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My story [PART 1]

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  • My story [PART 1]

    Hello Guys,

    Here is an article I wrote for the Cancer Support Association here in Perth (Western Australia).
    I thought I would share it with you.

    Tony Mobily

    In my previous life, the sweetest thought I could conceive was the image of Anna and I at 85 sitting on a bench, together, old-hand in old-hand, looking at the Swan River flowing quiet and mindless in front of our eyes, talking about our life of sweet memories. In my previous life, the most saddening thought that haunted me was the image of Anna old, on her own, clutching her handbag, looking at a river - any river - flowing in front of her lonely eyes.

    I was invincible, or so I thought. In September 2005, I was a fit, healthy, young man of 29. I was trained in classical ballet, and had been physically active more or less my whole life.
    I had just been to Central America, and fallen in love with it; I was already planning my trip back there. I was happy to be back in Australia, hanging out with my girlfriend Anna and fully enjoying our relationship. I was also becoming more regular in attending the Zen Dojo near my house; I felt that meditating every day was very beneficial to me. Life was good, some would say.

    During my trip, I had been too busy or too distracted to notice that my right testicle had started changing its shape. Partying in Panama, loving the people in Nicaragua, seeing family and friends in Italy, distracted me. Or maybe not: perhaps I was just very unobservant of my body. It's surprising, how rare it is for men to look at their own testicles! I was also used to "weirdness" on my testis because of my varicocele (blown up veins in your testicle, a very common condition).

    Then, on Monday (the 29th of August), my right testicle started hurting. Strong denial kicked in. I was the most hypochondriac person on the planet; and yet, there I was having "hot baths" because my right testicle was hurting a bit. Denial or not, the hot baths seemed to work: the pain very nearly disappeared. Health was good again. I was glad, because the coming Friday (2nd of September) was an important date: Anna and I would celebrate our anniversary. That night, a Friday I will never forget, I decided that my discomfort to my right testicle was over, and we made love - passionately, as lovers do on their anniversary.

    I have some reason to believe that love saved me. Anna and I making love caused the cancer to bleed into itself. The pain increased. Anna looked at my testicle on Friday. "You are going to a doctor on Monday", she said, worried sick after noticing the change of shape which was somehow invisible to my denying brain.

    I never made it to the doctors on Monday. By Saturday night, I was at the emergency department at Fremantle Hospital. I had been given morphine (which I hated - I hate any drugs) to contain the pain. A urologist and an ultrasound technician were called in. The sleepy technician - an Asian girl - put the ultrasound machine on my
    testicle, and looked at the doctor. The doctor looked at her. She looked back to the doctor. They were both very carefully avoiding any eye contact with me.
    "So, how does it look?" I asked the technician.
    "Err... abnormal?" she said. She sounded like a school girl. I will never forget that response. I had feared some kind of "bad news", health wise, my whole life.
    I avoid taking pain killers as much as possible. Yet, this time, I was glad I had been given morphine.
    "It's cancer, isn't it?" I asked the doctor.
    The denial wall I had built very carefully collapsed with this sentence. I realise now that I had known that something was very wrong with me for quite a while.
    The doctor smiled.
    "Well... yes. There's a 98% chance that it is indeed cancer."
    "The testicle has to come out, doesn't it?"
    "Yes. That will need to happen, no matter what. Even if it's not cancer."
    The morphine's barrier to feelings was crumbling slightly.
    "But let me tell you something. It's one of the easiest cancers to deal with. It has a very, very high survival rate. You are very lucky."
    The only word that struck me was "survival". The rest of the sentence became noise. Survival: from "super", and "vivere", to live. He was talking of the chances I had to live.
    What kept me together in one piece, was the doctor's smile.
    I was brought back to the emergency ward, Anna waiting for me there in desperate silence. It was torture for her, desperate to know.
    Torture for me, having to tell her. I didn't know where to start.
    The morphine had gone on holiday.
    "I am gonna say this once. I have cancer. I had the ultrasound, and it showed it. They are pretty sure."
    It was important to let people know. The "telling" phase was tough. It seemed to break, in the blink of an eye, the certainty people associated with me. Tony is fit. Tony does ballet. Tony is invincible. When I told people, I felt like I was tearing up those images, and replacing them with a bald, pale person fighting cancer.
    Anna told her mother that very night, and told our friends the following day.
    The Sunday at the hospital was surreal. I could not come to terms with the fact that they were going to take a testicle out of my body.
    That I would probably need chemotherapy. That I had cancer.
    I still tried to be funny, writing "I don't have the balls to face my operation" on the ward's whiteboard. But there was that "but".
    Nothing seemed to be funny with cancer.
    I went through the operation the following Monday (orchiectomy). I asked for a fake testicle, and... got one!

    Everything had changed. Nothing was stable, or secure. I don't think that important things became more important; rather, unimportant things simply disappeared. Having lots of money; being popular; being able to do one and a half tour on l'air (double pirouette while jumping); getting my teaching qualification for ballet; being successful at work; paying off my house. All those things simply disappeared; the things that stayed, stood out.
    Anna, shined. Sudeva (Anna's dad) and Subhi (Anna's dad's partner) shined with her. My mother. My friends here. My friends far away in Italy. My virtual friends on the TC-Cancer message board. I realised that "ownership", "success", "popularity", were all dreams, illusions. All I had, was myself and the fantastic energy donated to me by the people I loved the most.
    Anna spent every single moment she had in hospital with me - pretty much every day, all day.
    To me, this was yet another important lesson. During my time in hospital, I kept on thinking "Well, it's strange, but I I don't mind spending time here". Then, one day Anna was late: she came after midday, rather than at nine in the morning. In those few hours, I realised that the reason why I didn't mind staying there, in hospital, was Anna. Without her, I felt deeply, intensely lonely, restless, desperate. When she arrived, just after midday, I realised that a whole week in hospital would have been unbearable without her.
    I would say to her "what if the cancer has spread?", and she'd say "No it hasn't, first of all because you caught it early, and second because your cancer wouldn't be that silly".
    Her dad and her dad's partner, Sudeva and Subhi, also came every day.
    We'd play cards, eat, or simply talk. They bought us an expensive slow juicer, and told us about raw food.
    Many other friends came to rescue. Lila was there at the hospital a few days after the operation, with twelve hundred dollars to cover our bills - to date, she has never asked for her money back. Zofia, Anna's mother, sent us expensive supplements and a video from the Bristol Cancer Help Centre. Dave, who has a reputation of being always right, kept on repeating that he "knew" that everything would be OK.
    We were all closest and best friends.

    It took me quite a while to recover from the operation.
    Just ten days after getting out of the hospital, Anna and I went for a holiday in Margaret River. At the beginning, I couldn't walk for more than 5 minutes. By the end of the holiday, I managed short walk without being puffed up.
    Throughout the holiday, one word was always with me, like a mantra: "Cancer, cancer, cancer, cancer, cancer, cancer. Cancer." It was something that lives with me, in me, fed by my fears. I had been told that I may need chemotherapy, depending on the markers and how far they would drop. My life became a numbers game.

    [... continued in the next thread ...]
    Last edited by merc; 03-13-06, 07:04 AM.
    Diagnosed TC 3rd Sep 2005
    Right I/O 6th Sep 2005
    10% carcinoma, 5% seminoma, 50% mature teratoma, 35% Yolk-sac tumor
    AFP: 20 Oct 05: 3; 9 Dec 05: 4; 12 Jan 06: 6
    CT scan: nodes adjacent left renal hilum, 6/7 mm (Sept 05)

  • #2
    My story [PART 2]

    In October, Anna literally forced me to call up the Cancer Support Association. I have always been against the idea of "counselling".
    It's probably in the way I've been brought up: I have always felt invincible, able to deal with whatever came. I managed to train in ballet as a late starter. I managed to start two successful magazines. I never needed help, or "somebody to talk to". However, this time I gave in and I drove to Cottesloe, to the Cancer Support
    After going the first time, I swore that I would go as much as I possibly could.

    It's very hard to explain to somebody why you'd go to a cancer support group, even after you're given the "all clear". Well, the answer is not easy.
    First of all, you are never, ever "all clear" once you've had cancer.
    If you are a cancer survivor, you have to smile and nod when people say "Oh, you're lucky you don't have cancer anymore". Deep inside, you know that there is no knowing whether cancer is still there and will come back in 1, 2, 10 or 20 years. And even if it did "go away", the experience will have changed you deeply regardless. Cancer might not be there, but its effect on you is.
    Also, in every meeting, we are asked to tell the group what we bring, and then at the end of each meeting, what we take away. My secret is that I often make up what I bring (the truth would be embarrassing: "silly jokes", "a new issue of my magazine", "why is every traffic light red?"). When I leave, I am always left with a deep sense of perspective. The cancer support group is a reminder of all those things I have learned during my early days with cancer. When I was diagnosed, cancer gave me a few crash courses; amongst them: "What's really important 101", "You are mortal 101", "Love everybody 101". However, I know that I would forget a lot of these important, vital things if I didn't continue meeting with the support group.
    At the cancer support group you have a chance to establish genuine friendships with people around you. In my experience, you create a real bond with somebody when you go through something really tough or demanding with them. When you are very young, friendships have an intensity hard to explain, because you are doing the hardest thing of all: growing up. Well, dealing with cancer is probably nearly as hard as growing up: it's tough; it's challenging; it's risky. So, you tend to bond with people going through the same thing. I happen to feel particularly close to two people in particular at the support group: Liz and Colin. I look up to them, and think about their strength and determination every time I feel low.

    The support group was there when my first CT scan, in December, came out clear. The support group was there when it looked like my markers had taken an upwards trend in January. They kept me motivated, and helped me take the right step to face the small crisis. The support group is here now, when they hear the news that my markers are indeed normal and my February CT scan is negative.

    I also saw two people depart: Peter and Colleen. I hadn't seen them before, when they were still physically healthy. Seeing them scared me. It's easy to hide behind words, but I will admit straight out that with both of them I felt a complete inability to get close to them. Two unique moments (Peter's amazing poem and Colleen's good-bye hug to me), happened quietly, nearly unnoticed. I knew they were special, but I didn't have the courage to embrace them. I got to know both Peter and Colleen later, after they left: the group always talked about them. The way Peter put out the group's candle. What Colleen used to say. I still feel a sense of loss, at the thought that I had been given the honour of getting to know them, even briefly, and yet I had built an emotional wall around me and missed that opportunity.
    To me, meeting them was "What's really important 102", "You are mortal 102", "Love everybody 102". Love everybody - the hardest one to learn.

    I am cancer survivor. Like many other people, I see cancer as a gift as it taught me more than anything else did in my life. It taught me about what's important and what's not important; how limited our time on this planet is; how important it is to love everybody regardless of their temper, health or desires. This cancer gave me a chance to meet outstanding people, and to strengthen my existing relationships with other people - including my mother, who lived overseas and came to Australia just to help us out.
    I sometimes think that I am "lucky", because my cancer was a "good" cancer, with "high survival rate". This "feeling lucky" doesn't last very long, because I realise that I don't know what's inside my body, I don't know if I will be hit by a bus in the next 30 minutes, and I don't even know what "luck" really is. And, to tell you the truth, it doesn't really matter.
    This cancer made me realise what is really important; it taught me that thoughts about the future can be sweet or bitter, but what really counts, in the end, is what you do right now.

    One of the most amazing experiences I can think of is to sit on a bench with Anna, hand in hand, looking at the Swan River as it flows quiet and mindless in front of our eyes, talking about our life of sweet memories.
    Diagnosed TC 3rd Sep 2005
    Right I/O 6th Sep 2005
    10% carcinoma, 5% seminoma, 50% mature teratoma, 35% Yolk-sac tumor
    AFP: 20 Oct 05: 3; 9 Dec 05: 4; 12 Jan 06: 6
    CT scan: nodes adjacent left renal hilum, 6/7 mm (Sept 05)


    • #3
      Wow! Bravo! Dianne
      Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
      Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma


      • #4
        Thanks for sharing your thoughts and experience with us.
        It's true, cancer can sure change one's outlook on life forever!
        Mother of TC survivor.
        Son, Josh 20, diagnosed Jan. 24, 2005. Left Orchiechtomy Jan.31, 2005. 4XBPE March 7th to May 28th 2005.


        • #5

          WOW, I can't believe somebody actually read it all :-D
          Thanks a million!

          Diagnosed TC 3rd Sep 2005
          Right I/O 6th Sep 2005
          10% carcinoma, 5% seminoma, 50% mature teratoma, 35% Yolk-sac tumor
          AFP: 20 Oct 05: 3; 9 Dec 05: 4; 12 Jan 06: 6
          CT scan: nodes adjacent left renal hilum, 6/7 mm (Sept 05)


          • #6

            Great story and well written! One important thing about telling your story is you will always have that to re-read when you aren't feeling so optimisitc about life. We all have our ups and downs, but during those down days, just go back to your story will help you remember what's important (the 101's, 102's and graduating to the 103's).


            Left I/O 5/7/05, Stage 1(pT1)
            No VI or LI, Normal Markers
            70% Embryonal, 30% Seminoma
            1st child born on 8/08


            • #7
              i know you already heard it ...but ...WOW!
              2/18/05 I/O , 90% embryonal carinoma , 5% yolk sac , 5% Teratoma , RPLD 3/7/05 , 3 nodes < 5mm , AFP 2 , hcg < 2 , IIA non seminona, Surveillance...