It has taken me a long time to get back on the blog saddle, because the final battle with chemo and the decisions I faced with my family afterwards consumed the last of my energy, emotions and brain power.
So now my brain has rewired and is starting to process what on earth happened! So I’m stepping back in time and finishing off my post about my last trip to chemo land and all of the fabulous souvenirs I now treasure from the trip 😉.
I made it. Only 5 more days of having a toxic drug ravage my body and let it do what it does best – seek cells and destroy them.
It was mid March 2018 when I was admitted for my final round of chemo. It was late at night because the ward was busy and the cubicle I was going in to needed to be deep cleaned, which, from the description I later got from a cleaner on the ward is quite an intense process! It opened my eyes to the world of infection control and the measures taken when our immune system goes offline.
So, I get in to my cubicle, settle in, adjust the hospital bed which seemed to whinge at me with every touch of the button, attempt to ‘fluff up’ the plastic pillows and psyche myself up.
The lovely, familiar nurses bring in the first bag, I was feeling ok about it because I was prescribed half dose Cytarabine for my final round because of how long it took for my blood counts to recover after round 3 and the subtype of AML I had didn’t require the full dose.
So the bag was hooked up to Mr Hickman and I felt it pump through my body as I drifted off to sleep. In the morning, I felt off and started to question if I’d been given the right dosage of chemo. Paul came to visit at the perfect time, I was about to have my second bag of Cytarabine when he asked the nurse what dosage I was about to have. The nurse said I was on the highest dose, the same as round 3.
So, not the best thing to hear! I was then reassured that my precious bodily organs were ok & apologised to at length by the nurses and consultants. Anyway, things were altered & although I still ended up having more chemo than intended I rode through the waves ok.
I was discharged home a few hours after my final bag of chemo to regroup and wait for my final dance with neutropenic sepsis.
I hated this part the most. The abrupt fever came roughly a week later, at night, of course! The call was made to Paul’s Mum to come and swoop Leo up again so I could go to hospital for urgent treatment. I knew I would be away from Leo for at least 10 days, so saying another ‘strong’ goodbye to him while he was hysterically crying was just horrendous.
All of the resources and support in the world couldn’t ease the pain and helplessnes I felt in these moments. I just grasped on to the hope that this would be the LAST time cancer and it’s brutal aftershocks would strip me away from my beautiful boy.
I was admitted back to the familiar ward. Blood tests done, standard chest x-ray completed at 2am, the creepiest time to be wheeled around a hospital, especially when you’re feeling as hot as the sun, nauseous and delirious.
This time around it was a sinus infection on top of sepsis that took hold. The blood clots that I was blowing out of my nose were both disgusting and impressive! The antibiotics, blood transfusions and a whole lot of hope and love saved my life again.
So this brings me to my next life changing moment. I had only been living in England for 2 months before my health went downhill and things spiralled out of my control. Even though Leo, amidst all of the chaos, managed to complete his first ever year of school and develop some strong friendships, Paul and I didn’t and couldn’t settle. Although cancer wasn’t killing me anymore, it still hurt. I knew it was going to hurt for the foreseeable future. We decided to ‘restore factory settings’ and return back to Melbourne, Australia.
This was another decision that wasn’t taken lightly, but our lives had been forever changed & I needed to be home. I find it hard to describe the feelings that I felt during this time, all I know is that everything changed, our plans changed and I had to reboot with my family.
So our new plans didn’t come as a huge surprise to my medical team, their support and realism was faultless.
During my final outpatient appointments in Newcastle, Paul and I were able to catch up with the other warriors undergoing treatment for blood cancer. I mentioned one lady in my earlier posts, who I will never forget. She had just finished her appointment and was visibly in shock and tears, her husband said “it’s come back”. The reality of this shitty disease rared its ugly head.
After my appointment which revealed that I was still in remission and would be safe to fly home soon, I had feelings of survivor guilt, not relief. Another mental hurdle to overcome. Another ‘simple procedure’ was booked in as well. The removal of Mr Hickman. There’s no denying it or sugarcoating it. It was weird and painful and I channeled my ctazy breathing techniques that I used when giving birth to Leo 😳. Dr Alex was in his absolute element completing this procedure and I knew I was in great hands. The stitches were removed 10 days later by TWO nurses, because one couldn’t quite see properly the day of my appointment, always comforting to hear things like that 🙄
It was so amazing to have the line removed, it was ALWAYS on my mind and in the way! I know I’m lucky to have kept the same line in for the 6 months of treatment, because it’s a common source of infection and can be replaced multiple times.
A few days later I received this text from our friend and this was the last contact I had from her.
“hi louise I was going to send a
message to tell you my news its not good. My leukemia has returned and at clinic yesterday was told I have 6 months to live Louise follow your dreams go with paul and leo back to your family and good weather, sorry for this sad news x”
What a beautiful, selfless soul, taken by a horrendous disease, and the reason why I’ll keep raising awareness!
So, we did follow our new dream and returned to Melbourne where we have been since June 2018. My family completely surprised us at the airport and I’m sure I surprised them with my long haul stench and new hairstyle 💇😉
I have left out so many details about the process to move back to Melbourne and the intertwined emotions that took place because this alone would be a novel! I will say that there are so many events and external factors that go on behind the main scene that aren’t often talked about so I’m planning to post about these in the future too.
Until then, I will sign off by saying that I’m happily still in remission (13 months now), and I’m well linked in with a hospital here. Leo has settled in to a new school and we’ve made some fabulous friendships in such a short time. Paul’s career is looking bright and hopefully I’ll be back in the world of OT again soon.
Now I’m truly addicted to life and having energy again! I no longer have trouble getting to sleep at night, because I no longer fear that I won’t wake up. Fear of relapse still grips me like a vice at odd times, so no doubt I’ll post about dealing with these moments.
So now it’s time to enjoy the buzz of life again and prioritise things that really matter, family, friends, adventure, coffee, good food and tunes 😁👌