Posted on April 29, 2016
It’s TOMORROW. OMG, I am going overseas, through those international gates, bound for sunnier climes….TOMORROW!
This is the trip I am going on, one that many of you helped to make possible:
Looks, pretty hard to take, no? I wish I could take you all with me.
The “mental landscape” under which I was going to take this trip was meant to be so much different. I thought that we would have confirmed that my SIRT treatment was working, and my lungs would be done and I would be going over there on top of the world. However, things have changed, and I can’t deny them. Yes, I am getting the radiation done when I get back, but realistically, I am feeling deterioration in my liver at quite an alarming rate, and I think we are going to have to take a careful look at that before radiation is commenced, to see if it is even “safe” for me to stay off chemo for four or so weeks clear of the rads. I have new pain, in a new part of my liver, and I dunno, I don’t think “new” when it comes to cancer is ever a good thing. BUT, having said that, I have a very large hernia from having so much stomach surgery. It is approximately the size of a watermelon, but in the last few days it has got bigger again. It used to go from the bottom of my stomach to my waist but in the last week or two it has grown a few more inches and now finishes just below my rib cage. And what is under my rib cage? That’s right folks, my LIVER. I can feel now that the hernia is pushing my liver out of it’s space, so to speak. I can feel it physically pushing out the side of my waist, there is an actual lump there now. This new pain, well, it’s basically like having Croc Dundee’s knife driven into the area directly underneath my right boob, several times a day. It makes me sit up pretty fast, believe me. It only lasts a few seconds, and a change of position will relieve it straight away. It is almost certainly nerve impingement and so it doesn’t take a rocket scientist to work out that “Clarice”, as my friend Sam recently named the hernia baby, is pushing my liver upwards, and there might be no other reason for this pain than that. Enough boring you with all the medical details, I guess I am just trying to explain why my brain is a shitstorm all the time…because I don’t KNOW! For the time being, I have decided not to worry, it will change nothing, and I like the radiation oncologists attitude to the situation, “one step at a time, as things come up, we will deal with them”. He’s so soothing.
So, what of the beautiful gift that you have given me with this holiday to Thailand? You are probably going to think I sound like a real twit here, but I actually had to have a counselling session with the psych to deal with my guilt that I get to do this wonderful thing through the generosity of others, and other people don’t. She re-assured me that this guilt was normal, which felt good, but of course she also said I need to absolve myself of it, as it is unjustified. I can honestly say now that I have let go of this, and I can also honestly say that I am incredibly glad it happened. What you have all done, and I am talking all of you, whether you chucked a bit into the fundraising account, or you just supported the idea of me going, or you have liked and shared my excitement as everything started to come in, the passport, the tickets booked, the itinerary. What you have done is (I don’t know any other way to put this) given me permission to be selfish. Because I can tell you that I am far from perfect, I’m human, I’m flawed, I’ve got a list of faults as long as your arm, but I’m not selfish. In the last two and a half years, there has not been one decision that I have made that doesn’t consider my family, and the impact it has on them. At no point have I come home to Gaz and said fuck you Jack, I’m dying, I’m going to do this, buy that etc and you are just going to have to put up with it. Actually, that is not entirely true…when I was leaving to go and get my first big piece of ink, Gazbo said “you know I’m not a big fan of tattoo’s on Sheila’s, don’t you?” And I said fuck you Jack, I’m dying, if I want a bloody big arse tattoo, I’m getting one. And he, quite sensibly said, “no worries love, see you tonight”. 😛
So no, in all honesty, as much as I would have wanted to, I wouldn’t have gone on this trip. Whatever funds are available must be spent on having experiences with my family. I wouldn’t want it any other way. Also, at the moment we are starting to investigate clinical trials that are only available in other countries, and if it is possible to get on them, the costs will run into the hundreds of thousands. It will mean selling our home, and everything else we own, but if they are positive enough, then we are prepared to do that. Gaz said that he would happily live in a tent for the rest of his life if it meant they could have me, and I feel pretty much the same. I love this home that we have made together, but what does it mean if I am not at the heart of it? Big decisions have to be made about this big stuff pretty soon, and solo holidays to Thailand simply couldn’t have come into the equation.
There is a feeling that evokes each time I think about walking through those departure gates tomorrow. A kind of freedom that I thought I would never know again. Because, you see, I am not taking cancer to Thailand. I’m taking half a suitcase of colostomy supplies and opiate medication, there will be reminders of what always lives in me now, but cancer is not coming. For the first time in 2.5 years, for one beautiful, glorious, joyful week, I will be something I dreamed of – I will be, Just Julia. There will never be enough words to say thank you for that.
I am going to close here with what is probably going to sound a bit like justifying myself, and my mates are going to pm me and tell me off for it and tell me I don’t have to do it, which I don’t of course, but you know me, always throwing it out there. So, here’s the thing. Gaz wants me to go on this holiday. He is worried about some things, for sure. Worried I will have a nightmare like I did the other night where I was trapped in a coffin and I couldn’t move, and woke up screaming, and he won’t be there to hold me all night. Worried about how much he will miss me, and me him (we were having a snuggle last night, and he kept saying over and over “seven days. SEVEN! We’re sooks, we’ve never been apart anything like that long in 16 years). Worried that I will get sick, or in pain, or be scared. Worried that I will get a case of Thai belly and my bag might burst in the middle of the night and he won’t be able to jump up and start the shower and tell me that everything will be ok. What he is NOT is resentful, jealous, pissed off, put upon by having to look after his own children for a week. He’s got plenty of support, from family, from friends, from people that want me to enjoy this holiday and are happy to support him in any way he needs to make this happen. We have all got our “things”..I like to go on holidays, and he likes to play golf. Every Saturday he plays golf, he tells me that it is the only time that he doesn’t think about my cancer, about what has happened to our lovely lives. If you asked him if he would rather play golf every weekend, or have a week in Thailand, I can guarantee you the golf would win out. The reason I say this is because every now and then, someone says “poor Gaz”. I can never work out if they are serious or not, whether they think I just follow my own agenda and leave his emotional carnage in my wake. Nothing could be further from the truth, I always think of the impact that my cancer has on him. And remember, for a year in 2012, HE was the one who had cancer, and I cared for him. So, I have a rather unique perspective of what it’s like to be on the other side. He rather enjoys the company of his own children, and I picture a week of movie nights on the big screen, watching motorbike racing with Dakota, and playing games on the x-box. Despite the obvious sadness that goes with what we are going through, I can assure you that there is no “poor Gaz”. Nuff said.
Here I am, Just Julia. Excitement level – fever pitch. See ya on the other side