Now I'm scared

Now I’m scared

It has been a whirlwind of a day with it initially starting with the good news that I was finally allowed to check out of the hospital in which I was recovering from my retroperitoneal lymph node dissection operation (fancy name). It was a pretty big operation as I had complications with the big vein, the vena cava, which brings back all the blood to your heart. They took out 15 lymph nodes, the vena cava vein and of course the tumour itself. To put it all back together, 50 staples were stamped vertically across my stomach. I was of course asleep for all of it, and didn't feel much pain initially as I was given the finest opium straight from the fields of Afghanistan. When I was taken off it, the pain was pretty intense and I was immobile for quite some time. The most difficult part was my diet being restricted to just soup and jelly, which has resulted in me feeling very weak, constant state of nausea and of course hungry. Unfortunately that is the ‘good’ news.

Just after I was told I could go home, I was informed by the surgeon that there was still cancer present in the tumour they had taken out. My blood results also showed an increase in my tumour markers. Suddenly the world came crashing down around me. A phone call from my doctor confirmed that further treatment/chemo would be required. She is to consult with experts in Melbourne and America about the right course of chemo as it is rare that further chemo would be needed at this stage and is crucial the correct choice is made. It is likely a high dose of chemo along with stem cell transplant will be the path taken.

I had become too ‘positive’ in the sense that over the past few weeks it never crossed my mind that I was going to need further treatment. I had started to live normal again, was feeling healthy, regaining my strength, eating uncontrollably. I was sure the operation was the last hurdle I needed to overcome. It was quite a shock. I was and am still upset. I have rarely cried over the past 5 months, but today the taps flowed. The likelihood of me being cured of cancer was previously 90%, but today that dropped to 55%. Imagine being told there is only a 50/50 chance of being cured. You would never want to wake up. That’s enough with statistics, as they serve no good but I’d be fooling myself in thinking that the cards I have been dealt with are anything but good.

My mind as you would expect has been all over the place since my ‘new’ diagnosis this morning. Again I went searching for why why why was this happening to me. Was it eating habits? Karma? Or simply that nature has decided my time is up. Forgive me for saying this as it quite gloomy of me but I can’t help but think that all I am doing is buying time and postponing the inevitable. I’m not being silly thinking like that, as I believe anyone in my circumstance would. But if I am just buying time, then I intend to buy fifty years. I am feeling quite angry. Angry that the bastard that cancer is has refused to go away quietly. It tricked me into thinking I was defeating it, laying dormant only for it to raise its head just as I was finally coming out of the tunnel. Angry that this is not only disrupting my life, but those that are close to me. My Mum, Dad, Alice, Holly, Liam and Shaun. It’s not been fair that they have been dragged into this.

My body has again gone into ‘survival’ mode. The crying will stop as I become emotionally sterile and my minds only focus is to become healthy again. I’ll no longer be able to dream about the future as it is extremely difficult to do so when one’s ‘fate’ is not certain. My body is quite weak and under nourished at the moment because of the operation, and it will be a while yet before chemo can commence as the body will need to be strong to while receiving the deadly mix of drugs given during chemo. I am scarred about the future. During this whole ordeal, I have never previously thought of death as I was sure that I would conquer this disease promptly. But setback after setback and then today’s bombshell has meant that it has been at the forefront of my mind.

I know this post is pretty negative and I guess depressing, but right now this is how I am feeling. I can’t make any jokes because today I do not feel like laughing. I needed to write this post today, however negative and silly some of it might be. I needed to get it out of my head and write it down.  It will take time for my mind to digest today’s news and I will be more positive as each day goes by, and the silly talk will eventually subside. I have come this far and I there is much fight left in me that hopefully this next course of treatment, whatever it may involve, will blast away all those nasty cells for good.

The end (well sort of)

The end (well sort of)

As some of you are aware, I finally made it back home to Ireland last month and since being back I have had quite a few friends and family question whether or not I was going to write another blog post. ‘How does it all end?’ they would ask excitedly like I was putting the finishing touches to a Potter book. Scans revealed last month that this whole ordeal is not quite over just yet and before I go into what the next course of action is, I am first going to enlighten you for a moment on the wonderful experience that was Chemotherapy.

The easiest way to describe to people who have never experienced chemo is that is like having the most dreadful, excruciating hangover you have ever encountered. Now take that and add in insomnia, ringing in the ears, a metallic taste in the mouth, constipation, diarrhoea, exhaustion, restless legs, nausea, vomiting, breathing difficulties and my favourite – hair loss. You are bed ridden 24/7 and each day of receiving chemo becomes harder as you know injecting more of the drugs into your veins is only going to make the side effects worse. The nurses at the Prince of Wales were great and gave me a bed in my own room every day I went in while everybody else had to go in a room and sit next to each other while they received chemo. They knew I was never going to be a happy camper if I were put in a seat. That and I was the youngest in the centre by about twenty. When I actually finished chemo, to my own surprise I didn’t actually feel like celebrating. Chemo had left me void of having any emotions, I no longer felt happy or depressed, just meh. Eventually my mood got better as I began to see the hard and difficult days were behind me and of course why I was undergoing all this treatment.

Losing my hair was something I didn’t actually mind too much at first. In fact I quite enjoyed pulling clumps of hair out. Although it did get quite annoying waking up to find you shed half your coat of hair on the bed sheets. A special thanks to my Mum who successfully with the help of clippers managed to make me look like a tormented lesbian.  But thankfully that didn’t last long as every strand eventually fell out. It was only when the eyebrows started to go that I got upset. I had always been proud of my big thick bushy eyebrows, even before Miss Delevingne arrived on the scene. Now I actually resembled an egg shell. It was only this week that facial hair started to grow back, growth on top has not commenced yet, and I have been warned to expect it to grow back curly at first with a different colour. Expect to see pictures of a curly red head James on Bondi beach in the future.

Chemo turned my brain into a ball of cabbage where I didn’t feel like talking to anyone or doing anything. Staying in bed just staring at the ceiling is all I wanted to do. I wouldn’t say I was bitter, more frustrated that I had to undergo all of this while everyone else I knew was out enjoying the ozzie summer. I would sometimes snap at Mum or Shaun, simply because they were the only people I could vent my frustration at. I spent day after day just lying in bed either reminiscing on all the good times that were had or dreaming about what I was going to do when this was all over. I was also in the habit of trying to figure out why this had happened to me and not fat Joe from across the street. After all I considered myself reasonably healthy, I exercised daily, didn’t smoke and only consumed alcohol twice a week. I had completed a charity run a few weeks before going into hospital, despite the tumour in my abdomen having been there for eight months.  Doctors told me that unlike other cancers this form of cancer had nothing to do with my diet. It was more likely down to genetics and also the fact I was in my twenties and white. What triggered this nasty gene to come alive we will never know, but as my doctor pointed out if it didn’t happen now it would have almost certainly done so at a later stage in life. So I guess since birth I have always had testicular cancer lying dormant in me, like a time bomb waiting to ignite.

 The chemotherapy is now over and done with and I hope that my body will never have to go through such torture again. But unfortunately I will have to undergo a very serious operation at the beginning of March back in Sydney. Scans taken in January revealed that there was still a sizeable tumour in the abdomen. That in itself is not so much a problem; I was told to expect such an outcome. What was a problem was the location of the tumour which is sitting on and squeezing the vena cava vein, which is the big vein that brings all the blood around your body back to your heart. This has now become irrevocably clogged and thus unable to function at all.  They are taking that vein out along with the tumour. What it all means essentially is blood from the waist down has extreme difficulty finding it ways back to the heart. Any movement with the legs causes them to swell and considerable pain is felt. My first thought was just put in an artificial vein and was surprised to hear that this is not possible. Instead, my body over the next few years will have to find other means/vessels to transport the blood. Nobody can guarantee that will happen but being young and fit and oh so healthy my body will hopefully find a way as promptly as possible. Until it does, walking up the stairs, running, swimming, pole dancing will all be quite difficult.

The surgery itself will involve slicing the front of me in two, from the chest down. A lovely big scar will remind me daily about this whole ordeal. A number of organs are going to be taken out and dumped on my chest. Splendid stuff really. However I have insisted they give me enough aesthetic to put me under for a week as I will never be able to sleep again if I wake up during the operation to find my pancreas winking back at me. As a number of lymph nodes will be taken out, my surgeon has warned me he might not be able to save all the nerves which surround them (these nerves are essential for ejaculation). Now, I’m 23 and no man in this world is going to leave permanently penis disabled. They have already taken one ball and there is now this possibility, I mean they might as well just chop it all off for good measure.

So March the 3^rd will be another big day for me but hopefully that will be the end of it, and I can then look forward to getting myself healthy and fit again.  Right now I keep seeing all of this as just one massive inconvenience in my life. After spending the past couple of years pottering around the world living the life, I was finally ready to settle down in Sydney, acquire some more skills through a masters degree at uni and get some sort of a career going. It is still something I want to do, but over the past few months I have had plenty of time to ponder about life, and what I really want out of it, and all I can think of is that I want to travel, because the world is so wonderfully beautiful and big to be bogged down in one place slaving away in an office . But dolla’s do make me holla , so there has to be a balance and although a 9 to 5 job may not be unavailable you can be sure I’ll be travelling whenever possible.

While it has been an awful four months, I would say I have fared pretty well considering.  I mean first of all I can almost certainly look forward to being in remission this year and secondly, even though I only finished treatment four weeks ago, I am feeling pretty good with all of the side effects having subsided with only my legs giving me trouble. I can eat and drink again without vomiting. I’m even back listening to Madonna again! It was very tough psychologically and I think I will always be somewhat affected by what has happened. Has it made me a less materialistic and a more considerate and caring human being? No, and I won’t be defined by having cancer but it will always be a big part of my life and I am okay with that, as I see it all as big pain in the ass and I look forward to this year and getting back to my old self. Everyone has been so great in their support, my friends, family and of course Shaun and for that I am forever in debt. Anyone I don’t see over the next couple of weeks before I go back to Sydney will hopefully do so when I am back over in May. 

And remember boys, check your balls!