Personal Stories

Joy’s Story

I am writing to you knowing there is to be a review later this year but wanting to do it before the anniversary of the death of my brother in late April as I don’t want to revisit it again after that for obvious reasons… however I feel compelled to speak on his behalf and the family regarding this devastating time in our lives.

John’s story began on Xmas Eve 2021 (he was 62 at the time) when he woke up and his face had dropped slightly, and he was struggling to speak clearly. He immediately went to the doctor who thought he may have suffered a slight stroke and told him to go to Monash Medical Centre first thing on Boxing morning for an MRI which he did. He was subsequently admitted and within days they discovered he was suffering from Glioblastoma and was operated on 2 days later on New Year’s Eve, exactly one week after the first symptoms appeared.

He was informed after the surgery that they were unable to remove the entire tumour due to the possibility of him losing all his speech or movement. John was absolutely amazing dealing with this extremely confronting news, particularly as it was during COVID and couldn’t have any family to visit, and then of course trying to pass all the information on with great difficulty because of his speech. He didn’t even share with them that there was a possibility he may not survive the surgery as he didn’t want them to worry.

He rang me not long after arriving back in the ward and we even managed to have a laugh as apparently during the time when he was awake and was constantly being asked to repeat the phrase “put the vegetables into the refrigerator” and at some point with frustration he said “just put the fucking vegetables into the refrigerator!” When he apologised later as that was certainly not part of his normal language they reassured him saying it was the highlight of the operation!

John recovered well and was discharged on the 4th January with his sense of humour still intact, saying that his 3 kg weight loss was due to a new diet called the Monash Medical Diet!

On the 12th of January he was given the heartbreaking prognosis of around 12 to 14 months if he completed chemotherapy and radiation, and around 3 months if he chose not to. But the decision was very easy for him as he had a wife only in her early fifties and 2 daughters in their early twenties.

In late January he began the 6 weeks of travelling from his home to The Alfred, where he suffered a severe setback about halfway through when his walking and speech deteriorated rapidly and he was put onto a large dose of cortisone that, with the benefit of hindsight, probably sounded some warning bells to the doctors but unfortunately nothing was communicated to John at the time.

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His final day of treatment was on the 9th March and we celebrated by going out to lunch, and he was very excited about getting back into some sort of a normal routine the next day without hospital visits.

However, this sadly was not to be as that very next day he suffered massive seizures and was rushed to hospital where he remained for the next 10 days as they attempted to stabilise them. At this point again nothing was communicated to him about a change in his prognosis, so he continued to assume it was the same and that he wouldn’t be eligible to apply for VAD until August which was becoming a huge concern for him as he could see how quickly he was deteriorating. When we picked him up he said his driving days were over which was a huge thing in his life as most of his working life was spent in the car. However, he was still upbeat and said even if he couldn’t drive in the new car that was being delivered in August, he could still be a passenger but that sadly also turned out not to be the case.

When John was given his prognosis he asked me, as his older sister and also because we shared an extremely close relationship, if I would consider being an advocate for him through the VAD process as he definitely didn’t want his wife or daughters to have to do it and I agreed without a second thought but at that time neither of us had any idea of how quickly things could change. He had been a big supporter of VAD since its introduction and had already given it a lot of thought, hoping of course that he would never need it. At first, he only wanted the permit for peace of mind as he was very aware of the changes that could occur regarding his personality near the end and was absolutely adamant that his family was never to see him in that state.

After his discharge from the hospital stay regarding the seizures, he continued to have smaller ones and it was only at the 2nd follow up visit that we decided that I would ask the question on John’s behalf as to where he actually was in the disease and only then was he told that unfortunately there was nothing more they could do for him. This was obviously shocking news, but I had a feeling this might be the case and had made an appointment with a member of the VAD team and things were immediately set in motion.

On reflection, if he had been informed about the progression of the disease both at the Alfred and then again during his stay at Monash, he would have applied much earlier and would have avoided the unspeakable situation he found himself in during the last few weeks of his life and that is without doubt one of the hardest and saddest part of this whole situation…..

At the first meeting with the VAD coordinator in early April, even though John was very ill there was no change to his personality and things began to move very quickly with Dr. Cam McLaren offering to do a home visit as it was becoming increasingly difficult to transport John anywhere. He was wonderful and put John’s and my mind at rest immediately with his lovely gentle and kind manner and he reassured us that when it took place he would be with us to the end which was incredibly comforting to hear, particularly for me and I recall breathing a huge sigh of relief that I wouldn’t be alone in preparing the medication as this was sitting very heavily on me and causing considerable anxiety.

This visit was followed by another from another very kind doctor and he said they would make every effort to get the permit as soon as possible. We both sat in the room for about an hour after he left, letting go of a lot of built-up emotion before joining the rest of the family as John took it all in and realised that finally there was light at the end of the tunnel. This was on John’s birthday and just a few days before is when he began to show changes of aggression in his personality which was extremely difficult to watch as he was fully aware of these changes and would call out “I’M SORRY….”

He was deteriorating so quickly that on Easter Monday he was begging to go into palliative which was very unfortunate, as only a few days before he cancelled the appointment with them and refused to see someone from Peninsula Health. As it was over the Easter break it was virtually impossible to speak anyone, but on the Monday Monash said they would take him and he left home that day for the last time and from that moment he completely disconnected emotionally from the entire family which was heartbreaking.

His aggression increased and at one stage security needed to be called. This terrible disease caused John to change from the truly beautiful, kind, caring and gentle man into someone completely unrecognisable, the very reason he had originally chosen to go through the VAD process.

Dr. McLaren’s last visit was on ANZAC Day and he was shocked to see the progression of the disease and thankfully managed to get the permit 2 days later, to take place on Friday the 29th April at midday. Then we experienced more hurdles  as he couldn’t be woken up on the Thursday (due to having morphine overnight) to give permission to the pharmacists but luckily we ended up rousing him just enough to shout “YES” to them as this seemed to be the only way he could get a word out.
His anger at the situation he found himself in was increasing dramatically, certainly not helped by the fact that at that time he had to be moved for it to take place and I have forgotten how many times he shouted “WHY?”…

The night before it was to take place my brother was staying with us, and we were very worried about the fact that he might require morphine again and not be able to give permission. So I sent Cam a message and he told us if that was the case we would not be able to proceed and that he was very close to dying anyway and they would keep him comfortable.

We were shattered by this information and it was at this point that going through all the meetings and appointments with VAD, with everyone knowing absolutely what his wishes were (particularly me) that it all suddenly just seemed so futile…..and to think we might not be able to go ahead because he was unable to say YES yet again was inconceivable!

As if the disease wasn’t bad enough robbing him of literally everything this would have been the final devastating blow. Even the morning he was to be moved I had a call saying he was too sick to move and my reply was “too sick to move to die..?”

John’s life finally came to an end 14 weeks after the initial prognosis when he was able to shout for the last time “YES YES YES” and he was so distressed that a few minutes before that the last words family members heard was “ FUUUCK ” and COME ON”.

Cam was incredible and we can’t thank him enough for the part he played in the entire process from beginning to end in supporting John and us as a family, but the end bore no resemblance whatsoever to what John (and of course the family) so badly wanted and we are all still coming to terms with the dreadful reality and memories of those last few weeks and the day itself.

I apologise for the length of this, but I wanted you all to know the facts and the time frame, so you have a very clear account of the entire situation.

I’m also submitting a letter I wrote that I thought might help future advocates as it was such a lonely position to be in with not one person in the world who completely understood and with whom I could debrief. I have offered to be that person for anyone else who is dealing with a family member with the same disease and all its complexities, which becomes even more lonely when the patient becomes a different person and it’s just you….

Thank you all for reading this and it would heartening to think that some positive changes could take place in the future to help prevent a repeat of John’s case and I absolutely know he’s been sitting on my shoulder as I write this also hoping for the same outcome.

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