2011–2016/Part 5: Ground Hog day or Back to the future
2011: Back to the future
When I left Holden Street Sexual Health Clinic (HSC) in May 2010 I thought that my days in Sexual Health Administration were behind me. I was wrong!
I was enjoying my new challenge as the Manager for the Positive Support Network (PSN), and the organisation was once again more fully engaging local people living with HIV. At the time, some exciting initiatives were occurring with several others being planned, now that ongoing funding had been successfully secured from NSW Health and other sources.
Neil Sumners took over from me at HSC the previous year. I was very surprised when Neil rang out of the blue one day to tell me that he would no longer be working the weekly Thursday night Guy’s Clinic. He wanted to advise me that a new part-time position was being created to specifically provide administration support for the Guy’s Clinic. The person recruited would also be expected to provide annual leave relief for his position with other back-up duties being up for negotiation as they arose. He went on to ask me if I would consider applying?
When the position was advertised, I did not have to think twice about applying. So, a year after leaving, on the 26 May 2011 I began another ten-year tenure with HSC. This fitted well with my twenty-five hours a week with the PSN.
As my new ‘boss’, Neil and I had a great working relationship. Our hours would cross-over late Thursday afternoons and together we shared many laughs as well as highlights of our individual working week. We remain friends today. Sadly, Neil left the clinic after eleven years in April 2021.
2011: HIV Trivia Quiz for schools
One of my newly trained positive speakers, Kerry Taylor and I developed a HIV Trivia Quiz which PSN’s speakers could take to their talks as a fun educational activity to supplement their talks or to be used as a stand alone activity. Dr Kym Collins from HSC assisted with the technical aspects of appropriate HIV/AIDS questions and possible appropriate responses by the speaker.
The quiz was a multi-choice power point presentation which required students to organise themselves into small groups, so that they could brainstorm questions projected onto the screen one at a time. Students would then decide what they thought the correct response was. This quiz was extremely popular with teachers and students, who were always amazed that their answers were not always correct. For the groups that successfully achieved 100%, we were able to offer donated prizes from local businesses.
2011: A generational changing of the guard vs the devil you know
My father, Raymond James Maudlin passed away suddenly in Liverpool Hospital at 81 years of age, on 19 October 2011. On the morning of his death, before I could drive to Sadlier (near Liverpool) to be with my mother, I needed to first attend a job interview in Newcastle with another HIV non-government organisation, Karumah Inc. Despite enjoying my position managing the PSN in Gosford for fifteen months, I thought I could do something more challenging and mistakenly thought Karumah was the answer.
I had taken clients of PSN to events at Karumah in Hamilton on several occasions since commencing at PSN, and I had found that service to be better funded and its client base and organisation very different to that of PSN. My application for the Manager position was successful and in early October gave notice to PSN’s Board and started my initial employment with Karumah on my days off from PSN.
I lasted one day at Karumah! What a disaster! Karumah’s previous manager had already departed the organisation and my hand-over was left to another staff member. This experience was intensely unpleasant. Unfortunately, I had a clash of personality with that person and felt extremely uncomfortable. By the end of the first day, I made the decision not to return.
I rang the PSN Board Chairperson (Robert Byrd) to tell him my decision and to ask if I could revoke my notice and continue with PSN. Rob could not have been happier. I continued with PSN until its closure in December 2015. Karumah eventually got its new Manager and I worked collaboratively with that person sharing many ideas and initiatives while also having a great relationship.
2012: Happy 21st birthday Positive Support Network – Red Event
2012 was the PSN’s ‘Crown Year’ and to celebrate this amazing milestone, I proposed to the Board that we had a party where we could acknowledge and congratulate past and present Board, staff, clients, and volunteers for their contributions to the organisation. Planning for what became known as the ‘Red Event’ commenced in June 2012, a full six months before it occurred on 24 November, at the commencement of AIDS Awareness Week.
In July 2012, Hunter TAFE (Ourimbah Campus) Community Services Section were planning their student community development projects with local community-based organisations being invited to apply to participate. I proposed the Red Event as a suitable project where students could be involved with all aspects of planning and assisting to deliver this important milestone event.
Three students (Lesley, Victoria, and Gabriel) had part-time placements with me at PSN for four months, and together we staged what was a very successful and memorable event at Caroline Bay East Gosford Regional Gallery. The Gallery and adjoining gardens were lit up in red with attendees also wearing something red. One hundred and ten people danced the night away with music provided by DJ’s Neil and Cindy, and awards were presented to people that had contributed to the care, support and wellbeing of people living with HIV on the Central Coast for 21 years.
2013: ‘If it ain’t broke, don’t fix it’
After being under the care of Dr Sara Pett for seven years, Sara returned home to England in mid-2013 to be closer to her ageing mother and continue practising and researching HIV medicine. A month after Sara’s departure, I returned a CD4 count of 528 and I know she would have been very excited for me. The nearest I had come to that count, was 660 in March 1998 (eight years before seeing Sarah). She would have been extremely pleased to know my CD4 counts did eventually reach the mid-700s for a brief period five-years later in 2018.
After Sara’s departure, my care at St. Vincent’s Immunology B and Ambulatory Care (IBAC) Unit was transferred to Professor Anthony Kelleher. From that point on, my HIV monitoring bloods were taken at HSC in Gosford before having face-face appointments with Prof Kelleher. I was responsible for providing Prof Kelleher with my results, as it was found to be the most effective method due to having pathology systems at two local health districts involved. Dr Kym Collins at HSC also became more involved with my HIV care, and together Tony and Kym would manage any HIV issues I had. This might sound like a complicated arrangement, however this worked quite well and effectively I had two HIV specialists. Any medication changes (only one minor change) were left to the discretion of Prof Kelleher.
I have had several discussions with Tony regarding reducing my pill burden over the past few years however, according to him despite my regimen being complex, the risks of any changes are not worth contemplating or in his cautionary words “If it ain’t broke, don’t fix it.” I will write more about this in my final instalment for Talkabout in the December 2022 edition.
2013: HIV-Associated Neurocognitive Disorder (HAND) Maraviroc Study
In early August I consented to participate in this year-long study with the St. Vincent’s Department of Neurology where I was randomised to the control arm of the study, administered by Professor Bruce Brew. This involved frequent neurological testing to determine my suitability to be treated with the HIV antiretroviral drug Maraviroc.
According to Prof Brew’s final report dated 26 August 2013, I did not do very well on this study and as a result it was determined that my HAND status at baseline was Motor Neurone Disease (MND). At six months it was normal and at twelve months borderline MND. I recall having a long discussion with Prof Brew about my fluctuating results during the study.
In the early stages of the study, I reported that my father had died late in 2011, and I was finding it difficult dealing with my mother’s ability to remain living independently while taking on an increased role in her care. I believe that this was exacerbating my cognitive difficulties in the study.
Prof Kelleher followed-up with his own letter to Dr Collins after a clinic visit with him on 28 October, also outlining that neuro-psychological testing during the Maraviroc study suggested that I had some mild neuro-cognitive disorder. He further suggested that my varied viral load results during the year-long study could possibly be attributed to my HIV antiretroviral compliance.
Interestingly, follow-up testing was suggested for 6-12 months’ time to ascertain whether I had any deterioration and if so, once again formally assess my Cerebrospinal Fluid (CSF) for viral replication, and a review of my HIV antiretroviral regime. I experienced two abnormal viral load results over the next seven months post study, and these returned to undetectable levels thereafter. There was no further neurological follow-up testing done (or suggested) and my regime remained unaltered.
I found the results of my neurological testing experience quite bizarre because my whole life I have been acknowledged and praised for always having good memory skills. This is something that I take great pride in. The Garvan Institute research printout on Motor Neurone Disease (MND) that I was given to read in 2013 left me feeling quite shocked.
Nonetheless that was nine years ago, and I guess that if nothing else I am now more aware of this condition and the possible signs to watch out for. My mother passed away in December 2019 at the age of eighty-seven, two weeks after an unforeseen accident in her wheelchair. Despite being a little senile, my mother was as sharp as a tack and was a long way off having any decline in her cognitive functioning. I like to think that I will follow her example in this regard. I guess time will tell as I age, hopefully reaching my late eighties as Mum did.
2014: 20th International AIDS Conference Melbourne
This took place over seven days (19-25 July) at the Melbourne Exhibition and Convention Centre. I attended the conference as a volunteer and fronted daily to be assigned roles to assist delegates and HIV/AIDS organisations as required by the Organising Committee. I travelled to Victoria two days before by train and while enroute, the second Malaysian Airlines disaster for 2014 occurred.
While checking in the day before the conference commenced, I learned about the MH17 flight being shot down over Eastern Ukraine. I was not aware of this tragedy until I arrived at the conference venue, and overheard concerned delegates talking about it. There were rumours circulating that the conference was going to be cancelled as a mark of respect for several prominent people living with or working in HIVAIDS who were travelling on that aircraft. The conference did proceed as planned, however there was an invisible veil over-shadowing the entire proceedings.
2014: P&O four-day cruise to nowhere
Every year the PSN would hold its annual retreat for clients. During my tenure as Manager (2010-2015) I strived to hold the retreats at different venues and tried to steer away from the usual workshop model of events for clients during their time at a retreat. So, on 29 August to 1 September I organised something which was outside the box for nineteen people living with HIV.
The venue was the P&O cruise ship Pacific Pearl, which did a four-day cruise to nowhere, or more specifically Moreton Bay, Queensland. PSN paid (from fundraised monies) half of all attendees’ fares with the balance then paid by attendees’ either in full upfront or in instalments over six months before departure. The retreat was highly anticipated and gave people something to look forward to, and also was a tremendous success and something that was talked about for a long time afterwards. So much so, that a year later Karumah Inc. in Newcastle held a similar ‘ship-related annual retreat’ for their clients. Yes, we did hold a couple of get-togethers onboard the ‘Pearl’ including a formal dinner and short informal workshop activity which ironically had to be concluded early due to very rough weather.
2015: Winding up PSN, the end of a HIV era
After a year of agonising over the future of PSN, which was approaching its 24th anniversary, the Board consulted with members and clients to cease operating by the 31 December 2015. Assorted options for PSN’s future were considered including transferring the organisation’s activities to ACON Hunter. At the time ACON were interested in taking over PSN subject to NSW Health approval. However, the PSB Board felt that this was not a viable option for people living with HIV on the Central Coast and that potential services considered by ACON may not be forthcoming.
On 1 December 2015, World AIDS Day, the PSN had a dedication service at the Gosford Anglican Church for a time capsule that was buried later that morning in the grounds of the church. The event was attended by people living with HIV, Central Coast Local Health District representatives, other local organisations and others that had held a long association with PSN. The time capsule contained PSN memorabilia, photos and letters from myself and several other people and buried with a large oval bronze plaque above it to mark its location. Instructions were inscribed onto the plaque for the time capsule not to be unearthed for 50 years, (1 December 2065). As planned, the organisation formally ceased its operations on 31 December 2015.
2016: Teaching Community Services at TAFE (NSW)
Patricia (Trish) Griffin was my Head Teacher at TAFE, after I was successfully head-hunted by her in April 2015 to join the Community Services Section at Ourimbah and Wyong Campuses as a part time casual teacher. Initially I worked on course development, validation, and planning activities for Certificate 3 and 4 curricula, before I commenced face-face teaching in Semester 1 (February 2016). This gave me a better understanding of what was expected for my future classes and the units of study I was required to research and teach.
The students I taught were mainly from disadvantaged backgrounds and this certainly had its own challenges. I enjoyed interacting with all students and seeing what they could achieve during the time I had with them. Over many years I had numerous positions in my working life where I trained people, and my time as a positive speaker certainly put me in good stead for working with and teaching adult learners.
Unfortunately, my first teaching assignment at Wyong TAFE was prematurely cut short six weeks after commencing, and I did not get to fully teach the units of study that I was required to present. My time with TAFE was temporarily put on hold for four months until Semester 2 (July 2016) due to me experiencing a myocardial infarction (heart attack) on 28 March 2016 (see below).
2016: Easter Monday Myocardial Infarction at the beach
My son Phillip, his wife Emma and their young daughter Charlotte, were living in Manly and came to visit Adam and I for a couple of days over Easter. On the Monday morning before the family’s departure, Emma and I had a protracted discussion about the use of mobile phones and accessing Facebook in the workplace. In the end, we agreed to disagree. After the family had departed, I was feeling somewhat stressed and decided to relax by heading to the beach for a couple of hours. That couple of hours ended up being almost three days.
I drove to the beach as usual and after a couple of hours suddenly felt very unwell. Initially I could not stand up and was sweating profusely while experiencing chest pain. My chest felt like I had an elephant sitting on it, with none of the other common symptoms. It took me ages before I could move to get myself back to the car park, get in the car and drive home. I had forgotten to take my phone with me. Being a public holiday, I thought I might be stuck there for some time until an ambulance came. I was not aware of anybody else helping or offering me the use of their phone.
I figured that I had to pass my home to get to Wyong Hospital, so I managed to successfully drive home. I got inside the house, found Adam, and yelled out to him saying “I’ve either had or I am having a heart attack.” I insisted on having a shower to get the sand out of my hair (not very successfully), before Adam drove me to Emergency which was ten minutes away. I will never forget that short trip. Adam was as usual religiously sticking to the speed limit and due to traffic could not go any faster. I said to him “please speed up a bit, I know it is a public holiday and I will pay the speeding fine. Do not worry about the double demerits.”
The staff at Wyong Hospital Emergency were excellent and I was in good hands. The emergency doctor in-charge was simply brilliant. However, he was totally justified when he berated me for driving myself home from the beach, explaining that I could have blacked out. While being stabilised, he asked me several times what my level of pain was on a scale of one to ten. At one point, he jokingly told me not to give a high number ‘just to get a helicopter ride’ to Royal North Shore Hospital (RNSH). My pain had dropped dramatically and so I responded by telling him that when I was in the Navy, I had flown numerous times in helicopters and loved doing so. Therefore, I didn’t need another helicopter ride. We both laughed!
I have always maintained that even on my death bed I would be asking for a cup of tea. Well, that’s almost what happened. After recovering in Trauma Room One after almost experiencing a near death experience, I was asked by staff if I’d like a cup of tea.
My much-needed cup of tea and sticky date pudding materialised almost immediately. At the time I wasn’t aware of why I had the heart attack until the following day when I saw the cardiologist. So, I was initially thinking it was something to do with high cholesterol and here I was eating sticky date pudding!
A couple of hours later I was transferred to the cardiac ward for an overnight stay before being transferred the following day to Gosford Private Hospital where I underwent a coronary angiogram. During the procedure, Dr Andrew Hill implanted one stent in my Left Anterior Descending (LAD) Coronary Artery. Andrew later explained that a breakaway piece of plaque caused the blockage and subsequent heart attack. The artery blockage was <50% and that he wouldn’t normally insert a stent in those circumstances.
I had a very quick recovery and did all the things required, post hospital discharge including taking things easy while also attending six-week Cardiac Rehabilitation Programme at Wyong Hospital which covered education (heart disease/risk modification), group sessions (psychological recovery) and supervised exercise sessions twice a week. After completing the programme, I was motivated to join my local gym and have been a regular attendee ever since.
After eight weeks of sick leave, I returned to normal duties at HSC and TAFE. Friends and family jokingly said that it was debatable who gave me the heart attack. My students or my daughter-in-law. As I said above, happily it was neither!
Before 2016 concluded I needed to have day surgery for a Left Inguinal hernia repair, which was possibly caused by helping to lift our outdoor spa which needed to be moved for repairs. By year’s end my CD4/VL counts were very pleasing and were 559/Undetectable.
In the next edition I will write about the period 2017–2022, more teaching, nine operations/procedures in 39 months (including three potentially life-threatening conditions), remaining undetectable, retirement, a major change to HIV antiretroviral regimen after almost 6,000 days and finally Thank you. Goodbye and in the famous words of the Looney Tunes Cartoon character, Porky Pig. “That’s all Folks!”
Paul R Maudlin OAM, JP
Published in Talkabout #205 January 2023
