My cancer diary – part 5

This week she brings us up to speed on the preparations for her proton radiation treatment.

Well I can’t believe it’s been about two weeks since my last update, but I finally have some news to share after quite an eventful week.

Better than a Botox Barbie
Who needs botox when you can have cortisone? That’s what I want to know.

I feel a bit like that little puffer fish in Finding Nemo who puffs up every time he gets upset. For me I feel permanently puffed up, but when it gets hot I do seem to go the extra mile (you know me).

The bottom line is I now permanently have a big round face! Of course the good news is that I have no wrinkles and my skin feels all lovely and firm (if a bit taut on super hot days). Maybe this is what it feels like when you have a facelift.

I just hope that when I go back to normal size I don’t look like one of those ancient women who are super-wrinkly.

Seriously though, the cortisone that I’ve been on for seven weeks now is beginning to take its toll as the well-known side effects kick in. I have a super swollen face, an occasional “waddle” (Ally McBeal fans may remember what a waddle is? This bit of skin under your chin? Except mine is all puffed up) and hardly any thigh or arm muscles to speak of. Lovely stuff all round – not!

But it is forcing me to go to the gym (mom and I try and go at 5.30 in the morning while it’s still cool) to try and build up some muscle again and help me navigate the school steps.

Headaches vs side effects
Unfortunately, the headaches are coming back a bit and we spoke to the doc and we’re at the point where we have to balance the side effects of increasing the cortisone (not good) with the pain of the headaches. So, for now, it’s back to popping some painkillers to keep them at bay.

Which reminds me, I asked my GP to write me a script for the very nice painkillers that I was given in hospital. When I told him what they were he said “Oooh… that’s like one down from morphine so I can’t give you that”. No wonder I liked them so much. But at least he’s given me something that works better than Panado.

Return of the mummy
The Friday before last we went to Tygerberg hospital so I could have a plaster cast made of my head which they will, in turn, use to make a plastic moulded mask for the proton radiation thing for my head.

After eventually finding Tygerberg hospital and the particular building we had to be in, the moulding man wrapped some cling film around the back of my hair to protect it from the plaster of Paris and then plastered wet strips of plaster against the back of my head. Then we had to do the front. So the moulding man's assistant smeared me with some oil and then they did the front bit, just leaving my nose free.

Before they covered my mouth, I managed to ask what sort of oil they were putting on, because it sure didn’t smell like Clinique. Not that I was expecting that, but I thought at least some grapeseed oil or something. “It’s sunflower oil” came back the reply. Well that gave me (and the 10 students standing around as it is a teaching hospital after all) a good laugh!

The wet drippy stuff was only on for a few minutes when it had dried sufficiently to take it off. Of course, as I was popping in to work later that day, I’d even put some make up on for the occasion which got completely oiled, plastered and rinsed off!

In the hot seat
On Wednesday last week we had to go out to Ithemba Labs in Faure where the head radiation treatment takes place. The idea was that they would have made the plastic mask by then which has little metal markers built in. I was to fit the mask and go for a head CT scan where they get to map the inside of my head (and exactly where the tumour is) to the outside markers to give them reference points when doing the proton radiation therapy.

Well, it was particularly hot on Wednesday and my already swollen moonface was even more swollen than usual! We tried the mask on and it was a bit of a tight fit around the cheeks and didn't really fit too fabulously on my forehead. So Professor Vinneman decided that we needed to try and make another type of mask that uses your palate as a reference point and you don’t have to worry if your face gets bigger (or smaller) when you do the treatment.

Who knows what size my face will be on the day they do it? I was rather pleased that we had another option to explore. The plastic mask also looks a bit Hannibal Lector-ish.

Another Eskom spanner in the works
Unfortunately, before we managed to do that, they were called into a management meeting about the Eskom load shedding to which they have also been subject (and they draw so much electricity for their whole facility they actually have a substation outside), and their senior management have decided that they can’t open their facility until they get some guarantees from our friends at Eskom that they will not be affected by the load shedding.

Oi Vey! They do all sorts of amazing stuff there, including making medical diagnostic materials/treatments and the the proton beam thing that I need is just one of the things that they do.

Prof V seems reasonably confident that it will get sorted out in time, but needless to say, this bit of info was a bit of a shocker for us at first. But then, as Andre reminded me on our way home, we’ve just got to pray about it (although a dear friend of mine later commented that she was sure it would be easier for God to just make the tumour just go away than to get Eskom to get their act together!)

The long and short of it was that I didn’t have the head CT done because we now need to see what’s going to happen. They were doing this plotting and planning WAY in advance because they were only going to switch on the (newly maintained) cyclotron (that produces the proton beams) on 11 Feb so we have some time for them to get sorted out.

Prof V says that we can always do the photon therapy, but that’s the one that fries the bits of brain it has to pass through to get to the tumour rather than being directed at the tumour, so it’s not ideal. But as always, I’m sure it will all be fine in the end – especially when all of you start praying.

The three ugly sisters
I now know why doctors don’t really like giving patients copies of their full medical reports because clearly they’re open to misinterpretation.

Turns out the three ugly sisters I told you about are not really that big in actual size, that was just the size of the “hot spot” on the PET scan - in other words how much cell activity was going on. They’re actually quite small and trapped in some lymph nodes that are wrapped around my windpipe.

On Friday I went for a chest CT scan so they could pinpoint them exactly and this week they’re going to be plotting and planning the chest radiation - I’m expecting to start next Monday or so. I have to start my chemo at the same time and have received my chemo (and anti-nausea tabs and am ready to rock and roll).

The radiation will apparently take 15 minutes a day and I’ll have to go for 10 days (excluding weekends) and then of course the chemo lasts for 6 monthly cycles – 1 week on and 3 weeks off.

I’m really pleased that we’re making progress and about to get started with the various treatments.

At home
Andre, my mom and the girls are doing well and we’ve had wonderful support from all of you and also particularly from the girls’ school. Courtney came home the other day saying that all the girls were asking her if her mom had cancer and if she was worried. Her reply… “yes my mom does have cancer, but I’m not worried because God is in control”. Out of the mouths of babes!

We did ask the school counselor, Anne Cawood, to chat with the girls individually which she did last week, and she’ll continue to see them on a weekly basis just so they can have a safe space to talk about anything that might be worrying them that they don’t necessarily want to ask us about. Please continue to keep us in your thoughts and prayers.

I have to admit to being a teeny bit concerned about the side effects that I may or may not have next week -mainly because I’m a really big baby when it comes to feeling yuck and a terrible patient! But I’ve got great care all round and know that my mom will just bully us all into submission if I don’t take it easy!

Lots and lots of love and thanks to you all.
Me

(Lynn Ferreira, 28 January, 2008)

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Read more:
My cancer diary - part 1
My cancer diary - part 2
My cancer diary - part 3
My cancer diary - part 4
My cancer diary - part 5
My cancer diary - part 6
My cancer diary - part 7
My cancer diary - part 8
My cancer diary - part 9
My cancer diary - part 10
My cancer diary - part 11
My cancer diary - part 12
My cancer diary - part 13
My cancer diary - part 14
My cancer diary - part 15