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!

Chemo - The aftermath

It has been a week since I finished my first batch of chemotherapy and boy do I feel like shit. I wasn't too sure what to expect from chemo, of course I was aware of it beforehand, but my knowledge of it was quite light. You are told a list of possible side effects beforehand and how everyone will react differently. The five days of chemo each consisted of being injected with drugs through the vein, they went pretty straight forward, it was after chemo when everything went haywire and it is those days in which I will be talking about in this post.

Chemo has turned me into something more akin to a zombie. I really do feel like a couch potato.  Chemo after all does try to kill you. Funny how medicine works isn't it.  You are drained of all energy, both physical and mental. Sitting upright I get breathless, even reading messages on my phone has become too energy consuming. Mentally, my head has been spinning all week, as you would expect. Whenever I close my eyes, I find it impossible to relax or to stay on one set of thought. My mind is jumping from one scenario to the next. Another problem has been the inability to dream, or to even think forward. Memories keep coming to me, but I am finding it frustratingly impossible to even dream about what I will do next week. So when I do lie in bed, mainly two periods of my life keep coming into my mind, summers spent in Lahinch and University. I think these were the times when I was happiest, carefree and life was ‘easy’. It is the polar opposite of life right now!  Nothing is more appealing right now than the image of a hot stew in front of the fireplace on a cold wet dreary winters day in Lahinch!

The anti nausea tablets work a treat and I haven't got sick once yet. Bread is about the only food I can stomach at the moment. Bread, flora and peanut butter, with pringles, yum. Mum comes back from the groceries each time with a plethora of food I just won’t eat. Anyway she is practising the blood thinning injection on the oranges, she is more squeamish than me but I refuse to put a needle in my stomach. Chemo gives you a horrible metallic taste in your mouth, and nothing will get rid of it. Water is horrible, sprite is better. I am constantly constipated, and often wake up in the middle of the night with what feels like jagged boulders moving through my intestines. The more painkillers you take the more bonged up you get. Everything has a side effect.

I do manage to venture out for an hour each day even though light and noise agitates my headaches. It never ceases to amaze me how different people treat you when you are in a wheelchair. They give you that sympathetic smile, bow down with one knee gracefully as if you were royalty, and when you sneak up behind them they become hysterical and apologetic even though they have nothing to be sorry for. Of course I can still stand up and that, but it is always entertaining when you go into a café and they move all the chairs, tables and prams out of the way only to get the table and then stand up and take a seat. Kudos for my Mum and Dad for pushing me around!

My mum is the best nurse anyone could ever possibly want. She flew over the moment I was admitted to hospital and has been with me every single moment since. When I am thirsty, she whips up a smoothie, when I have a fever she has a cold towel ready, when I need new tights she goes into the nurses storage room and nags a pair! It is a big change for her, running a successful business to now looking after me, and I know she is finding it hard but I don’t think I could go through it all without her by my side. I had originally planned on completing the treatment here in Sydney but I have now decided to head home after my third cycle in mid December. For my Mum and me, we both need to be at home for Christmas. My darling Shaun who has been my rock throughout will join me once treatment is finished.

I guess it would be fair to say I am quite depressed at the moment. Even when you are surrounded by ones you love and when the probability of cure is high, it’s still hard not to feel utterly shit. It has been a massive life changer, three weeks ago my biggest daily decision was which beach would I go and spend a few hours on before hitting the gym, to now where I am having to make decisions about my treatment, my visa and my studies. I do miss normal life and how simple it was, right now everything seems like a massive hurdle and it is hard to see the ‘light’. I get easily frustrated, I don’t like talking to people, even to Shaun, it is all very difficult. I am worried because I have only had one cycle of chemo, and have three more to go. I feel like a ball of dead cabbage which just takes life out of any room it enters. I hate seeing myself in the mirror. As I said before, I can’t dream, I don’t even have emotion. I haven’t cried in since my diagnosis. I haven’t even listened to a Madonna song in over two weeks, that’s how much chemo has destroyed me.

I am hoping my mind will settle as it has been a crazy couple of weeks and will take some time for everything to digest. Some good news, the tumour marker has already started going down after the first week which is in relation to the main tumour in the abdomen. However, I was readmitted to hospital a few days ago due to very severe headaches. These headaches are like nothing I have experienced before, constantly there and no pain killer is managing to ro bring some relief of pain.  The doctors are still not sure what the cause is, but a range of scans planned for the next few days will reveal whether or not the cancer has spread to the brain or if there are blood clots. Hopefully neither!

On that perhaps not so positive note I would just like to thank everyone for their messages of support, they all put a smile on my face! I’ll reply to them all once I am feeling more ‘active’ J

The week I got testicular cancer

Never one to write a blog but recent events during the craziest week of my life have propelled me to do so for two main reasons; as a form of therapy for myself and as a way of informing friends and family of what exactly has gone on during this whirlwind of a week. I do apologise in advance for any grammatical/spelling errors as I will be typing this dosed up on a multitude of drugs.

Well it all began two weeks ago on Monday the 7^th October when I started experiencing pretty painful lower back pain. That persisted throughout the week when on Thursday I could no longer work due to not being able to walk more than a few meters. It was consistent, sharp pain that was progressively getting worse. I went to see a doctor, physio and a chiropractor over the next few days, all agreed that I must have torn tissue in my lower back. By this stage however, my legs were swelling up majorly and no one could tell if this was connected to the lower back or not.

Exactly one week on from when I had first started noticing back pain (Monday 14^TH) I had effectively became confined to the bed, unable to even go to the bathroom. This is when it first hit me that something else was going on and so was off to St. Vincent’s hospital. Again they could not make a connection between the legs and back, but did think my legs might have blood clots. However, I was sent home without any tests done. Feeling frustrated, I went to ER in the Prince of Wales hospital where an ultrasound scan immediately revealed big blood clots in both legs. They instantly gave me blood thinning injections and kept me overnight, which at the time I was quite excited to be staying overnight at a hospital! At this stage, I thought the worst outcome would be Deep Vein Thrombosis (DVT).

It quickly became apparent that there was something more serious occurring as the Ultrasound on the Tuesday revealed a relatively large tumour in the abdomen. It was too early to say what this mass consisted of but I was quite taken back by it. Cancer obviously was the first thought to come into my head. The tumour itself was in an awkward position surrounded by the kidneys and liver but more importantly was squashing the main vein which drains the blood from the legs, hence the blood clots and swelling. A phone call to my mum and minutes later she had flights booked that evening from Dublin to Sydney. Knowing my mum would be by my side in a couple of days was very comforting.

Over the next 24hours I was sent for many scans and tests, each of which revealed more and more of what was going on. Having an ultrasound  on the testicles with the wet gel was very strange and not sexy at all. The rest of the scans mainly involved me entering a futuristic machine into a tight hole and then have magnets and beams swirling around, very uncomfortable when you have an itchy nose.

Wednesday morning, I was told that it was highly likely that I had a really rare cancer called Sarcoma and after meeting with surgeons would need a pretty big operation to remove the tumour. A biopsy was not possible due to the risk of puncturing the vein. This is when I broke down and was quite a mess. From back pain to cancer in three days was quite a lot to take in and my head was rolling all over the place.  Also the fact I am in a hospital 17,000k from home with no family does make you feel quite lonely. Luckily my Shaun was there as he always was from the beginning giving me nothing but support and ‘positivity’. I hate that word positivity.

Thursday was another whirlwind of a day. I had met surgeons and doctors from nearly every department from vascular to urology to neurosurgeons, everybody was trying to understand what exactly was going on. I was still getting my head around the revelations from the day before when I was told they wanted to rule out Testicular cancer by doing an ultrasound scan. That of course revealed a growth on my right testicle. So all over again, surgeons and about a dozen doctors came down to explain what was now going to happen. They said it was ‘good news’ and that it was likely to be Testicular cancer and not Sarcoma due to the higher cure rate with the former. I wouldn’t normally take being told you have one type of cancer instead of another as good news, but in this case it did seem like I had the ‘better’ one. Surgery was to be performed the next morning to remove the right testicle. Obviously being a man, having one of your testicles taken out is not ideal in any aspect, but I knew it needed to be done and the American doctor Martin kindly added I can have a bigger one implanted later.

 That evening I managed to get out of hospital and go to the airport with Shaun and pick up my mum. She had said she would always get to Sydney when she had the time, and although it was unfortunate she came in these circumstances, I was so happy to finally have her here. Since she has come though all I have wanted to do is show her how fabulous Sydney beyond the not so glamorous walls of the Prince of Wales.

Friday morning and after fasting for 15 hours with no water or food I was getting incredibly cranky. The guys in theatre were lovely, and I was quickly put in a fantastic mood when they gave me ‘mdma’ like drugs, I felt like I was about to hit a dance festival not about to have one of my treasured balls pulled out. Took a while to come around from surgery but the pain was not too bad. The real pain came when I was in the surgical ward and a guy was put in the bed next to me awaiting his surgery for his bleeding toenail from an injury at the gym. His loud voice was THE most irritating sound I have ever experienced, not to mention his snoring.

The weekend consisted mainly of rest time from surgery. It was the first time since being admitted that I got to actually digest all that had happened in the past week. Of course the why me questions kept running through my head, was it karma for all the little shitty things I have done? Then the ‘what if’ I don’t pull through thoughts kept pounding my head. Support from Mum and Shaun and the many friends who came to cheer me up reassured me that it will take time, but I will get through this.

Now the next stage of treatment was chemo but before we could get started I needed to put away some frozen sperm as there is a high risk of infertility after going through chemo. At first I thought the doctors would insert something and extract sperm out or like that scene from ‘Dude where’s my car’, but it quickly became apparent that I would have to do it the old fashioned way. Easier said than done, I was missing a testicle, still recovering from an operation and ‘sex’ had never been further from my mind. Anyway after a couple of long hard hours, they got the amount they needed. So any lipstick blonde lesbians out there looking for some fine sperm, hit me up.

So here I am about to start chemo (Dad arrives just in time tomorrow). I am worried about getting sick, I am worried about losing my hair, I am worried about permanent erection problems, I am worried that it might not work. I’ll have all these worries throughout the 12 weeks. My life has changed immensely in the past two weeks. That common conception that people lose weight in hospital is total bollox, I have put on 4kg so far! On a more serious note, I can’t go anywhere without being pushed in a wheelchair, I have to urinate in a pot, my Europe trip with Shaun will now have to be put on hold, my hope to study my Masters in February will also have to be put on hold. Visa issues are another headache too. Still not sure as to whether or not I’ll have the entire treatment here in Sydney or go back to Ireland at Christmas to finish the last couple of cycles (I do miss immensely my little brother and sisters). This isn’t something every guy at the tender age of 23 will go through, and is going to be a messy year ahead and will be a long time before everything is back to normal but this is the situation and I’ll just have to power through it. It’s going to be hard, I will get sick, I will feel like shit, I will feel grumpy, I may even be bald, but I know this treatment is absolutely key to getting this bastard out of me and with the support of friends and family I know I’ll be back to my old jolly self in no time.