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.