Blog update 7 June 2016

Blog update 7 June 2016

Wow what a month we have had in sport. The most impactful times are when life mixes with sport to create emotion. On the weekend we had the passing of Muhammad Ali and with it possibly the most influential sportsperson of the 20^th century. My family’s connection with Ali is strong as my cousin Tony fought him on a number of occasions including a win on one of those occasions. The 2 most famous fights were in the final of the national Golden Gloves tournament in 1959 for the light heavyweight title and the semi finals of the 1960 Rome Olympics for the same weight division.

We saw Alexander Rossi win the 100^th running of the Indianapolis 500, Daniel Ricciardo robbed of victory through his own team’s incompetence in the world’s most prestigious motor race, the Monaco Grand Prix, WTCC at the worlds greatest racetrack the Nordschleife at the Nurburgring and Leicester City win the English Premier League in the most unlikely major sporting title win in a century. There were so many other moments it just never seemed to stop.

Monday June 6 was the 5^th anniversary of my mums passing and the pain does not seem to diminish with time. As those close to me know my relationship with my mum was incredibly close and I miss her terribly. She was an incredibly brave and caring woman who saved her children’s lives and her own by leaving my alcoholic father in my early teenage years and raised us in a safe and wonderful environment in my home city of  Townsville, Queensland, Australia.

On the medical front things continue to deteriorate unfortunately with day to day life being mostly time spent trying to sleep and figuring out how to pay the next lot of bills. Breathing is often difficult so oxygen is a 24 hour thing. Unfortunately using the oxygen concentrator means very very expensive electricity bills. I have reached the point where I find myself having to stretch out my use of some medications so I can make ends meet. Unfortunately we live in a society that has become conditioned to thinking that Cancer in its various forms is the worst thing that someone can get and we have this whole societal thing that if you fight hard enough you can beat anything. Unfortunately this is simply not true. If you have Cancer there are so many organisations that are out there to help when you lose everything because of the disease. Unfortunately this is not the case if you are in a position like mine.

The concept of beating a disease comes with the idea that the human body can somehow heal anything if the right treatment can be found and the right attitude is exhibited. Once again this could not be further from the truth. The heart and lungs simply do not have the ability to regenerate tissue and rebuild function once they are damaged. There is no such thing as having chemotherapy or some other regime of drugs that will somehow miraculously allow you to go into some form of remission or be disease free if you somehow “don’t give up”. Medical reality just doesn’t work that way. This is the reason that the treatment of last resort is solid organ transplantation. Unfortunately not everyone in that situation is a candidate for a solid organ transplant.

So often we hear stories of people who get given a short time to live with a form of cancer and then all of a sudden we find out that they have gone into remission or the chemo has worked and they are cancer free. These are great stories and always pleasing to hear. Nobody wants to hear of someones death least of all someone like me who actually knows what it is like to actually die and then be revived after 20 minutes. Death is horrible. Its messy, often very painful and unlike what palliative care people will try to tell you it is never dignified. Death is the human body’s way of saying “I’ve had enough, shutting down now”.

My point? Remember the miracle stories of being cancer free or going into remission? Well they don’t exist when you have truly terminal diseases such as end stage heart and lung failure. If you aren’t a candidate for transplantation you are going to die and it is going to be a horrible way to go.

Think about this the next time you say something stupid and uneducated like “it could be worse, you could have cancer” to someone who has end stage heart failure or their lungs are failing. The truth is it can be and is worse and it is happening to the person you are saying that to. And yes I have had to cop this from people who don’t have a clue. I even had to hear it from a former ABC Radio colleague when I was the subject of an interview.

On the medical front things continue to deteriorate but I will continue to do my best to keep writing and get the things I want to get achieved. Went to hospital today to do a pre admission check for an upcoming colonoscopy. After going through my records and what I am dealing with right now the doctor said to me “with everything you have to deal with getting bowel cancer really is a minor worry”. Given the now extremely high risk of me having anaesthetics it was decided the procedure was too high risk to go ahead with and we cancelled. Unless it is an emergency any sort of general anaesthetic has pretty much been ruled out for any procedure now including an operation I really need to have but will simply have to put up with the pain till I die. Bugger.  

As usual each day is a battle however it really is hard not to get ticked off when people do silly and selfish things like disregard disability parking spots or park across 2 car parks when one will do. Grrrrrrr lol

Till next time, keep fighting the good fight

love D

xoxoxo

Blog Update 21 May 2016

Blog Update 21 May 2016

Another heart transplant clinic done and dusted. Some are uneventful but most recently have been like a U2 tribute show. The hits just keep on coming lol.

Apparently my liver has decided to join my heart, lung and kidney party which is surprising given I never invited it, but we will keep an eye on it. I can't have general anaesthetic unless it’s an emergency due to my lungs and apnoea which is a bugger given I do need an op to fix an abdominal hernia which is a source of constant pain. The specialist reiterated that my heart and lungs are stuffed and there is nothing they can do.

On the up side she finally relented and will put me into Cairns Base Hospital cardiac unit as she can't fly me to Brisbane due to me having to cart oxygen all over the place. This as some of you will already know is an outcome I have been trying to make happen for over 2 years now. It was particularly amusing when she put it to me as a proposal that she had come up with and asked me what I think. Can you imagine the look on my face as I reminded her for the umpteenth time that I had been asking for this for over 2 years? In any case I kept the peace as this was the outcome I was looking for.

I have a number of procedures coming up that I would normally have a general anaesthetic for, so what alternatives we use and what gets cancelled should be interesting.

Will be coming out of retirement in the next few weeks and writing a story on the lack of disability parking in the right places where I live here in Far North Queensland after a young journo got it completely wrong in a local News Limited paper. Unfortunately the journo showed me nothing but contempt by going on holidays without contacting me after I offered to help him and also correct the quite awful article he had written. Those of you that know me personally know how I deal with those that treat me with contempt. This should be fun. The written word is a powerful thing.

I’ll just keep battling as I always have and keep trying to get the things done that I want to get done before the end comes. As long as I can still drive and I have a computer, recording device and a camera I shall continue.

Take care luv yas all, well some of you lol

D

From Australia's ABC:

Middle-aged men missing out on friendship can face physical and mental health risks

ABC Health & Wellbeing 

By Darragh O'Keeffe

PHOTO: Research shows social isolation and loneliness are real issues for middle-aged aged men.

RELATED STORY: Face-to-face contact 'halves depression risk'

MAP: Australia

Imagine waking up one day and realising — aside from your partner or family — you have no-one to talk to.

No close friend to call if you have lost your job, no shoulder to cry on if your parents are gone and no-one to support you if your relationship breaks down.

This is the reality many men face as they head into middle age. Not only are these men lonely, their social isolation has the potential to significantly affect their physical and mental health.

Studies have linked social isolation and loneliness to a whole host of health issues, including high blood pressure, heart disease, stroke and depression.

In fact, research has shown that people who are socially isolated have up to five times more risk of dying from almost all causes.

Men with lower levels of social support are also more vulnerable to psychological distress, according to head of research for beyondblue Dr Stephen Carbone.

People in their networks dismiss it or tell them to toughen up... that's not exactly encouraging.

Dr Elizabeth Celi, psychologist

"Social supports act as a buffer, as a protective mechanism against the development of depression," he said.

"Social connectedness is a major contributor to improved mental health wellbeing."

Dr Carbone said our social networks were vital in helping us navigate life's rough patches, and those without this support find their stress is not reduced by some of the "diffusing, de-escalating things that happen when you interact with others".

Maybe these men can get by — but they'll likely do better in the long run with some friends in their life, Dr Carbone argues.

We're crowdsourcing ideas on how to maintain social connections in middle age. So get in touch and let us know your experience of making and maintaining friendships health@your.abc.net.au

Even if you do not discuss your problems with friends, sometimes just being around other people helps.

"Interacting with others is fun; it's enjoyable, it offers you a bit of an antidote to what else might be happening," Dr Carbone said.

"It's like the old adage, 'humans are social creatures'. We do better together."

A common story

A report published by beyondblue found that 25 per cent of 30 to 65-year-old men had no-one outside their immediate family they felt they could rely on.

It also found that 37 per cent of those surveyed were not satisfied with the quality of their relationships, often feeling they were not emotionally connected or supported.

Friendship tips from the experts:

• Explore hobbies and activities you find engaging, positive and productive, as friendships can flourish through shared interests.
• Think quality not quantity. It may be catching up with just one friend, once a month.
• Online is fine too. Supplement face-to-face catch-ups with digital communication - a text or Facebook message. Small steps over time help develop friendships.
• Make friends with women too, or other couples.
• Avoid friendships that revolve around drinking, drugs or uncalculated risk taking.

"Many men want greater openness with their friends and to be able to talk about personal problems, but admit they don't always have the skills or tools to initiate these conversations, or understand how to respond when a friend opens up to them," the researchers found.

UK men's health charity Movember made similar findings, reporting that the proportion of men aged between 35 and 54 who said they had no friends with whom they could discuss a serious topic (11 per cent) was double that of those aged between 18 and 34 (5 per cent).

Asked how often they had contact with any of their friends, a higher proportion of middle aged men said it was less than monthly when compared to younger men. The odds of never making contact with friends doubled among the men aged 35 to 54, compared to the younger age groups.

Wellbeing 'dips' during middle age

Friendships can be particularly helpful when we head into middle age, when many of us have lower life satisfaction and wellbeing.

The UK's latest annual wellbeing snapshot found those aged 45 to 64 were the least satisfied with their life overall.

Similarly, last year's Australian Unity Wellbeing Index identified a "slight wellbeing dip in middle age" after which satisfaction with life increased into old age.

Men and their sheds

If you or someone you know is looking to connect and make friends with men of a similar age, a Men's Shed could be the way to go.

The Men's Sheds movement was formed and decade ago and since then has taken off across Australia, providing a powerful avenue for men to connect and socialise.

That same opportunity to make friends and share skills is now available via your preferred device atThe Shed Online, a virtual community for men.

Founded by beyondblue, The Movember Foundation and the Australian Men's Shed Association, the Shed Online is a space for men to talk and interact with other men.

It also provides men with information on health and wellbeing.

(Photo: ABC South West/Anthony Pancia)

It has been suggested the demands of managing the home, balancing work and family, as well as caring for ageing parents and children may all contribute to this sense of dissatisfaction.

Given the "buffering" aspect of friendships are so vital at this time, why is it that friendship is such a challenge for some middle-aged men?

Expectations and the narrow cultural norms associated with masculinity were identified as issues by those who contributed to the beyondblue research.

"The expectation that men are silent, resilient, unemotional and self-reliant makes it harder for them to engage with others, and especially with other men, in any but a very superficial way," the report noted.

Yet social expectations and norms do not provide the full explanation.

"There are nuances below that, such as changes in family circumstances, or financial issues, or changes in work, or people moving away from where they grew up, or middle-aged men not keeping up with sport and losing contact with that group of friends," Dr Carbone said.

Another possible factor is that it follows a period of establishing life partnerships and starting families.

"It's in that timeframe, the 30s, that we're partnering up, starting to have kids, becoming very busy with jobs, and I wonder whether it's those contextual things that contribute to that observed dip," he said.

Don't stop making an effort

Many men, for whatever reason, stop making the effort, according to Dr Carbone. But the truth is our social networks need to be nurtured and kept active.

It would be nice to have more time with friends, but everyone's busy ... I've been the instigator of catch-ups before, but it's a hassle.

Steve

Steve, a 34-year-old professional who is single and lives with his mother, admits he does not meet up with his friends as often as he would like.

Making an effort to catch up with them more frequently would be good, but after a day's work he is often tired and prefers to just go home and relax.

The beyondblue research described Steve as being closest to the average level of social connectedness for this group of men.

They have no real emotional, financial, time or health barriers, yet while they see some value in having a rich social life it's not a priority for them.

"It would be nice to have more time with friends, but everyone's busy," Steve said. "I've been the instigator of catch-ups before, but it's a hassle."

Some men lack skills to get help

Dr Elizabeth Celi, a psychologist and men's mental health specialist, said many middle-aged men "missed primary school and high school", when it came to acquiring skills in emotional openness.

Face-to-face contact is key

Catching up with a loved one in person can be more valuable for their health than a text or a call, research shows.

"You're talking about a generation of men who weren't encouraged or raised to express themselves, if anything they were overtly and covertly given the messages you don't share your emotions or open up about your personal issues," Dr Celi said.

"By the time they're in their 20s and have gone through the early developmental phase, the generations change and socially we're in a different place where it's OK for men to do this, and we want men to do this.

"But they haven't had a chance to learn it. And then we expect them to do it in a day."

Dr Celi said society needed to be more receptive to men opening up.

"I speak to a lot of men who, when they do open up, the people in their networks dismiss it or tell them to toughen up ... that's not exactly encouraging those men to build quality friendships," she said.

But she argues it is important not to compare men's friendships with women's.

"Men do quality friendships, which means it will typically be fewer friends in their network. They don't necessarily show them outwardly to the same degree that women do," she said.

24-hour telephone counselling

• Lifeline on 13 11 14
• Kids Helpline on 1800 551 800
• MensLine Australia on 1300 789 978
• Suicide Call Back Service on 1300 659 467
• Beyond Blue on 1300 22 46 36
• Headspace on 1800 650 850

For those of us who chose to grow up on, Earth Wind and Fire, The Jacksons, James Ingram, Jeffrey Osborne, The Commodores, Luther Vandross and Brothers Johnson etc…………….

Prince was our John Lennon

Well done New Yorker

Blog update 21 April 2016

Blog update 21 April 2016

Well time for another update. Unfortunately things are deteriorating. Dealing with fluid build up means breathing becomes more difficult. Blood results haven’t been good for a while and heart likes to let me know its still there in only the special way it can lol. Unfortunately the transplant unit are playing games again and refusing to reply to email questions of a medical nature. Not only is it unprofessional I have to wonder whether it’s bordering on a criminal act. We are told from day one we can rely on certain people and we certainly need to as years go by. Unfortunately they are the first to point out your responsibilities but try to absolve themselves of any responsibility through their actions. The behaviour is disgusting and unprofessional and unfortunately leaves me with no option but to look at legal and public (media) action as soon as I am able. It is so sad that it has come to this but it is what it is.

The pain throughout my body is constant now with only little relief from the opiates. I would like to be more productive with my writing and I am doing my best but it is getting harder. I am worried I will run out of time to do the things I want to do before the end. I will not allow myself to end up in any sort of palliative care as the words “Queensland Health” and “pain relief” do not go together in my vast experience with them.

Chapter 6 of my book seems to be taking forever but it is now nearly there and will be posted shortly.

Take care all

I’ll keep battling

D xo

Blog update 31 March 2016

Blog update 31 March 2016

Hi everyone its update time. On the good side of things my beloved Richmond Tigers beat the Carlton Blues in what has become the traditional opener to the Australian Football League season. These two teams are arch rivals with a rivalry that goes back to the 1800’s for my readers outside of Australia.

On the bad side it now looks like my relationship with the Queensland Heart Transplant Unit is now at a stage that is not repairable. For the umpteenth time I have emailed about an important subject and received no reply. We are told when we have a transplant unit that we can call or email anytime to a certain number and our transplant co-ordinator. This behaviour is completely unacceptable.

Why as a society do we place these people in medicine on a pedestal? This behaviour and the hell that I have had to endure by three doctors and a small number of nurses down through the years is disgraceful. Medicine is no different to any other profession in its prevalence of bad apples. Unfortunately the bad apples in medicine can end up killing people through their incompetence and ego. And how does the patient protect themselves while all this is happening? Well the truth is they can’t.  

Queensland Health always tell you that there are procedures you can go through to make a complaint, well I say to hell with that!

Would you let the bank robber’s friends and family work out the bank robber’s guilt and what punishment they should receive?

Of course you wouldn’t and I won’t either. That is what courts are for. And if they don’t do their job them you hand it over to the media.

My advice to anyone in a position of difficulty with people in Queensland hospitals is to start compiling evidence as it is your only protection. If it comes down to your word versus them you don’t need to be a rocket scientist to know how it will turn out. The audio recording function in most Smartphone’s these days is pretty good and volumes can be increased back on your home computer.

Remember only you can protect yourself in these situations as QH only care about protecting themselves. Time is my enemy now as my health deteriorates but I have already made key people aware of my story and damn it it will be told if for no other reason than to protect others.

Take care of yourselves

Love

D

Blog Update 9 March 2016

Blog Update 9 March 2016

Well another fun week or so has passed and as usual I try to not let a day go by without learning something. Whenever I get my bloods done and I do this every 3 weeks or so I make sure I get a copy. I have learnt to read the results but I still get surprises when things are pointed out to me that I wouldn’t even bother to take notice of.

I had one of my many clinic appointments this week at Cairns Hospital, this time for rheumatology. When you are on the very long list of drugs that I am on the list of side effects is also crazy long. Unfortunately some of the side effects that seriously affect daily life are Gout, Tenosynavitis and Rheumatism. Enormous pain throughout the body and the deterioration of the use of my hands and general mobility that unfortunately cannot get better only worse. It really has got to the stage where I just go in for a chat with him these days because we know there is little he can do and what he can do is restricted by the use of medication for my heart and lungs. His last letter to all the stakeholders in my medical care was hilarious.

While I was in hospital in November 2015 and I had a scheduled appointment with him during that time. It was the day that Jonah Lomu had died and I didn’t know until he told me at the end of the consultation. I had intended to interview Jonah for my book as there are only 2 sportspeople that I knew of that had had solid organ transplants and continued playing at the top level. The other was Alonzo Mourning the American basketball player. He wrote a letter to all the doctors that i see which was basically along the lines of  "I am not touching this guy until you heart and lung clowns get your shit together". It was hilarious and i could just picture him throwing his hands in the air and saying "i have never seen a patient like you Darren". "For gods sake look at your medication list its huge!". Ah you have to laugh otherwise you would go mad.

Well what did I learn today? I learned that I need to start reading my haemoglobin levels. As I have found down through the years it is often a doctor whose job it is not to chase up something who ends up pointing something important out and the transplant unit who have known my levels have been extremely high let me down. The rheumatology specialist described my blood readings as being like sludge! What scared me is that I am already on large amounts of various blood thinners so goodness knows what would have happened by now if I wasn’t. Strokes and heart attacks one would think would be a certainty and given the number of the latter I have had to endure I can do without any more before they inevitably end up happening. They will probably have to start taking a pint out every fortnight. Fun.

What’s disappointing is these levels have been like this for at least a year and the transplant unit have failed to even bring the subject up. The failures just keep piling up. Time for that enquiry I keep talking about. There is no excuse. I await a decision on the next course of action. Add it to the list of many.

On the bright side chapter 6 of my book is about 2 thirds written and I will post abridged version soon. Seeya soon

Cheers

D J