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.