Day 35: Exhausted (Friday 2 December)

After SPDT this morning I was completely spent, and I mean, completely. I was supposed to go straight from SPDT to HiFU but I couldn’t manage it. I went back to my room, got hooked up to my infusions and slept. And slept, and slept. I can’t believe how completely exhausted I was even though I slept through last night (though I did sweat through my nightclothes again).

During the afternoon they tried to coax me to go to HiFU a couple of times but I could not muster the energy to open my eyes let alone be pelted and drained by the HiFU machine. I just couldn’t do it. So, sometime close to 5pm I exited stage left and went back to the hotel and retreated to the couch.

We went out for dinner and tried our luck at a place we hadn’t been to before, in a street we hadn’t eaten in before. Risky business! We have developed our own system of naming the streets in the local area and tonight we went to ‘restaurant’ street. Other monikers we’ve allocated to local streets include Coca-Cola street, dry-cleaning street and school street – all for reasons which are self-evident.

Our foray into restaurant street was very productive. We (I) over-ordered but in my defence I was ordering for three instead of two. We got an ample selection of veges and rice as well as some duck and spicy chicken. Nom nom nom. The leftovers were enough to feed another two or three people but we decided against asking for a doggy bag 🙂 The total damage was AUD$20 so no complaints with the price tag either.

I just can’t believe how tired I am and how my energy levels are not bouncing back after each day of treatment. SPDT didn’t seem to take it out of me in the beginning like it does now – I don’t know what that’s about. I feel like I am on a sort of treatment overload and really need a break. If there’s a bunch of dead tumours inside me then my body will need to absorb and or expel the dead tissue and presumably that requires energy. I feel like I need ‘breathing space’ from treatment to do that. On the other hand, if this is my one shot in the locker then maybe I should just be ploughing ahead no matter what. No one seems to be able to tell me what the impact of having a break from treatment might be, whether for a week off or a month. I just hope that I get some clarity next week after I have my first set of progress scans.

Danielle sent me a link that gave me a good laugh today – I definitely think there’s something in this research! You be the judge: “Limited swearing helps pain relief.”

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Day 34: Liver tumour? (Thursday 1 December)

Another ho-hum day.

Mum arrived last night and she’s already taken the first load of washing to do – woo hoo! Not to mention bringing a suitcase full of stuff that I asked for (as well as just a few things that I didn’t). So now at least Brad has some Mad Men DVDs to keep him occupied (I’m busy waiting for Series 5 to come out), we have a good supply of Cheezels, salt and vinegar chips and Tim Tams (obviously only to be eaten in moderation since none of that is exactly food that’s good for combatting cancer!) and there’s prunes, almonds, fruitcake, supplies from the chemist and so on – all things to help us feel just a little bit more human.

A few other treats came in mum’s suitcase. I received a really lovely hand-made scarf from our long-time family friend Vera. It has just the touch of colour that I need to help brighten me up – thank you thank you thank you. We also got the most excellent invitation to my brother Glenn and his fiancée Linda’s wedding. The two will be wed in Las Vegas next year and the invitation has come out as a poker chip – I love it!!! Nice work indeed.

Liver metastasis?

This morning I had an ultrasound first up to check on the status of my gallstone. It is the same size as it has been for ages (at least a year or more) so nothing too interesting there. I didn’t find out anything else from the scan – maybe the doctors did, but they didn’t share anything with me. The radiologist doing the scan murmured something about a tumour in my liver – now there’s an interesting question. After various ultrasounds, plus the CT and PET that were done in Perth, no one to date has been able to tell me whether I actually have a tumour in my liver or not. The best information I have received is that there is a kidney tumour adjacent to and possibly abutting the liver, although it may actually be a tumour in the liver but they can’t tell. Very frustrating indeed. I would like to know whether I have another organ going down the gurgler or not. I impressed upon Allison and the doctors to pin down the radiologist as to what he actually saw on the screen but there were no definitive answers forthcoming.

I was sore all day – tight and uncomfortable – an obvious hangover from the HiFU from yesterday. I had SPDT then really spiralled downwards. I got a fever after SPDT and sweated through the infusions of DCT, KLT and the others. I did manage to sleep through a lot of the afternoon which was something, at least. Although we didn’t get back to the hotel til seven I was relatively well rested. We had a basic meal in the hotel of braised beef, rice and green veges because it was just too cold to venture out.

Day 33: Sleep deprived (Wednesday 30 November)

Yes, I am behind again. My energy levels are waning on a daily basis and every day there’s a new challenge to overcome. Everything here seems to be getting harder and I have no way of knowing if any of the treatments are helping at all. I can still feel the tumours in my abdomen from the outside, but again, no way of knowing if they are enlarged and inflamed as part of the treatment process or if they’re getting bigger or what’s going on.

Last night was a bitch. With a capital B. I did not sleep a single wink all night. I took different drugs every two hours because I didn’t know what else to do to give me some relief. Oddly though, it wasn’t too hard to get through today. It was actually quite a peaceful day. I even had what I called the ‘perfect’ SPDT session. That is, no sweating on the PDT bed, no vomiting, no burning from the sensors in the SDT bath, no chill etc. Amazing. The afternoon was spent hooked up on infusions in the room and as much as I tried to sleep I just couldn’t. You’d think I would’ve been out like a light!

I went to HiFU in the afternoon and the doctors limited the lasers to half an hour today – an hour just zonks me out too much. They seemed to take the view that I should have shorter HiFU sessions but more often. We’ll see if that pans out.

Allison kindly sourced me some lunch from the basement cafeteria to bring up to the room so I could stay hooked up. She asked what I wanted and I said anything that is in keeping with the gallstone diet. Ha! That was tricky. We have a bit of a running gag going on here and when the doctors tell me to ‘eat light’ I laugh. I have not come across any meal here, vegetarian or otherwise, that isn’t laden with fat and oil. When Allison returned from the restaurant she reluctantly admitted that I was right, and that it was more difficult than she realised to find ‘healthy’ food in the hospital restaurant (let’s not even touch on the hospital supermarket.) So, I got buckwheat noodles in some broth (still with plenty of oil in it) and some mixed veges with sprouted soya beans. Quite tasty.

We got back to the hotel about 530pm and it was still daylight which was very odd. I am not used to being in the hotel in daylight hours other than when I’m leaving in the mornings. There we rested and relaxed. I zoned in and out.

Grapefruit correction

In past posts I have mentioned the giant, super-sweet grapefruits that I have discovered here. As it turns out, they are not grapefruit at all. I bought one from the hospital supermarket on the way home tonight and the packaging (everything is packaged here) declared that the fruit is actually a honey pomelo. Makes sense. I attempted to crack the pomelo to have an afternoon snack but I couldn’t do it unaided. The skin and pith are so thick that I needed a knife and some brute strength to lever the skin away. It was so big that we barely ate a third of it between us – these things can feed whole families! I highly recommend getting your hands on one.

Discomfort

Since having HiFU today I have been feeling extremely tender around the right flank area. Not pain as such, but real discomfort. I am going to take a warm bath (perhaps within an hour given how long the water takes to heat up in the hotel) to try and soothe it then go to bed and try and finally get some sleep. Brad has ever so kindly got the taps running to get some warm water for me and get the bath ready. Lucky girl.

Mum arrives

Mum arrives late tonight so Brad the Superstar is going to brave the cold and go and meet her at the airport and bring her and her assortment of food products and laundry items back to the hotel.  I am SOOOOOO glad that I don’t have to go! Too cold. Too far. Too hard.

I really need to do something nice to thank Brad for his part in this ordeal that he’s patiently putting up with. But what? I can’t go out and buy him anything, I don’t have the wherewithal to take him anywhere, I can’t make him anything or cook him anything… I am trying to get better but that seems to be taking a while to deliver on… so any and all ideas are very welcome!