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.

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