How a Mum Prepared for Chemo – Initial Days After Diagnosis

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.

  1. 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.
  2. 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!
  3. 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.
  4. 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!
  5. 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!!!

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Update

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.

Last day of radiation! (All suitably attired in dreadful hospital gown!)

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.

With our extended family at Palm Cove.

I hope you have all been doing well during this crazy year called 2020?

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Cancer Returns

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.

A cuter elephant than the one I’m talking about today! This was 2 weeks before finding out there was something amiss. We had taken the children to the Dubbo Zoo for the triplet’s 8th birthday.

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.

Keytruda Day! So far I’ve always travelled with someone.
After my first traumatic day with many failed cannula attempts, I’ve never been game to do it by myself, even though I use my port now. Alex always comes with me if there’s going to be news from scans. It’s always good to have two people listening and remembering big news. But seriously, this guy is my rock. He’s my favourite to have by my side.

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.

Collection of bruises from cannulas. I HATE cannulas!!!

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.)

In the Philippines with our family, my sister and family for my brother’s 40th birthday

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.

 

 

 

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Emerging from Blogging Hibernation?

I’ve just been googling videos to try and find out what animals look like when they emerge after hibernating. I thought perhaps this might be a good analogy of me writing this blog post? Here I am, popping my head up out of the hole like this arctic ground squirrel, looking all around and surveying the territory. To tell you the truth I thought when one awakes from hibernation you might be a bit bleary eyed and groggy, but that little guy gets straight to work, so perhaps it’s not a good analogy. I might take a little bit longer to find my groove.

I got bored of watching animal videos to find out if  my emerging from a blogging hibernation is a good analogy so let’s just pretend there’s a loose correlation.

The truth is that if I have been in blogging hibernation, I still dream of blogging. I still miss it. I can remember when I did blog more regularly people would ask how I found time to do it. Now I ask myself that same question and wonder how I can incorporate it into my life again. I certainly have not been sleeping while my blog has hibernated, I have been doing life in a very busy and noisy fashion. (My children are not quiet!)

I’ve realised I like an audience, but I’m not writing for an audience. I write for myself and with the hope that perhaps it may be of interest to my children at some point in time, and in the meantime if others get something out of my writing, I’m delighted. But right now, I’m not thinking stats or strategies. I’m doing old school blogging, something resembling an online diary or just a platform to share about something I’d like to share about. I’m not trying to target a niche and things might be clunky and inconsistent.

To whoever is reading and not spam, “Hello”! I’m stumbling out of my blogging void, blinking furiously and hoping that my blog behaves itself and let’s me write, because I have things to say. Thanks for those who might listen through reading. I hope there is more to come!

Blogger emerges from hibernation? My son snapped this image. It took him a very long time to work out how to use a camera, so yes, my smile is rather plastered on. But it kind of seems appropriate for this post. Here I am, not so glamourous, not so polished, just me being a Mum and a woman.

 

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Why 2017 was not a Crap Year

2017 was a big year for me. I had two major surgeries and a 3rd minor surgery. I was diagnosed with cancer and received radiation and chemotherapy. As the year concluded lots of people made comments to me about how I must be glad to kick 2017 goodbye after such a crap year.

I refuse to label last year as a crap year. I’m not going to pretend that it was easy. But… How can I possibly label it as crappy when during that year I saw so many bright moments during the darkness or witnessed and experienced some of the kindest, selfless and skilled actions of our world’s amazing humankind?

Caitlin's Happy Heart
Mummy and Imogen celebrating her 6th birthday.

How could I possibly call 2017 a crap year when I witnessed so much beauty from people, events, resources, moments?

A husband who stays by your side no matter what.
The life changing transformative power of skilled surgeons and their supporting medical teams.
The dedication and care of amazing nurses.
The privilege of exemplary medical facilities and services.
The stupendous power of painkillers.
The excited faces of children each time they are reunited with their Mummy.
Family and friends who visit to cheer you up or just to be present.
A GP who is an amazing support during post-op care.
A church who cheers you on, lifts you up in prayer and helps out in practical ways.
A husband who doesn’t complain with all the extra jobs he needs to do because you can’t do much at all.
People who arrive at your house to scrub your toilet, wash your floors, do your ironing, clean the mould from your bathroom roof, etc. etc. etc.
School teachers who send emails to update you of your child’s progress during your absence and send you a get well card from a class and flowers from the school.
The kindness in the tone of a surgeon who tells you for the first time that there is cancer in your body.
Friends who decipher your gobblededook texts when you are high on meds asking for prayer.
Friends and family who pray.
People who pray for you even though they don’t know you.
Answered prayers.
A GP who will return your call within 2 minutes after hearing you have been diagnosed with cancer and give you all the advice you need.
People who send little gifts to cheer you up.
People who watch out for your kids and make sure they are OK when you can’t do it.
People who deliver a meal or baked goods that keep you and your family sustained.
Parents, Siblings and In-Laws who pause their lives to be there for myself, the kids and hubby.
People who offer grace when you are being unreasonable or short tempered.
A husband who loves you through the good, bad and the ugly.
Children who are resilient and strong.

The Triplet's 6th Birthday
The Triplet’s 6th Birthday

 

2017 proved to me that I am strong. It’s a powerful thing to have your strength proven.

I was strong enough to plan for my temporary absence from family life and set up strategies for my family to carry on in my absence and reduced capacity.
I was strong enough to walk into a hospital and submit my body to painful experiences knowing it would result in greater good.
I was strong enough to lay in ICU and allow myself to be completely cared for knowing that weakness leads to strength.
I was strong enough to be a nice patient.
I was strong enough to sit, stand and start walking (and go to the toilet) only days after a 6 hour operation where two titanium rods were screwed into my spine.
I was strong enough to be genuinely interested in others even when everything was hurting.
I was strong enough to know that laughter is a good medicine.
I was strong enough to know that tears are sometimes necessary for healing.
I was strong enough to have determination to do all I physically could to heal.
I was strong enough to pause and do nothing so I could heal.
I was strong enough to imagine my children without a mother even though I pray it will never happen.
I was strong enough to discuss with my husband what life would be like without me in it.
I was strong enough to accept help.
I was strong enough to gracefully reject offers to help when I knew it wasn’t going to be helpful for my family or I.
I was strong enough to celebrate my children’s birthdays even when I was physically exhausted to the max.
I was strong enough to make super dooper birthday cakes and presentable costumes for school despite being in the midst of tiring chemo and radiation regimes.
I was strong enough to apologise for the times I did things the wrong way.
I was strong enough to laugh.
I was strong enough to never stop loving fiercely.
I was strong enough to never stop believing and find strength in my faith.

Mummy and Trent
Mummy and Trent

There were multitudes of challenges throughout that year. Not only myself, but also for my family to walk through. Cancer and major health issues don’t affect just an individual, especially when you’re a Mum. We muddled through them together. The name on this blog rings true. My heart is happy. (But I am grateful that 2018 hasn’t been as challenging as last year!)

If you are walking alongside a loved one who is having a hard time right now or watching someone from afar. Be assured that there is so much you can do to help. Don’t underestimate the power of  kindness. Be encouraged that sometimes all you need to do is turn up listen, help or do your job well and it will make all the difference in somebody’s life. Go the extra mile to show kindness even when it’s inconvenient.

If you are going through a rough time, be reassured. Suffering can be a gift. It makes you realise all the blessings in your life. It can increase your faith or give you faith. It makes you stronger. It can give you hope in Eternity. It can give you confidence in the existence and reality of God.

We are half way through 2018. What can you do to make the world a better place for those around you? Whether 2018 is a remarkable year or a tough year for you, pause. Appreciate the beauty. It is easily found when you stop and look. All around us, every day, there is always enough joy to create some happiness in your heart.

 

 

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Hi! I’m Still Alive

Hi! I thought I should get on and type a blog and let you know that I’m still alive.

Caitlin and kids
Mothers Day 2018 with my precious children.

Which is something we flippantly say when we haven’t been around for awhile.

But when you have cancer, you don’t just flippantly say this. All of a sudden the fact that you are still alive is news. It makes you realise that we shouldn’t be flippant about how fantastic it is to be alive each day. Life is a gift that we receive each day when we open our eyes and we should put our heart and soul into living, especially when we have the privilege of living it with a healthy body.

I’m happy to report that I am living life with a healthy body. I am a cancer survivor. A cancer survivor! Woo Hoo! What a sweet label that is.

Since I discovered cancer last year, I have undergone treatment after having a thymic carcinoma tumour surgically removed. I then had radiation and chemotherapy as an insurance in case any microscopic cancer cells had lingered in my body. Since completing my radiation and chemo regime at the end of October last year, I’ve had 3 CT scans that have shown zero cancer in my body. I’m officially in remission and by the grace of God I am remaining this way.

I thank God for the medical and scientific brains that have discovered and refined radiation and chemotherapy and the healing powers it has brought so many lives. Even if the treatment itself can be brutal. I am grateful that for much of my treatment I had low side effects. Thank you to everyone who has been praying for my family and I. I have valued every prayer that I knew was prayed and those I didn’t even realise that were being sent up to Heaven on my behalf. To be prayed for by those who love you, even if they have never met you, is like a big warm comforting hug.

When I started the second treatment with the higher dose of chemo, I was told that I would need help for the duration of the treatment and beyond as I would be far too sick to function. I am so grateful this was not the case. We had lined someone up to help us in the home and with the children, an even though she did work a few times at first, which did help, even if things weren’t quite the way I had asked. Before long though the little millennial we enlisted soon signed out without a word and stopped answering phone calls. So, we were on our own for the most part. We were very grateful for every meal that was delivered,it was particularly a relief to have meals on chemo days and a couple of days afterwards when I was particularly tired. Our volunteer ironing lady who had helped out so much when the triplets were young quietly reappeared in our lives. We have family that stepped in and help out to fill in the gaps which made all the difference on those days when Alex and I couldn’t quite do everything. They also helped proved the emotional stability that our kids needed.

I was tired, I had an aching body quite often, ran temperatures, but thankfully never so high that it put me in hospital, and became quite a grumpy Mummy and wife quite regularly. I really wish I wasn’t so snappy, it was the hardest part of being sick last year, trying to regulate my unstable emotions, often just due to being so tired, while running a household with five young children. But at the end of the day, I’m so grateful that we made it through. I was able to pick children up from school most days, Alex did many of the drop offs because often I was just too tired to get out of bed, and would just get up to pack five lunch boxes before they scampered out to the car. Homework might have been a bit hit and miss, and we strategically dropped some of the after school activities (but even still, me and my covered bald head was often standing on the sidelines during soccer season last year!) but they arrived at school dressed and fed and able to function, and you realise that sometimes that alone is enough. In fact, it’s a triumph!

I am so grateful beyond measure of my amazing husband. He was such a rock of support throughout it all. It’s so good when you have a husband who can just get in and help out without making a huge issue about it. Alex is truly amazing and kept us all afloat last year.

The last round of chemotherapy really hit me for six. I was felt so sick and so tired that I could barely function. The four weeks after that treatment was the hardest of all, but all the more exhausting as it was November so we were doing all the things necessary for the end of school year. The children were tired from the end of school year and on edge due to all the testing at school. Then it was the blur of end of year activities and before we knew it, holidays had started and then Christmas was upon us. The holidays were tiring, but thankfully I was regaining strength, even enough to host Christmas, which I planned to do the year prior, and was very grateful that we managed to pull it off!

Christmas Dessert
Dessert on Christmas day

I was so relieved when school resumed though. I don’t know if I could have kept going even another week! But maybe that’s because I was hanging out for a particular day. Getting five kids ready for school with all the book covering, pencil naming etc. etc. is always exhausting, but even more so when your body is still recovering from a tumultuous year. In any case I was so grateful to be able to rest for a little bit during the day when I needed to and finally I stopped feeling exhausted all the time.

Early in February Alex and I made a long weekend for ourselves, sent the children out to stay on the farm with the grandparents, aunts, uncles and cousins (one of their favourite places in the world) and we flew to Melbourne for a romantic interlude to celebrate our 20th wedding anniversary that had passed in January. It felt like a reward for surviving last year and I lapped up the luxury of the whole mini-holiday. Maybe because I was feeling so relaxed, and also because the Australian summer was heating up, I decided to ditch the turban and start going out in public with my super short hair.

Alex and Caitlin Melbourne

Since then it has been the usual round of family life. We’ve been doing a lot of catch up appointments of all the things that were missed last year as well as regaining our regular routine and stepping up the children’s responsibilities. (Why is making children do jobs such hard work for ourselves?) I’ve begun working again with a contract job I’ve had with our local university for quite some time, and I’ve updated my teacher’s registration and dipped my toes in the relief teaching waters.

Since I’ve got over the effects of the cancer treatments, I’ve been able to focus on helping my back to recover also after my scoliosis surgery (which is when everything began). I’ve been seeing a wonderful physio and trying to be faithful at doing my exercises to regain back strength. I’ve been trying to increase my exercise in general to help with strengthening my back but it also helps improve your chance of long term cancer survival. My chest still hurts on occasion thanks to the sternoctomy last year, but everything has healed correctly and I’ve been warned I might always have a niggly feeling that will remind me that my breastbone was sliced in half.

Life has been trundling away keeping us all busy, and I never have got back into the pattern of blogging again. I contacted a blogging friend recently and made an off hand comment that I wished I had seen her more often since she had moved to a city closer to where I live. She tentatively asked how my health was as she had been worried this comment might have been linked to a final farewell. It made me realise that I need to apologise to all of you who have prayed and sent well wishes our way and have been wondering how we have been progressing.

I can’t believe it is the middle of the year already. Life really does fly when you are having fun! And what a delight that there has been so much fun in this year. It’s crazy how you can cherish life so much, while still being caught in the whirlwind of busyness and the frustrations of parenthood. I’m just grateful I’m healthy enough to be there for my kids, whether it’s listening to them chatter, giving them kisses and cuddles, making them groan as I wake them in the morning or annoying them with job requests and homework and piano practice reminders/ultimatums. Of course, the cuddles and the chattering is my favourite things to do as a healthy Mummy.

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Soda Pop

It was a bit exciting in our home when Gecko Press sent us “Soda Pop”, a ‘chapter book’ to review! We love reviewing picture books, but my eldest two sons have moved on to independently reading chapter books now. They still like picture books, age doesn’t discriminate when it comes to children’s literature, especially when it’s read aloud. I’ve read a picture book to 50 adults before and had them captivated. As much as the big boys will still listen to many of the picture books and enjoy them, but the longer stories are exciting them more at the moment and Soda Pop certainly did not disappoint.

Soda Pop is a classic Swedish children’s novel and an absurd tale in a world where anything can happen. I immediately liked the thought of my children getting to know a classic tale from a different country, not because they would learn anything about Sweden,especially when this story as the setting is very much imaginary, after all, I am sure that most father’s in Sweden do not wear bright orange clothes and tea cosies on their head unlike Soda Pop. A classic from another country simply gives access to another time honoured favourite that might be slightly different in flavour and delivery.

Jonty read the book enthusiastically. It was one of those books when your child begs you to stay up late to keep reading. I for one am a complete sucker and happily gave a bedtime extensions in the interest of promoting literacy, especially when the novel has your child giggling with glee as he flicks the pages. Watching him get such enjoyment from a book warmed the cockles of my heart. It also made him late for school the next morning, which I perhaps was not so happy about. I must note though, when my children are disobedient because they are reading it’s easier for me to extend them grace compared to other misdemeanours. Advantages of having a mother who is a book worm I guess!

I think one of the reasons this story was so appealing was thanks to the pure absurdity of the storyline and characters. The main characters are Soda Pop, a preposterous father raising his son Mazarin on sweet buns and love. There is also the eccentric Greandfayher Dartanyong who emerged every morning from his woodshed with a new identity. So in such a bizarre context, why wouldn’t a Great-grandfather move into a tree, eat birdseed and think he is a cuckoo? And why would such a motley crew not trap a group of tigers in a barn but not be surprised when the tigers escape and hang out at the bottom of a pool in a car? And when all these antics are accompanied by fanciful illustrations, a child’s imagination is truly ignited.

Soda Pop Illustrations

I asked him what I should say about this book in a review. He replied, “You can tell everyone that this book is CRAZY!” He hastily added, “The good type of crazy, that is!”

I must say Astrid Lindgren, the author of Pippi Longstocking, agreed with Jonty’s claim that the story was crazy. Her review says, “There’s a sublime sort of craziness to it that catches me unaware every time. Neither Soda Pop nor Mazarin nor Dartanying speaks a single word of sense, but they will be my friends for life.”

I would highly recommend this book if your child delights in off beat humour and nonsense where usual rules and prejudices don’t exist. This story has withstood the test of time and is so loved in Sweden that it has be turned into a stop-motion animation series, a cartoon, a play, an opera and a comic book. I think a whole new group of children are going to fall in love with the characters in this first English edition.

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Relishing My Father’s Day Pickle

“I feel sorry for husbands whose wives don’t make them homemade jams and pickles,” my Gran remarked to my cousin and I. “There’s nothing like having a cupboard full of jars that have been made with love that you can eat together. It’s just not the same as the store bought jams and pickles.”

As she walked out of the room my cousin looked at me. I looked at my cousin. As Gran’s footsteps padded down the hallway I whispered, “I’ve never made a pickle or jam before in my life.” My cousin whispered back, “I’m far too busy to make my own pickles and jams.” And then we laughed. Oh how we laughed. But without hesitation, the next day we happily took home multitudes of jars of pickles and jams and our respective husbands ate those little jars of love with us, and God bless them, they never did complain when the lovingly made jars ran out and we returned to eating store bought jams and pickles. (We must have bought them with love.)

Visiting Grandparents
A younger me visiting my grandparents.

This Friday I realised with a panic that I had not bought a Father’s Day present for my Dad. The panic was not because I had no present, I still had time to do that. The panic was because my father is horrendously hard to buy presents for. All of a sudden I had a brain wave! I would make him a chilli chutney! Something with a little kick to put on his sandwiches. I congratulated myself on having a plan, and as I thought about how to execute it, I started thinking about Gran and the conversation we had so many years ago. I then had another brainwave, I should make Dad some of his mother’s pickles! Dad particularly liked getting jars of pickles off Gran every visit. It would have to be a sentimental favourite for a gift. #Winning

on the farm
My Dad with my sister and I last year by the Billabong at his farm.

I went searching through a recipe book I had of Gran’s. No pickle recipe. But there was a tomato relish recipe. That would do. But just in case, I sent a quick note to my Aunty asking if she had Gran’s pickles recipe. I went ahead with the relish plan when I hadn’t heard back from her and I went shopping, with five kids no less. I would declare myself supermum, but it would be untrue. I was a frazzled worn out wreck. Particularly after one child swung from the fruit and veggie scales like a swing, and before I could get there to stop the antics, his identical brother, oh yes, I am not protecting their identities, had started to use it like a bungee cord. I took their hands firmly, brought them back to the trolley and was giving them a good scolding when someone I don’t know very well recognised me. Gulp. Turn on friendly face! I also ran into another friend who I know much better, but the conversation was brief. I just wanted to get home!

I immediately started skinning tomatoes and roasting capsicum and chillis when I got home. I knew I had limited time before we had to go out to a soccer break up. While I’m busying in the kitchen, I received a photo from my Aunty of Gran’s Sweet Mustard Pickles recipe! It was around this time that I also realised that I had miscalculated how many tomatoes were in a pound, (I’m a metric girl, imperial confuses me) so I decided I should use my excess tomatoes to make the pickles as well as the relish and the chutney.

It was at about midnight that I questioned why I was being such an overachiever. I maybe should have paid more attention to the remark on my other grandmother’s recipe book. She gave me a recipe for Plum Jam but then wrote next to it, “It’s easier to buy a jar.”

On into the early hours of the morning I realised why it was sacrilege at Gran’s house to throw out an empty jar as I searched in vain through the recycle bin for an empty jar. When it was time to move Grandad out of their house, we had to smuggle the hoards of empty glass jars into the trailer to go to the tip. He just couldn’t cope with seeing any glass jars thrown out, even though Gran had passed away quite some years prior. When my wheelie bin search proved futile I started examining my fridge and happily found an almost empty bottle of olives that were able to be relocated into a Tupperware container. I also emptied a jar of chocolate coated peanuts, which didn’t really help as the jar was plastic, but at least I have more room to put pickles in the fridge, right?

And here I sit, waiting for my olive jar to sterilise.

PicklesPickles

I can tell you this. Those pickles, chutneys and relish sitting on my counter top right now are made with love. So much love. Somehow I am sure they will taste better than store bought. Every stir of the pot I have been thinking about my Dad’s face when he sees those pickles. I am wondering whether the chutney is going to have enough kick in it to delight Dad and my husband. I have relished making the relish and when I got sick of peeling tomatoes I kept on peeling thinking of how much better it was going to taste because of the effort. But the most delightful part of this whole process has been the memories of Gran while I have cooked. All afternoon, and into the evening, Gran’s voice has been echoing in my head. Long lost conversations have been remembered. As I stand at the saucepan and stir I can picture Gran doing the same in her cluttered kitchen. When my husband walked into my kitchen and remarked that it smells like Gran and Grandad’s house, I only felt pride.

grandparents
Another thing Gran loved doing was baking and cake decorating. She always marked special occassions with a homemade cake.

Happy Fathers Day Dad! On this Father’s Day I’m particularly grateful that your mother fed and raised you to be such an outstanding man and that has made you a beyond excellent father.

(Post script: I’ve had a few difficulties posting this blog, so Father’s Day has been and gone. Alas, Dad came down with the dreaded man flu, so I’m still waiting to give him my gift!)

What gifts did you give on Father’s Day? Have you ever made pickles, relish or chutney? (Or Jam?)

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How I am …. Really.

I have been so grateful of all the support that I have received since I published a post sharing how I had discovered cancer. I know many of you have been praying, sending good vibrations and encouragement to me. I am very grateful and am definitely feeling the love. It’s high time that I post an update on what has been happening. People keep asking how I am and when I answer, they look concerned and ask, “But how are you doing, really?” It’s nice that people are concerned for me, but this is awkward because normally I have shared exactly what is happening and don’t need to elaborate further. So this is how I am … really.

Great!!!

I have had moments where I have felt sick and tired, but especially now that I have finished the first round and have had a break for four weeks, that certainly helps me to feel great, really!  Plus, this week has been very encouraging because I had a CT scan on Monday and my oncologist told me on Tuesday that everything was clear, there has been no spread of cancer. My doctors had not expected there would be, but even though they were just being cautious, it’s always good to hear that things are progressing as we want them to. My back is still healing, and not always comfortable, but the pain meds for this are decreasing and I can certainly feel improvements in that area.

In the last couple of months I have completed six weekly treatments of low dose chemotherapy. Over that same time I received 25 daily (weekday) treatments of radiation. Everything went so much better than I expected. I turned up on day one very prepared. I’d spoken to lots of medical professionals, I had read blogs and I had read some books. I was prepared. Which I’m very happy about because both the chemo and radiation nurses need to go through all the side effects, including worst case scenarios on that first day. I think if I hadn’t have heard it all before I might have been very overwhelmed and maybe slightly panicked and anxious. I decided early on that I was consciously avoiding worrying about what might happen. I thought it was common sense to listen and be aware of what might happen, but I had decided that when that happened I would deal with it. Which has saved me a lot time as I would have worried about nothing, as I had an unbelievably good experience. For starters, despite being told it would, my hair didn’t fall out! That was a delightful surprise! I’m still told it might, but I’m still grateful I didn’t have to shiver through the majority of winter with a bald scalp! I’m not as worried about losing my hair as I am of how it will grow back, whether I’ll lose my curls (which I love) and I’m desperately hoping it doesn’t come back grey because I’ve been proud of the fact that I’m over 40 with only a few silver threads that you have to look hard to find. Plus the whole growing back thing, it’s got to be more frustrating than growing out a bad haircut. But anyway, considering possible alternatives, the hair thing isn’t so bad, so I know that all will be well with my soul whatever the scenario.

St Andrews Cancer Care Toowoomba

Chemotherapy, for me, thus far, hasn’t been gruelling. Occasionally I have felt nauseous, but medication helps that very effectively. I haven’t always had the best nights sleep, mainly waking up in the early hours. Also had some mild medication helping there. In actual fact, because I had little side effects, chemo day was quite relaxing. It’s not often a Mum gets four hours to sit down uninterrupted in the middle of the day. Radiation also wasn’t so bad. It’s daily but most of the time it’s fairly quick. I would arrive, don a very unattractive blue hospital gown, go into the machine, let it do its job, (it doesn’t hurt at all), and then back home with a weekly appointments with the doctor and another one with a nurse. It’s all pretty streamlined.

I had a quick surgery the week before I began treatment to have a port-a-cath inserted so they didn’t need to use my rather useless veins. That has been probably been the most hassle in the end, in terms of pain. For some reason it really hurt, we got it checked out, and nothing was wrong, it was just sore and tender. ( I don’t regret it even still, I hate watching my tiny veins shrink after all the poking and prodding. I don’t think the years of IVF previously helped either.)  Fortunately that has settled down since I’ve had a four week break in between treatments. I also was very tired by the end of the radiation treatment. This was to be expected, radiation has a cumulative effect.

Radiation
The corridor to radiation

I wanted to spend the week after it on the couch, but luckily I was well enough to force myself to choose my days as it was Jonty’s 11th birthday. We kept things low key, but I was very happy that I was able to help him celebrate his birthday with having a fewmates (and his female ‘cousin twin’, they were named this in Kindy as they’ve always been inseparable) around to play handball together and have a bonfire at night.

Jonty is our budding farmer, and requested a farm cake (This is the 4th year I’ve made him a ‘farm cake’) Luckily I came up with a simple idea of combine harvesters at harvest time that looked really effective.

Combine Harvester Cake

That was a Friday, and I can assure you that I took it pretty easy the next day. I mean, I did have 3 extra children in the afternoon, but the beauty of large families is that extra kids are absorbed into the crowd and create a diversion from the norm, which means the kids normally play even better than usual.

My children are still dealing with this well. For the most part, there is one child who has had to work through some emotions, and there has been such good support for all of us to help us work through this. But mostly, they are taking it in their stride and getting on with enjoying life. Probably the best illustration of this was on Tuesday when I shared with the kids that we had received good results after the CT scan. Trent came up a few hours later and said, “Mum, I’m really happy that you have got good news from your test results. But what I think I am even more excited about is that we are having meatballs for dinner.”

I am just so fortunate. I am very grateful for the blessed souls who have cooked meals or baked for our family, helped with cleaning, taken children on play dates and for all those who have prayed, sent messages, scriptures and been so positive. When God says that his Grace is enough, he so often does this by providing people at the right time and place. (IRL and online, in my experience!) I was listening to a podcast by the God Centred Mom (seriously, if you haven’t listened to her podcasts and you are a Mum, even if you aren’t, but definitely if you’re a Mum, do yourself a favour and listen to one. So much wisdom.) Heather was interviewing an 87 year old lady, (Vickie Kraft if you want to look it up) and there was one sweet stand out moment when this faithful elderly lady said, “There is no grace for your imagination”. His grace is enough when we NEED him, not when we are imagining something awful is going to happen. I have found this so true during this season. There is so much I could worry about, but I choose not to, because when I am in the middle of a situation, I have felt such a supernatural peace surrounding me that I know His grace is sufficient for me.
Post script: I hadn’t quite posted this, so I will give you an update on my first day back to chemotherapy yesterday. I have been waiting to see how I would react to the stronger dose. So far, so good! Even though the dose I’m now receiving is almost four times the previous dosage. I even went out last night to Toastmasters (A hobby of mine!) and competed in a speech contest. (I didn’t win, but it was good experience.) I have been feeling a little tired, but coping quite well. Yesterday during chemo I started cutting up a crocodile costume for my daughter (she was very insistent she came as a croc to our school’s Book Week equivalent, Festival of Nations) so I plan to hand stitch today, so that will be a nice easy activity.

Sewing during chemo

I’m told that the effects might increase with the extra treatments, but for now I will celebrate that I have more energy than I thought I would have.

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Discovering Cancer

Cancer. It’s not a word that you want in your life. You hope “cancer” will stay as a peripheral experience: others get cancer, but never you or your closest loved ones.

And then one day there is a doctor sitting in front of you saying that dreaded word.

Recently it happened to me. I now have a cancer story. It’s only beginning. I’m praying for a happy ending.

The last time I blogged was on the dawn of my scoliosis surgery. We knew that this year was going to be a big year for me healthwise. We had no idea how big. There’s been a few curveballs.

So here is the story. I had the back surgery. It hurt. A lot.

I spent four days in intensive care before moving onto the ward. I spent another week in the ward. When I was in ICU they took an x-ray of my chest to check for pneumonia. It’s a routine thing. I didn’t feel like I had anything wrong, so I wasn’t worried. I was just excited to see what my new back looked like! It was impressive. The nurse glanced over at the X-ray, froze, then let out an awed, “Woah. That is awesome!” It always amuses me what turns on medical people. He then send with great reverence, “You are totally Optimus Spine now.” Thanks nurse! I am! I totally own that. I’m proud of my straight spine, it hasn’t been easy to get and the large scar down my back now is a badge of honour.

Scoliosis X ray showing a thymoma present
Post scoliosis x ray that showed existence of a thymoma.

While I was celebrating my straight back that could be seen in the x-ray, I didn’t notice a cloud looming. The cloud was in the X-ray. A cloudy white mass on my lungs. Once I was on the ward, I learned about it from a lung specialist. He came to visit me and told me what they had seen on the X-ray that my untrained eye had not noticed. They thought it was a collapsed lung, which sounded scary but with his explanation I was quickly comforted. It didn’t sound like it would make a big difference in my life, unless I wanted to run a marathon. Which I certainly did not. No drama.

On his way out the door, he paused and said that he and my surgeon are both confident it’s nothing too serious and it wouldn’t be cancer or anything like that. He walked out the door as I froze. Cancer? Huh, what? I hadn’t once thought of that, he’d immediately said collapsed lung and that is what I instantly presumed, not another scenario entering my mind. I quickly became annoyed that he would even mention the word cancer if he didn’t think it was cancer and shrugged it off.

Later that day I was wheeled in my bed down to X-ray and had a CT scan of my chest and also had a full spinal X-ray to confirm my Optimus Spine status.

The next morning I was visited by a cardiothoracic surgeon. He asked me if my ears were burning? Apparently he had just come from a meeting of surgeons and oncologists where I had been discussed at length. I had become, or rather the cloudy mass behind my sternum, had become an enigma. The CT scan showed it wasn’t a collapsed lung but the question was how to diagnose the enigma. This new surgeon informed me that they decided on a biopsy and a PET scan. He told me it was going to be a big day, but the good news is that tomorrow we would have answers.

Later in the day my bed was wheeled down again to the X ray department. I knew how much it had hurt the day before getting onto the table for the CT scan. (Remember I still was recovering from major spinal surgery and had about 200 staples down my spine. No exaggeration.) I asked for something to help me through. A nurse was very obliging and injected me with morphine before I left. Which turned out to be very handy because there was a delay and my bed was in a parking bay, (for real, hospitals have parking bays for beds), for three hours so the morphine gave me a great sleep while I waited. (Morphine completely knocks me out.) After the biopsy, which was quite quick and not as painful as I expected (once again grateful for morphine) I was in the parking bay for another two hours waiting to go to the PET scan. This time I was given a gourmet food magazine, which was good because I like food mags and I was coming a little bit more lucid, although not enough to stay awake for long,   It turned out that the food magazine may not have been the best selection. I hadn’t eaten much lunch and I was starting to get hungry. My taste buds were salivating as I read an article about fancy doughnuts. It took me over an hour to read the article because I kept falling asleep and then waking up and examine the picture once again and then fall asleep dreaming of fancy doughnuts.

When I was finally wheeled in for the PET scan it was evening and as the shadows started to fall in the hallways of the hospital they also started to form in my mind as I was pushed through giant doors marked with radiation symbols. As I said, cancer has only been a peripheral experience of mine. No one I have been really close to has ever had cancer. I hadn’t realised the PET scan was solely checking for cancer, which I should have because the possibility of lymphoma had been mentioned to me. My heart rate began to increase, my hands started shaking. I was put in a dark room alone I closed my eyes and decided that I was not going to focus on the what ifs. So I shut my eyes and thought about my kids. Which made me start crying. So instead I shut my eyes and thought about fancy doughnuts and all the exotic locations I could eat gourmet doughnuts in.

Because the surgeon had said we would have answers the next day, Alex drove down and hung out with me in my room. You never know when doctors are going to appear when you are in hospital. It’s a bit of a lottery. By 6pm we realised that it seemed our number was not going to be called. A nurse rang and talked to the surgeon who appeared to have no recollection telling me that I would receive results today. Alex went home to Toowoomba and I had another doughnut dream.

Pizza
Alex went and got pizza for dinner which was a welcome break from hospital food. Even if it wasn’t a doughnut!

Thankfully at 6am the next morning the surgeon arrived in my room with the results. It was a thymoma and the biopsy showed it was benign. Phew. But it was still dangerous. It meant another major surgery as soon as I had healed sufficiently from the surgery I was currently recovering from. A thymoma is a rare tumour (that explained why it was such an enigma) that was located just behind my sternum. My thymoma was a particularly large one and had potential to continue growing, with potential for rapid erratic growth and was dangerously close to my heart and major arteries. I would need a sternoctomy (sliced down the breastbone and ribs pulled apart) to remove it. I couldn’t help but feel a little fear as he had previously told me that lymphoma would be easier to treat than operating on a lump in this area. However now that the task was at hand the doctor was sounding positive so I decided to be positive too and breath a sigh of relief that it wasn’t cancer.

Fast forward to the days after the chest surgery. The thymoma was removed. I had survived the most pain I’d ever felt in my life when I woke up from that surgery, and after that was under control, was relieved that the ICU experience wasn’t as bad this time as when I had the back surgery. The 2nd morning I was in ICU my surgeon came and sat by my bed. Not a good sign. He started with, “This thing is not at all what any of us has expected.” Also not a good sign.

When the tumour was sent for analysis at a lab, it was discovered that in fact there was only a small portion of the tumour that was benign. The biopsy was just a fluke that saved me from a little less worry for 6 weeks.  Which I am semi-grateful for because my worrying about the chest surgery was quite sufficient. The majority of the tumour was B2 cells that are pre-cancerous. 10% of the tumour were B3 cells, a rare aggressive cancer called thymic carcinoma.

When the tumour had been removed it was a about 10cm in length and diameter and rock hard. It had pressed against and become entangled with a whole heap of arteries and was difficult to remove. Some of the tumour was stuck on the sides of one of my major arteries into the heart. The surgeon made the decision to leave small spots of the tumour there rather than risking a major bleed. The tumour had also started growing into my lungs. He had sliced the tumour away from this and took a bit of my lungs with it, but he had assured me that I would not really notice this. We hope the cancer was only there and is now removed, but now there was a possibility of microscopic cancer cells within my lungs.

Chemotherapy and radiation are needed. Once again I’ve been playing the waiting game before starting another round. My body needed to heal sufficiently before we start the next round because the radiation will slow down or halt the healing process. I’ve now got the all clear and am waiting for my first round of treatment next week.

For the first week I was fine if we talked about the medical side of things. If I thought about my children or Alex, I would be a puddle of tears. It’s not nice to speculate about your children growing up without you.

As I said, I’m praying for a happy ending and we have every reason to believe there will be one. We are so fortunate that it has been caught early. In fact it may be that there is no cancer there at all, that the spots left are benign and the cancer cells haven’t spread. It’s not a risk I’m willing to take. The thymoma was slow growing, we can see it on x-rays dating back to 2014, and I can recall side effects that would suggest it was around as far back as 2012.

I have prayed that I will see my children get married, my grandchildren and even great-grandchildren. And also a gourmet doughnut. I still haven’t encountered one.

Whatever the outcome, I have full trust in God that he cares for me and His will is going to be accomplished in my life.

 

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