Life is full of milestones

Life is full of milestones and just last Saturday (3/10/2015) I celebrated the 30 year anniversary of my high school graduation. The class of 1985 of Townsville State High School was a special one with so many of us still in touch thanks to the wonders of social media.

It was a long and stressful exercise in the organising mainly due to trying to finalise numbers and get funds in the bank as soon as possible. Unfortunately that lasted right up until the final day which made life a little difficult to organise some of the other little goodies that I had hoped to organise for everyone to take home.

The night itself was wonderful with everyone having a great time just catching up and waxing lyrical about old times and what they had been up to since. Remembering crushes from the school days and maybe even crushes that have developed since, a great time was had by all.

The night took even more importance to me personally as the day grew closer and the realisation that I would never see some of these people again due to my medical situation. Being terminally ill is no fun and needless to say it’s only when people can actually see the changes do they actually show real concern.

I had hoped not to use my wheelchair but as the pain started to increase as the night went on I really didn’t have a choice especially as we were getting ready to head down the road to the casino for a few quiet end of night drinks. I was very lucky that my good friend Michael wheeled me down there, especially the uphill bits lol. I also want to thank a great friend down in Brisbane without whose kind act and help I most likely wouldn’t have been in a position to attend the very event I helped organise. Thank you so much C.

The night ended emotionally with me realising that the 2 people I was left with had given me the opportunity to open up about a lot of things I had never really talked about before in as much detail as I did. One I had never really been friends with at school but by the end of the night I felt I had known her my whole life and the other ……..well she was my first real love and I am in the very lucky position all these years later to be very close friends with her. There are some things in this world that nobody no matter how nasty or spiteful can take away.

November 12 sees me undergo a series of lung tests to see whether my pulmonary hypertension is back. If it is I have been told that no matter what I try to do to pull off a medical miracle and somehow become a candidate for a second heart transplant, I will have an automatic no to the possibility of that happening.

It is truly frustrating and heartbreaking to have to explain myself and my medical situation all the time. People jump to conclusions and can’t seem to get their head around the fact that there are worse things to live with and die from than cancer. It seems that the only way that people will take your situation seriously is if you have some form of cancer. Even when people have perfectly treatable types of cancer and if their treatment works they can enter long periods of remission or even what amounts to a cure, they still don’t understand that terminal heart disease is exactly that. There are no stories of being told 25 years ago that you have six months to live with a form of cancer and are now still alive. No siree, terminal heart disease especially on your second heart is exactly that. Terminal.

The other thing that most do not have a clue about is the constant treatments and operations and procedures that someone in my condition has to endure. Cancer patients talk about chemo as if it is the single most awful thing one can endure. It is not. I have spent a lot of time in the chemo therapy unit at the hospital that I have virtually lived at since 2002. This is due to the fact that when you need antiviral treatment and other cytotoxic drug infusions as an outpatient it is the best place to be. IV protocols and general comfort are much better than in other places in the hospital.

One tends to spend a lot of time sitting and talking to other patients swapping war stories over long periods of time. These are the sorts of stories and the lengths of time that medical professionals simply don’t get to be a part of as they have many patients in the course of a day and there isn’t time. The things we talk about are things that only we can understand and appreciate and we even start to have our own lingo that only we really understand. Suffice to say that when I have gone through what I have had to endure over the years and we have swapped the war stories they tend to have a newfound respect for me and people who have been through what I have been through. Especially when they realise almost every treatment involves being opened up or penetrated with something very sharp.

Western society is now conditioned to thinking that there is nothing worse than a form of cancer and once the word is said there is a collective hush and the worst is immediately thought. With terminal heart disease the reaction seems to be the opposite. The first thing people think and say is that medicine is amazing these days and those doctors will be able to fix it. During one of the countless interviews I have granted on the subject down through the years I even had one of my own colleagues at the ABC say to me “but its not like terminal cancer is it. You’re not going to die?”. Needless to say I was absolutely gobsmacked. You see the single most important criteria for needing a heart transplant is that you are going to die and you are indeed terminal! So frustrating.  

I have refrained down through the years of constantly putting posts on social media looking for attention under the guise of “raising awareness”. The truth is there are only a small number of awareness campaigns that have truly made any real difference. Campaigns such as HIV/AIDS, breast cancer awareness and domestic violence have done an amazing job of getting people on board even when the message isn’t entirely factual. In most cases awareness campaigns tend to be more beneficial to those conducting them. These campaigns tend to be far more beneficial in making the organisers feel better, whether it actually helps the people who have the disease or not.

So often people will say they are praying for you or “I will say a special prayer for you” genuinely believing that they are doing something special. The truth is they are not. What would do some good would be to stop looking to the sky and asking their unicorn for help and maybe do something substantial like give us a hand getting the lawn mowed so the landlord doesn’t kick me out of the only bit of stability I have. A roof over my head.

Its amazing how many people I helped when my life was going nicely and theirs was not. Whether it was financial or just being there when they needed me to give advice or actual physically helping them get out of a situation they didn’t want to be in anymore I was always there when needed. Now that they have moved on with their lives and mine has through no fault of my own medically gone to shit, they are nowhere to be seen.

Its fascinating that people that were friends since childhood, you know the ones that say we will be there for each other for life no matter what lol. Yeah you know the ones lol. Well they aren’t there and never have been throughout an ordeal that I wouldn’t wish on my worst enemy. Interesting however that people you may not have had anything to do with in decades or may have only known for a relatively short time in the big scheme of things turned out to be absolute rocks in your life and you can’t imagine even still being alive with out them. I guess that epitomises that very irritating saying “the journey of life”

During 2002/2003 it became very apparent who was there and who wasn’t. It was also obvious that certain people had to be removed from my life. This included family members. The simple bottom line was keep them in my life and have such enormous added stress that I would not have survived or remove them and have a genuine chance of fighting for my own life with me making my own decisions without people trying to but in who knew nothing of what I was really facing. It was the right decision at the right time.

I find myself at the same point again. Its time to remove those who can’t be bothered despite me having helped them down through the years. I choose to live in paradise because it is all I have left and the thought of living in the big city again and being miserable means that being there all the time isn’t an option. But just because I don’t live down there anymore does that mean I just get cut out of people’s lives? Especially at a time of life when I have never needed them more? No to hell with it. The friends that currently keep in touch and check on my welfare be it by phone, in person or on line understand what I have been through because they are there to tell.

To the others who can’t be bothered…….well you’ll have plenty of time to think about how little you cared when I am no longer here.

To those who do make the effort I love you to bits. Even the blokes lol J