Really sorry guys, I cant get the paragraphs to work for that post. Urg. They changed blogger a bunch. Do not like.

Well hello everyone. I'm sorry its been so long since my last post. I dont really have a specific excuse except that I keep not thinking to do it. I think thats a good thing. I'm not thinking about my illness in between rounds so much lately. Its good, my attention span has improved a lot. I feel much more... normal, I suppose. Last chemo was fairly unpleasant. But it always is. The taste is worse with this new protocol. Even thinking the word chemo I can taste it in the back of my mouth. Its horrid. The nausea isn't so overwhelming either, but the fatigue felt as bad as it ever has. I was getting quite upset in the few days before xmas; I was on the couch watching tv for 4 or 5 days and there were lots of xmas cooking programs on. I wanted very much to make myself useful and do some cooking but I couldn't, and I was afraid that I wouldn't be well enough to do much eating on xmas day. Thankfully I felt much better on christmas day itself and did a bit of eating and had a very pleasant day. For christmas I got a hatstand, four books a talking book and a cd. Good haul I think. The hatstand was very much needed- I have so many scarves and hats I had no where to put them. The day was spent doing not very much, mostly watching tv with the family and eating I think! I dont remember so far back as what I was doing before the last round. I remember an appointment with my oncologist which i mean to blog about but never did where we discussed radiotherapy a bit more. We haven't yet had the radio-oncology appointment yet so we dont know where it will take place (fingers crossed for melbourne) but it will be every day for about four weeks. The earlier radiotherapy was divided into just five rounds so as to be much quicker because they needed to shrink the tumour in my L3 to heal the fracture, but as this time there is no such fracture and also no more chemo after radio it'l take place over about a month. For those who didn't read earlier posts where i think I covered this, we have to go interstate to get this second bunch of radiotherapy because the location of this round is the chest wall where the tumour was pulled away from during my lobectomy. Since I breath, the area is constantly moving making it significantly more complicated to treat with radiotherapy. Though we have the machine here, the oncologist is uncertain that the radio people have had much practice using it- something to do with the instructions of formulas or whatever they type in so it turns of when the targeted location moves out of the way of the lasers. It doesn't particularly bother me. The radio department here in canberra is as unfamiliar to me as one in another city really, since I was so ill during most of my short treatment there and appointments with the dr's always seemed to be post treatment when I was exhausted. Honestly I didn't like the people there as much anyway. A month away could be difficult, in that I wont have so many friends around as frequently and I wont be in the comfort of my own home, but if its melbourne it'l be nice to see old friends, and maybe do some shopping. The hospital I expect I'd be at if it were melbourne is very close to the CBD so there'd be places to wander and shopping to do without having to worry about transport and such. I'm really not keen in sydney. Not a city I much like, and the hospital there could use with a bunch more funding. And I know my way around the melbourne CBD alright anyway so i wouldnt get horrendously lost wondering the streets. Since the daily dose will be so much slighter and the location wont effect my digestive system it is likely I wont experience any nausea, which would be so incredibly indescribably fantastic, but they also said that the last round wouldn't be as bad as what i'd already gone through with chemo. It was. Fatigue seems more likely to be a problem. But again, considering the dose, its tempting to believe that I wont just spend the month immobile on a couch that isn't mine. But I'm reluctant to get my hopes up. The worst of my year of treatment is surely over, following the surgery-then-chemo-then-spinal-fracture-then-radio-then-chemo-then-dehydration-then-anaemic couple of months, but there are lot of shades of awful between how I feel now, how I could feel with radio and how I did feel during that time. I'l know how to prepare myself mentally for it better when I know where I'm going. Though really I wont be able to start making plans until I've started the treatment and get a feel for how much it'l effect me. I think I will have to approach it expecting exhaustion. Some nausea could be ok and some physical pain is manageable because you can still have control mentally and focus on maintaining a calm and dissociating yourself from it as best you can. You can still communicate and enjoy the world a bit. When you're at that level of exhaustion though, you're too tired for mental discipline or meditation or communicating with people or enjoying melbourne's excellentness. Its harder to see the silver lining. But its not likely to be that bad. I dont remember any thing else we talked about at the appointment. Nothing else really to report. My breathing sounds different though, and its very tedious waiting for my nerves to do their reconnecting and healing and stuff. Still a lot of places I have absolutely no feeling. I'm mostly used to it now, but itd be nice if it wasn't all permanent. Its so bizare how I didn't notice these pains when I had my spine at all. The brain is an amazing thing. Hope everyones holidays were/are lovely, and thank you for the christmas messages :) xx

Out of sight, out of mind

Sorry for the space between posts again, I've been trying not to think about everything and focus on doing things I enjoy a bit more. I start chemo tomorrow - well, later today as its 1:27am - and I think I'll take a laptop and do the blogging and emailing I haven't been doing in the treatment room.

Chemo day

Started off smily and talkative and determined to stay awake. Got a big gift bag full of nice things from redkite, whoever they are. Port accessed on first go. Did the find a word in the bag. Couldnt keep eyes open. Fell asleep. Woke up feeling more tired than when I fell asleep. Home now but so tired and pale. Taste is terrible so im sipping ice tea constantly. Going to try play Skyrim (videogame but I suspect I wont have the concentration or energy. The weather has just turned lovely and rainy and windy with a cool breeze coming in. Perfect post chemo weather. I feel better sitting at home doing nothing feeling horrible if I wouldnt want to be outside anyway. There were two other young women in the treatment room today, but I didn't say hello like one sometimes sort of does as I was in the smaller room at the end. Easier to keep your centre in a smaller less chaotic environment. Very tired but dont think sleep would help/be possible. Better to try pass time with as distracting and non energy requiring a thing as possible. I want to think. I want to talk. I want to read. But I cant properly. Its so frustrating. Having to work through this haze of fatigue and chemo brain. So disgusting thinking about the volume of poison injected into my body today and how aware I am of what its doing to parts of me, and how bad I'll feel in a day or two. So I'll just try pass the time. When I can write more than a stream of consciousness again I'll tell you what we learned from the meeting with my oncologist. I will say though that everyone at the hospital was saying how happy he was with how much better I am than I was. It must be so difficult to be the one advising all this horrible treatment and looking at how it effects people and trying to be the judge of what is best and worth it in the long run. You'd have to see people at their very worst and be the bearer of terrible news and be confronted with every extreme of human emotion. I imagine people would sometimes blame them for their situation and that would be so difficult to deal with. I'll have to make mine some amazing cake or something when this is over.

Chemo day

Started off smily and talkative and determined to stay awake. Got a big gift bag full of nice things from redkite, whoever they are. Port accessed on first go. Did the find a word in the bag. Couldnt keep eyes open. Fell asleep. Woke up feeling more tired than when I fell asleep. Home now but so tired and pale. Taste is terrible so im sipping ice tea constantly. Going to try play Skyrim (videogame but I suspect I wont have the concentration or energy. The weather has just turned lovely and rainy and windy with a cool breeze coming in. Perfect post chemo weather. I feel better sitting at home doing nothing feeling horrible if I wouldnt want to be outside anyway. There were two other young women in the treatment room today, but I didn't say hello like one sometimes sort of does as I was in the smaller room at the end. Easier to keep your centre in a smaller less chaotic environment. Very tired but dont think sleep would help/be possible. Better to try pass time with as distracting and non energy requiring a thing as possible. I want to think. I want to talk. I want to read. But I cant properly. Its so frustrating. Having to work through this haze of fatigue and chemo brain. So disgusting thinking about the volume of poison injected into my body today and how aware I am of what its doing to parts of me, and how bad I'll feel in a day or two. So I'll just try pass the time. When I can write more than a stream of consciousness again I'll tell you what we learned from the meeting with my oncologist. I will say though that everyone at the hospital was saying how happy he was with how much better I am than I was. It must be so difficult to be the one advising all this horrible treatment and looking at how it effects people and trying to be the judge of what is best and worth it in the long run. You'd have to see people at their very worst and be the bearer of terrible news and be confronted with every extreme of human emotion. I imagine people would sometimes blame them for their situation and that would be so difficult to deal with. I'll have to make mine some amazing cake or something when this is over.

Oh! And...

A question form an Anonymous reader and commenter has prompted me to post another post tonight about the more practical side of things. Which is hard, because we dont really know.... anything. So it might be easier to tell you what I dont know, than what I do.


My next oncologist appointment is on friday (I think/hope). I will be asking my oncologist:

- Am I starting the next round on monday or tuesday of next week?
- How many more rounds do I have? (mum and I think it will be like 3 or 4. I think. Basically we're expecting it to go until around my birthday in mid february)
- So with this new chemical replacing the doxorubicin, what kind of time will I be spending in the treatment room? Will it still be just one day? Or will it take a few days to administer? How many?
- Does this one have any yucky long term side effects like the doxo did?
- Considering the first choice was the doxo despite it having the potential to cause heart problems, is this chemical expected to be less effective?
- After I finish treatment, whats the protocol? At what intervals will I be getting scanned to see if the cancer returned?
- What happens if when I finish the planned number of treatments and get that PET scan, there are still cancerous cells showing up?
- Is that at all likely?
- Is there any point speculating about the possibility of radiotherapy on the surgery site at this point?
- If that were to go ahead, would it require a trip to sydney?
- I've heard about a study/studies that indiciate that women who get straight back to work after completing treatment from breast cancer tend to have the best results. Do you think this can be extended to all cancer patients? Do you think this was because getting back to a normal routine is just that beneficial, or is it probably more that those women were the ones doing well enough in themselves already, and that being at that level of physical and mental health that quickly is in fact the major factor. Or is it probably a combination of both?
- What happens with my disability pension when I finish chemo? What if I dont go back to working straight away?
- Is there really a time frame in which if nerves are going to heal after surgery, they will have done so?
- At this point do you think my L3 is still actually fractured, or would it be mostly inflammation and nerves and stuff at this point?
- WIll my sense of taste ever go back to what it was before I started treatment?


...Well, I'll forget a lot of them, but hopefully my parents will have similar questions.

Three weeks?!? Woops.

So as it turns out its been three weeks since my last blog post. Dont panic! I'm ok. In fact, right now I'm probably the best I've been since surgery.

I'm not sure how it got to be so long since my last post. There was chemo, which was a little nastier than the last round despite still being just one day sans nastiest chemical. I think the nastiness came about because I was still doing better physically, but still very tired. As a result I went a bit stir crazy. The worst part of recovering this round was, apart from the fatigue, that I spent three days crying pretty well constantly. It wasn't dramatic crying. It was really weird. The best way I can describe it is that I was suffocated by the horrible recent past and the frightening unknown future pressing in I think. Just worn down and feeling like it was never going to end.

The strangest thing about feeling like that is how it turns out to be really a side effect of the chemo - I woke up on the tuesday (I think) following chemo feeling pretty well fine. Since then I've been getting out and seeing friends and gradually regaining some semblance of independence, which has been amazing. Last night we switched from 4mg of hydromorph every 24 hours to a low dose of endone as needed (been about three times in the last 24 hours, though to be honest all I did was play videogames so I wasn't exactly putting pressure on my back!). You might be remembering that I was initially on endone (well, oxycontin, but its pretty well the same I think) and switched to hydromorph because I didn't like the way endone made me feel in my head. Hopefully this shouldn't be much of a problem because of the low dose, and the fact there is still some pain for it to be covering.

Though being in pain means that opiates dont make me feel too stoned (not sure how it works, but being in pain changes the effect it has on you to just pain cover) I am aware of the effects its had on things like memory over the past number of months and am looking forward to being completely off drugs hopefully in a few weeks. My memory of this entire year has been blurry, but the last few months are so unreal in my mind - what I can actually recall of them anyway. I dont really remember things unless talking about them in depth with people. It takes a bit of conscious effort to find and access memories. And even when I do the time line is... well, I dont really have one. Its mostly about where I was and whether I was in pain or sick.

So, I'm now technically a member of CanTeen, but am yet to attend any camps/get togethers/parties. The first one I expect to get to is the christmas party, which I'm a little uncertain about. It seems weird to be new amongst a group at the xmas party. But it'l be great to have more contact with people in similar situations. Or just young people who understand what cancer is, and have some idea how to react. That is, they know not to "react" and instead just talk to me as a person. I've met a number of other young patients, mostly through tumblr but also one or two through this blog, making it all the more rewarding. Its good to read about these things and be able to offer and receive empathy and suport from people my age.

Its difficult though, when you come across someone who is yet to begin treatment - who's at the beginning of their cancer journey. Because you know there is nothing you can say that will adequately prepare them from life as a cancer patient. For just how much worse the treatment is than the illness (or so it seems much of the time). The mental struggle with that concept, as it just keeps going and going. Thats the where you really need your strength. Going through cancer, sometimes it feels like its just happening - like you aren't active in the experience. But just not choosing to relax or even stop treatment must be the most impossible thing for young people living on their own who dont have the support network I do to keep things in perspective.

The other day I was talking to some friends about the puppy dog "are you dying!>!" eyes you get from a lot fo people. One of them said, "I dont know how you dela with it, it drives me crazy just seeing people do it to you". I guess I deal with it because I know that no one (my age in particular, older people have less of an excuse) as any sort of precedent in their personal experience of how to react to a young adult with cancer. Because its such a complicated situation that they know they dont really know much about, people are sort of lost about what they should say, if anything. Which I understand. We're an extremely socially awkward society. Other cultures have rules and codes of conduct around grief and illness and stuff. We have conventions, most of which are counter productive and unhelpful.

I'm getting vague now. Must be time to get some sleep. I promise to try not to leave it so long between posts again! Gnight world x

United states?

So, this blog gets regular visits from people in the US. Other countries in europe too, but heaps more form the US and I'm curious as to if you're someone I know from tumblr? Or twitter? Or maybe a total stranger. Anyway, thanks fo following I suppose? Hah.

Had a pretty rough day yesterday. Was sick a lot for no apparent reason. I was very tired as we had to be up early to get to an appointment with my oncologist. The nasty drug they left out last round, doxorubicin, is apparently all done! It can lead to heart problems, so there is a limit to how many doses you can have, and I've reached that limit apparently. Its to be replaced with another drug whose name I cant remember, which would be excited except that its apparently pretty similar in how it will effect me. Unfortunately since I wasn't feeling all too well I forgot to ask how long it takes to be administered. Would it take a number of days? Hours? Minutes? it would eb great if it was just one dose each round so I could have just the one day each month, btu I mustn't get my hopes up on that front.

I got home and went straight to bed. I slept a few hours and got up and had an antiemetic. This one (maxolon) makes me feel pretty terrible. But it stopped the vomiting. So it was a pretty rough day. But I slept well that night.

Next chemo is next wednesday. Once again just one day. Looking forward to when I recover from that. I'm expecting to be feeling pretty good.

Got to admit, its getting better

I've been doing much better since I last wrote. Very little nausea since the last chemo, and my back has been much better! We've cut down to 8mg from the 12 what must be a week ago now, and I've had very little discomfort. I'm able to get myself around the house and do a bit of cooking and waddle around in the pool a little! I've been having visits from friends and had some opportunities to wear some of my nice new things I've bought online.

I've been out a couple of times for lunch with mum and my brother, and even gone out to see a comedian. However since I've spent the last few months sitting or lying down my level of fitness is such that I cant really just hang around in town, as I cant walk terribly far before I need to sit down. Despite this though I'm eating pretty normally again and drinking enough so I'm not getting dehydrated every other day as I was.

So I'm doing better, and since I've already had surgery, the back is healing up nicely (hopefully, its not like I can feel it either way) and radiotherapy is probably all done with I'm hopefully over the worst and everything will just get better from now on. My friends and family are all being so supportive and kind - even strangers on the internet who find this blog or my twitter etc are so generous. I've even received a few cards and itunes gift vouchers from some very kind family friends in Perth! (thank you if you read this!). I was talking to my GP the other day and she was talking about a patient they had who was a young man on exchange from china living here alone who was diagnosed with testicular cancer. He was afraid to tell his parents back home because he knew they couldn't afford to come to australia to take care of him or visit, so he dealt with it alone, in a foreign country with no family and all the expenses and travel managed himself... Hearing things like this I just feel so grateful to have the support of my amazing family and friends. The boy recovered fine, by the way. Apparently testicular cancer has a really great prognosis and his family now know.

Difficult week

Its been a difficult week, I was quite sick up until wednesday. We went in for chemo but I was much too ill so they gave me a few bags of fluids instead, and tried to get me a room. None was available though so we came back the next day instead. I was feeling better, but we had to wait for a doc to be available to review me and make sure I was up to it before I could start. So, we spent about 5 hours at hospital waiting, when he eventually arrived he said I'd have to be admitted to do it today, and i would be kept in over the weekend. I rejected this idea.

We went back again on friday, did the chemo, and went home. So far I'm feeling ok. Haven't really been sick a few days, and without the nastiest and most time consuming drug involved I'm coping ok so far. Very tired though and feeling irritable. So extra glad I'm not in hospital. That'd be a nightmare.

We go back in tomorrow morning for more fluids and a review. Hopefully I wont get much worse than I am now and wont need ot be admitted. Hopefully we've broken the cycle of nausea and I'l be able to get on with life and recovery in a few days time.

Radiotherapy

So radiotherapy- not a breeze. When describing the side effects they sort of just mumbled about how there might be some nausea, and it would be nothing to chemo.

Long story short, lots of nausea this week, and LOTs of intense fatigue. I am so very tired. We went in to see my oncologist yesterday and as soon as we'd seen him we were sent into the treatment for more fluids since I was getting quite dehydrated again. That really helped break the cycle of vomiting leading to dehydration, and dehydration leading to vomiting. I dont think I've been sick since actually, which is grand. I'm eating again, and drinking water and ice tea, though am yet to get out of bed today.

My hair (head, eyebrows and lashes) has begun falling out again. Its a tedious process, but at least I dont have to start plucking my eyebrows again! Though short eyelash hairs breaking off into your eyes is not a fun process. And you look even more noticeably sick with no eyelashes.

There is positive news though! My oncologist thinks that I will not wind up having all 14 rounds of chemo (presumably because of the response to the first pre-surgery 6). Also, the next round or two will not involve doxorubicin, which is the nastiest drug, and is the one that makes it tae three days. So next weeks round will now be one day in duration and hopefully somewhat less toxic.

Busy week

Its been a bit of a crazy week. After I got home from hospital last week I was still feeling pretty terrible, and actually got quite sick on... saturday? I think? Anyway, I couldn't keep anything down and we had the community nurses out a lot, and after three days of not really eating or drinking the nurses decided I needed a review and sent us off to TCH emergency room.

Mum and i spent about 16 hours in emergency. Not waiting to get in mind you- I have a special letter for post chemo which means they let me through immediately. We got in at about midnight monday night and they hooked me up to some fluids and ran various tests etc and we tried to sleep. I was going to be discharged in the morning, but the doctors changed over, and the new doctor came in while I was being sick and said "come on, there is no way I can let you go like this. You're not any better, you need to be here." So, I changed my mind. As it turned out i was a bit neutropenic (my white blood cells were low and I had very little immune system) so they moved me to a separate room in emergency to keep the sick people away from me a bit.

Since I was neutropenic it took some time to get me a room, as I had to have my own room in acute care on oncology. So eventually (mid afternoon I think) they found me a room and sent me up. I think mum and I slept most of the afternoon (the emergency bed and chairs are not the most comfortable). Later mum went home, and I had some visiters which was absolutely delightful.

After I'd had plenty of fluids the next day they sent me home. So this was wednesday. It turned out I was low on hemoglobin, which helped explain why i was still so so tired and breathless, so I was scheduled for some blood tests over the weekend to see if it came up.

On thursday we saw my oncologist, who said that it was not at all likely it would come up on its own, and that I'd need a transfusion next week. However I couldn't see the point in waiting if I was going to hav it anyway- waiting would just mean more days of feeling terrible, so i asked and I was scheduled in for the next day (friday). That afternoon I had my first radiotherapy appointment, which was really easy, and a bit futuristic actually. Lots of lasers. Not for zapping me with, but for lining me up so they can be exact about where they get the radiation. It only takes 10 minutes once I'm in there.

So yesterday morn mum and I headed over to hospital again and sat for 5 hours while they gave me a couple of bags of blood. Gross. Luckily there was a volunteer there doing hand and foot massages which was lovely. After the transfusion it was straight over to radiation for my second radiotherapy appointment. This one would have been even quicker than the first, except for one very annoying and chatty nurse who took much longer than was necessary to explain the skin care stuff to me. She took about 10 minutes, when all she needed to do was say "here is the cream. Put on the cream twice daily during treatment. Goodbye". She was trying to be helpful I suppose but just came off irritating and pushy.

Today I am feeling much better. I have normal energy and am going out with mum at some point and plan to do some walking. I've spent most of the last few weeks in a wheelchair or bed and am looking forward to getting some exercise, however slight.

Hope everyone is well x

Blurry

The last week is an incredible blur in my head. Got home last night, but have spent most of the last few days sleeping. Feeling much better now after some family time and not being in hospital. Been a very intense week. Very strange. Very... Very. I feel exhausted, like I've been beaten up physically emotionally and psychologically, leaving me all bruised and tense. However after a good meal and listening to dad play guitar and flicking through photos with mum and mad I'm regaining my hold on reality.

It really is the little things in life that make all the difference.

Anyway, I am home and slowly recovering from my week of intense pain, narcotics and chemotherapy. Looking forward to getting back into the world and being with people I love outside of a hospital.

Hoping everyone out there is well and good x

Tomorrow

will either hold chemotherapy, or radiotherapy. My oncologist isn't here over the weekend, so we wont know until tomorrow morning what his verdict is. I wish we hadn't waited such a long time in between treatments. I wish we had just gone back in 2 weeks later, I would have been ok. The fracture probably still would have happened, but it would have healed faster as the tumour would have been attacked earlier.

Purple Haze

So this last week has been a haze of drugs and pain and frustration. It felt like much longer than a week. But by our friday appointment with my oncologist (we missed the thursday one) I was feeling a lot better. However by the time I went to bed that night I'd had to take an extra endone (10mg) on top of two panadol, two neurofen and the 20mg of oxycontin. And I was still quite uncomfortable. On the up side though mum had been out with some friends and had what sounded like a lovely, much needed evening.

I woke up at 3am that morning, and then again at 6. The first time I managed to drug myself back to sleep and relative comfort, but at 6 I could not make the pain go away and it just seemed to get worse. We had been told that if it were to get much worse, we should get ourselves to hospital pretty much straight away so as to rule out spinal cord involvement. By 7 mum was down and chatting with the community nurses. By 7 20 an ambulance had been called. At about 8 30 the paramedics were there working out the best way to get me down our front steps into the back of the ambulance. They produced this amazing little whistle thing- when they gave me the name of the drug I was determined to remember it, but I fear it was so effective it effected my short term memory. You inhaled the drug and it was pretty near instantly effective, and wore off very quickly too. Anyway, they somehow got me into the ambulance and whisked me away to TCH.

It was a pretty awful day. I was in a lot of pain which was not responding well to endone and oxycontin, there was fear of lasting or permanent nerve damaged, the MRI machine took FOREVER to get working AND, to top it all off... I was meant to be at TEDx that day. A day I had been looking forward to for a year - the most inspiring and energising day of the year - and i was to spend it in hospital in pain.

After the lengthy MRI and too many useless xrays they ruled out any new damage. The only things were this pain, and something strange in my spine revealed by the MRI. All the MRI can actually show is a.. weakening of the spine? Thinning of the spine... something like that. So it doesn't mean the cancer has spread, but we wont know until I get a PET scan. Anyway. Choosing not to dwell on that. Nothing I can do about it, and we dont know enough so, yeah. This left the pain to deal with. They gave me fentanyl and hydromorphone. Hydromorphone is meant to be something like 5-7 times as strong as morphine, but it wont make me itchy and is a much more pleasant experience. They have continued to give it to me today, but in an oral form which has not been as effective.

They moved me to the oncology inpatient ward's acute care section, which is usually for neutropenic's and others with weak immune systems- but I'm glad I'm here. I need a lot of help with just about everything as the pain is very persistent and debilitating. Much as I hate hospitals, it actually feels nice to be out of home, since its been a very unpleasant week there. A change of scenery, and a break from taking constant care of me for mum.

Though I wrote this with a little more care than usual I'm still under the influence so not sure this will all be terribly clear. Hope you can all understand it!

Pathological Fracture

Yesterday I decided t make bruschetta for lunch. I bent down to get a mixing bowl out of the cupboard and felt a horrible pain low in my spine. It went away quite quickly, so I continued with my cooking. Next time I squatted down, aware of my back doing funny things, and on my way back up experienced the same terrible pain. I sat down for a while, ate my bruschetta, and thought perhaps I might go for a nap and rest my back. I got into bed and as a tried shuffling back I experienced a truly horrible, horrible pain. Except this time it didn't go away. I had to sit a cry for a while, and then mum and I went of to the nearest ER. I did a serious of rather unpleasant exercises to test what exactly was hurting. After wards they decided they would like an xray or two to make sure it wasn't anything skeletal- but they assure us it was probably just muscular. The xrays turned up nothing (though we still had to wait 4 hours for the result of course) and I was told I'd be booked in for a CT the next day to rule out a pathological fracture which would be invisible on just an xray

It was a very long night- the first time I've ever experienced pain that I would rank as 10/10. It was difficult getting comfortable, and I need/ed help getting out of and into bed. We eventually headed back to hospital, did the CT and sat around for the mandatory 3 - 4 hours for the results. Its turns out it was a pathological fracture, which explains the pain. The fracture is in my L3 in my spine which has one of the metastasis inside it. This is apparently quite common with bone tumours - it weakens the bone causing it to fracture.

Oncology at TCH has been informed, but they didn't move our appointment with my oncologist forward at all, so they mustn't be too worried. Apparently all there really is to be done is take lots of endone and avoid doing things that cause me pain. Since I'm young it should heal perfectly well, but it may take until I get back into chemo or start radiotherapy to get the tumour itself out of the way a bit.

Good news!

So on tuesday we went back to hospital to se the registrar to talk about how surgery went. It went well :) Though he couldn't answer more specific questions, he had the report and told us basically what it said.

What it said was that they got pretty much everything that was visible. After they take it out they slice it up and look at it through their microscopes to work out how much is a alive or dead or calcified etc. The bit they looked at showed LESS THAN 5% ACTIVE OR LIVING OR WHATEVER TUMOUR. Exciting. However when we looked at the report ourselves it said something about the "first section they looked at" or something showing much higher percent. But it was unclear if that was the first bit from this surgery, or from the initial biopsy or what. We'll have to wait until I see my oncologist next week for a better explanation.

It looks like I will have radiotherapy on my chest as well as bone metastases now, since the tumour was in between the plura there may well be microscopic cells in the chest wall muscle there which were left behind after surgery which need special attention.

So another exciting thing to take from this is that, if the primary site has responded so well, the other sites will have responded well too- perhaps not as well, I would think that soft tissue sites would have greater exposure to blood and therefore chemo and such, so it may not be the same. However, its really good to know that it has been responding so well, considering I'm less than half way through chemo and radiotherapy is yet to be brought into the treatment picture anyway. Even if the chemo becomes less effective in the future, mum and I feel that is a little less of a worry now, considering how much its responded already anyway.

So all these things are good. Feeling quite relieved about all that.

Tedium

Very tedious day. Though i had a lovely time with friends last night, I was very tired when I went to bed and slept very poorly. I was bothered all night by someone claiming a vegan diet could easily cure cancer. Which is untrue. Its actually quite offensive to suggest that all the suffering endured by cancer patients is unnecessary, and that all one needs to do is change their diet. It trivialises the whole thing.

I was very tired and grouchy today as a result, a feeling not improved by running late to hospital only to discover they had no record of an appointment for me with the registrar today. I feel deeply unimpressed by the way my discharge was handled. Some of my medication was left off the discharge letter, and there was no mention made as to when I needed to have stitches or dressings removed. Anyway, we organised another appointment for tomorrow and went up to the ward I was in last week to find out about the stitches. They said today or tomorrow, and that they wouldn't do it there.

SO.

That of course meant driving back across town to the medical centre to wait forever to see a dr for 5 minutes to take out two stitches. Oh, and have my bald head stared at by a full grown woman. I stared right back at her for a moment after I caught her looking and she averted her gaze. I refuse to be made feel uncomfortable in public because of my illness and if anyone starts making me so, I'l turn it right back on them!

I'm still so tired. I'm trying to take endone less frequently every day, with hopes of sleeping properly soon. The endone means i wake up literally once every 1 - 2 hours, confused and jerky. Its hard to get a proper rest. I might have another nap before dinner.

My port

Its about an inch under the skin on the right of my chest

Super Speedy Heal-ee Powers!

I'm feeling really good. I wake up a bit sore in the mornings and often need a bit of help getting out of chairs and beds, but after getting my drugs down I am able to do normal stuff. Yesterday I not only cooked, but also had a shower and went to a friends bonfire party for a little while! I came back feeling fantastic- getting back to normal things and seeing friends makes the most enormous difference.

I realised last night at this bonfire how few of my close friends actually read this blog! Which is kinda funny- I suppose its because they believe I'l tell anyway. This is true, but I forget things, and there are quite a few people to tell. Some of them were surprised to hear my lung was involved in the surgery at all! haha ahhwell.

Tomorrow I get my stitches out, and see my oncologist or one of his underlings about what comes next when. Though I'm anxious not to leave it too long before I return to chemo, I have a friends floristry competition thing at floriade this saturday and TEDx the following saturday, and desperately hope chemo can wait til after then. It all depends on when I'm healed enough. I dont know when that will be. I'm also concerned about the chemo attacking the fast changing healing cells in my chest and preventing me from recovering properly from surgery, though I dont really know how much of a risk that is to begin with. I'm looking forward to tomorrow though, the surgeons report will have been sent to my oncologist and he'l be able to tell me about ti properly. Its frustrating how the surgeons dont give you anything in writing after the surgery, so all you have are drug addled fuzzy memories about what he said when he visited you in ICU. All very unclear. My understanding is it went well. I dont know if that means he believes it was successful in taking out the whole tumour, or most of it, or a lot of it, or just that it was a tidy and efficient operation.

I was hoping to write more but my laptop is about to go flat- I'l update again tomorrow after seeing the Dr.

Sunshine!!

I am home! Left hospital yesterday. Will write more tonight as I'm on my phone, but thought I'd just say that I'm out of hospital and about to go for a drive with mum, since the only sunshine iv had Ina week has been the drive home. :)

Hooosssppiitaalll

Been fairly rough few days. Opioids really mess with me. I can take a lot, so long as I can maintain a sort of internal equilibrium, but drugs make it very difficult to do that. Just having the mental capacity to organise my thoughts into a decent sense-making blog post is taking so much concentration and energy.

Yesterday I was lucky enough to get moved to a bigger room of my own, which helps everything a lot. More room, less noise, more privacy and my own bathroom! Quite a few frustrating things have been going on, so its been really wonderful having a space to discuss things with mum and even have visiters. Its great not to have to spend another night sharing the room with that rude lady. From what mum and I could pt together she's had a pretty terrible time, I think she'd had a tube down her throat before I got there as there were heaps of comments about her being able to speak again, how long she'd been there- plus apparently she'd been in ICU before me. So I have forgiven her. But yeah, as it turns out the nurses aren't really allowed to tell people when to put on their tv. However, the second and final night we shared the room she waited until 6am before turning it on, which I was ok with.

The day that followed this was pretty up and down. I had a decent sleep (despite 6am tv) and so was feeling ok in the morning. This was ruined by a very disappointing nurse, who seemed vaguely irritated by my pushing the help button, lacked enthusiasm and confidence and left me standing in the bathroom pulling the assistance needed string thing repeatedly for 5 minutes. Standing up was a big enough task, standing still and then trying to push a tower thing with multiple pain killer-ee things hanging off it through a heavy door and over a slight hill (very slight really, but enormous to people in my situation) was beyond exhausting. I was not in a good way anyhow and found myself very upset. Which isn't so good when heavy breathing is painful, you need to be able to breathe properly through your nose to get 100% oxygen saturation from the nasal prongs, and you dont have eyelashes to help get the tears out of your eyes (a use I never realised they had until they were gone). This all sounds very pathetic and a bit unnecessary to share in such detail, but it was actually one of the most upsetting events of the last few days. The feelings of powerlessness and wrongness, the reminder that I have very limited control over my situation, the experience of being weak as an anaemic kitten... things I'd rather not have had to experience during the "prime of my physical life".


....OK so I wrote the above yesterday. I'm getting increasingly confused about days. At some point in the last few days though, a nurse did two silly things. The first one was she brought me a pill and I asked her: "what is this called? Is it the anti inflammatory I had this morning? Do I need to eat with this?"
Her responses were (from what I could make out between the umms and ahhhs) "Vniailsunlianv", "no" and "noommmmmmmhmmm??"
So she was wrong or just unclear about all these things. I saw the actual name on the page, and googled it, providing me with all the answers I needed in moheticments. Later on, she hooked me up tot he wrong localanaesthetic. I barely got through any though before another nurse came in and it was the right one and changed it. The two drugs were fairly similar and no harm was done - but it was very disturbing to think that I can just be given the wrong thing, anything, and there is only is much that can be done to prevent it.


....OK now since writing all THAT, I had the second of my tubes taken out! Wooo! The first was taken out yesterday after an xray and a lot of draining. It was very uncomfortable and made me particularly nervous as on of the people removing it was the incompetent nurse for the day before. Today it went somewhat quicker, was not very painful, and the nurses communicated more clearly. I feel much better having them out. I now only have one attachment, the local anaesthetic pain buster tube thing. I dont expect this to hurt too much as the tube apparently is even thinner than the tube in cannulars.

We've come to the conclusion I'm allergic to the oxycontin- which is the longer acting slow release pain drug I've been on. It makes me pretty sick. This puts more pressure on me to have regular endone, which I loathe. It just knocks me out. I just want to sleep all da right now!

I haven't read through this whole post so i dont know how much sense it mkes. However I'm going to try some walking now and then maybe a shower, as looking at screens make me tired and headachy.

Thank you all for the love and kind words

Awake-ish-er

Not feeling too bad at all right now, in fact I jut recorded a short and very unattractive vlog on my iPhone, only to discoverit is beyond me right now k work out how to get it on the Internet. Gist is:

- morphine and pain buster to e removed tomorrow and replaced with oxycontin pills
- top drain tube in lung to be removed tomorrow
- been able to walk to toilets and doing short halls today, coughing and breathing deep and stuff
- room mate turned on tv this morn at 4 50am. If she does it again tonight... I will explode.
-local abaesthetic/painbuster causes numbness around middle, while morphine causes itchiness . these two things combined = horrendous and surreal discomfort.
- lots of people remember me from last time.

Surgery tomorrow, updates will be posted in comment form by my family on the post

But nothing before 12 tomorrow

Coming up to surgery...

I really wish I had better veins- last thursday mum and I went to calvary for my CT scan and finding a vein took longer than the procedure itself (not that its a very long procedure!). It was strange though- for the first time in ages they tried a vein in the inside of the elbow (or elbow pit as I so ingeniously and efficiently called it as a small child). I barley felt it go in! So painless! I envy all of you your decent veins so much more now, knowing how much easier it could be. But alas, nothing is quite straight forward in the Saga of Katie's Cancer Journey. They wound up putting the canular in the side of my wrist below the dip under the thumb. I was not even aware there was a vein there. Strange. But it worked, they got the dye in and did the scan and we headed off.

Next day we saw the surgeon. We all got a look at the CT. From the PET the oncologist had deduced that the bulk of the tumour was in the top lobe of my left lung and just through the inner pleura. In my mind this sounded ok, because it seemed removing that lobe would probably make a pretty clean job of removing the tumour. However with the CT (which uses dye to show where there is.. well, mass I suppose, solid- as opposed to activity as is the case with the PET) we saw that the tumour is actually through both pleura and appears to be in the chest wall muscle a bit. The red bit on the picture below is roughly where it is. it may be bigger or smaller, the bulk of it may be dead or alive or sleeping, it might be further up or down the lung, but it gives you a more visual idea. The ribs are outside the chest wall pleura, so there will be externally apparent difference appart for a big backwards C shaped scar.



Note my incredible computer graphics skills! Red scribble! Haha.

So what the procedure is now technically know as is something like: thoracic lobectomy... something something... chest wall resection... rib removal? I know there was something in between thoracic lobectomy and chest wall resection, it may have been the rib thing, but I cant remember. Anyway, the one they're most certain will take place is the lobectomy, chest wall resection fairly likely, and rib removal possible (but hopefully not). But thats the general idea of the procedure. Its expected to last 5 or 6 hours and the surgeon said "this will be a tricky one for me" or something like that. However, I have every faith in him. He sounds very experienced and is very focused. He's a cardio-thoracic surgeon (heart and chest surgeon, so he's used to intricate stuff and lots of blood, which considering the location of the tumour (lots of veins and arteries in the area, and the chest wall resection will probably lose me a bit of blood) seems perfect.

We met his registrar today when mum and I went into TCH today for my pre admission appointment. He also seemed good- on top of things. Having what I have I find I am quite often the one doing the telling about what I have and what is going on with it, but today it was him telling me. He was efficient and informative, but not cold. Exactly what I wish all doctors should be. As well as him we spoke to a nurse and an anaesthetist. The nurse was mostly putting paper work in order I think, but she also gave me some very general pamphlets on epidural and patient controlled analgesia.

These were elaborated on by the anaesthetist (not my anaesthetist, as she was elsewhere and he was standing in in terms of gathering and providing information and such). He explained that he was not really keen on epidurals for chest surgery, as the tube is put in higher in the spine than with giving birth. This poses greater risk as the space to insert it into is somewhat smaller, and there is actually the spinal cord up there. However, he also conceded that it may have significant benefits for me specifically over a morphine pump thing because of the differences in the mechanism of their action. Morphine works in the brain, preventing you from consciously experiencing the pain, whereas local anaesthetics (like epidurals) prevent the nerves from actually picking up the pain in the first place. The difference is that with morphine your body still experiences all the stress of pain, its just you cant feel it so much and your ability to form coherent sentences is greatly diminished. Anaesthesia I guess keeps your whole body from knowing about the pain, so it doesn't stress you out. This doesn't only make a difference in the short term, but recent studies have apparently shown that using morphine and allowing your body to experience the pain increases the risk of further spread of cancer.

Though that kind of sold me, it turned out that the surgeon himself was not a fan of epidurals (for whatever reason, I suppose the other risks they pose, including infection etc) and planned to put in a "pain buster" as well as give me the morphine drips. The pain buster is a small tube inserted into the area, to periodically (i think) release local anaesthetic to be picked up by the nerves. This means I wouldn't need as much morphine, but I'd still be getting the local without the epidural. So it seems like a good compromise. Course it means yet another tube sticking out of me post surgery! Oh well.

I think my access to the internet will be greatly restricted in the first few days post surgery (pain, drugs, fatigue and surgery ward rules) so my plan is to make a post that is just a heading or something wednesday night on this blog. My family will update you all on my progress by commenting on that post, so for updates you will have to check the comments on the post.

Though I dont think it'l be on their priority list to update it, I know a few people have asked specifically about an update after surgery on the day at least, to know how it went and that I'm alright. I'm sure it'l go well and I'l be fine, but I'l try make sure someone puts something here to confirm that.

In terms of visiting, I will be in ICU for 24 hours after the procedure, and I dont really think I'l want many people round until I have a few tubes removed and am back to wearing nighties instead of hospital gowns. So it'l be a few days. I suppose I'l post something on facebook when I am back online and have a phone so people will be able to contact me and organise visiting times.

Thank you all for your kind words and comments and emails and tweets and facebook messages and texts etc. I will update as soon as I can type efficiently again! xx

Dates! Dates fo surgery!

Well its been an interesting few days. On friday mum and I went to see the surgeon, who tried to load my scans on his computer, failed, told me he'd need another CT scan before he could operate anyway, and sent us off again. The rest of the day was spent running back and forwards between TCH, CH (which are at opposite ends of town to each other) and the surgeons office trying to organise a last minute CT scan. It was looking fairly impossible at first, since we only have a week before I was meant to be in surgery anyway, and it cant be delayed longer than a week really as I cant go that long without chemo.

Everything worked out though- we managed to get a CT scan booked for thursday at calvary (which is close to home) followed by an appointment with the surgeon on friday morning. We made sure we'd have the scan results and everything with us when we went to the surgeon too. So this was all looking hopeful, but since I hadn't been booked for surgery I wasn't too sure I'd get a place that week which would mean another round of chemo first anyway.

I was wrong! Yesterday we got a call saying that I was booked in for thursday week at TCH! So, everything has sort of come together at the last minute. A big relief.

Yesterday I was meant to attend a Look Good Feel Great workshop with mum at calvary, but this was cancelled due to a protest. They were expecting huge traffic jams delays, but in the end the turnup was thousands of people smaller than expected, and the roads were clear after all. Which is good. It was concerning to think that the hospital was expecting people to have difficulty getting there. A bit of a safety hazard.

So thats all good news. Also looks like I'l be out of hospital in time to see dylan moran, even if I'l be in pain and on drugs. Surely the latter can only improve the experience!!

Quick update so you know I haven't forgotten the blog!

I'm really tired right now, so I wont give a full update about chemo last week and surgery plans to come, but I thought I'd just say something to keep people form worrying.

I am really well, by monday I was back on my feet and getting out and about and feeling perfectly normal, which is great. Nice to get independence and energy back to a point where I can go out and do whatever the week after chemo. Been seeing friends a lot and keeping busy. Bought the first book of the series Game of Thrones is based off, and so far enjoying that. I've had a lot of trouble reading since chemo- the fatigue comes with a really greatly diminished attention span a lot of the time.

I dont suppose having an iphone helps either. One has the compulsive need to check ones facebook and twitter and email every 10 minutes no matter where you are or what you're doing. Plus i have a bunch of great mindless games on it now too. Having such easy non effort requiring entertainment with me everywhere in my back pocket does seem to make it that little bit harder to put in that bit more effort to read.

But things are going well now last week is over. Mum and I are meeting the surgeon on friday morning so dates will be finalised then and we'll learn more about the procedure I suppose.

Waiting

Just sitting waiting for some friends to arrive- the day plan is the new My Little Pony which is apparently quite amusing and pizza. Not at all a bad plan for the day before chemo!

Not feeling too bad about this round- feeling fairly accepting of the situation. Besides, each extra round now is one less I have to do after surgery, its not like I'm having more than I otherwise would have. It'l be a week, a horrible horrible week, but then it'l be over and then I can have my dinner party and stuff.

Its a beautiful day in town today- blue sky with a few fluffy clouds and plenty of sunshine. Trees and plants are being tricked into thinking its spring so there are a few blossoms out already. The forecast for most of next week is wet and cold, which is good. Nice weather during chemo feels like some sort of cruel taunt of nature!

Managed to be interested and read a lot during this past week, feels nice to have an active brain.

Change of dates for surgery

Not been up to much over the past week, mostly just hanging out and recovering from a cough.

Today we had that appointment with my oncologist to sort out surgery. The original date was the 17th of this month, but that would have been 31 days after I began the previous round of chemo. So that would have been an extra 10 days, which really isn't optimum, so he organised for me to have another round starting next monday. Surgery has been pushed forward to the 29thish.

EDIT: Also it sounds like the surgery will involve removing the top lobe of my left lung; my oncologist wasn't certain but he thinks thats what the surgeons will probably want to do.

No more chemo! (For a little while. Probably.)

Apologies for my absence- what happened with the delay for the post below is that I wrote it, but instead of pressing "Publish Post" I pressed "Save Now". So, the post was just sitting as a draft until I visited the blog to read a comment a lovely anon posted and discovered it hadn't gone up. Apart from that, its still almost two weeks after when I wrote that, so I suppose I should update you!

The day after I last wrote (friday the 15th) was a lovely day- it was my fathers PhD graduation ceremony! So we went to that and were all awfully proud and everyone drank some champagne (except not me! Dry July still going for a few days- donate now!) and took lots of photos. Dad got to wear the floppy hat and officially become a "Dr". Some relatives were visiting from Perth, and they came and we all went out for dinner. So really, it was a very good week- relatives, good news, and a graduation.

The next week I had chemo. I dont know if I can say it was better or worse than any other round has been. I wasn't physically sick, and didn't pass out, so I suppose those are both improvements on previous rounds. I know I've said this again, but with reoccurring physical hardships its so easy to forget how horrible it is, and then once you start feeling it again it hits quite hard mentally as well as physically.

I think i had gotten my hopes up way too high that this last round wouldn't happen because surgery would be sooner- so I didn't go into it as prepared mentally as I have at other times. While the nausea has decreased fatigue hits as hard as ever, for the 2nd and 3rd day of this cycle I only get one drug, and it only takes about 30 minutes. This meant I spent all but about 2 hours in bed on these days and the day or two afterwards the only other places I would go were the couch or the bathroom.

I had not seen any friends since the previous monday so at the last minute I decided to attend a friends dinner party on friday. I was still feeling fairly terrible and very tired, but thought seeing some people would cheer me up- which it did immensely. We had a good giggle and chat and it was the most lovely distraction.

The horrible chemo feeling and the fatigue lessened quickly over the weekend though and was up to going out for dinner on monday for my brothers birthday. Which was lovely- it is such a beautiful feeling when you're back to being yourself again, and you go from looking like a cancer patient in the process of loosing their eyebrows and eyelashes and you go to looking like a 19 year old girl again wearing nice things and makeup etc. Its incredible how much impact how you look has on how you feel. Besides this, the food was delicious, and water was finally tasting like water again rather than the disgusting gluggy indescribable stuff it tasted like during and after chemo.

Today was exciting, because I went to lunch for a friends birthday in town- so I was back in the world and not feeling too bad and it was lovely. Bought new lipstick and a scarf for my head (my wig was getting too hot and scratchy) and realised just how invisible my little eyebrows are getting. You can see the scarf, the lippy and my firs attempt at drawn on eyebrows in the pictureI will attach! (Well, I still have a few eyebrow hairs left, but its mostly pencil)

Written Thursday 14th and forgot to post it!!

On Tuesday we went in for my PET scan. I'm not sure if I have explained what that is before on this blog, so I shall do so now to the best of my ability. The way it works is a glucose-fluorine compoundy dye is injected into you. Cancer cells are very active, and so the glucose is taken up by those cells over the course of an hour sitting still in a chair. You then go lie in the machine and get slid back and forwards through the length of the machine so it can take pictures of different parts of you. I think its the flurorine that the machine sees.

So, this was all a bit boring but not as unpleasant as it was the first time round, as I was somewhat sicker then. The worst part was
naturally getting the catheter in. They had trouble finding a vain as always. The first person to try was a lovely and incredibly chatty lady. She tried putting one in my left wrist just near my palm. I'd never seen anyone have any needles go here and it was actually incredibly painful- as bad as having the stem cell collection tube removed last week. Anyway, this didn't work, the needle found the vain but punctured the wall or something and she took it out. I was crying, I think I made her feel pretty bad. I do hope nurses know I dont hate them, that I realise its not their fault I have tiny and invisible veins and that I realise they are doing their best. Anyway, another fellow came in and managed to get one in the back of my hand relatively painlessly. AND it was an adult sized one instead of the usual paediatric ones they usually use for me. Its a shame they only use the portacath for PET and CT scan dyes if there is no other option (the isotopes get stuck in the tube or something which is baddd).

But yeah that all went ahead fine. Its strange how exhausted you can be after 4 hours of just sitting or lying still. I suppose it to be the stress and the concern, the wondering what the radiologists are seeing on their screens. However, the day improved for dinner. Some relatives from Perth are visting, one of whom I haven't seen since I was very young and they came over for dinner which was lovely.

I dont really remember what I did yesterday. Actually, I dont think i did anything. I think I sat on my bed just about the entire day, feeling a bit gloomy and anxious about what the results would be. I think I've mentioned once or twice the pain I occasionally still experience in my left humerus where one of the tumours are; naturally it crosses ones mind that this may be continued growth despite the chemotherapy. So, this was a concern.

Today we went in to see my oncologist to find out the results of the PET scan and further discuss surgery. The results were great! Significant reduction in the size of all tumours. "Surgeons are keen" apparently and everything seems good. So thats all wonderful- relief to know that everything really is responding well to the chemotherapy and the primary site is now operable.

So surgery will be probably in about 4 weeks, at the end of the next chemo cycle basically. Just gotta get an appointment with the surgeon, give him the disc with all my scans and xrays etc on it and work things out from there... but yeah, wonderful news!

ALSO:

I am participating in Dry July, which is basically where you stop drinking for the month and people sponsor you, and all the money goes to oncology wards around australia. Now, my participating in this might seem a little strange since not only would I not really be drinking anyway but also because the money raised will probably actually benefit me. But its ok! I'm doing it as part of a team!

My friends Richard and Ellie are my team mates, and they will quite certainly be missin' the drinkin', so that makes up for me a bit, and I suppose i thought if I participated I'd be putting my illness to good use by gaining a bit of extra attention to what is a good cause whether it effects me or not.

Here is my profile page, you can donate here: https://www.dryjuly.com/profiles/katiem

or

at our team page here: https://www.dryjuly.com/teams/thewiggers


Its really easy to donate and it'd be appreciated on so many levels.

Blogspot fail

Ok! Well, that didn't work either. Maybe tomorrow I'll open up the clip in iMovie and see if I cant cut it up- Im guessing the problem is that there is a limit on the length on movie one can upload onto blogspot. Which is really quite unfortunate, maybe I should have made a tumblr for this blog instead- though I dont feel that's quite as accessible.

I dont really remember what I wrote about in the last blog, so I'l just tel you about this week and the coming week.

I had my first blood test on sunday as I think I mentioned in the first video. I may also have mentioned the stem cell harvest and how I expected it to be late in the week. Well, mum and I went in on monday morning for the blood test which went ahead without any issues, then went out and had a lovely breakfast and headed home. it was about an hour and a half after we'd left hospital when I got a call from a nurse saying my counts were unexpectedly very very high, and that today was the day for the procedure after all. So, I packed a bag for overnight, grabbed my laptop and off we went back to TCH.

So, I hadn't really thought about how they got the blood out and back in. What they did was they stuck a whopping great tube into my femoral vain in my left thigh. It was something like 15 or 20 centimetres long (grosssssssss) and was left in overnight. So the insertion wasn't that bad as it turned out, it was the feeling/knowledge of having it down a vain in my leg all that time. I wasn't really allowed to walk at all, which was fine by me. I was a bit terrified of something going wrong with the whole thing, and once I did start moving from bed to wheelchair to bed and stuff it was getting quite sore.

A group of friends visited me that night, which was absolutely lovely, even though I was only in overnight. One of them even bought me some beautiful flowers, which always brighten any hospital stay. There was a bit of confusion as to where I would be
and everyone got a bit lost. I wound up in what was essentially and leftovers ward for people recovering from surgery. It was actually just a big room with curtains between lots of beds. It wasn't really a good space to have guests though so my friends wheeled me down to the cafe and then hung out in the lobby until some of us started falling asleep.

Where I was didn't really bother me- I had something like 17 hours worth of films and tv shows on dvd or my laptop so I knew even if I couldn't sleep I could pass the time. I found myself quite uncomfortable (a combination of bone pain from the injections I'd been getting for stem cell growth, the tube in my leg and the stitches holding it there) so they gave me some endone. I had said to the evening nurses i'd prefer if they could write me up some strongish panadeine instead of endone as I didn't much enjoy its side effects, but that wasn't communicated to the night nurses who brought me endone afterall. I was tired and recognised it would probably help me sleep, so i took it and spent half an hour giggling dazedly at Dylan Moran on my laptop, before falling into a broken and strange sleep. I just hope my neighbours were also on drugs, I've been told I laugh and mumble in my sleep when I'm on endone.

Woke up the next day and basically dozed until mum arrived. Eventually I was sent back to the stem cell room where I was told they not only got the five million they needed, the actually got 8 million. So that was wonderful news, and meant I just had to have the tube taken home and then I could be on my way. Taking it out was much less comfortable, though more straightforward. There was no local this time, she just took out the stitches and pulled the tube out. The latter was probably the worst part of the whole ordeal.

It was strange leaving the hospital, I'd kept in fairly good spirits the whole trip despite being a bit ill that morning from the endone (presumably). In the car on the way home I think the stress and exhaustion of the two days in hospital hit me, and I felt quite dreadful. I dont really know what I did the next two days, I think mostly a slept and lounged around while my leg healed up a bit. I still have a dressing on it, but I've been out a few times- various coffee's and lunches and rather successful shopping trips. Feels good to finally be able to spend some of my govvy money.

the next thing is a PET scan on tuesday, which will probably take the best part of the day and is a bit of an awkward uncomfortable experience, but nothing so bad and I wont have to be in overnight which is the main thing. Next, is an appointment with the oncologist on thursday to look at the scan results I suppose and start working out the date for surgery. I'm not so much concerned about the surgery as I am about the days I've spend in recovery on drugs in hospital. That'l be unpleasant. However I can be certain my dear family and friends will continue to provide me with incredible support and visit very often and be generally lovely, so it'l be ok.

Despite all that it still feels kind of good to be at the point of surgery. It feels kind of like a milestone. instead of being in between chemo cycles that seem to go on and on, I'm (ideally) having what is left of the primary site removed, leaving two tumours left to deal with instead of three. Yeah, it feels like something be kind of excited about, especially hearing about the PET scans which should give us a good picture I think of what the tumours are up to.

Lets try that again....

VIDEO BLOGS :O

For some reason, I sound here like I have a lisp... I dont think I usually have one. Strange.

Tired! Tired tired tired!

Between Sydney and the beginning of round four of chemo yesterday I was doing pretty well; I got out of the house a lot and saw friends and discovered a new cafe and ate some lovely food. On tuesday of this week we had a meeting with my oncologist to discuss the sydney trip and what our doc thought of the sydney doc's suggestions. My oncologist agrees with the sydney doc that there is no literature to sugest that High Dose Therapy would be very effective for someone my age (I'm a bit old, oddly enough). Basically, we're going to go on as we have been.

In three weeks instead of starting my fifth round of chemo I'm going to have some CT and PET scans, and my doc will have a chat with the surgeons who would be doing the procedure and show them the scans/reports and if they're happy to operate (they wouldn't go near the primary site at the beginning) they'll book a date. Its possible that that wont be for a couple of weeks (they get so busy) so if thats the case I'l have the fifth round of treatment after all in that space. I'd like ti think I'd get a break from chemo after that, but considering I had a four day break between the biopsy and the beginning of chemo at the start I dont think its likely.

On tuesday, the iphone I ordered last friday arrived! Its very exciting. My dear friend Hannah is right, owning a smartphone immediately improves your quality of life. Its excellent and very pretty. And matches my macbook beautifully.

I started chemo yesterday with lots of antiemetics and my accupressure wrist band, and so far I haven't had any nausea which is fantastic. Maybe its the wrist bands after all? Or maybe its the iphone!! Because I'm going to get the stem cell transplant I'm in a special little room down the end of the treatment room with the others getting the process. I saw one today, as well as a similar process yesterday. People seem mostly to sleep through it. They got the cells all in one go, and the guy was much older than me, so I have high hopes that it will be just the one 5 day procedure.

About half an hour ago mum and dad came home with a lovely digital slr camera. I'm really looking forward to having to energy to play around with it. It's an ideal hobby for me to take up- easy to practice and work out and play with and doesn't take a lot of energy. And its creative, which is something I miss.

But yes, I'm still eating, though I'm extremely fatigued tonight. I was using my iphone for internet for the last 4 hours because I didn't have the energy to pick up the laptop sitting on the coffee table by the couch. After snoozing on and off all this time I'm sitting up and chatting and blogging and everything. But still very sleepy. I hope this is as bad as it gets this round (not likely, but it'd be nice).

Hoping to be up to having visiters a bit earlier this round! And maybe if there are a few days free before surgery a brief trip to adelaide if jane isn't too sick of us.

Hope everyone out there is well and happy and living their lives and everything xx

Sydney

I am heart broken. We went all the way to sydney (because it so far from home...) and we were all too tired after the dr appointment to get any shopping done :/ Most disappointing. It was a very early morning for me, we left at 7 30 and reached the prince of wales hospital at 11:10, 5 minutes before our appointment was scheduled. Naturally, they were running late so we were waiting a little while - but not nearly as long as at home. It was alright though, I just snoozed on a couch trying not to notice how dirty the hospital looked compared to TCH.

I quite liked the Dr- he was informative and upfront and not patronising like so many dr's. He clearly knew his stuff.

He doesn't think High Dose therapy is appropriate this round and should instead be used if the cancer does wind up coming back. This is quite a relief- though of course his opinion isn't the deciding factor it really does sound like it wouldn't be very useful at this point. He thinks surgery is a definite yes, as is radiationtherapy. Surgery would be asap after I finish the fifth round of chemo. Radiationtherapy would be (this i all in his opinion of course) over an extended period of time to really eliminate the bone metastases.

However, because this is much more common in pediatrics, he's going to consult pediatric oncologists in the hospital who have more experience in the treatment (its treated the same way across age groups) and will call us later this week or early next week. This fits well- means we'll have everything he can give us before I go back in for chemo and see my oncologist here. Then I suppose they'll start making a decision as to what they think is the best way to proceed.

Getting back to normal again

Well, it's a new week and I'm feeling much much better than I was last time I posted. I dont have a lot to say, other than I'm feeling like myself again and energy is improving and I'm not sleeping 12 hours a day anymore. Got out of the house a bit over the weekend, seeing Source Code (pretty good, do recommend) and then a failed shopping adventure on sunday (my stomach was not in the mood).

Next tuesday I'm heading up to sydney with the parents for an appointment with an oncologist at the Prince of Wales Hospital up there for a second opinion. Maybe they have some magic cure they're keeping quiet about. Fingers crossed. Other than that and an appointment with my own oncologist sometime before that (should book that...) I dont have any medical stuff for two and a half weeks, which is wonderful. :)

And then there are days...

when all you can do is sleep, cry, watch bad television and remember that no matter what you are loved.


You just have to think of all the people you have in your life, all the positive things they bring to your world.

Focus on the things you will get to do when you are better and how much more you will appreciate them because of what you're going through.

Remind yourself, that though there are hard times - horrible times - it is still time, here, with the things you love and that is precious. Chances are that you will get better and you will have lots more time.

Though there are potential losses, and big ones at that, there are ways around them and there is no use crying over what you have not yet, and may never lose.

Dont worry about the transplants or surgery or next round of chemotherapy, think of the 2 and a half weeks you get to spend with your friends and family and the iphone you intend to buy with government money.


Mum's right. I do feel a lot like Frodo. But I get little holidays. And better food. And prettier feet. And soon, an iphone.

NNNgggrraaawwwr.

Its day one of this cycle and being back in hospital. It was gross. Hospital is gross. Chemo is gross. But it was also kinda short. The wonderful news is that I dont have to be in hospital till 3 30 tomorrow and then 2 the next day. I had three drugs today and only have one that doesn't take long tomorrow and the next. Yay :) I didn't get my own bed, which is understandable since i wasn't there long and apparently there was someone else there even younger than I with family there so its. I would have thought I'd feel better to see someone close to my age on the ward rather than these old and very calm people, but I cant say that seeing other young people in my position brings me any joy.

I'm mostly just very tired and dizzy with this "cloudy" or "thick" brain sensation I'm sure we've all experienced but cant quite explain. Though my tummy feels a little funny I think its mostly because the tape and adhesive things they put over and around my port (I may just just up a picture so you know what i'm talking about) smell like hospital and makes me hate things.



We're trying these acupressure antinausea wristbands [pictured] which I've decided DEFINITELY WORK so at the very least I oughtta get some placebo effect. There is also the usual array of anti nausea pills and pills to make sure my highly toxic treatment doesn't destroy my insides. Except this time minus the lorazepam, which was helpful before for countering the effects of the steroid like pill and the anxiety of hospital and sleeping etc, but I really shouldn't get too used to the benzo's.

After the chemo we had an appointment with my haematologist. He's really great; very clear and informative and personable. he was there to tell me about the autologous stem cell transplant. Turns out a treatment option I was not previously aware of is being considered, and in his opinion really should happen. If it really decreases the chances of reoccurrence (which is higher for me because its spread to bone in places) I am all for it- but its a little scary sounding. They are considering whats referred to, quite simply, as High Dose Chemotherapy. And not just like what I'm having now which people keep referring to as "aggressive".

Remember this is a maybe at this point. Not to sound frightening, but its essentially a does that will utterly wipe out my white blood cells and if I were not to be in hospital would be fatal, but its also found to be great for completely eradicating cancers like these. And since I'm young and all that, I will bounce back just fine. But I'l spend 3 to four days getting this really strong chemo, then three or four weeks in a special room at the end of 6B, which is essentially like a bubble. I'l have a pretty poor immune system see, I'm not sure how it works with nurses and things but if this DOES happen dont worry, I'l have SOME means of internet access. And I dont imagine there'd be much visiting at first while my bone marrow essentially grows back.

So an interesting day. I'm really tired. Not sure if thats more the chemo drugs or the emotion and energy spent on being in hospital and finally having a health professional acknowledge that there is a perfectly real possibility this wont be over after these chemos. Which, as it turns out there are 5 of now, and then all my doctors will get together and reach a decision as to what treatment would indeed be most effective, and after whatever they decided probably another four chemos.

I expect the next post will at the end of the week sometime when i start to recover.

Hope everyone everywhere is doing well,

lots of love x

Calm before the storm.

Though I only have one more day to enjoy feeling like normal, I'm feeling really good. Thanks to a friend I've discovered the blog of a girl called Jess who was also diagnosed with cancer at 19. Unfortunately for her though, her cancer came back after her initial surgery and she passed away this year at 24 years old. Though my diagnosis is not terminal it was still very inspiring. She was very intelligent and funny, and... well what can you say about someone who lives a full life full of love for 5 years knowing they wont make it to 30? Amazing.

Its also nice reading about someone else's experiences with chemo. She had a cycle similar to mine in structure (bad chemo week, immune system down week, good week) though of course she had a very different and much more aggressive cancer than me and naturally different drugs and she had to move to brisbane for her treatment. Of course its heartbreaking reading the blog of this girl who knew she was going to die (and did die), but it has been... I dont know. Positive somehow. I've gotten a lot out of it. Not sure what. Strength? Something like that.

Besides the thought of finishing chemo and being better again I have something to look forward to now- I have decided to do a Suicide/Mental Health First Aid course at some point in the future. However, my chemotherapy puts a limit on my availability which means I probably wont get to do the course I want, or wont get to do it for some months. However, as a friend said on twitter it's a goal that even if it's later this year or next, I know will help people & I will find it stimulating. And since It will go for a maximum of two days (really, probably only a matter of hours) its achievable. I'm excited. Its been something at the back of my mind almost a year, and it'd be wonderful to achieve something so positive this year thats completely separate from cancer and hospital and about helping other people better.


So, I think I mentioned the stem cell thing in the last post right? I'l recap then I'l explain that whole thing better. Next week I have three days of chemo with three different drugs. Ones pretty strong. So I'm anticipating feeling pretty nasty afterwards. At least I have many hundreds of dollars worth of drugs to help take the edge off? Hm.
So after that, I'l be recovering, and then from days 10 to 14 (just as I start feeling better!) my immune system will be lowest. So that will be thursday to sunday of the week after next.

The week following that will be the third and best week just before the next (five day) round. During that week I'l be having an autologous Peripheral Blood Stem Cell Transplant. But what does this mean??? I didn't know either so I found out. Autologous means I'm both the donor and the recipient. I'l be having three or four daily blood tests to make sure I'm recovered and have lots of stem cells popping up in the post chemo recovery frenzy, and then I'l have the procedure. Which sounds a bit gross and tiresome. I spend four to six hours lying in a bed with a catheter either in my neck or chest (yuck) from which a whole lot of blood is taken out and run through an amazing machine which takes out the stem cells, and then pumps it back in again (so much yuck).

Why?

Chemo works by attacking rapidly dividing cells in the body. This includes hair follicles, the lining of your mouth, cancer cells -and bone marrow. Now, you can do without the others doing so well, but you need bone marrow. In cases of more aggressive chemotherapy, you can wind up doing a fair bit of damage to the marrow or just not have much left. So ideally earlier on in the chemo before that happens you take out either some bone marrow or stem cells (thank goodness I dont have to have a bone marrow transplant. UGH.) to keep frozen just in case.



And here's a picture of me in the brown wig (non facebook people haven't seen it yet) and a cute hat from forever new. Not looking sickly and pale somehow makes me feel less sickly and pale :)

I'm eating custard right now so I might call this post "Custard"

Been really well this week. In fact, if it weren't for the fatigue, I think I'd be feeling physically better than I have all year. I think I have greater use of my lung than I have in a rather long time, and its nice not to be coughing and panting all the time. I've lost some weight, though the way I'm eating right now I'll have put it back on before monday comes round. I've made my way through a fir few foods I was missing a lot. Its nice.

Back into treatment on monday, but just for three days rather than five. Its three chemicals this round (like the first time) and they're meant to be a bit stronger than the last lot I think. So I think I can expect for the nausea to last longer, even though its two less days. After day 14 (when my immune system is recovered) I'l have to have daily blood tests for a few days leading up to a stemcell remove-ee procedure. Sounds gross, they take out a whole lot of blood, take some stem cells, then put the rest back again. I never thought I had a problem with blood, but there is something just yucky about the whole idea. Apparently it takes a few hours and I may need a second internal port like thing put in to access the right blood. its all a bit involved, and in the middle of my good week! Ahhwell, it apparently important to have them as an option if there is blood production related problems further down the road. So next rounds good week may not be as good as this time, and I may not see as many people as often next round.

Chicken and mandarin

Well, its been a rough weekend recovering from last round chemo. Today I'l be brief as I'm tired but want to keep people updated. My phobia of needles has disappeared and instead I now have a horrendous conditioned response to pills. That was a problem in my recovery, as when you're sick all the time you cant eat or drink much... and so become very dehydrated. I had to have a litre fluids on saturday, which helped and today we approached another hospital visit, but sleep an drugs helped me get some waterAND food down. I had chicken, and then polenta. Chicken and as it turns out mandarin juice are great for the flavour problem (things taste really salty, as opposed to the usual chemo metal mouth).

My hair is very thin so I actually look properly like a chemo patient now, and am continuing to lose weight. However as I recover my physical strength my mental fortitude slowly returns in the face of more treatment in a week and a half. Tomorrow through to sunday are the days my immune system will be at its weakest, so if I do feel up to company, please please do consider any colds or coughs and stuff.

Day time television is driving me crazy. No, not the oprah or infomercials or constant runs of Friends (a little is enough) not even seeing the main stories of the day over and over and over and hearing politicians say silly things over and over- its the FOOD. EVERYWHERE there is food. Im going to update my "When Im better Imma Eat:" list and find some list widget or something and attach it to my blog. I cant wait for pancakes and huge burgers and pasta and ragu and wagamama and green curry and tofu and black bean sauce and mongolian lamb and pumpkin salad and toblerone cheesecake and ahhh... at this point I can feel my lorazepam hitting me its time to go to bed. Goodnight

Tired

Sorry I'm failing to get back to most people. Not been online properly for days. Been a difficult week and I'm still recovering. Will get back to you soon xx

Back to chemo

When we got to the hospital yesterday, there was a lot of confusion, as we thought i was meant to be an in patent over night and then out patient the rest of the week. My dr had somehow failed to book me in as an out patient, which caused the nurses a bit of grief, but they very kindly booked me in for a whole week as an outpatient. So I didn't have to spend a single night in hospital! Which is fantastic. Though being in the treatment room with all the other cancer patients emphasises how young I am, the prospect of spending a whole week in hospital was abysmal.

It wasn't an easy day; due to the confusion I started chemo a bit late and so was the last patient to leave, I didn't sleep well so was very tired and therefore extra emotional. But I got a good nap in.m

Nausea was an issue last night, but I think it was more the memory of my first round of chemo than this round itself as i'd had a lot of anti-emetics. I feel better this morning, not wonderful but a bit better. Hopefully yesterday was the worst day, visits are a bit more difficult. Cant really have more than one or two as its an open space and if i'm in a chair as opposed to bed there is no privacy and little space.

Ch-ch-ch-ch-chaaanges..

I shaved my head! And I feel much better for it. It was much too depressing and messy watching it fall out, and I dont think I look half bad! Besides, I now have two rather nice wigs; a brown one bought from the cancer council wig place and a GORGEOUS pink shiny one borrowed from a family friend. I will post photos. Plus, I now have heaps of those scarvey things I wear (you know, the ones from the folkie and tree of life) which are great, and this amazing hat (thank you bethany, tess and bethany's dad!). AND a lovely red beret from Hazel. So, I'm pretty well covered (hah).

We saw my oncologist on thursday, who, after calling the solar panel people doing his house and sharing with us all his credit card number, told us the next round of chemo begins monday week. This round will last five days with only one night spent in hospital (thank god). The other days I'l go home and come back for the day and sit in the Treatment Room with lots of old people. This round has different drugs to the last, which is lovely, as these apparently dont count nausea amongst their side effects. Though I'm quite pleased with the weight loss, I really am looking forward to getting my appetite and appreciation for food back so this is quite a relief.

So, chemo is every 21 days for 12 weeks. After that, the main tumour will have shrunk down a whole lot and the little ones will be practically gone. However at this point it is expected that I'l have to undergo some surgery to remove this little bit left in my chest (as at this point it will no longer be responsive to chemo) and radiotherapy to zap the little one in my arm and possibly spine- though not much has been said about that one. After this I get even MORE chemo. Better safe than sorry. Assuming this all goes to plan, that will be the end of my sarcoma.

On that note...

After the below rant it strikes me I should also say something about how I am. I am not nearly as nauseas anymore, but still so tired. I have a new sympathy for friends and acquaintances with Chronic Fatigue Syndrome- its exhausting being too exhausted to do anything for yourself. Ventured out with the family to see Paul today which was fun but people are so loud and they smell.

There was an oddly large amount of hair on my pillow this morning. So, that part has begun. I think I'l have to shave it off before it falls out too much its too depressing watching it go.

Before I start seeing you all... I have to tell you. I am now extremely sensitive to smell. I BEG YOU DO NOT wear perfume or smellable deodorants or aftershave if you are planning to come near me. Please. With sugar on top. OR those horrific dry hand washy soaps they have. Especially the ones they have in hospitals. They make me hate the world. And throw up.

But yeah I think maybe friday I will be up to social stuff. And I think I am planning on watching gone with the wind, with FRIENDS for the first time. because if people wont do it when I have cancer then they never will. ...Maybe I shouldn't rant about the badness of the idea of cancer and then shamelessly use it to guilt my friends into doing what I want. Maybe.

The Idea of Cancer

I dont think the reason behind the title of this blog makes sense to a lot of people at first glance. And I think its important that it does. You see, I'm someone who is lucky enough to be able to say, that in my particular situation, the idea of cancer is probably more dangerous than my cancer itself.

I am not being a fool- I do not pretend there is no danger or that the coming year is going to be difficult for myself, my family and those close to me. But in reality, I have to be incredibly grateful I do not have what one immediately assumes when they hear the word "cancer". Which is in most minds a death sentence. My cancer is not going to invade and destroy the cells of my organs, it is and will continue to respond well to chemotherapy and though its quite common in the kind of sarcoma I have, it is not in or near my brain. Or even my CNS.

When you hear the word cancer you freeze and think of all those episodes of house where the cancer came on so quickly or so strong and the chemo wouldn't take and the transplant was difficult because they were a smoker and the blood type was rare etc. Or, you might think of young children with leukaemia or the elderly with lung cancer or bowel cancer or something horrible. Or women of any age with cervical cancer who lose their fertility. It is horrible and it happens all the time and I am so, so lucky that none of those are me.

You think of a growth in my chest pressing against my lung (but in no way at the time of diagnosis crippling me) which responds well to chemo and you consider my age and location and lack of complications and you dont feel too bad. As soon as cancer is involved the feeling changes. Its scary. Even though I know this the word freaks me out, and I'm sure without the here provided explanations it would freak a lot of you out too.

Yes, I am very sick. Yes, I wish I wasn't. Yes, chemo is horrible and I hate hospitals but the idea of cancer is worse than what i have, and that is why I am lucky, really.