What Happened?

I’ve been of mixed minds when it comes to writing this post. Whether it’s information that should be shared, or whether it’s the end to Mum’s battle that people would want to hear. I know Mum though, and I know that she loved this blog and always wanted me to share every bit of information on it, in to order to a) keep friends and family updated, and b) hopefully help someone reading this who is going through something similar. So in the spirit of doing what I know Mum would have wanted me to do, here is what happened.

When you say or think to yourself “but she was doing so well, she seemed to be ok”, you’re not wrong. After a few hiccups along the way, Mum finally started reacting well to her treatments, and was given the big thumbs up on her final blood test a few days before her passing. Her liver function was back to normal, and Mum in herself was feeling ok. Future therapies and scans were all scheduled in and ready to go, with September 7th being the next big milestone where we could finally see how effective the radiation treatments were on her brain tumours. It was something Mum was working towards.

During Mum’s last week, I knew she was having a few bad headaches, but after having 18 radiation treatments in a row, this was all par for the course; a totally normal side effect that was to be expected. During that week, Mum’s steroid dose (remember steroids are used as an anti-inflammatory) was decreased, which Mum seemed happy about as her puffiness was starting to subside. She also had a brain MRI scheduled in for the Friday before she passed, however unfortunately when Mum and Kerri turned up for the scan they had double booked her and sent her away, with another scan rescheduled for a later date.

Throughout the course of Friday evening and Saturday, both myself and my aunts sent Mum multiple messages with no reply, and tried to call numerous times. As this was Mum’s first weekend after radiation treatment and she’d been quite tired throughout the week, no-one thought anything of it and just assumed Mum was resting. Come Sunday morning, my aunts started to become concerned, so Kerri and my uncle Richard decided to head over to Mum’s apartment to check on her and make sure she was OK.

Without going into too much detail, sadly upon arrival my aunt and uncle discovered Mum lying peacefully in bed, having passed away.

The medical report sited Mum’s passing occurred in the early hours of Saturday the 10th of June, as a result of multiple massive brain haemorrhages. Due to the surprising and unexpected nature of Mum’s passing, all of her treating specialists requested an autopsy be carried out, and knowing Mum would have wanted one so that it could hopefully prevent what happened to her happening to someone else, we granted permission for one to go ahead. We are currently still waiting on the results.

It is without a doubt that Mum passed a lot earlier than she should have. She wasn’t given the opportunity to fight, or attempt to kick her cancer’s ass. Sadly, Melanoma is not responsible for Mum’s passing, her treatment is, and we can only hope that going forward more thought is put into how many consecutive radiation doses are given, and whether more regular scans are required to monitor potential brain swelling and bleeding. It is a cruel and unfair ending that unfortunately will take my family a while to come to terms with.

On a positive note, Mum’s funeral was everything we wanted it to be, and I truly do think she would have been very happy with it. It continues to blow my mind how many lives Mum touched, and the turnout for the day, as well as the endless stream of condolences and messages received, only further prove this.

Thank you to everyone for your support and well wishes during this time – my family and I couldn’t be more grateful. I hope in some small way, this has given a few of you some closure, as I know many of you were just as confused as we were that she left us so soon.

Thank you so much for taking the time to read this blog throughout the course of Mum’s short journey with stage 4 Melanoma – doing something that I know Mum loved has been a pleasure.

Alex

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A Short, But Not So Sweet Update

Just a quick update today. Unfortunately the past few days haven’t been the best for Mum – her liver function wasn’t improving as quickly as the doctors thought it would with the IV antibiotics and steroids she was on, so as a result she has been kept in hospital for monitoring and commenced on different antibiotics. Yesterday Mum unfortunately spiked a temperature again with full body aches and pains, so was sent for a CT and ultrasound, with her daily radiation dose cancelled – we’re currently still awaiting the results from these scans.

Unfortunately the day didn’t progress with much improvement, and overnight Mum had the medical team called by the nurses to review her as a result of a fever, rapid heart rate, and extremely low blood pressure of 60/35. Mum was immediately given IV fluids in an attempt to raise her blood pressure however this had no effect, and Mum, believed to be in a state of septic shock, was transferred to ICU to be commenced on a Noradrenaline infusion (all of this explained below).

Fast-forward to the following morning – I have just spoken to Mum and she’s feeling a lot better and is now maintaining her own blood pressure without any medication support. She’s due to be transferred back out to the ward today which is great news. It’s obvious she’s relatively back to her old self, as whilst I was on the phone to her she buzzed the poor nurse and hurried her up to check her blood sugar levels so she could eat her breakfast (steroid use can alter blood sugar levels, so a daily measurement needs to be taken whilst on them – before food).

I’ll keep you all updated on how Mum progresses over the next couple of days – hopefully she will be discharged from hospital soon and can get back to the comfort of her own home.

Alex

P.S Some incredibly random photos below, which Mum has sent through of her stay in ICU…..

Septic Shock – a serious medical condition that occurs when sepsis, which is organ injury or damage in response to infection, leads to dangerously low blood pressure and abnormalities. It is often categorised by it’s lack of response to rapid IV fluid administration, or “filling” (which in normal circumstances has the ability to raise a person’s blood pressure without the need for further active treatments). 

Noradrenaline – a drug which, when given by infusion, has the ability to increase heart rate and constrict the blood vessels, which in short increases blood pressure. It is very useful for treating medical emergencies such as septic shock that involve a critically low blood pressure. 

A Not So Normal Mother’s Day

I wish I could say that this post was going to be a positive one, filled with good news and breakthroughs, and all the good vibes you’d expect for Mother’s Day; unfortunately, we’re not there just yet.

Mother’s Day for Mum was spent in the 5 East Ward of The Alfred Hospital this year, made special by my aunts and cousins, Luke and Max, who all made sure she felt loved, by spoiling her with cupcakes, chocolates and a lifetime of selfies. Now to the not so fun part – why she was there.

As you all know, Mum is currently in the thick of her 18 radiation doses, 6 down, 12 to go. After the first radiation treatment, Mum started experiencing some severe migraines, which upon investigation was a result of swelling of the brain. She was given some hefty pain killers in the form of Endone and Targin, and also had her dexamethasone steroid dose increased to help reduce any inflammation. Now I don’t know if you’ve ever experienced being on high doses of steroids yourself, or know someone who has, but there is always one glaringly obvious side effect that comes along with it – bloating, a lot, of bloating. You become puffy and squidgy all over and basically look like you’re retaining more than the average 4-6 litres of water they recommend you drink a day; it’s not a good look, and unfortunately Mum has been hit by this side effect hard and fast!

Amongst the radiation therapies, Mum is also continuing on with her IV immunotherapies, which for the body, is a huge amount of chemicals and radiation to have to take on in a small amount of time. This was made evident on Friday, when unfortunately during her IV therapy, Mum’s body finally threw it’s hands in the air, stomped it’s foot on the ground like a petulant 3 year old, and basically tossed all of it’s toys out of the cot in protest – it was not in the mood to play that day. Mum’s temperature soared, she got the shakes, her legs went numb, and the sweats were thrown in too for good measure. The oncologist was called, blood was taken for testing, and finally after 4 hours and a nice dose of Panadol, Mum’s temperature normalised and she was able to continue on to her radiation session.

Fast-forward to a few hours later, at home and resting after a horrible day, Mum receives a phone call from her oncologist regarding her blood test results. Unfortunately her LFTs were through the roof, which for my non nurse readers, means her liver function was abnormal. As a result, Mum was called straight back to hospital to be admitted and to have further tests carried out. So where are we now, 2 day later? Still in hospital, where she will stay until Tuesday which is when her last dose of IV steroids is due. She is also on some IV antibiotics, continued on painkillers, and her new favourite, Temazepam, which is helping her finally get a good night’s sleep. Thankfully her daily blood tests are retuning to normal, and it appears she may have just had a case of hepatitis (inflammation of the liver tissue) which can be a side effect of the immunotherapy. We need to remember however, Mum does have a small tumour in her liver also, so it was comforting to see the hospital jump on it and investigate as quickly as they did.

Mum will continue on with her daily radiation therapies, and hopefully this is just a small bump in the road that, fingers crossed, leads to some eventual good news. Apart from feeling puffy, she’s feeling OK, and is still being her typical strong and resilient self.

Happy Mother’s Day, Mum, Sammy and I love you so much and continue to be in awe of how you’re taking all of this in your stride – you’re amazing. Hopefully next year is a better one! xoxo

Alex