GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

Do you have or know someone with prostate cancer?

with 19 comments


I am still doing OK although I needed oxygen on and off throughout the day and now, at 2.20am I am up trying to clear the phlegm from my throat.

It was four years ago this week (16 April 2008) that I was diagnosed with prostate cancer.  They gave me 6 months to 2 years before It would take me out. Yet here I am today still waiting my turn.

From the outset, I have blogged about my progress and with around 80 posts, I believe I have built a reference covering just about everything that happens.  The index of these posts can be accessed by clicking my photo at the top right or the blue Beat Prostate Cancer ribbon a little further down.

I invite those affected by prostate cancer to use my experiences as a reference guide, and to add their stories, questions or comments to this blog.

This is the entry point for Lee Gallagher who went on to become a contributor.  Please read the comments.

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Written by Greg Naylor

19 April 2012 at 3:23 am

19 Responses

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  1. Greg. Its 21st April at 3.28 am and I have just caught up with your latest blog on the 17th April. I have been newly diagnosed 5th March 2012 with PC gleason 9 with all 18 cores in six segments between 90 and 100% Bone scans and CT scans OK for the moment but perineural invasion and vascular lymph invasion present in biopsi. I have been put on ADT and am awaiting HDR Brachytherapy and external beam therapy in June. I am 64 yrs of age and reside near Sarina Qld. My first indication of something being a bit adrift was a sudden urinary problem that drove me in desperation to my GP. As you would appreciate I have been on a steep learning curve since diagnosis and came across your blog site as part of my research and I have to congratulate you on your insights and honesty throughout your journey It has taken me a few days to catch up on all your blog history. After absorbing all the technical information about this disease I started to try to find out any personalised examples of real people dealing with different aspects of treatment and mental processes that might help me in understanding the journey I have begun. Until I found your blog site it was a bit like the elephant in the room syndrome but your blogs have given me a much needed insight into where I might be headed and to the insanities of the mental toing and froing while headed there. I particularly appreciated your pieces and experiences on the effects of ADT as I have been feeling like a shipwreck since I have started and I am not looking forward to the possibility of the next 12 months or so on this stuff. You laid out all the symptoms for me and in three weeks since I began they are spot on but what does a person do. I plan to put up with all this until I am either over it or it becomes obvious that the track is going down hill. My options if that point is reached remain persona for the moment.
    Greg thank you from the bottom of my heart for your diligence, persistence, honesty and humanity in jotting down your experiences for others to benefit. Cheers mate and all the best for whatever else you find down the track.
    Popeye

    Lee Gallagher

    21 April 2012 at 5:02 am

    • Welcome aboard Lee/Popeye. It has taken me 4 years to gather this much information. Don’t reinvent the wheel … my race is almost over so it is up to you to further research the disease.

      You are fortunate that your bone scan and CT scan are both clear. That means that you may well live a normal life after treatment. ADT will do what it is designed to do i.e. reduce the psa level and theoretically reduce the available testosterone but will most likely destroy your sexuality. (In my case, game over, kaput etc… but what is the alternative?).

      You are already teaching me new stuff. My cancer was too far gone for HDR Brachytherapy – wow – what a procedure! When it is over, please tell us about it.

      Stay strong and manage your own treatment options. Our doctors will offer you the gold standard treatment for prostate cancer but that does not mean you cannot question their recommendations. If there is ANYTHING they tell you that you do not understand, ASK THEM TO EXPLAIN.

      Greg Naylor

      21 April 2012 at 4:01 pm

      • Greg: Thank you for your speedy reply to my previous comment. I head to Brisbane on 30th May for the three day brachytherapy followed by a two week break then the external beam radiation. I promise I will let you know all about the HDR stuff as soon as I can. All the fun parts warts and all. I have done a fair bit of research on this and much can be sourced on the web. I have to say I am not looking forward to the event except for the fact I just want to go ahead and get this ship back on course. I remember your comment going in to bat about us having the best medical system in the world and you are spot on. I will however take your advice and question anything I am not sure of at any time throughout this little voyage of ours. On the other matter that keeps arising with the effects of this cancer, mine hasnt arisen so to speak for some time prior to my diagnosis. over the previous couple of years I just assumed I had reached an age where I had used all my shots up and that was it. I also assumed that my lovely wife of over 40 years may have been secretly happy over these events. However the diagnosis and chats with the specialists on this subject brought me back to earth a bit with the doctors presuming that this cancer may have been with me for quite some time prior to the symptoms that led me to the biopsy table. The droopy attitude of said appendage was likely a symptom that I missed. One good thing to come out of all this is the fact that my wife and I are closer and more honest with our dealings with each other over all these matters. I couldnt be prouder of my first mate than I am at this troubled time, she is a beacon for me at the moment and I love and respect her dearly. She might however give me away some time down the track if this ADT keeps making me get grumpier and grumpier, can someone please tell me the ADT side effects get less???? Greg I have been trying to find something to say to you that might give you comfort in your worst hour and I realise that there is nothing I could say or do that you have not already pondered and decided on. However I would like to pass on this verse a very good mate sent me the other day. I loved it My old mate (Satts) and I have been over the Kokoda track twice in 2008 and 2009. He is a collector of verse and phylosophical stuff and sends them on from time to time so here you are I do hope you enjoy it.

        Cheers for now .
        Lee

        One ship sails East,
        And another West,
        By the self-same winds that blow,
        Tis the set of the sails
        And not the gales,
        That tells the way we go.

        Like the winds of the sea
        Are the waves of time,
        As we journey along through life,
        Tis the set of the soul,
        That determines the goal,
        And not the calm or the strife.
        –Ella Wheeler Wilcox

        Lee Gallagher

        21 April 2012 at 10:52 pm

  2. Lee, you are on the right track in confronting your situation. Why do so many go into denial? All that does is consume the limited time a cancer sufferer has keeping him away from the main game … your future life and your relationships.

    One good thing to come out of all this is the fact that my wife and I are closer and more honest with our dealings with each other over all these matters. I couldnt be prouder of my first mate than I am at this troubled time>

    She may well turn on you at some time as most of our caring wives will usually lose the plot … at least for a short while. Caring has to be the worst job in the world. You don’t volunteer – you inherit it. I believe it must be harder for the carer (wife) than for the patient. If this damned cancer takes us out, our wives have to pick up the pieces and carry on. I am not sure that I could be a full time carer.

    Just telling your story gives me great comfort as I now know that others can and have gained solace in reading these blogs. There is nothing better to say. And, thanks for the verse – good philosophy is always welcome.

    Greg Naylor

    21 April 2012 at 11:48 pm

    • Greg: It was almost like an epiphany (spelling???) your last reply brings up a subject that there is little information available on the web that I can recall regarding the carer’s lot in all of this and as you point out it is the wives that have to pick up the pieces and carry on. I dont’ think I would make a good carer either. Perhaps we should invite others to have a say on the carers role and what it means. This subject also brings many thoughts to mind with those that don’t have carers or their partners are themselves ill with some dreaded disease. Thinking about this brings me to the conclusion ( I find it hard to believe I am saying this) that I am pretty lucky really having the support of my lady, others must be doing it a lot harder than me. I wonder if there is anything that can be done to assist and aid the carers in their inherited role or to assist those less fortunate??

      Cheers
      Lee

      Lee Gallagher

      22 April 2012 at 12:27 am

      • Greg/Lee Now here is an epiphany (Spelling????) After posting my last comment above I went soul searching through google and came straight up with a wonderful web site called http://www.carersaustralia.com.au
        Talk about ask and ye shall receive. I pose a question and in 30 minutes I have been given a great deal of information on which to build. Sometimes I wonder who is steering this ship on our voyage. Greg your not god are you.
        Now for anyone who may be interested this is a fabulous site devoted to carers and lobbying Govt for practical and effective programs. 1in 8 Australians are carers some 2.6 million of us. I recommend this site to at least give confidence that carers are being represented and are in good hands.

        Cheers Popeye aka Lee

        Lee Gallagher

        22 April 2012 at 1:12 am

  3. Lee, thank you for the carers link. I haven’t seen that one before. Here is another you need to learn about the Villa Maria Society, an organisation dedicated to helping the carers by providing a range of services from respite to financial help. They helped us financially about three years ago for which we will be forever grateful.

    Greg Naylor

    22 April 2012 at 8:02 pm

    • Hey Greg: You havnt mentioned how you are coping but as you found the strength to reply I guess your doing reasonable LOL. Thank you for the information on the Villa Maria Society. I went straight there raced around a bit and saw it was marvellous and added it to my favourites. Greg my recent pen pal, do you realise what has happened over the past few posts. You and I have discussed one (very important) piece of stuff that is part and parcel of anyones dealings with this disease and have already documented two very excellent places on the internet where many answers can be found. To any one coming behind us looking for this type of info it may be priceless. I guess my search shifted from technical to the holistic effect that this disease causes. I needed to be able to see (read) how this has effected a person or persons and follow the progress through to the end one way or the other. In this person or persons tale it needed to be factual and emotional day to day ups and downs. What are they feeling how are they coping what is happening with their spirituality, what has been the successes and the failures. The acceptances and the challenges of what is being dealt out. The role of the family and their battles with what is going on and the role of family carers or carers generally. (Sticky Beak I guess, Please forgive me)

      I could be talking here about any type of cancer and the seeker would be seeking the same answers, however I have prostate cancer and so does Greg and many other men so I go with the cancer I have.
      Greg I guess that is what grabbed me through your site. You supplied something I was looking for ( Nice to feel needed ay!) Just getting back to the carers bit can you advise that our posts are available to anyone out there seeking stuff or are these posts private between you and me. I would like to know that this stuff we have talked about is freely available to anyone.

      Cheers Mate
      All the best
      Lee

      Lee Gallagher

      23 April 2012 at 12:41 am

      • Hey Greg: I am about to try and go to bed but I remember you were happy to receive the little verse that my good mate Satts sent me. I have another one sent by him to me some years back that affected me deeply. Apparently it was a well known piece back a few years and was attributed to Anon. Since it became widely known it has now been found out to belong to a prisoner in America on Death Row many years ago, or so the story goes. You may or may not have come across it but in case you havn’t I will leave you with this bit of Good stuff
        Regards
        Popeye/aka Lee

        THE MAN IN THE GLASS

        When you get all you want and you struggle for pelf,
        and the world makes you king for a day,
        then go to the mirror and look at yourself
        and see what that man has to say.
        For it isn’t your mother, your father or wife
        whose judgment upon you must pass,
        but the man, whose verdict counts most in your life
        is the one staring back from the glass.
        He’s the fellow to please,
        never mind all the rest.
        For he’s with you right to the end,
        and you’ve passed your most difficult test
        if the man in the glass is your friend.
        You may be like Jack Horner and “chisel” a plum,
        And think you’re a wonderful guy,
        But the man in the glass says you’re only a bum
        If you can’t look him straight in the eye.
        You can fool the whole world,
        down the highway of years,
        and take pats on the back as you pass.
        But your final reward will be heartache and tears
        if you’ve cheated the man in the glass.

        Lee Gallagher

        23 April 2012 at 2:16 am

      • I have had a terrible cold over the last week. I think it came from the grandchildren visiting over Easter.

        All posts are public and reasonably well categorised so most searches will find the site. I think the index of posts is a winner (I must get around to updating it with the recent posts).

        Lee, like you, I knew nothing when I was first diagnosed and I realised that I had never died before. How do you do that? What do you need to know? Will I be able to manage it or can I do anything but just let it happen? So I started posting in the hope that I would find something like this elsewhere on the net. No luck – so I had to start doing it myself. It pleases me that you have taken to the site and the lessons I have learned.

        Lee, I have a serious proposition for you. I can give you publishing rights on this site. That means that you can document your journey alongside the stuff that is already there. As I am approaching the end of my journey, it would be nice to think that someone is prepared to continue learning and sharing new information about prostate cancer.

        Greg Naylor

        23 April 2012 at 3:25 pm

        • Greg: Apologies for the delay but your recent post to me has left me a little gob smacked and I am not sure if I am the right person for this task. I will be away and out of touch until Sunday can you allow me this time before I agree or not. Greg I am just new to all this and starting out on this voyage I dont have any credentials nor experience in these matters just yet. Hell apart from the ADT medication I still havnt had any treatment havnt even seen the inside of the hospital yet (apart from the biopsy) You honour me in your offer without really knowing who I am. For my part I need to feel confident I can do this and I also need to comit to carrying it through. I will be back in touch sometime late Sunday/ Monday morning. Health wise I pray you will be hanging around for a little longer you and I need to have more to say to one another.

          Cheers
          Lee

          Lee Gallagher

          24 April 2012 at 3:05 pm

  4. I don’t want to scare you away. However, it would be sad to see all this work lapse when I am gone. When I started, what did I now? Absolutely nothing! My formula is simple. Tell it as it happens. Tell it when it is good, bad and unbearable. I believe you are the first prostate cancer patient with the writing skills and an interest in confronting the disease to take this blog into the future. Take as long as you like to make a decision with the caveat that I could fold at any time in the near future.
    I look forward to hearing from you on Sunday/Monday
    Please contact me by eMail. Click greg.naylor@gmail.com

    Greg Naylor

    24 April 2012 at 5:04 pm

  5. I hope it continues. Even though we don’t post much, we read.

    Cheers

    Rox

    Rox

    3 May 2012 at 8:06 am

    • It is looking good, Rox. As you can see, Lee has the writing skills and the motivation to continue with his story. He may be a little slow at getting started as he is due for brachytherapy treatment and radiation which, as I understand it, is not a comfortable process. Anyhow, we all wish him well. BTW, how is the footy tipping going (sorry I was not up to joining in).

      Greg Naylor

      3 May 2012 at 8:34 am

  6. Baldrick: 36
    JB & Indii: 33
    Rox: 32
    Ray: 31
    Stuart: 23

    I’m still recovering form the week I only tipped 3. 🙂

    Rox

    3 May 2012 at 6:30 pm

  7. I’m getting to know the Collingwood team very well.

    Rox

    3 May 2012 at 9:23 pm

  8. Note that it took 3 tipsters to replace you, Greg – JB, Indii & Stuart. And we are all very grateful to have Stuart – he’s the world’s worse tipster but at least he makes the rest of us look good. Great to hear you’re still with us.

    Ray Dixon

    4 May 2012 at 11:23 am

    • I knew I was good – but that good?

      Thanks for your help last week in installing our new Editor. All I had to do was resend the invitation.

      Yes, I am still here and, as you can see by the current activity, at least my brain is still working.

      Greg Naylor

      4 May 2012 at 11:54 am


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