negative vs positive: life changing opinions.

ozi2 · Guru

negative vs positive: life changing opinions.

Travel Bug · Guru

ozi2, I am so sorry to hear this news....but I am filled with admiration at the positive way that you are dealing with it.

As you are acutely aware, we never know what life will send our way...so thank you for taking the time to post this information that may help any one of us at some stage.

I wish you all the best with the trial mate. Take care. Pam.

Firefly · Guru

Geez Oz, I hope this trial is beneficial to you mate. x o.

Thanks for posting this postive thread. I know so many who have suffered the same treatment, but have done as you say, sought a second opinion. wink

How long is your trial for Oz?

All the best with it my friend.

ozi2 · Guru

Hi Pam and FireFly, in addition to my post and the confronting nature of my illness, it has opened a Pandora's box in area's I had yet to address; ie, updating my will, appointing a medical power of attorney, enduring power of attorney and in the case that I live in NSW but most likely will be treated in Qld (nearer) then a different legal requirement arises if I ask that no resuscitation be undertaken. Whilst my intention was for cremation on death my children I could see were uncomfortable with this and on further reflection of the impact on young minds (5 grandchildren) I think burial gives them a place to visit/reflect. It doesnt bother me either way but I know it can be an issue for those grieving.

FireFly, I really cant say for sure when I start the clinical trials for as the specialist stated, I will have to get worse before I can access the treatment (there are parameters that have to be met to qualify as they are ongoing clinical studies) Once my haemoglobin levels drop below a certain level I will have transfusions and then onto the clinical studies.

Please, for anyone reading our posts, dont be afraid to ask questions. If I can give you a known fact I will do, who knows you just might be able to assist someone else.

So, for the moment how many forum members can see issues with their own medical/legal issues that they should revisit/revise? Have you thought of becoming a donor?

cheers,

ozi2

Firefly · Guru

I am a donor on my licence, not my eyes though, I wanna see where I am going when I am on my way. wink

What is your condition called Oz?

I need to update my will and all the things you mentioned, which we never like to think about, ie power of attorney etc.

Its better to be prepared than be too late to let your wishes be implemented.

I don't wish to be cremated or buried and I don't think being thrown in a paddock is an option so thats something else I need to address. confuse

Is there a big difference between NSW legals and Qld legals as far as wills etc go? I am NSW and the difference in our RTA and theirs is hugh so I can only imagine mate.

DellieMay · Senior Member

Thank you Oz. It takes a lot of courage to face any threat to life, let alone your own. And here you are, thinking of others!!! Your reminder to all of us to "get things in order" is appreciated and timely. Take care of yourself and keep us posted. Thoughts are with you mate.
Dellie and Dero

ozi2 · Guru

Hi FireFly, I have been diagnosed with Myelofibrosis.

If you are not wanting cremation or a paddock have you considered the bin Laden burial at sea biggrin

Re updating of wills, I cant give you a legal opinion obviously, but one would think that your last will and testement would be whatever you wish it to be if properly prepared!

The document I refer to in Qld is called, Advanced Health Directive which deals with future health care when a patient is unable/incapable of making decisions regarding their health care and issues regarding final outcomes etc.

Nice to read that you are a donor F/F

cheers,

ozi2

ozi2 · Guru

Hi Dellie and Dero, whilst I have much to prepare for, at least I know in advance what needs to be done, addressed etc. Could I suggest to members that the cost of reviewing your wills/situations is not great, just a few hundred dollars if reasonably simple, so really no excuses for any of us putting it off as it then gets very messy and naturally more expensive.

cheers

ozi2

Helena · Guru

ozi2 What a positive mind you have thank you for sharing with us what must be a very difficult situation for you and your family a very timely reminder to all of us. thank you once again and hope things go well with you Helena.

eagle one · Newbie

Dear Ozi2.What a breath of fresh air you are.I thank you for your thoughtful and understanding contribution to my life.I like others have mentioned before will now change a few things that I have taken for granted.I make no mention of your illness because words can't convey properly the admiration I have for your humane honesty.Good luck.

Sheba · Guru

My thoughts are with you ozi2. Have been a Donor for quite a few years, and also have an Advance Health Directive. Last visit to the Hospital they asked if I had one, and asked for a copy so that it's on hand if ever needed.

Keep positive, you never know what is around the corner.

Cheers,

Sheba.

jules47 · The Happy Helper

Ozi2 - it is wonderful that in your position, you are still helping and advising others in so many ways. I know only too well that life can change very quickly, and I was very lucky in that eferything was set up to be relatively easy to handle - wills etc.
Stay as well as you can for as long as you can my friend - take care.

ozi2 · Guru

Hi Jules, I have absolutely no issues at all in talking about my situation as I truly want to get members thinking about the consequences of not addressing their own situations by not updating wills,insurances and a whole plethora of things we sometimes take for granted. I dont think there are too many teenagers on this forum smile

My children have also had a wakeup call themselves regarding their wills and providing for their children. Both run busy, successful enterprises but had not ventured down the path of preparing properly constructed wills etc, let alone considering how they would choose how they leave this earth........its human nature isnt it! However, as a result of my diagnosis they have started the process as they realise the consequences to their little one's if they fail to do so.

cheers,

ozi2

Firefly · Guru

It certainly got me thinking. My partner, for want of a better word, and I have the classic two different families. We are not married and doubt we will ever be to be honest. His side don't like me, my side are great with him. biggrin

Oh the drama that will be had when one of us depart and we don't have matching wills etc. We live in my house I bought 30 years ago so it does all need to be nutted out properly and when he gets back this week, we will have the chat thanks to you Oz. x o.

Have a great weekend mate, the sun is shining and the birds are singing here in the Hunter Valley, hope its nice where you are. smile

Romy5152 · Guru

Hi ozi2,

Yes, life is not a guarantee mate, and while I'm sorry to hear about your condition, I'm really happy to see you're still maintaining your sense of humour! It's so important for you and your positivity. I have a nursing background, and know where you're coming from when you insist on second opinions - or even a third if necessary. You absolutely must be comfortable with your doctor, especially in a situation such as yours. It might cost another consultation fee, but peace of mind is more important. Best of luck with your treatment/s, and with the love and support of your family and friends, I hope your journey is as pain-free and peaceful as possible. Please keep in contact. I'm sure I speak for all when I say that we'd like to keep you company too. Big cyber hug!

Gerty Dancer · Guru

Have been a bit slow to catch up with this thread, want to add my admiration to everybody elses Ozi. People working in medicine are either the worst hypochondriacs or the best patients, hope I'd be like you if I was in that situation. You sound like somebody I would like to be treating me if I was ill.

Yes, like you Firefly, needed a carefully written will for us both but after much thought, got it all sorted before we did any travelling.

We even got an Emergency Locator Beacon after Mr D's heart attack earlier this year. hope never to use it but it gives a little assurance.

Wish you the very best of whatever happens Ozi. Look forward to updates smile

Ma · Guru

Having a positive mind set regardless of prognosis certainly can and does come into play.

My late husband was given 4 months to live and 8 years later he decided he had had enough. He kept up his positive attitude right to the end and chose HIS time to leave, not when they said he should leave.

We had all the necessary forms and will etc in place, and believe me they were put to good use when the time was appropriate. I have all my necessary legals done and my now husband has his all in order too.

I have helped some of you in the preparation of your wills and necessary documents and on further investigation only those that have been executed in NSW are legally binding. All you other out of state nomads should go to a reputable legal representative in your home state and have them redone for them to be legal.

Keep up the positive attitude Oz. It will stand you in good stead. All the best to you my friend and remember all your fellow nomads are here with a shoulder or a beer or whatever you need at the time.

Blue's and my thoughts are with you.

ozi2 · Guru

Hi Ma, Gerty and thank you for your kind thoughts.........amazing isnt it what a forum of "strangers"can offer each other?

Well the journey continues, I am currently going through the process of arranging everything that I can possibly arrange to ensure my family is spared any financial hassles and to make sure that all funeral processes are complete, paid for and clearly outlined. It has been quite funny at times, especially walking into a funeral home and being asked what I wanted! Well mate, its for myself thanks, could you give me a price of "up to the gate", no casket required? The look on his face was hilarious as he tried to figure it all out. The term up to the gate is for the funeral director to pick up one's remains from place of death (dr's death certificate required of course) place deceased into casket (supplied) and deliver direct to place of burial. Its simple, cheap and easy enough to arrange ( well, if you have some idea of your use by date smile ) Of course arranging a funeral this way deprives the funeral director of many thousands of dollars and so on occassions such as this his grief is genuine biggrin

If you have any questions then this is the place to ask and I dont have a problem answering if I can.......ie, cost of "real estate"legal, even where to buy a casket online.

cheers everyone

ozi2

ozi2 · Guru

Gerty Dancer wrote:
Have been a bit slow to catch up with this thread, want to add my admiration to everybody elses Ozi. People working in medicine are either the worst hypochondriacs or the best patients, hope I'd be like you if I was in that situation. You sound like somebody I would like to be treating me if I was ill.

Yes, like you Firefly, needed a carefully written will for us both but after much thought, got it all sorted before we did any travelling.

We even got an Emergency Locator Beacon after Mr D's heart attack earlier this year. hope never to use it but it gives a little assurance.

Wish you the very best of whatever happens Ozi. Look forward to updates

Hi Gerty, I had the privilege of working with caring nursing staff during my career, just everyday people doing wonderful things for their patients...nothing has changed except they have to do more with less under very challenging conditions. I know from the oncology staff I have been introduced to that I will be in the hands of caring, humane professionals.

cheers to you both

ozi2

milo · Guru

Hi ozi2, lifes a pain it the a**** when you dont have your health
know all too well personally, not just from my mums experiances with dementia etc
and my dad with his various problems but with my own personal experiance
I was a few weeks off from being in a wheel chair for life after a stuff up with diagonsing my
conditions buy my local gp, we ended up with a specialist in sydney and went to hospital that day, next day i had a spinal cord operation, I had a fall 6 years before that but for some reason before the op just lost all mobility, so i know what you mean about second opinions..
if in doubt ask..

good luck ..

ozi2 · Guru

G'day Milo, yes mate, life can be a pain sometimes but every second above ground beats the one below hey? You really seem to be getting a lot done with your life and I bet your father really appreciates your love and input into his life.

Get going on that boat trip mate and have the time of your life,

cheers

ozi2

milo · Guru

thanks ozi2, yeah life is full of challenges , as my dad always says you get over one and get ready for the next..

not long till our trip now, we leave on wednesday.. whoo.. hope for smooth seas!

Cruising Granny · Guru

The only certain thing about life is death. It's just how we get there that varies.
As I have matured (got older) I have faced the fact that our turn can come at any time.
I lost my mum when I was 4 and was not allowed to deal with it. Kids didn't know about death and grieving, according to my grandmother.
Over recent years with all my health hassles I found it was certainly worth my while to question and have my health investigated thoroughly.
The health I enjoy right now is due to the GP's curiosity and determination, and what was diagnosed as chronic proved to be resolvable by surgery.
Unfortunately you don't get that choice, but you do have a chance to contribute to medical science, as I did when I gave them permission to use my faulty parts for research.
As a member of the medical fraternity you have the insight into the other side of how this bag of bones we stand in works. It must give you a clearer understanding of what is happening to you. It doesn't change the outcome, but it does make you better prepared.
It's just hard for your family to witness your deterioration over time. It also gives you all a chance to prepare.
I wish you all the best, and your attitude will get you through the hardest part with a great spirit. You can't change it, but you have found a great way to accept it and make the most of the time you have, of the highest possible quality you can give your family and yourself.

ozi2 · Guru

Cruising Granny wrote:
The only certain thing about life is death. It's just how we get there that varies.
As I have matured (got older) I have faced the fact that our turn can come at any time.
I lost my mum when I was 4 and was not allowed to deal with it. Kids didn't know about death and grieving, according to my grandmother.
Over recent years with all my health hassles I found it was certainly worth my while to question and have my health investigated thoroughly.
The health I enjoy right now is due to the GP's curiosity and determination, and what was diagnosed as chronic proved to be resolvable by surgery.
Unfortunately you don't get that choice, but you do have a chance to contribute to medical science, as I did when I gave them permission to use my faulty parts for research.
As a member of the medical fraternity you have the insight into the other side of how this bag of bones we stand in works. It must give you a clearer understanding of what is happening to you. It doesn't change the outcome, but it does make you better prepared.
It's just hard for your family to witness your deterioration over time. It also gives you all a chance to prepare.
I wish you all the best, and your attitude will get you through the hardest part with a great spirit. You can't change it, but you have found a great way to accept it and make the most of the time you have, of the highest possible quality you can give your family and yourself.

Hi CG and thank you for your comments. Firstly can I say that you are proof positive of pursuing answers and with a good Doctor you have found and achieved a better health outcome which has lead to a further improvement to the way you live your life, ie, your new career..........its been really nice reading your posts and the outcomes you have realised, you are to be congratulated.

Re my own health, I accept the diagnosis as final, the prognosis will be determined by my own outlook, that is, remaining as confident and positive as I can, looking after my health and enjoying the joys of a loving family....words can't describe the value of such love, a simple hug from a grandchild is beyond description to me.

Preparation: After the shock and anger have passed I have addressed most of the issue's that demand attention and I feel at ease knowing there will be no complexities or difficult decisions for my family to make. In fact I feel quite at peace with myself with the knowledge that I have finalised details which in a sense has removed a burden. I am a organ donor and comfortable with it, however the disease itself and treatment may make donation unviable.

Cheers

ozi2