We have spent 23 years together working, playing, doing the routines of life. It has been a wonderful life together.
I’ve just wrote, “I will never regret saying ‘I do’ “. I backspaced. It’s not the truth. Honesty is one of my top attributes, so to be truthful, there has been plenty of times that I have regretted saying “I do”. Marriage can be excruciatingly annoying, painful, frustrating and tedious. There have been moments where I have questioned why I am in this marriage. But I’ve stayed in the marriage. And that commitment to stay, I have never, I will never, regret.
As complicated as marriage, the good far outweighs the bad. It has been my joy and pleasure to be Alex’s wife. We have shared so many adventures together from the ordinary life of jobs and commitments to the exciting times of travel and events to all the beautiful moments shared with family and friends in between.
Marriage is between two people, but it is influenced and influences far more than two people. Once children are on the scene, and we are so grateful that they arrived, the sphere of influence in our marriage became magnified. Suddenly we two people were doing everything with our heart and soul to make five (for us!) more people happy, healthy and help them to find purpose in this life.
Marriage is two people working together to achieve outcomes that are better done together. It’s joining forces with people around you. As I’ve been reflecting on our wedding day 23 years ago I’ve been thinking of all the people who were present and celebrated the day with us. I loved having a large wedding, it was so special to share the start of a new life with a group of people who were cheering us on into a combined future. I am so happy that the friendships we had back in those days still continue. We still have special connections with everyone in our bridal party and so many more people who were a part of our life.
When I was younger I had no idea how the years make friendships so rich. We are so blessed indeed that our families are and always have been a supportive crew around us throughout our marriage. So many excursions, birthdays, meals around the table together. Marriage becomes a community of people around you.
23 years later I’ve woken feeling not particularly well. My ailments and complaints are really quite mild. The issue with my mild complaints is that I know that these aches and pains have a far more sinister origin to your regular mild complaint. Which leads me to reflect on the vow we made 23 years ago to be by one another’s side in sickness and in health. With the optimism of youth, this can somehow feel more of a romantic statement rather than the true grit that is required if it becomes a reality.
I am so blessed to have Alex by my side during these more difficult times. His devotion as a husband has been echoed the words of the scripture my cousin read on our wedding day. His love has been patient. He has been kind. He has been willing to put his own ambitions aside in order to help me and together we have persevered through the hard times. I always feel protected by Alex and I am thankful that our love has plenty of trust and hope in one one another and in our God.
I love you Alex, and always will. As long as we both shall live.
Every time I get back here and write a blog I get all enthusiastic about writing again. Invariably, over the last few years, that enthusiasm wanes as dull everyday chores take the place of writing. Then I get myself into the situation I face today. What shall I write after the haitus? Do I write what I planned to write about next? Or do I update on what has happened since I last wrote? Or do I just write about a new topic altogether?
Today I’ve elected for the latter two in the hope that I can achieve the first question posed above before I have to go through the process again. (Because I really did want to share about a wonderful opportunity our family had before I started treatment.)
The update. I feel like there is nothing too much to say. Maybe it’s because I answer this question so regularly, or maybe because my new routine feels quite dull and a bit blergh. I’ve now completed my third treatment of chemo. My new normal is receiving a Cisplatin/Etoposide + Keytruda infusions every three weeks. It takes three days to receive this cocktail. I seldom say “Cheers” and would never recommend placing an order for this particular cocktail concoction. There is a new wine bar in my town and it looks far more fun! (Especially the cocktail with fairy floss as a garnish. Stuff dreams are made of. I’m not drinking at the moment because I don’t think my kidneys can handle anything else, but if I was…)
The effects from chemo are that I’m stuck in a three week cycle according to the way my body is responding to the drugs. The first five days are the worst. I feel quite nauseous and sick, but thankfully I haven’t vomited. I have a yuck sick taste in my mouth, especially in that first week. I was warned my mouth might taste metallic due to the platinum in the drug, I don’t feel like it tastes metallic, what does metallic taste like after all? Maybe I’d know if it were truly metallic, for now I think it’s just a gross taste in my mouth that makes some food and water less appealing than usual to eat/drink. I also feel quite wiped out and get very little done.
During the second week I feel tired, but I can function better, so long I don’t overdo things too much. The third week I’m feeling much better, so I try to get as much done as possible while trying not to think and dread the next week when I’m going to repeat the cycle and feel low all over again. I’ve been praying for little or no side effects. There have definitely been side effects, but I think it could be far worse, so I’m thankful for that and continue to pray and hope and believe that the treatment will work. I know some people want to know if it’s working when they ask me questions along that line, but you just never know what’s happening until there is a scan so you just hang on tight and stay on the ride. Even after a scan, it only takes a few weeks, and you are back to that feeling of unknown. I’m grateful for my faith that I have peace while I sit in the dark.
Many people, when finding themselves in unsavoury scenarios ask the question, “Why Me?” I think it’s very understandable why people ask that question, they just want to get out of a bad situation.
“Why me?” isn’t a question I’ve asked. Another cancer patient had remarked to me once during a conversation, “And then you go through the whole question of why is this happening to me.” I realised that this hadn’t been a part of my experience. I had no judgement that she raised the question, but for me the question instantly was, “Why not me?” Bad things happen in the world all the time. Wars happen, children die of terminal illness, sickness happens, abuse happens. The world is full of injustice. Why would I be excused from any of this suffering more than the next person? I don’t want this to happen to me. But I don’t want any injustice to happen to anyone. I find asking “Why Me?” is an unanswerable question that offers no solace because it is not a question that can alleviate your suffering in any way.
On a similar vein is the statement, “It’s not fair.” No, it’s not fair that I have cancer. But it’s also not fair that there are refugees in my city who are trying to re-establish their lives after experiencing atrocities in their war torn countries of origin and the indignities of living in refugee camps. It’s not fair that in my city when I go to bed at night there are children who won’t sleep as they cower in corners afraid of their parents. It’s not fair that when I go to my local cemetery there are child sized graves or headstones of people who have died far too early. I could keep going on, but I think you get the picture. It’s not fair. This is our reality, not just in my city, in every city across the world.
This doesn’t mean that all is hopeless. Quite the contrary! For every tragic story there is an opportunity to insert positive experiences. If you aren’t currently facing your own hardships there’s an even greater opportunity that you can insert yourself into another person’s story and be the positive. In fact, sometimes those of us in the middle of hard times get opportunities where we can be the positive part of someone else’s story. The beauty of looking for these opportunities is that when we start giving it makes our own lives feel so much more worthwhile. Sometimes the most cheerful moments that snap us out of feeling anxious or depressed is when we give ourselves the opportunity to do something for others rather than focus on ourselves. What a privilege to be a part of someone else’s story. We become the “but” when they tell their stories. “I was in this dark place, BUT someone came and did this for me.”
Thank you to the people who have helped me during this time. You know who you are. It’s quite overwhelming sometimes and I don’t always have the opportunity to thank people to the extent that I feel thankfulness for their actions. I have had people give me thoughtful gifts, money raised for meal vouchers and even a holiday, cards, a package left on the doorstep, vouchers, gifts, books and most of all so many kind words, encouragement and prayers. My heart feels so grateful for the prayers that are prayed for my family and I. I am so humbled. For all the “Why me” and “It’s not fair” questions that are asked, I find far more comfort in the prayers of those who believe and my faith in my God. Of course I could go into more depth (and hopefully will some day) on the theology and why I still serve a God and believe that he is good despite the evil and suffering in the world. But for now I just wanted you to know that in the middle of the knowledge that there are sad things happening all over the world, I have a peace that there is a God doing miracles everywhere and comforting the broken hearted. It helps my heart stay happy, a deep rooted joy that there is more good than evil in the world, and a sure feeling in my spirit that good will triumph.
I’m sitting here at 2:17am feeling nauseous. I woke up about 45 minutes ago and have temporarily given up sleeping for the moment so I’m sipping some ginger tea and starting to write this.
This is my second consecutive day of chemotherapy. Tomorrow (or rather today!) I have a third day at the hospital, (as an outpatient), to continue my immunotherapy. I’ll be doing this every three weeks for the next 4-6 months if all is going “well”. 3 weeks ago my oncologist told me that that the spots on my lungs had grown, as had the main thymic tumour. It seems that immunotherapy is not enough right now. It is never nice to find out that cancer is getting worse in your body. There have been a lot of tears. A lot of brain activity. Many, many prayers. More than anything else, I need a miracle right now.
So what to write? I thought I would give you a look into a cancer patient’s life on the lead up to receiving chemo. (For a second time, this isn’t my first trip on this merry-go-round.) This is just an insight into how I’m processing it.
If you are a Mum who is unfortunately in the same club as me, I’m sorry. Chin up girlfriend. We are strong, us women. You can do this. Even more importantly, if you are a believer, I find so much comfort that rather than saying, “You got this” to myself, I tell myself that “God has got this.” No matter what I feel inside, I can always maintain my equilibrium through the peace of resting in His arms. I feel I can cry out for healing. I cry out in lament that my family and I are walking this journey and know that he is big enough to carry my sadness on his shoulders. This knowledge gives me a joy and that despite my circumstances I can rejoice in the power of my salvation. The title of this blog remains true. Caitlin’s Heart is ever Happy. Even when it’s Sad. The Joy of the Lord is my strength.
So here’s an overview of my past three weeks.
Travel to Brisbane to receive treatment and receive scan Results.
Thankfully, now that I have reached the cap of paying for my Keytruda, I am able to remain in Toowoomba and only travel 15 minutes to treatment these days. I chose to drive to Brissy with my husband to receive scan results. I just figured I’d prefer to hear anything potentially bad face to face and see the scan with my own eyes rather than having it communicated via Skype, which is now the main way I communicate with my oncologist. Turned out to be a good call.
Travelled home and then another hour to pick up the children from the family farm.
So, I was teary, but I managed to hold myself together throughout the treatment, but burst into tears the moment I sat in the car. Alex and I processed it together on the way home. We still did our scheduled stop at Costco. I wasn’t sure if I wanted to, but we don’t get the opportunity to go to Costco often, and there was a few things that I wanted, so we decided to proceed. I sniffled in a few aisles, but buying an awesome big bag for my Christmas tree, big boxes of snacks for my kids and of course my favourite Costco treat, pop corners, did help to cheer me up somewhat. Look, if retail therapy works, I’ll take it!
Told my parents and children the bad news.
The plan had been for Alex to travel to the farm to pick the children up. I’m often feeling a little tired after treatment, so I was going to take the opportunity to have a bit of a rest. So I think Mum and Dad knew something was up when we both arrived. We told them the oncologists report. It’s not a happy time telling your parents the bad news that their daughter is not responding well enough to a cancer treatment. No matter what age. There were hugs and tears. We all remained stoic though. Alex and I were in agreement, and always have been, that we are honest and up front with the children while not trying to overwhelm them with too much information. This has probably been the hardest conversation to update them about. They are getting older and have had enough time to develop a cancer radar that they are now a bit more aware to read between the lines. They are all pretty devastated that I’m going to lose my hair again. They think I look like their “real mum” with long hair, and I’ve just got it back to my children’s approved length.
Wave Goodbye to Husband as He Drives Away.
OK. So I wouldn’t recommend the farewelling husband bit if you are in a similar situation, but Alex had a bloke’s weekend pre-planned taking our new 4wd and camping on the beach for a mate’s 40th birthday. I told him that I was nervous about him leaving, he had also gone to a pre-arranged blokes weekend back the first time I did chemo and my hair started falling out. I didn’t do well that weekend three years ago on my own. But I knew that he had been really looking forward to this trip and had done so much preparation in the weeks preceding, plus life is potentially going to get busier for him also, so we agreed it would be good for him to have a break. He agreed that I would let him know that if I wasn’t coping he would come home. Just knowing I could push that “panic button” really was enough for me. I didn’t need to call him home. There were some really tough moments where the kids would ask hard questions, and I was really very teary that first couple of days. The kids were trying really hard to be sensitive, but they are just kids, and they can’t maintain anything for extended amounts of time. And to be truthful, when I just had to force myself to get into Mum mode and push my feelings to the back seat, it kind of felt good to just proceed as if everything was normal. It may have included a meltdown or two from a child or I once or twice, but we got through it. Our emotions were all a bit raw. I wasn’t in denial, I was just getting on with the job that I want to remain on the earth to do. The joy of the ordinary. Alex did end up coming home a bit earlier than planned though, and I was really grateful. I was just starting to get to the end of my tether!
Spend a Weekend with the Kids.
So the kids and I really did have a lovely weekend. I had always been disappointed that Alex was going away on a long weekend. Long weekends are always a great opportunity to do things as a family. Luckily, him being a wise husband and married long enough to take the cues, we took advantage of him being self employed he took half a day off and went to the Sunshine Coast and had a “long weekend” a few weeks earlier. Plus we had a mini-break out on my Dad’s western property. So I was set to spend this time with the kids. Alex had told me to do whatever we wanted and splurge while he was away. When a wife hears that from her Accountant husband, she automatically feels blessed! He’d even suggested we go to a theme park on the Gold Coast. My heart kind of sank at that suggestion, because I didn’t think I really felt like that, but my kids are always super keen to go to a theme park, it’s a real treat. However when you contemplate the possibility of not as many days with your children as you want, all of a sudden you have an overwhelming desire to do whatever it takes to make some happy memories together.
Happily, we came up with a plan that suited me so much better and luckily the kids had such a good weekend also. The kids have been begging me for Disney+ and it turned out they chose installing it instead of going to Dreamworld! Cosying up together with junk food and binge watching the Mandalorian was perfect. We did a few outings. We went to the local swimming pool.
We also visited a park because it’s Carnival of Flowers time in Toowoomba where the kids ate cupcakes that they had piped the flowers on themselves. There was no parade this year so some floats were in the local shopping centre. The kids were sighing that I wanted to look at them there. In the end we didn’t find them, but the kids went home happy because we did find Xbox pyjamas.
I’m always grateful that kids favourite foods are easy to make and we did some treats like waffles and pancakes for lunch. We had also scheduled in a game of laser tag with an aunty and cousins and happily Alex arrived home to participate in the game. We finished with an ice cream from Gelatisimo which is a treat because with five kids it’s not the cheapest ice cream option! My favourite memory of that trip was all the chocolate dripping off Toby’s happy face.
I received the news on a Thursday afternoon. All of these activities took us through to the end of Monday. I’ll explain where my focus was during the rest of the three weeks before treatment began in a further blog. Us Mums need to be prepare when it comes to big events, if we can. But for me it was also acknowledging that I can’t do everything and doing as much as I could. If I have any advice to give if you are in the unfortunate position of preparing for chemo, it’s be kind to yourself. Choose what is most important to you and pace yourself. And in the meantime, make as many nice memories as you can!!!
Oh dear. I continue to be neglectful of this blog. My sincere apologies, because I feel like I really did a teaser last time I wrote. I provided an update, left on a cliffhanger, and then never returned to tell you what is happening!
Lets just blame COVID-19. I think everything in 2020 can eventually circle around to that excuse, right?
Seriously though, my last post was just before everything got crazy and blogging fell down the list of priorities, especially with the increased amount of time the children were at home thanks to schooling at home. And as I’ve always said, once you’ve lost your groove, it’s kind of hard to recover.
So to recap. Prior to Easter I had discovered that even though the Keytruda was working on the main thymic carcinoma tumor, I had lesions growing on my lungs. A PET scan soon after I wrote the previous blog revealed these lung cancers were continuing to increase in size, so it wasn’t pseudo growth like I’d hoped. Not good news. Thank goodness we have access to amazing medical procedures in this country. I received a very short treatment of highly concentrated radiation which was very targeted straight into the actual tumors. I needed to travel to Brisbane four times within 2 weeks for this, but the good news is that my oncologist was thrilled with the results as the cancers on the lungs are practically gone. The smaller of the two is completely gone and we are hoping that the next scan will show no activity left for the larger of the two lumps.
So that leaves me continuing immunotherapy every three weeks. That scan also showed some slight shrinkage around the outside of the central tumor, so it was encouraging to see that it is continuing to work. I’m praying that next time the scan shows increased shrinkage. (Hopefully a bit more than just “slight”.) I still receive it every three weeks. The most exciting development here is that in June we have finally reached the financial cap set by the drug company that produces the medication. Once we had reached $60 000 (plus some more in pharmecutical fees) the drug company has a compassionate fee exemption, so now I will never need to pay for Keytruda again. It is a huge relief that our families savings will not continue to plummet, so I’m very thankful for Merck’s compassion. Especially since the treament may last the rest of my life. (Which will hopefully be a very long time!) We feel very blessed that we were able to find the money to receive the treatment, but I hope that in the future in Australia it will be included on the PBS so other families will not have to take such a huge financial hit. Even without having to pay for Keytruda, we will have hospital excesses to pay and I also need to pay for PET scans which aren’t covered for Thymic Carcinoma, yet are vital for tracking my progress. The covered CT scans just don’t show enough information to make informed decisions about treatment. Then there’s all the added medical expenses. (Like radiation which cost a pretty penny.)
Please don’t be worried about us, but I have mentioned numbers just to increase awareness of the huge costs associated with having a rare cancer as opposed to a more common cancer. There are some people out there who can’t access the funds to receive their choice of treatment, and I can only imagine the heart ache for them and their family.
The other good news is that I have been able to move my treatment to my hometown. It does mean Skyping my doctor rather than seeing him face to face, but so far that has been working fine. I think I will still travel to Brisbane to receive scan results. It has made life much easier. As nice as it was driving to Brisbane with friends and family and spending extra time with some people I love, it is so much easier not to inconvenience anyone and not to lose so many hours travelling. This way I can put a load of clothes on the line, pop up to hospital, call into the grocery store on the way home, then come home, do some chores, pick up the kids and spend the afternoon with them. Once I even did a meeting at night, but I’m not in a hurry to repeat that. I am exhausted after treatment and will often go to bed early that day, so I felt like I needed toothpicks to keep my eyes open in the end after going out at night. But altogether the quality of life that I am experiencing is amazing. I can sometimes have mild fatigue, but other than that it’s business as usual! It is so good to feel healthy while undergoing cancer treatment.
The other positive about receiving immunotherapy during 2020 is that I am not immune compromised, so I am not at increased risk of contracting COVID-19 when I am in the community. Of course I have more reasons than most not to want it, because it would halt my treatment during recovery time. However I have been able to continue with life which would have been very complex for a busy Mum if I needed to take shelter within the home for the last several months.
So apart from all those health things, life has been our usual sweet happy mess. Alex wouldn’t describe my mess as sweet or happy, so maybe that’s not a great descriptor. Let’s just say family life is happy and messy, and so is the house. After a period of schooling at home the children are very happy to be back at school with their friends and excited about learning in a classroom again. Some of my children did better at schooling at home than others, but all prefer the classroom context, so we are loving that they are at such an amazing school which creates a learning environment which is such a source of enjoyment for them.
Soccer season has begun again. Alex and I did kind of enjoy the break from the sidelines, but it’s great for the kids to be back running around again. We only have two playing this year. A third is loving gymnastics and the remaining two children need to choose another sport to participate in.
The Accountant is keeping himself busy. Business is doing well at this stage, but he’s always on the lookout for small business clients, so we’re always praying that the right people find him. I’m on the teaching circuit again and enjoying relief teaching work. Of course this has been in very short supply this year, but hopefully I can pick up a few more days before the year concludes.
One of the highlights of the year since I last wrote was travelling to Cairns to belatedly celebrate my father-in-law’s milestone birthday. It was so good being able to travel, and Cairns is always such a beautiful location to escape to.
I hope you have all been doing well during this crazy year called 2020?
Yesterday I poked my head up from the cave I’ve been hibernating from Blogland in and said a few words. Today I’ve been wondering what my next words should be. I keep walking to the computer. Sitting down, then walking away leaving a blank screen. It’s quite unlike me, because normally if I’m having trouble deciding what to write I at least start with something because even if I start writing then delete a chunk, the process of starting gets the words rolling from my fingertips onto the screen.
Postscript: I’ve kept the first paragraph as evidence that I started it immediately after my previous post! I was finding this blog hard to write, so after writing a few paragraphs and walking away, life seemed to get in the way and it took a long time to get back to writing!
As you can see from the blog post’s title, I’m just going to get straight to the point. The recurrence of cancer is the biggest event in my life right now. I didn’t know whether to ease myself into blog writing a few light little blogs. But I’m a straight to the point kind of girl and ignoring elephants in the room is not my style. Even though I know a portion of you would not realise there’s a big cancerous elephant sitting in the room.
Last year I went for a routine CT scan. I expected to be told I was still in remission. When I came into the office, my oncologist asked me how I was feeling. To be honest, I was feeling tired, wiped out and emotional and “just hanging in there” type of tired. But I didn’t tell him that, because I thought it doesn’t have anything to do with why I was in that room with him. After all, I’m a mother, I was teaching three days a week and 4th term is always busy. I also had a sore chest, but I’d had that last time we spoke, I had told him that this soreness in my chest would flare up every now and again. He sent me for a PET scan because of this pain and 6 months earlier we ruled out that there was no cancer, so he said I could put my mind at rest about that pain, it was probably just scar tissue. So after I said I was fine, he looked me in the eye and with a mild tone of surprise said, “Really, are you really doing well?” I should have realised that was the first sign that in fact he knew that below the surface I wasn’t doing well. Instead I just thought, “Gosh, I must be looking as tired as I feel.”
We looked at my CT scan and he indicated that there were two lumps on my lungs and he didn’t know what they were. (Retrospectively I’m fairly sure he had a pretty good idea…) He suggested we get another PET scan. His words were downplaying it, and when I was in the office, I was feeling positive that it was probably nothing. After I left, I realised that the oncologist’s tone was for more somber then his words. Plus he was in a rush to get the scan done. Radiation was surprised when I said that I needed the results in five working days, and then their faces turned grave and professional as they squeezed an appointment into a previously non-existent time slot. I started to get a bit worried.
At the time, I also was sidetracked by another urgent medical issue that revealed itself in the CT that also needed an appointment with a separate specialist which led to needing to organise a minor surgery around getting PET scans at the same time. It turned out to be a very stressful fortnight with dates changing for vavious appointments and surgeries. One particularly dramatic day I got mixed up with PET scan diets and pre-surgery diet (it’s not like I haven’t had enough surgeries, but I think I was just under so much stress) and I had a surgery cancelled and it had to be re-booked the following week. I was doing a short term teaching contract 3 days a week but I was needing to leave work for medical appointments. This upset me because I even though I knew this was out of control and the school was very supportive and understanding, I didn’t like being unreliable. Having to write relief teaching notes which take me a very long time (maybe because I’ve done so many years of relief teaching I have innate desire to include enough detail) added to tiredness and general overwhelm. Eventually I had to give up the teaching contract, which broke my heart. I had long wanted to teach in that school, but I just couldn’t fit medical dramas and fatigue in with family life.
When the results came back, the PET scan unveiled that not only were the lumps on my lung cancerous, but the centre of my chest lit up showing active cancer cells, so we knew that the Thymic Carcinoma had returned as it was in the exact same spot. The cancer was now sprinkled all through my lymph nodes.
When the oncologist said that the cancer we were looking at was inoperable, my heart sunk into the pit of my stomach. I had been hoping that if it were cancerous surgery would remove the problem.
My oncologist outlined his recommendation for treatment. The catch was it was not going to be covered by Medicare, the government organisation that funds free/subsided healthcare in Australia. Well, Medicare funds you except if your cancer is considered too rare, I’ve discovered. Then, as it turns out, you’re on your own. I also have private insurance, but they also refused to pay for my treatment. We are fortunate that we had some money sitting in the bank ready to be used for another purpose. Alex made the instant decision that we would use that money so we proceeded with Plan A. It’s a relief that we have not needed to sell assets to receive treatment.
The treatment that I am receiving has plenty of reasons to be optimistic. I’m undergoing immunotherapy. It has had great results for a number of cancer patients, particularly lung cancer, which is good for me as the cancer is in my lungs. The immunotherapy I access is on the Medicare PBS for multiple cancers, just not for mine, since it’s so rare. Sorry to go on about this, I’m not trying to play the sympathy card, or ask for money, I just want people to be more aware of how hard it can be for the 30% of Australian cancer patients who have rare cancers. If you want to find out more answers, Rare Cancer Australia is a great website.
Every three weeks I travel to Brisbane to receive a drug called pembrolizumab, (more commonly known by its trading name, Keytruda for those of us who are not skilled at pronouncing long medical words.) I receive it intravenously through my port. Well that was after the first treatment. 366 days earlier, all optimistic, I had removed my port. Because I had been in the doctor’s office receiving the bad news on the Thursday and then on the Monday was in Brisbane receiving treatment, there was no time to consider whether I needed the port again. After that first treatment after multiple bruises and far too much leaking blood as needles were unsuccessfully inserted it was obvious I needed to go in for surgery and have the port re-inserted again. However since that has happened treatment days have become a sinch since there’s no need to access my dodgy veins.
Fast forward. I had four treatments and then a scan. For my 4th treatment I had to fly home alone without my family from the Philippines where we had been holidaying together with extended family to celebrate my brother’s 40th birthday. The scan results weren’t as good as I hoped. I had hoped that everything would have been shrinking. Instead, the main thymic tumour had not changed, which wasn’t bad news. Because it was stable I could continue with immunotherapy. (Plan B is a high dose of chemo. Definitely not my preferred option.)
The not so great news was that the lung cancer lesions had grown. The oncologist said there was a possibility that the growth was a rare case of “pseudo growth”. It’s a rare, but well documented, response that some people had to immunotherapy where the cancer gets bigger before it starts shrinking. Nevertheless because I’m relatively young and healthy, he recommended not taking any chances and proceeding straight to radiation. After treatment we had a long talk to a radiation doctor. We asked lots of questions and in the end we were planning on proceeding with radiation, but he took our case to be examined by a team of cancer specialists. The advice from that group was to proceed with treatment, have a scan sooner than usual and if the tumours have shrunk proceed with immunotherapy as planned. If the lung cancer has continued to grow, proceed with radiation. If there is any other activity or the thymic tumour has grown abandon immunotherapy, proceed to high dose of chemo.
My preferred option (apart from complete miraculous healing!) is to see that everything has started shrinking and that I can continue with immunotherapy. Despite the significant cost I have had minimal side effects, so my quality of life while having treatment is amazing. I can still function for my family, I’m doing a little bit of work and I’m out to go out and about without fear of having a compromised immune system and socialise or even worship with my church family. I feel so fortuntate to be reaping the rewards of all the brilliant minds who have facilitated such a user friendly cancer treatment so I’m praying that it will keep working until I’m in remission again.