Posted on May 19, 2016
Since radiation started last week, I sleep ALL THE TIME. I am for the most part getting people to drive me to the Alfred for my appointments and yesterday when I did the bulk of the driving myself I know that I won’t be able to drive there myself any more, as I was so fatigued on the way home it frightened me. Only five more sessions – five more times of asking people to go seriously out of their way to take me. I have such a wonderful support network, but gosh, am I wearying of asking for help all the time. Knowing I will never get my full independence back, well, it hurts.
I know, though, that I just have to suck it up, and am in the process of asking for all the help I can get, with Georgia especially. Referrals are going in here and there, and help is on the way. She is the most adorable scallywag at the moment, she is 8, but like 2 I guess, and now she is all about the house (which is exactly what we wanted), destroying everything in her wake. If you are cooking, you can always count on her being at your side, pulling all the pots and pans down from the shelves next to you! At 8 years old, she needs someones eyes on her basically all the time – I’m childproofing the house as I go along. It’s been a long time since I had to do this!
Before we went to Thailand, the organisers of the trip, Lea and Geoff from Hello Me (you can find them on facebook and lots of pics of our trip if you would like a look) conference called me to see what they could do to make the trip easier for me. It was so lovely of them, but I was all like no, no, I am fine, I can do everything myself. I was so bloody determined that just one more time I would feel what it was like to be totally independent, to hop on and off planes like a pro – like I used to! I was fucked right from Melbourne airport. I missed the plane by a few minutes (my fault, not blaming anyone else). The staff of the airline were quite unpleasant to me, and I totally lost my shit, and was sobbing by 6.30am. It really didn’t bode well. I bought a ticket for the next flight and checked in my luggage. This was a no frills airline and I had to put my luggage on the scales myself lol, who would have thought 15 kilos could be so heavy! Then when I collected my luggage in Sydney, I had to take it from the domestic terminal to the international one, which was about 6 kilometres away on a bus! I thought any weight in a suitcase on wheels would be doable, but it was exhausting pulling this fucker around with two pieces of hand luggage! When I got to the international terminal, I went and changed my clothes and put on more make up and tried to pull myself together, though at this stage I was completely fucking enraged, with myself, with cancer, with all that I had lost. I got in mobile contact with one of the women I was travelling with and she told me what check in counter to head for. When I got out of the lift I found that this was the last check in counter and I just couldn’t do it. I stopped halfway there, dragging this big load of bricks and rang this girl back, who came and rescued me with the case. When we got to the check in queue it was HUNDREDS of people long. Remembering that I have two hip replacements as well as terminal cancer, this was the time to play the “cancer card” if there ever was one and try and expedite myself to the front of the queue. But NO. Not silly old me, I stood in it for an hour and a half like everyone else, and I was in so much agony at the end, sweat pouring out of me from the effort of trying to deal with the pain (liver stabs and hips burning). I found a couple of the girls again and swallowed a heap of opiates and cried in pain, which is something I rarely do. Frustration yes, pain, no, not usually. We went through customs, and then realised the walk to the gate was really going to be too much for me, so I allowed one of the girls to get me a wheelchair. I can’t imagine how high maintenance they thought I was going to be at that stage, I am sure the other 10 girls thought there goes our relaxing holiday, gonna be fun dealing with this one! And that was exactly what I DESPERATELY DIDN’T WANT. So I got even more upset. The 10 hours on the plane was challenging to say the least (it deserves a blog post of it’s own), and then we touched down in Thailand’s incredible humidity at what would have been well after midnight Aussie time, and I had been up since 4am. I am not sure, but I think I might have SNAPPED at poor Geoff, who is an absolute saint and gorgeous man – it would have been just brief if it happened, but I remember thinking to myself fuck I wish I had not come on this holiday, I was absolutely beside myself at this point. If the prospect of another 10 hours on a plane hadn’t been going to tip me over the edge, then I think I would have just turned straight around.
Thankfully, as soon as we got in the bus on the way to the resort, I rallied, and I think that everyone will agree that I was a normal person’ish for the rest of the holiday and didn’t cause anyone any grief whatsoever. But there is a moral to this story. If you are in a position like mine, then no matter how much it hurts, you MUST let people help. Lea and Geoff weren’t having any of my bullshit on the way home and organised assistance for me (and gave it to me themselves by accompanying me personally on all parts of the trip home as far as Sydney) for every point in the journey. As soon as we got to Phuket airport there was a wheelchair for me, and this man took me through customs, immigration, filled out the boarding card for me, and wheeled me all the way to the plane. I didn’t even have to get up to go through the body scanner, this lady just came and gave me a sort of pat down in the wheelchair. The flight home was heaven, as they had managed to get me a seat with no one next to me and I could stretch out a bit. Then at Sydney, there was another wheelchair, all the way to the bus to the domestic terminal, and Lea and Geoff took me there and waited with me until their flight home left. I was given a full row of seats again, at the front of the plane, and when we landed in Melbourne I was met again by another wheelchair. As it turned out, this terminal was right down the end (geez, i can pick ’em), and it would have been, without a word of a lie, about a kilometre to where Gaz and the kids were waiting. The trip home could not have been more different to the trip there, but I had to let go of something that was very important to me. My independence, or at last the illusion that I have much anymore. I had a cry to Geoff at Phuket Airport about it – realising how much easier accepting help made my “journey” in more ways than one, but how incredibly hard it was to NEED help. I just want to be like everyone else again – so much. But those days are gone forever, and it’s just another thing I have to let go of.
I am so tired at the moment that I cried to Gaz last night that maybe this is the beginning of the end. Who can sleep this much? But this was already happening to a smaller degree when the SIRT was working and my liver function was perfect, so it is probably premature to be worrying that I am in liver failure and about to die. When you are so tired it is difficult to get some perspective on anything to be honest. And I am not in any pain at all, just mind and bone numbing fatigue. This morning I forced myself to the supermarket after the school run to get a few days worth of food for easy evening meals and I am going to attempt a cook up today. If I manage it, it will be the most exciting thing that has happened to me all week, because it will mean I have been awake for a few straight hours! I hope some of this wears off after radiation finishes. I do remember it did after my bowel radiation finished, and I have been told that this targeted radiation I am getting at the moment is 11 times the strength of that.
Some Thailand pics at least! My friend Dani came over from her home in Singapore, where she is doing the expat thing, to stay with me for two days, it was the BEST!
She bought me new bathers, and heaps of new kaftany type things, she spoiled me rotten to be honest! Rack alert!
On the way to Phi Phi Island with all the girls:
Ya think I didn’t love this pool bar sick? Me and my mate Mrs Woog, hamming it up:
It might surprise you to know only one of these is a woman! Geoff and I at the ladyboys show:
Our very own Ketut:
Mrs Woog and I, being sausages, and having a read of each others books. Such a fun photo shoot, that was! Mucho grinning:
Thanks for staying awake with me all that time! I’m off to cook!