Not the news we wanted...

Hi everyone, Katie's dad here. Katie wants me to let you all know the results of her scans and what's happening at the moment.

The CT scan gave us some pretty devastating news. It turns out that the cancer has spread to her brain. They found four spots and it's these that are causing the problems with her arms and legs. They think that one of the lesions had a bleed and that's what caused the terrible headaches she started getting a couple of weeks ago. They also found that she's got another tumour in her right shoulder-blade, but that seems minor by comparison.

This situation means her last round of chemotherapy is cancelled and all focus is on dealing with the brain cancer. Today she's been in the radiotherapy suite for a planning session and to have a special mask made that will hold her head precisely in place for the radiotherapy. Tomorrow they'll give her a dose for her shoulder-blade, then the brain treatment will start on Thursday and go for ten sessions over the following few weeks. We've been told the brain radiotherapy should be very effective, and in fact she should start to see improvements pretty soon after it starts. She'll get back more use of her left arm and leg, but we won't know just how much until it happens.


Katie is really looking forward to getting out of hospital and that could happen in the next day or two with a bit of luck (she can do the radiotherapy as an outpatient). She's also looking forward to being able to write her blog herself.

Back to hospital

Hi all, Katie's secretary (=father) here.

Nothing particularly good to report, she's been very tired and struggling to find the right dosage of pain medications to be fairly pain-free but not intellect-free. We found her oncologist in the hall while at the hospital (having blood taken--Katie that is) and he gave us an ad hoc consult. It looks like she's going into hospital for a short stay so that some tests can be done quickly (as an outpatient it could take weeks). There'll be an MRI and a CT and probably some exotic drugs. As there's no firm diagnosis of the cause of her neuropathy they can't give a timeline for recovery but we should know more in a few days time.

Katie's current condition makes it hard for her to text so don't expect rapid or lengthy replies--if you want to talk, send her a text asking her to ring.

I think that's all for now, I'll post some more (under her instructions) soon.

Hi everyone, Katie's dad posting on her behalf, for reasons that will be explained.

With one week to go to her last round of chemo she started having severe pain in her right arm and shoulder. We were quite worried about this but as she had an appointment with her oncologist in a few days time Katie was very reluctant to go to a doctor. Then that night she woke and was having problems with her left arm--it was asleep, and wouldn't wake up. This continued with her left arm being numb and her not being able to tell where it is, while her right arm continues to be very painful. When we saw the doctor we found that this is a known possible side-effect of one of the chemo drugs so this was possibly the cause of the problem. The side-effect is neuropathy (ie nerve damage)--it's temporary but (as Katie says) quite inconvenient (I think that's an understatement). He ordered an immediate x-ray to rule out other causes  and said that the upcoming last round of chemo (which would now be delayed) would not be including the problematic drug. The x-ray was normal so it looks like it's the chemo drug.

This has been "very vexing--physical pain is one thing, but this is damaging my social life!" (her words). It's also affecting her on-line life as she can't type (hence I'm her amanuensis) She still made it to a baby shower and 1 hour of a farewell dinner (which she tells me she enjoyed, despite depending on her friends to cut up her food for her) before going home.

Unfortunately a few days later her legs joined the party (!) and were also extremely painful. She's now back on strong pain-killers (which she hates). The doctor tells us that this side-effect will pass but it's not a good time for her. It was her birthday the other day but we decided to postpone celebrations until she feels up to it but she says "Thanks to the friends that came and saw me on that day and everyone else who sent lovely birthday wishes".

There are some more tests coming up and chemo has been postponed. We'll try to keep the blog updated regularly to let everyone know what's happening.

I finally worked out how to do paragraphs with the new setup!

Just one more round to go. I'm so excited. Sort of. Its so strange, almost being done after such a long long long time. About this time in the round I'd usually be starting to get a bit anxious about the coming week of cytotoxic poison, but since its the last one for the moment I'm just thinking about what comes after.

Not that post treatment life wont be complicated. I wonder a lot about what kind of language I'll use to comunicate with people about it afterwards. There will no doubt be people saying things like "done forever" or "cured". Its awkward because obviously nothing is certain - far from it - but you also dont really want to go "well no, actually... maybe?". Especially since its not really my way to just nod my head and go along with it. I always feel more comfortable with people knowing. I also wonder about my eventual return to work, and then eventually my return to university. I'll meet new people and it'l come up that I've been away for a year/two years and they'll ask what I was doing. Of course i can just say something vague like taking a gap year from uni and working, or with work saying I was travelling (but then they'll ask where and blah blah), or I could say I had some health problems to sort, but that just creates more questions than it answers! Of course I dont worry about other people being confused, more about the possibility of people being awkward, or asking others about it and finding out I had cancer and then being weird about it. I'm much more comfortable being candid about the whole thing and just saying I had cancer. I guess. Just thinking out loud a bit here.

I know I dont have to tell people anything if I dont want, but I always feel that there should be a more open dialogue around uncomfortable issues like cancer - or in particular cancer in young people. Perhaps if people know they know someone young who had cancer, when they get strange symptoms like I did they wont be so reluctant to take them seriously. Last time I saw my GP she was saying how so many young people and doctors all just sort of think "its fine, I'm/they're young" when in fact young people really aren't invincible. Obviously, these things do happen.

My attention span and focus has been good this round, though energy levels have been very up and down. I saw Tim Minchin live on the 3rd in Sydney with some friends which was fantastic. Not only is he wickedly clever and fantastically funny and talented, he makes you feel awfully smug for agreeing so wholeheartedly with all his songs and opinions. Few days later I went to the coast with friends, which was lovely. It would have been a lot better though if summer wasn't taking a vacation this year though.

Though I'm getting fairly anaemic Im holding up pretty well I dont feel that different, though the drop has probably been fairly gradual over the last month or so and in comparison to everything that happened since surgery being a bit more tired and short of breath really doesn't stand out so much.

Still haven't got anything definite happening with radiotherapy. I'm pretty sure they're mean to call us sometime to organise more appointments. They better hurry. I think ideally radio would start three weeks after chemo, same as with normal treatment, and I'm also under the impression that I'm meant to go down for a day before hand to get an MRI and get everything set up for the actual radiotherapy. And then there's also the PET (and possibly CT) scan/s that have to be done "as late as possible" but before melbourne. Who knows! Its hard to worry about being punctual with this last lot of treatment at this point.

I wonder how many more blog posts I'l have? What should I do with this blog once I finish treatment? I think I'l keep updating for a while at least, chronicling my return to normal life. And I suppose also updates when I have follow up scans/appointments.

Hope everyone out there is well x