This morning I got an sms from one of my wonderful followers asking why I haven’t posted on my blog for a few days, they thought I’d fallen off the face of the earth. I thought that was so special. I’m so happy to hear that this blog is getting out there, it is so motivating.
I’m still here… I’m sorry for having been quiet lately; it’s been a tough few days. The chemoradiation treatment takes everything out of me… so much so that even posting on my blog has become an effort.
I had my fourth chemoradiation session this morning. I wish I could give you an inspiring speech about how it’s not that bad and how it’s so much easier than you think it is. The truth is… it is that bad and it is as, if not more difficult than you’d expect. People react very differently to chemoradiation so I can’t tell you what it’s like for everyone but I can tell you that, for me, it’s a horrible experience.
Last week, I had a catheter inserted into my arm which was supposed to stay there until I’ve completed the treatment course; it was a very uncomfortable experience. On the first night I managed to damage the catheter in my sleep and woke up in a pool of blood the next morning. Since then, we’ve tried moving it to my other arm, my neck and my chest…. my body refuses to have it! So, the unfortunate result is that they have to make a new hole and put in a new IV with each session… I look like a pin cushion and I’m pretty sure that anyone that gets a glimpse of my arms and hands is convinced I’m a junkie.
The worst thing about this treatment is, without a doubt, the nausea! For me, it’s pretty much instant. As soon as that fluid enters my bloodstream I am overwhelmed with nausea and it lasts for what feels like forever. I have formed a very close bond with the toilet lately, for the first few hours after my sessions, we are inseparable. It’s amazing how the body can still find something to throw out, even if you haven’t eaten for days. Fatigue is a very close second to nausea, sometimes I’m too tired to lift my head, I find it impossible to function and I often need help with small, mundane tasks. The funny thing is… no matter how tired I am, how severe the fatigue is, I’m never too tired to be nauseous and although I struggle to do almost anything else, my body always seems to find the energy to spend quality time with the loo.
I noticed a change in my hair for the first time today… I wasn’t looking forward to that moment. Although it’s not quite noticeable at this point, it’s definitely much more dry and brittle than it used to be. Although I haven’t noticed it falling out throughout the day, there are those undeniable clumps on my hair brush and in my hands when I wash my hair. They say this may be the worst of it. I may not lose all of my hair; I may just notice a change in its texture and thickness. I’m really hoping that’s the case. Although it’s the side effect most commonly associated with cancer treatment, it doesn’t happen to everyone and the intensity of it varies from patient to patient. Even though I’d rather I didn’t lose my hair, I am prepared for it, it seems like a rather small price to pay. Besides, who knows, maybe I’d be a hot baldy 🙂
I’ve had a few questions about whether my case is curable and exactly how bad it is…. I’ve been trying to avoid this one but I guess the prognosis will only make the victory that much sweeter, so here we go. Medically, no, this is not curable. My case is extremely advanced and, from what we can tell at this point, it is spreading rapidly. The treatment I am having at the moment is palliative – basically that means it’s supportive, to help me with pain and ease some of the symptoms. The doctors do not believe that there is any hope for me…. but that’s just because they don’t know me. I have been given a ‘time-frame’ but that’s my little secret. I don’t believe that there’s any point on discussing that because it’s not true. I will be sure to let you know when it’s lapsed though. I believe, with all of my heart, that I am going to beat this thing and although my medical team are amazing, they’ve got it wrong and there is hope for me… there has to be… I’m not ready yet, I’m not done yet. I will fight, no matter how bad it gets, no matter how painful it becomes, I will keep going and I will win. I am 27 years old, I’m not going to die now, I am most definitely not going to die like this.
I think I’m progressing relatively well in terms of how I’m dealing with this emotionally. On Saturday evening I cried about it in front of my friends for the first time. It felt good to let go a little but it was difficult to see the effect my tears had on them. It’s really not easy for me to be open about things that hurt me, usually, I reserve those outbursts for my husband or when I’m alone. There’s a first time for everything I suppose.
A huge part of dealing with this journey emotionally and coming to terms with where I am and what is happening to me was having my 9th tattoo this weekend. Although my mother is horrified, I am so happy with it. There is no feeling quite like being tattooed… I find it soothing (unless it’s on the ribs… I didn’t enjoy that one). It was an emotional one for me… the artist, who is also a very close friend, put together an amazingly special design for me and I had a lot of trouble holding back the tears when I saw the finished product. Each and every one of my tattoos has a meaning but this is the one I cherish most. This piece will remind me, every time I see it, that not only am I strong enough to get through this but also that as long as I take it one day at a time, I cannot be beaten. It is a tribute to the cancer fight and a symbol of all the amazing people on this journey. I didn’t do this for myself alone, this tattoo is also my way of showing support for those who are walking the cancer journey and honouring those who have lost the fight. Every time I look at it. It’s big, bold and very visible and I am absolutely 100% proud of it.
It was a very emotional session and I was quite exhausted once we were done (6 hours later). I reached my ‘emotional limit’ when my beautiful, amazing and unbelievably supportive friends, Heidi and Madri had the phrase, “Where Words Fails Music Speaks” tattooed onto them. That phrase has always meant the world to me because of my love of music and I’ve always thought it’s been a pretty accurate way of describing me. I had those words tattooed on my right foot a while ago and that’s always been one of my favourite pieces. Heidi also had a periwinkle ribbon tattooed on her ribs. I couldn’t find any words at that point and although I managed to keep my cool, I melted when I saw that. I still haven’t managed to think anything that I could say to either of them that would even come close to describing what that means and how that moment affected me. I tend to close off a bit when it comes to things like this.
I get rather frustrated with people’s comments when it comes to tattoos… for me; a tattoo is an expression of my creativity, my individuality and a map to my life. I don’t believe that having tattoos makes me any less favourable in God’s eyes, or that my tattoos mean that I am any less of a Christian. I don’t believe that my tattoos have any effect on my ability to run my business or enjoy success in my career. Having tattoos does not mean that my body is not my temple; it simply means that I have chosen to decorate my temple differently. I am not ‘rough’ or disrespectful because I wear my art on my body instead of hanging it on the walls and I am most certainly not evil or part of some ridiculous cult because I have chosen to display my creativity on my body. Being inked does not make me any less of a person than anyone else, if anything; it makes me more of an individual and I wear my ink with the greatest of pride.
I’ve never been very good at conforming to any specific stereotypes or ’boxes’ as I so affectionately call them. I’ve always done things in my own way and I can be horribly stubborn at the best of times. I’ve never been very good at taking orders or conforming to any standards that people may have set for me. I change my mind a lot and I’m completely unpredictable when it comes to how I handle things. That’s just who I am. I either couldn’t be bothered with what people think or I care too much, I can be as cold as ice (the proverbial Ice Queen) or the most loving and affectionate person you’ve ever known, I can hold a grudge forever in certain situations or forgive effortlessly in others… I have no idea how it works or why I was wired this way but what I can tell you is, I have always and always will do things in my own way. This may or may not be the ‘correct’ way of doing things but it works for me and my cancer journey is probably the strongest example of that. I can’t tell you how I’m going to feel from one day to the next and I may change my mind a million times but one thing is for sure… I will keep fighting, in my own way, on my own terms.
I understand that my appearance is deteriorating quite a bit and it’s starting to become quite noticeable that I’m sick. I know that’s concerning and I know it’s tough to see me like this. I saw my brother today for the first time in just over a week and, although he tried very hard not to show it, I could see the shock on his face. That is probably what I hate most about this journey, as hard as I try to convince everyone that I’m ok, my face seems to give me away. I know it’s difficult to see me this way and it’s even more difficult to pretend that you don’t see it… so don’t. Please don’t feel like you need to hide anything, or that you have to pretend that you can’t notice. You can see it, I can see it, and it’s okay to talk about it. I’d be pretty surprised if I didn’t look terrible, wouldn’t you? I have stage 4 metastatic gastric cancer…. I don’t expect to look like a supermodel! I don’t ever want you to be afraid to show how this is making you feel. You don’t have to be strong for me; you don’t have to wear the ‘brave mask’. We’re on this journey together and I understand that you’re walking too, I am fully aware that it affects you too and it’s hard, you’re allowed to feel that, and most importantly, you’re allowed to talk to me about it.
I’m doing my best to leave the ‘brave mask’ off as much as possible, I’m finally starting to understand the importance of allowing people in and talking about my feelings. I’m not very good at it yet, it’s really difficult to let my guard down but I think I’m getting there.
There are no rules in this game… there’s no instruction manual and there’s no normal. There is absolutely no right or wrong way of dealing with this and unfortunately we all just have to take it as it comes. Every step is a process and nothing comes easy but as long as we take it one day at a time, we’ll get there.
One Day At A Time