Back to the land of the living

Today marks 24 days since my major surgery at Royal North Shore Hospital. On May 2, just one day after my 32 birthday I had a redo-sternotomy and thoracotomy to remove my tumour. Originally the plan was to have a debulking surgery in Canberra but my surgeon at Canberra Hospital sent me to Sydney for a second opinion.

It was either have a debulking surgery and have 1-2 years of life left, or have a radical major surgery that will give me the best long term outlook.

We opted for the radical surgery in Sydney and it turned out better than expected. It was a mammoth 18-hour long surgery with two surgeons, Dr Manu Mather and Dr Michael Harden who did a stellar job along with a number of anesthetists and surgical staff. Originally they were going to remove my entire left lung but they didn’t have to. They removed half my left lung, my left side of my diaphragm (fitted me with a prosthetic one), removed my pericardium (sac around the heart) and replaced it with mesh and kept my vocal chords intact (there was a risk they would have to remove half of them).

What they didn’t anticipate was that the scans didn’t show an additional 35 or so tumours on the lining of my left lung but they were able to remove them all.

All of the tumours are gone but there is still microscopic disease left which means I will need immunotherapy (which is not covered under the PBS but will try and access it under compassionate grounds) and targeted radiotherapy when and if the tumour comes back. I will need extremely close monitoring that means I will need scans every two months’ but this means if the tumour grows back, we have a plan to attack it early on.

Despite the surgery being a roaring success, I had to go back under the knife again due to a leak in my lymphatic system. Two days after my surgery, they made me fast and eat 200m of cream so that in the surgery they could identify where the leak was coming from. Think of your lymphatic system being like a bowl of Maggie noodles – clear, long, squiggly and thin plumbing. It was awful eating that cream, I felt so sick. Also after a few days after the surgery I soiled myself in front of my husband as the cream was the only thing I had in my system and it needed to come out. It was mortifying but the nursing staff cleaned me up and I was OK.

During that surgery they fitted me with a thorasic epidural for pain relief. It was extremely effective but it was so strange having no sensation around my chest area. I still had pain after removing it a few days later but I also now have a strange numbing sensation in parts of my chest where there is nerve damage.

After the procedure I still had a leak so a few days after I had an ultrasound of my groin where they injected me with dye and poppyseed oil to help plug the leak in my lymphatic system and I was on a nil by mouth diet for a little over a week so no food and drink at all! That was torture but it eventually led to the closure of the leak. For now I will be on an ultra low fat diet for a month so no more than 20g fat per day, no dairy, no nuts, no seeds, no soy, no coconut, no avocado – it’s a bit extreme but a low fat diet ensures that the leak will heal itself.

I was a bit nervous before going into surgery for the first time but nothing was as terrifying as being on the breathing tube for a day and half afterwards. I was in and out of consciousness after my surgery but it was terrifying having the breathing tube in and being aware of it. The nursing staff gave me a handheld whiteboard to write on. Because I was lying down and I was on such strong pain meds, I couldn’t communicate on the board so well. I did however write that I was panicking and I wanted the tube out. I also wrote I could not breathe which wasn’t true because I had the tube in! When I think about it, I get a bit teary because it was truly terrifying and I felt paralysed unable to move and not in control of my body.

I had a breathing tube for the second surgery but I only had it in for a few hours. They take it out by making you cough and they yank it out of your throat. It was still as terrifying as before.

I hated being on the opiates in intensive care, I had the worst nightmares, one was that I was being gang raped and smothered with a rug so I woke up fighting with myself and pulling non existent fibres from my mouth.

One night in intensive care I was in so much pain that I said I wanted to die. I cried and the doctors held my hand whilst I waited for the pain relief to kick in. I don’t want to die but the pain was immense and I felt I could not escape it.

The care I received from the surgical team, nurses and doctors in the ICU and Cardiothorasic ward was second to none. I am in awe and forever grateful for the kindness I received and help when I could not help myself.

I went from not being able to get out of bed and shower myself to being able to walk around and shower myself within the space of 10 days.

I was in hospital from April 30 until the evening of May 23 and had my birthday in the hospital cafeteria the night before the surgery (just cake with my husband, daughter, mum, mother in law, my best friend and her partner). It was the hardest time of my life. The pain, the lack of control with the breathing tube, the inability to do simple things myself and then not being able to eat and drink for over a week. It was hard but I did it. I was only able to do it because of the amazing medical care I received.

Dr Manu Mather and Dr Michael Harden saved my life when nobody else could and for that I am eternally grateful.

So where to from now?

I’m in pain but I have been told this will be for three months after the surgery. I will be off work for three months (minimum) so that gives me time to continue my project with Rare Cancers Australia, I can do a couple of uni subjects from home and start body and lung rehabilitation at Canberra Hospital.

I want to say thank you again to everyone who has donated to my fundraiser. We had to stay in private accommodation in Sydney (right near the hospital) as the hospital accommodation wasn’t suitable for 5 weeks for our family so that set us back a little bit over $7k (we had my husband, daughter, my mother and mother in law from Egypt stay so my husband could have enough physical and emotional support whilst he visited me in hospital every day). We used the funds from the fundraiser to pay for that which lifted a huge burden for us.

My incredibly caring workmates are putting on a trivia night in Canberra at the Canberra Club on Thursday 20 June to raise further funds for my recovery and treatment. It’s free and everyone is welcome. Please come as I would love to see you there.

I have no idea what is in store for me, when my cancer will come back and how long I have left, but this surgery ensures that I will have as long as possible. I can’t live my life thinking that I am going to die, all I can do is plan that I will be here to see my daughter grow up and have a family of her own.

When I am better and back at work I want to do as much advocacy as possible to help people with Rare Cancers and show the rest of Australia that we can still be active members of our community and in gainful employment (if our condition permits). I want to help safeguard Medicare so that people like me will continue to be able to access lifesaving treatment that won’t cost them the earth.

Again, I am so thankful to be alive, thankful for every day I get to hug and kiss my husband and daughter and wake up early enough to see the sun rise.

Thank you for reading x

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