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I think it must be the time of year. It was around this time, two years ago, that I was coming out of my cancer treatments. Since then I think I’ve gone through a number of emotional/mental stages, particularly denial. I’ve revelled in denial for a while now. I just didn’t want to think about it or remember a single thing about the whole “C” thing I had to deal with. I treated it mostly like a bad dream, letting the memories of it all fade away (which hasn’t been to hard what with the brain fuzz chemo induces and other anti-anxiety slight-amnesia-causing pills I was prescribed). Denial has been a nice phase to go through, certainly a whole lot easier than the severe medical anxiety I had for a while when I thought I was going to up and die at every little ache or twinge my body had (It’s a heart attack! A blood clot! Another cancer!).
But now, I think now I’m almost ready to look back and remember. Look back and say I did that, it wasn’t just some vague dream or tv show I watched.
One of my first steps in looking back, was re-reading for the first time the journal entries I made on my LiveJournal page, both public and private, that I made during that year.
Good news- It was interesting to read and I really had forgotten so much! Bad news- that very night after reading through my posts I had a horrible chemo drip hospital nightmare. Ugh.
But it was an interesting read. I wanted to put together my favourite “moments” into one place, here, that tells my whole treatment story, as a little momento, for myself and also others who have gone through anything similar.
This is going to be long and be filled with Too Much Information 😉 So here we go…
20th Feb 2008- From Private Post– About a month ago I found a lump in my breast, I noticed cos it was hurting. I waited for about a week to see if it would change or go away, and it didn’t, so I saw my doctor. She basically said it was probably just a cyst which is no problem and pretty common, and said if it hasn’t gone away within a couple of weeks to go get an ultrasound.
Anyway, it didn’t go away, so I went in yesterday for the ultrasound.
It turned out that the ultrasound doctor was pretty sure it’s not a simple cyst, so he sent me for a mammogram, and also did a biopsy (which was all in all a very horrible painful experience).
Anyway, it’s EXTREMELY unlikely to be anything really bad at my age, and no family history of it… but I won’t know until Monday what it is, and what it will mean. If it’s not a cyst it probably won’t just go away on it’s own. It’s likely it’s a benign legion or whatever, but might still need surgery.
Anyway, the whole thing has had me pretty stressed out, and regardless of what it actually is, it’s uncomfortable and aches on and off every day. I’m used to being pretty healthy most of the time too, so it’s a bit much for me going into a clinic and having half a dozen people prodding and poking and cutting and scanning me. And I’m not really worried about the outcome being bad, but it just sucks that it’s come up at all while I should be working on moving house and planning my wedding and other projects for this year.
25th Feb- From Private Post- Well… results are in, and it looks like the cells are abnormal/cancerous. Got another appointment on wednesday to specialists…. Gotta call my mum now and tell her. I haven’t even told her about the lump yet… I was waiting until I got the results so I could have said “hey everything is ok” and not worry her… 🙁
27th Feb- Private Post- I just had my big meeting today. I swear I met so many doctors and had so many appointments made and so much information overload!!!
I’m booked in for surgery in two weeks, which is great, get it done nice and quick. It will be the pathology of the lump after surgery that decides the ongoing treatment, but the most likely outcome is they will give me everything they’ve got.
They tend to do this for younger women with BC, for two reasons… one, we are healthy enough to take the harshness of the treatments, and two, to make sure it’s 100% gone and done with so the rest of our hopefully long lives will be cancer free. So it is likely it will be chemo, then radiotherapy, and then maybe more chemo…. And probably IVF thrown in before that in case the Chemo kills my ovaries…
And also checkups every quarter for the first few years, then every year after that for the rest of my life. And a scar. And a hair cut. All going well, that’s it. Which strangely enough doesn’t feel all too daunting at the moment, but I might just be numb from all the information attack.
David and my mum both came along with me today. Everyone’s been so wonderful, so I’m feeling very positive.
So yeah… life changing, but dealable.
As for being brave, well it’s not really that bad once you’re on this side of the fence. As a healthy person “cancer” is the big bad scary that you wonder how people go through. but once it’s with you, well you still feel just like a healthy person, you just have to get some stuff done… It doesn’t really seem that big of a deal at all. The system really helps with that though, they’ve got so much support and make everything so clear and easy to follow.
As for hair, hehe… Well most of you know I’ve been growing and strictly caring for my hair for 5 or so years now, trying to reach hip length (it’s currently waist length)! But even before I found out about this I was starting to get sick of it and the constant hassle of it. I have always wanted to try out a Pixie cut but never had the courage to get it done
2nd March- Public Post on LJ- It was with some consideration that I’ve decided to make this public. While it feels as though this is a fairly private thing to be dealing with, I have never been good at keeping secrets, so I’ve decided to just let it out and make this announcement, both for myself, and for raising awareness that could potentially save lives.
During the last week of February, I was diagnosed with breast cancer.
The good news is that because it was found early it is small, treatable, and is being handled by some wonderful specialists with all care and haste. A full recovery is expected within as little as a few months. I will be in surgery in week to have the lump removed, and further treatment (chemo, radiotherapy) will be decided when post surgery pathology results are in. Everything from here on is taken one step at a time, with many possible outcomes along the way. But because I am young and healthy I have the best prognosis for a quick and positive outcome for the whole treatment.
7th march- Public on LJ- I had a nice message from one of my childhood friends today. She was diagnosed with ovarian cancer last year and went through treatment (and is 100% cancer free now, yay!). We were born on exactly the same day, and were best friends through primary and high school. We still find it funny how much we have in common 😉
12th March- Publich post on LJ – Hey guys, just a quick note to say surgery went really well. Can only type one handed still so will say more later. Big happies is an axillery clearance of lymph nodes wasn’t needed according to the prelim. test, so no bad side effects from that. Fingers crossed post surgerty pathology all comes back negative too so no re-surgery is needed. Stayed in hospital last night cos i was all pukey from the anasthesia but am home now feeling much better. Couch potato duties for a week then next Drs appointment on 19th for decisions on further treatment.
13th March- Private post- I’m feeling exponentially better this morning. Even the slight pain of the wound is barely comparable to the aching it was doing before, and just the peace of mind knowing it’s OUT is so wonderful. And there’s probably a little swelling that will go down, and some more changes to come, but my, ahem, profile, hasn’t changed too much either, I doubt you’d even notice with a bra on, so yay!
The funniest thing, I had to share, is my nipple is bright turquoise They inject some dye in during surgery for tracking, and you can see it through the skin, particularly the nipple, lol. It’s going to be that way for a fwe more days Along with the purple marker drawings from the sentinal node scan, I kinda just look like I passed out at a party
Oh, and I’m radioactive! At least maybe for a few more hours… They inject radioactive stuff in as well for tracking. It’s only got a 6 hour half life, so doesn’t last more than a few days, but I thought it was pretty funny too.
19th March- Private Post- An interesting side point. Did you know that what Chemo actually does is inhibits only fast-dividing cells from growing? That’s why it kills off cancer, because it is fast dividing, and not very good/stable at it either. But that’s why you’re hair also falls out, because it’s made of fast dividing cells.
As for natural remedies, did you also know that at least one of the drugs in the TAC formula I’m getting is based on a chemical found in the roots of a certain tree? Pretty cool I thought.
20th March- LJ Public- Thought I’d better do a bit of an update. I’ve recovered suprisingly quickly from the surgery. It’s still rather sore, apparently will be for weeks due to the cutting of some nerves or some medical whatsit I don’t really understand. But all the dressings are off and the cut line is very clean and neat, no sign of infection, and any stitches are internal and of the dissolving type. I can move my arm fairly freely now, with care.
The even better news, is that I got all my pathology results and there is no re-surgery needed. Due to the kind of cancer it is (Grade 3 = nasty aggressive type, which was the only bad news), we’re really super super lucky that there was no sign of it in my lymph nodes. For this type of cancer, remission rates are normally fairly high, but the lack of cancer in the lymph nodes is a really good sign there. For all the Doctors know, it might all be gone just from the surgery, but because any tiny little cell left somewhere that they can’t find could end up causing problems, I’m going to be doing chemotherapy.
It will start in roughly 6 weeks, and go for 4-5 months. Yes, I’ll lose my hair, which is the most advertised side affect of chemo. I’m going to have some fun with it while I still have it though, going to go to the hair dressers and try out some really funky hair styles and colours over the next few weeks, will post photos!
The only other notable side affects are fatigue (whole body fatigue, like you’ve run a marathon apparently, muscle aches and all). This only lasts a few days though generally, for each of the three week cycles. It’s basically in for one day of chemo, out for three weeks, repeat 6 times. So I’ll probably feel like crap for one week out of every three for the next 6 months, but that’s all. We’ll see how it goes anyway.
30th March- Lj Public- I’m kinda grossed out by my surgery wound at the moment… (read no further if you’re squeamish!)
So, it looked great at first, no stitches, so neat and clean. All the stitches were under the skin, disolving type. Yay right? I thought so… I was so wrong! It’s so gross! As they dissolve and the flesh is healing, it sort of… rejects the stitches… I’ve got a little line of pimple like bumps coming out of my skin along the cut line with plastic stitching wanting to burst out like a white head pimple, ugh!
There are only about three bad ones that are noticable little lumps, and the one at the very end of the line has gone all red and icky and the stitch is fully out and on the surface now. I’m going to get my GP to check them out on monday morning. Apparently it’s fairly normal, but really uncomfortable! And they are all on the high end of the cut, being the most visible end too. So I’ll probably end up with the low end barely visable, and chunky ugly scariness sticking out the top of all my clothes at the top end of the cut. I don’t care all that much about the scar, but it’s just… so… TYPICAL.
11 April- LJ Public- Thunderbirds are go! It all begins today… I’ve been enjoying a few weeks of normalcy (apart from my wound going a bit icky and worrying me), but my time is up.
Without going into too much detail, I’m doing a round of IVF to protect fertility from the chemo, before chemo starts.
I was told becuase I’m doing chemo that I get special emergency treatment. no booking and waiting, except for on my own body when it’s ready. So as soon as it is, I give them a call and IVF begins. IVF will go for about 2-3 weeks, after which chemo will begin the very next day. Chemo will go for about 4-5 months, after which radiotherapy starts straight away. I don’t even know yet how long radiotherapy lasts….
Anyway, Today was THE DAY and I’m just waiting on a call back from the doctors then it’s all go go go on the rollercoaster of meds that will be my life for the next year. I am feeling pretty shaky about the whole thing all of a sudden, now it’s actually here.
I wanted to make it clear, the general opinion of all the doctors, is as far as they know I’m probably already cured. The entire cancer was removed in surgery as far as they know, and there were no signs it had travelled anywhere else… The only thing is with medicine these days they have no idea where it came from, why, whether it will be back, and no way to test for any tiny little cells of cancer anywhere else. Hence the chemo. “The worst preventitive medicine imaginable”TM.
Anyway, I guess I’ve been sort of cruising along like everything was normal for the last few weeks. And everything IS normal… really, in the scheme of things. And I’m sure the treatments won’t actually be that bad when they are happening. I think I feel today like I felt when I was very first told I had cancer…. but once you’re in there and dealing with it and going through the process it only becomes easier.
Sorry if this falls into the realm of Too Much Information. :S
Wish me luck. Apparently i’m about to become a ball of raging homocidal crazy hormones for the next couple of weeks. Prepare for Teh Rantage.
16th April- Private Post- Yep, only been on all the weird hormone meds for a few days now and I’ve turned into angry GRR type Selina. I kinda feel like the Hulk or something, I’m going to turn all green and… Selina… SMASH!!! And I had to give myself a needle today! I’ve never had to do that before and it sucks. it didn’t hurt at all or anything but my brain just can’t handle it! And I have to keep giving myself needles for like another two weeks, every day. GrrRH!!!
And I have to do my accounts, but I don’t wanna, I don’t feel like doing anything, but when I do nothing I just sit and FUME and feel BORED and get ANGRY at being BORED, and get ANGRY at my to-do list not getting SHORTER. *pant pant pant*
23rd April- Private post- I just want to say, OW, my ovaries!
I’m half way through my IVF cycle to save some embryos in case chemo damages my ovaries, which isn’t a huge risk considering my age, but not a risk I wanted to take at all.
Anyway, it’s nasty! All the injections and blood tests and ultrasounds (which are more unpleasant than they sound), and the hormones making me crazy. It’s working well though, which is good cos I only get one shot at it. The ultrasound yesterday showed I’ve probably got 10 good eggs going on one side and 7 going in the other… which to me was like “no wonder my ovaries feel like they are ten times bigger than they should be”. I’m also stimulating higher than they’d like, but with cases like mine they push through to finish anyway since there’s only one chance to do it. I’m all achey and vaguely nauseaus all the time. It’s a really odd sensation to be able to sit there and actually sense your ovaries inside you, feeling all swollen and sore
Lj Post- I just did a quick tally today, and I’ve had at least 17 needles since finding out about my breast cancer (well, two were before hand during the diagnosing tests). I just had three in the same spot within the last day which prompted me to make the list. That’s not all too many I guess for a 3 ish month period, but considering before that I was complaining at having to have three needles within 5 months for my gardasil vaccine I’m doing pretty well with my needles.
I just had a heart test today to make sure my hearts in tip top shape for chemo. Chemo has the potential to do bad things if you all your organs aren’t 100% to start with, so they check your heart, liver, a few other things before hand to make sure you’ll get through chemo ok. So a quick injection of radioactive material later and my heart is all good (STILL no super powers though, how much radation do I need?!)
Chemo should start next week, except the nurses got my timetable screwed up. They first made the appointment for this week, which I couldn’t do cos I’m doing another treatment first, I told them this about 5 times and they still called me today to see why I didn’t show up… sigh…. Anyway hopefully they will get it sorted and get me in for next week instead like they were asked to from the beginning…
6th May- Private Post- IVF was bloody hard, not to mention the fact I WOKE UP during the egg pick up procedure. Hello anaesthitist what the heck am I paying you for?! It was pretty bloody painful, but it was literally seconds before they finished then they pumped me full of pain killers again. I fell asleep again but I remember crying.
Apart from that my operation site in my left breast is still giving me pain pangs and aches on and off. I wouldn’t mind so much except it freaks me out cos it sometimes feels like the same pain the cancer caused. Normally they try and get patients into chemo within 6 weeks of their op. I’ll be pushing 9-10 weeks, and it scares me, even though I know realistically it’s probably all gone already. I had a nightmare the other night that I had found another lump, in a different place, and it was in both breasts. It was so vivid. And it was the kind of dream where you dream that you wake up and check again and it’s still there, repeat X 5 before you really do wake up and can check properly, and keep checking for days after cos it freaks you out so much.
My last blood test on monday, in my poor right arm that was still bruised from the previous one, the nurse couldn’t get ay blood out of the vein without jiggling the needle all round. It’s still aching today. I’m sick of needles. And I’m sick of everyone saying how inspirational I’m being, cos I’m not. Any fuzzy optimism I was hit with in the beginning has all worn off and I’m already sick of it and I haven’t even started chemo yet.
11th May 2008- Public Post- Thank you for everyone who’s been thinking about me during my treatment and following my progress here. I had my first chemo treatment on friday, and now it’s sunday it’s going ok so far. I guess I feel in a way like I’ve just got an icky flu or cold to some extent*. Tired mostly, a bit absent minded and listless. The nausea is the main thing so far. I feel like I should be rattling with all the anti nausea tablets I’m taking, and even with them all, they just sort of keep it at bay. If I let my mind dwell on it or don’t keep focused on other things it can start feeling really gross, but normally is fine. The other related chemo side affects are ehanced sense of smell, dry mouth and changed taste bud sensations, which all add up to making food a bit icky at the moment too. I haven’t really lost my apetite though which is good, it’s just a bit confused with all the other sensations at the moment!
The actual day in the chemo clinic was, honestly, rather bad. For those people who say “it’s just like a big lounge room”, well, I think the only thing they have in common with lounge rooms is a few reclining chairs. It all says hospital ward to me, with all of us hooked up to our beeping machines.
Unfortunately my day didn’t run as smooth as could be hoped. I had a nasty reaction to one of my chemo drugs. It flared up really quick and was a bit scary, but is a relatively common, if unwanted, side affect. Anyway after giving everyone a bit of a scare, as soon as they stopped the drip I went back to normal, and they gave me even more pre-med drugs and antihystamines, and “re-challenged” me with the drug and it went smoothly the second time, so shouldn’t be a problem again. But I did get a private bed out of the experience, yay.
As for hair… I’m considering biting the bullet and gettting a buzz cut ASAP. I was running my fingers through my already short hair today and, already feeling a bit fragile, realised it’d probably rather freak me out to actually feel it come out. As scary as going the buzz cut is, I think falling out hair will be worse… so we’ll see how brave I am over the next week (hair loss is expected anywhere between 10-21 days in the ol’ textbook). Also, with my frequent napping at the moment, at least I wouldn’t have to worry about crazy messy sticking out every which way hair if I crop it all off!
As for the old text book and dr’s advice and so on, it appears I will probably feel a few different forms of “icky” for the next few days, and then should feel ok for the following two weeks leading up to the next dosage, which would be nice!
Oh, and the buggers snuck this one up on me, I am STILL going to have to give myself needles for each cycle as well! Only one per 3 weeks now, but still, more ick. I got David to give me the one last night, wasn’t feeling up to it. They are still only tiny ones, but still feeling like a big ol’ pincushion. Also they decided in the chemo ward to put the canula into the side of my wrist, directly under the bottom of the thumb on the side… OW. Not a good spot. I must produce better veins to get through this!
All in all, certainly not a pleasant experience, but tolerable. anyway that’s about all the ins and outs of my chemo a whole 2 days in. Only 4-5 months to go!
* And yes I’m making sure I don’t actually have a cold or flu at all, it’s the most important side affect to watch out for with this chemo. With dropping white blood cell count infections can hit hard and fast. Although telling a chemo patient to watch for symptoms of feeling “unwell” is rather laughable really! What, unwell, as in different to nauseas, fatigued, and generally drugged out? RIIIIIGHT. That’s what the thermometre comes in handy for. I’m just keeping an eye on my body temp as the main indicator there on Dr’s orders.
13th May- Public Post- So far so good. A few more days in now and I’m feeling much better. I’ve finished my supply of “compulsory” anti nausea tablets, and have a decent supply left of the “voluntary” ones if I need them, and haven’t actually been sick, which is actually quite good.
I think the actualy day in treatment and the shock of the reaction I had really shook me up a bit, and for the weekend I was just thinking I COULDN’T go through this every three weeks. But I’m doing much better now, practically no nausea already, the only thing that’s bugging me is my right arm is aching and aching, which is annoying being right handed and all. I guess it’s those dozen or so blood tests/canulas/needles that have gone in there over the last few months catching up on me. The follow up needle after chemo I had is also I think causing mose of the aches now too, apparently it forces immature white blood cells out of your bone marrow to stop your cell count dropping too much… which causes the bone/muscle/head aches.
And I figure my next in ward treatment days should be much easier and smoother, and I’ll know what to expect, so fingers crossed. The doctors like to make you feel like you can quite at any time if you really can’t take it. But I’m sure they would do their best to convince you otherwise if you tried quitting, lol. But it’s still a good way to feel like you’re not just locked into all this without a choice. It makes you feel stronger and more in power of the whole thing. Which is another reason I want to shave my head soon. David mentioned a quote from a book he’d read once, something about GOING bald, is ugly, cos it’s something that happens TO you. BEING bald, is a choice, so it’s sexy and powerful. And I can uinderstand that. It’s also, if I leave it until the hair loss actually begins, then i’m just a cancer patient, but if I do it myself now, I’m someone who decided on that hair style, in a way… We’ll see anyway, it’s a big step!
17th May- I’ve learned my first chemo lesson this week. While you may feel well and good, it is another thing entirely to try and ACT like you are well and good. Feeling like I was almost back to normal after the initial ickiness, I tried for a med free day at the same time as going out with a friend and eating far too much far too rich food like I would if I were at the top of my game….
And oh have I suffered for it. So. At least I know now even if I am feeling “normal” I have to remember I am not “normal” and must still be careful. A bit of a sad lesson, but better to feel normal and act careful rather than sleep curled up on the bathroom tiles. Hopefully a few more days and I will at least feel normal again, and that is to be treasured at the moment.
23rd May- My hair has started coming out today. I got it cut short last week, about 1 inch long little boy/pixie cut so it’s not so noticable yet, it’s just if you give it a bit of a tug a bunch comes out. I think I’ll shave it off tomorrow evening, depending on how the rate of loss is going. I also noticed today that my leg hair, which I shaved last probably a week ago, haven’t grown back at all… BONUS!
28th May- Well, that’s it, I’m bald!
I got sick of leaving a trail of hair everywhere I went, and it had begun thinning to the point of seeing scalp anyway, so me and David shaved my head last night.
It’s quite a strange sensation, feels pretty cool in some ways. My head feels SMALLER, and it’s so warm to touch (which is weird because anything that touches it feels COLD!). It’s so smoooooooth. I don’t hate it actually, not that I’ll be wandering around in public hatless though…
3rd June- That’s about how I’m feeling… Schbllaeughh…
My second chemo cycle feels like it’s sort of better but sort of worse. I just thought I was feeling BETTER by this stage last time, but actually probably I wasn’t. I think last time just seemed more intense at first so the recovery felt faster, whereas I’m lingering on this one too much. I don’t want to take my pills… thinking about taking them makes me feel sick, and they are supposed to be anti-nausea tablets, sheesh.
I just feel drugged to the eyeballs. It makes it hard to think straight on even one thing at once sometimes.
I’m actually trying to get motivated. I have orders to do, and I KNOW if I get moving and get to work I’ll feel better, get my mind off the ickiness, but it’s already almost midday and I’ve only just got invoices sorted and printed.
I didn’t get any painting done last month either… the random joint and bone aches aren’t friendly with the sitting and painting. And I’m particularly feeling them in my right arm lately too, with all the jabs it’s been getting for the vampires.
I know I’ll be feeling better again in a week or so, I was feeling just great by the time it came around to getting dosed again last week, but it’s also hard thinking I’ve got to do it all four more times again, and then there’s radiotherapy as well after that. I can’t imagine what it would be like for people who have to get Chemo every day, or week long doses, or all the other forms and cycles they run. Six three week cycles isn’t so bad in comparison. And I guess I’m 1/3rd through already. One more and I’ll be half way done.
It’s just like being sick of any kind, a flu, cold, whatever, for a few days that hangs around and makes you feel icky and down. I’m looking forward to feeling better because I like the rush of motivation you get after that when you go into “gotta catch up!” mode. Just wish I’d get better quicker!
6th June- Yay. Still not 100%, but I can do things with effort now, rather than trying to make an effort and feeling crap and giving up, hehe.
For the “too much information” theme, a quick run down of the side affects that get processed through the system with the form of chemo cycle I’m on-
Days 1-2 after chemo- Just generally out of it. Can walk and talk but not really functioning otherwise. I haven’t thrown up yet, which is apparently excellent! On many drugs to keep it that way.
Days 3-4- Run out of “compulsary” anti nausea drugs, go onto Maxelon. Mouth starts turning into a bizarre fuzzy numb state that can’t taste anything much (I’ve been having three tablespoons of brown sugar on my weetbix in the morning to taste them). Sense of smell starts becoming SUPER sensetive at the same time. Heart races in my chest from just standing up. Nausea still being held back by drugs. I also stink… which I feel is a combination of my own sense of smell, and chemicals leaching out of my skin, or maybe my imagination or not showering enough 😉 Feel generally woozy, but not needing to nap or sleep it off as much.
Days 5-7- Sense of smell and taste start returning to normal. Tummy starts cramping and bloating. This happened last cycle to the extreme, we even tried the ER for some relief at 2 in the morning (ended up going home unhelped after 2 hours waiting, sheesh). Apparently it’s part of the side affects, but I’ve watched my diet this time and it’s been much better. Burping is my joy at the moment (oh the releif!). Start having med-free days, yay! Head is clearing up but still have trouble focusing and stringing sentences without stumbling some words. Nausea is all but gone, unless I think about drugs/medicine/hospital which makes my stomach turn.
Now, I’m having issues with my head. I tried to be with the strong, independant, just be bald thing, but I’m not up to it. Even with hats and beanies and whatever. I went out to the shops breifly with a friend yesterday, and everyone stared and did double takes and stuff as I was walking around, and this was with a beanie on, but of course they don’t really hide the fact you’re all bald underneath completely. Even though I was in pretty good spirits otherwise it was still too much. Temperature regulation is a pain too, my head and neck get so cold, I have to rug up so much and feel all constricted. So I think I’m going to get a wig. Something kinda fun, but simple, that won’t attract too much attention to it. I had a look online and it looks like it’s going to be at least a few hundred dollars to buy a decent one, but if it will keep me feeling good for the next three months I think that’s worth it. I’ve got this bright blue wig I bought ages ago for the fun of it. Even though it’s bright blue, it’s actually decent quality, and feels nice. I put it on last night for a change from beannies, and it felt so nice to feel hair on my head!
I forgot about the aches! 24 hours after the chemo I have to give myself a needle (or get David to do it at the moment since I’m not feeling so good at that stage) to boost my white blood cells. Chemo drops white blood cells, so the needle forces immature white blood cells out of your bone marrow to compensate (which can ruin your bones a bit too if you’re not careful or already at risk). So you get those long bone aches, mostly my thigh bones I’ve noticed aching most the few days after the injection, and then for pretty much the entire rest of the cycle all your joints ache randomly… the third nuckle on my left hand for ten minutes, then my right hip for the next five, then my ankle… like a little roving spot of pain that comes and goes but always reminds you of it’s presence when you start to forget.
19th June- Ah man. The doctors decided they wanted me to start taking my seriuous anti nausea meds the day BEFORE my chemo treatments now as well, and a douvble dose at that… So now I have proof that it IS the meds that make me feel nauseus and brain foggy as well even without the chmeo!! I’m, trying not to focus on it though… I’m building up a serious mental aversion to taking my tablets… I’m trying to pretend that they are mints, lol. Pretending I’m sticking some mints in my mouth while taking them kinda helps. I’m going to buy some actual mints tomorrow as well to suck on just after taking each lot of meds too to add to the brain tricks! And with the fuzziness of my brain at the moment I’m hoping it will be easy to trick. The doctors have also expressed concern about the way that nausea can really get into your mind and become more of a mental thing than physical thing, it’s just the nature of it I guess. I totally believe it too… I can’t watch ANYTHING medical on tv anymore (even Scrubs!!) cos seeing people on drips or getting blood tests makes me feel sick, even during my good weeks.
Bugger, and I just reminded myself that I forgot to get my blood test done today. bugger bugger bugger. I blame the meds! Oh well I can get it done tomorrow morning before chemo… yay two jabs in one day.
9th July- I’m bummed cos this is my third week of my chemo cycle when I’m supposed to be feeling my best, and I’ve been feeling crap, and I think it’s pretty much all from in my head but I can’t shake it anyway. I just can’t stop thinking about my next chemo, this friday, and even thinking about it brings back all the nausea and grossness before I’ve even done it again. I’m back on meds again tomorrow, even before chemo starts I’m on three different meds. I’ve got meds FOR my meds FOR my meds. Pills to stop the side affects of the chemo and more pills to stop the side affects of those pills and more pills to ease the side affects of those, it’s insane.
Over all, the Dr’s say I’m holding up really well. No vomitting so far, blood cell counts have been perfectly on track, weight gain has been normal(mostly fluid retention apparently, phew! I’m putting on a kilo per cycle at the moment!), nose bleeds only slight, everything is running smooth and by the books physically, but emotionally I’m struggling a little. I know there’s not much more to go, but the nausea particularly, and all the jabs, they just do weird horrible things to your brain. And of course the more you try to stop thinking of it the more you do think about it.
And I’m also bummed that my journal shipment was slow, and while I was hoping they’d be here with me by now while I’m in a good week, they probably won’t be delivered until next week when I’m not going to be in much of a state to be hauling them (all 40 cartons worth) into my storage area. Sigh… oh well, after friday it’s only two more cycles, one more after that and it’s only one to go, then I’ll be finished, then radiotherapy, then by hrm… mid october? By then I should be all done and hopefully go without visiting the hospital for more than 2 weeks.
My whole life lately has been dictated by chemo cycles and hospital visits.
Can this year be over already?
10th July- I’ve got my next chemo tomorrow, and now that David’s doing full time work, and won’t be around to look after me during my zombie days, I’m heading off up the coast to my parents for 4-5 days of recovery time! I’m hoping it’s going to make me feel a load better than last cycle too, just being in different surroundings, fresher air, wood fire…. mmm. Not to mention, a nastiness of chemo is your sense of smell becomes SUPER POWERED (NOT a good super power to have by the way). And for the last three cycles I’ve been smelling my home, and not enjoying it. The smells of our household have become linked into the nausea… so not smelling those smells will also hopefully make me feel better as well!
I remembered my blood test today, and my veins are still coping well, yay! I’m trying to regain a positive outlook on it all, but it’s hard to stay positive with nausea, it’s like it feeds on my mental power and turns happy thoughts into wanna-throw-up-now thoughts.
The first few days after chemo are hard. It’s like you simply don’t have any physical or mental ability to do ANYTHING. Even watching TV is hard… Even reading. And at the same time, napping all day, which is the easiest way to get through the tough days as quick as possible, is also hard, and makes me not sleep well at night because I don’t really NEED the sleep, it’s just I can’t do anything else but sleep… So frustrating. Hopefully being somewhere different will also help break up the tedium.
17th July- From private post- I’m having a big fat WAH moment. I hate having my beautiful fairy tale wedding dress and no hair, trying it on was the worst thing ever.
I feel like a big fat hairless useless featureless blob. I’m putting on at least a kilo and a half per cycle at the moment cos of the chemo drugs and starting to lose my eyelashes and eye brows now too.
18th July- I feel like I’ve found a bit more strength to get through the rest of my chemo… It was something my mum said that made me think this… I was telling her about yet another one of my new strategies to combat negative thoughts and nausea (currently by trying to recite the words to Modern Major General in my head as a distraction). She said something about how with repetitive treatments like this it’s important to keep trying new things, different tactics each time to deal with it. It made me realise that it’s not just about trying to be strong and get through one big tough time, it’s like repetitive torture and it builds up, and you can’t face it the same way twice…. you have to find a new way to deal with it every single time. As soon as you use one tactic to deal with it, it’s used up and useless and you can’t use it again, because it does more harm than good because it’s become assosciated with the hardship. I’ll probably never want to hear Modern Major General again, or do crosswords, or any of the things I’ve done so far when I’ve needed something to focus on when my mind just keeps reliving the nausea and dwelling on the chemo drugs running up my veins. It is sort of harder, and easier, realising this. Not only do you have to stay positive, and strong, you’ve got to keep coming up with new and innovative ways to do it!! But I also FEEL stronger now for having realised I’ve been doing ok so far. I haven’t given in, I do keep looking for new ways to keep a step ahead, even if it’s with Gilbert and Sutherland…
29th July- You know, I’m even looking forward to other things coming back that chemo has forced away. Like my period, which I haven’t had since I started chemo. I’m HOPING it will come back anyway, it’s a risk of chemo that it can force some women into early menapause. At my age it’s really unlikely… but we’ve prepared just in case by doing a round of IVF before chemo began, which I think was worth it, because as the doctors said my “ovaries will never be the same again” even if I do go back to normal cycles right away. But it’s strange how you miss these things. I guess it all comes down to feeling like yourself, and feeling like a woman. We might complain about our hair and our cycles and our body hair maintanence, but you miss it when it’s gone!
31st July- I’m killing some time while I try and over heat my body and fill myself up with water before I go and get my day-before-chemo blood test. My poor veins have taken such a beating I’m trying to take care of them and make it easy for people to find them… I’m not really supposed to use my left arm for anything like blood tests, blood pressure, injections, etc, anymore since the surgery, so everything’s been in my right arm/hand, which is not the best for my drawing/painting… particularly this one nurse who gives the WORST canulas, they hurt so much! Most of the others are fine though, only hurt for a moment, but this one nurse…. ugh, hurts ALL DAY. I hope I don’t get her again… I like my blood test people though at the pathology place here in town, they give awesome blood tests, if there is such a thing…. barely feel them at all, they are so good.
Three random, weird, somewhat funny side affects I’ve noticed since starting chemo (haven’t heard if these are normal, or what causes them, but they are definately noticable!)-
1. Clear skin- no zits at all, no blackheads, perfect pores, silky smooth… Man if they could sell “chemo in a cream” that did face care and armpits/leg hair removal like mine is now but without all the other icky side affects they’d make a fortune.
2. Flatulance. Ok, too much information, but it’s seriously funny how bad it is… Also lots of burping.
3. Foot cramps! You know sometimes when you curl your toes in your foot cramps up painfully? I’m getting that ALL THE TIME. My arms also go numb a lot, supposed to be something to do with all the fluid retention…
Had a funny moment this morning. Someone knocked on my door while I was on the phone, so I went to see who it was, hopefully quickly and get back to the phone conversation. It was a nice looking old man, who promptly went into his spiel about collecting donations for kids with cancer. I just looked at him and took my beanie off.
He just sort of said, “oh, ok, hope you’re doing well, bye!” and left quite quickly.
It was kinda funny. But now I feel bad since he was doing a good thing and all, but still I don’t particularly like any door to door sellers/collectors/converters. If only I could deal with them all so efficiently…
7th August- Hrmm… I’m back home again, feeling better but still in the not-really-sure-what-I’m-feeling-sometimes-fine-sometimes-need-to-sit-down-suddenly-can’t-do-much-but-feel-like-I-should stage. This chemo cycle has been fairly easy relatively but still more levels of ick than I’d like.
Only put on half a kilo this three week cycle… yay I guess. Better than a full kilo or more. Steroids+comfort eating+lying around like a zombie blob = major weight gain. I can’t even look at mirrors anymore. I’m all big and bloated and hairless. Not even when brushing my teeth or something… I avoid them. And I have to admit, I used to be a bit vain. Of my hair, anyway. I loved my hair, maybe a bit too much, leaves me thinking this all smacks a bit too much of a typical old testament style smiting. Surely there are worse people to smite than vain hair owners…
I don’t feel like myself, don’t look like myself, and with all the brain fuzzies I barely think like myself. I don’t know where I’ve gone, but I figure if I just rug up and curl up and sleep as much of it through as I can, I might come back soon. Go into stasis or cocoon and come out again when it’s all over… which at least will be soon now.
The nurse told me last week that coming off the steroid based drugs leaves you all emotional… It could also be looking and feeling like crap that does it too…
10th August- This chemo cycle, like all the others, has been unique in it’s own ways. Every one has been a bit different. This one felt sort of easier at first but a lower level of unpleasantness is lingering for longer. The brain fog has been extreme, and a few other symptoms that I hadn’t noticed yet are starting to set in I think. Nothing serious, just… unpleasant… Bad gums/mouth, dry skin, sad and sore digestive system.
Tomorrow I have my radiotherapy planning day, which means I get a CAT scan and some tattoos. The scan is so they can work out exactly where to zap me with their super powered x-rays, and the tattoos will be a few little freckle like dots around the place so they can line me up with their zapping machine every day when I go in, and yes, it is every day (well every “working” day, excludes weekends and holidays at least) for 6 weeks. That will all begin a few weeks after my last chemo, but they have to get planning now. It’s all extremely scientific and involves medical physicists and stuff. I can barely get through a whole sentence at the moment without stuttering or completely forgetting what I was talking about. It’s going to be interesting trekking into hospital almost every single day for 6 weeks. The actual treatment only takes 10-20 mins, but between getting there, the inevitble waiting time, getting home, it’s going to be taking about 3 hours of every day. I’m sure it’s going to be a lot easier tham chemo, but seriously time consuming!
27th August- Back home again after my chemo zombie hiatus at my parents place. Still a day or two away from feeling better as such, but definately past the worst now and keep reminding myself that there are no more chemo treatments left, all finished! It’s weird after what seems like so long, I feel like I can’t really remember what it’s like to be “normal”…
I’m still feeling a bit crappy so I’m giving myself a list of things to be thankful for… when they eventually fade away over the coming days and weeks….
1. For the first time since about february, I can’t tell you when my next needle will be!
2. No more meds, meds, meds. Yes, still going on a few of the ‘voluntary’ anti nausea tablets at the moment, but all the “compulsary” ones are finished!
3. No more need for my Medicine Bag rattling round with me where ever I go with a dozen different tablets in it.
4. No more need to own a sharps container for needles.
5. Not having to GIVE myself needles!
6. No more having my mouth feel like it’s dead from the inside out.
7. No more super sense of smell (that seems to prefer to pick up the most nauseating smells the most).
8. No more crampy achey belly
9. No more achey puffy arms that go numb just by bending them at the elbows (ok, so the tingliness could last for ages apparently, but the puffiness should go!)
10. Fluid retention from hell, bubye!
11. Putting on almost a kilogram every three weeks from the fluids and steriods cranking up my appetite like crazy.
12. No more hot flushes and crazy uncomfortable temperature fluctuations.
13. Good bye to that roving lump of pain that creeps around my various joints.
14. Being able to move my hips without feeling like I’m 80.
15. Flatulance. Enough said.
16. Brain fog… it’s a wonder I’ve gotten anything done straight these last few months.
17. Steroid, hormone, and general crappiness based emotional rollercoastering.
18. Dry skin, sore eyes, fuzzy eyesight.
19. No more visits to the vampires.
20. Relatively less time spent half naked with strangers poking at me*
21. Not having to obsess over whether my veins will stand up to another chemo treatment
22. Not having to hear the drip machine pumping away, and feeling the icey cold drugs running up my arm.
23. Not feeling the need to sleep 24 hours a day for most of a week out of every three.
24. Not feeling on the verge of being sick almost all the time.
HAIR!!! I can’t wait to just have ANY HAIR again… *sighs*
Hair is such a luxury to have, you’ve no idea. I think when it starts growing back I’ll be in a bad way just to not spend all day running my hands in it. Probably a few weeks away yet, but I’m so looking forward to it, and curious to see what it will be like. I can’t even imagine myself with hair anymore, I can’t remember what it was like, it feels so foreign to me now thinking about it I don’t know what it will be like to have hair again… But I know it will be good!
* Eh, actually the being half naked around strangers will probably happen a lot for radiotherapy. My planning day basically involved me lying on the machine bed, top off, while not one, not two, not three, but FOUR Dr’s of mixed sex, who I’d never seen before that day, poked and prodded and shifted and planned. We’ll see how it goes for the every day visits I guess… It’s strange how you’re prudities (me make new word?) can shift in these situations…
17th September- I just had my first radiotherpahy treatment this morning. It was pretty interesting, and more importantly, fast, easy and painless! Unless you count a stiff neck from lying in position for 10 minutes, which is really not bad at all compared to chemo, lol. It feels so sci-fi! With this huge awesome looking machine that moves around and laser beams marking up a grid on your chest and a team of people reading off measurements and using funky little handheld devices (gigercounters? measurers? I don’t know what they were!) that look like gadgets from low budget sci fi series, heh. They have a machine maintanence day this friday, which means a two day week for me this week, so a nice easy start to the process. I’m feeling like this will be over in no time, and keeping fingers crossed on the severity of the side affects that will come up as treatment progresses!
30th September- Radiotherapy is making me tired, sure enough, but I’m otherwise feeling SO GOOD now compared to a few weeks ago. I’ve been sulking and moping a little bit, I think because, well, I’ve had a chance too. Since February when I was first diagnosed, everything has been so full on, and you just have to focus on the few days or few weeks ahead and get through that, but now things are easier and slowed down with treatment I think the emotional side of things have caught up to me a bit.
But as I said, feeling so much better as the chemo side affects are leaving me! Still a few reminders of it left, my skin’s still gross, digestion still not quite settled, and of course the very slow path to getting my hair grown back, but I’m starting to really feel like myself again and it feels good!
22nd October- Wow, I can’t believe it’s only a week and a half left to go and I’m all finished my treatments!!! The radiotherapy is going well. My skin is starting to react to it now, it’s pretty interesting because the treated area is SO precise, I have this big red square “sunburn” area. It’s also making a birthmark I’d almost forgotten about show up really well! Only 2 more normal zaps, then 5 “super” zaps, and I’m all done. Then it’s just doctor check ups every three months from then on for the foreseeable future, lol.
My hair is all coming back now all over. It’s SLOW, but there is steady improvement. The hair on my head is about the stage of… hrm… bad leg hair at the moment, in thickness and length. It’s very fuzzy and soft! I can now JUST see a shade of hair line from a distance, like a weird 4 o’clock shadow, hehe. The bad news is almost all my eye lashes and brows have decided it’s kamakaze time… nothing has grown since I started the chemo, but they just stubbornly held on. But now the new lashes and brow hairs are growing in again, all the ones that had managed to hold on are popping out, lol. Still, not long till I’ll be all normal and hairy again, which I can tell you doesn’t feel normal at all to me anymore, I got used to being hairless!
2nd November- Well friday was my very last treatment day. Much celebration! I’m already looking at tomorrow and the following week very happily to not be having to get to hospital at 7am every single morning. In fact, I’ve got two follow up appointments booked for early December, but will probably be completely hospital free after that until February or so!!! No treatments, no tests, no tablets, no being topless in front of strangers! It’s unheard of! I won’t know myself!
The radiotherapy itself went very well. I seem to have been remarkably resiliant through my treatments in general (the chemotherapy doctor use this term as well, that I “tollerated the treatment remarkably well”!). My skin is all sorts of red and brown and blotchy from the radiation “burning”, but no blisters, no peeling or broken skin at all yet. It’s a delayed reaction, so it will get worse for a week still from now, but then it’s all improvement and healing and getting back to a better kind of normal. Even some of the chemo side affects are still hanging around a little, dr’s say for maybe a few months more, but also improving rapidly.
My hair is growing at an almost visible speed now, every day I can see more. I didn’t realise how much I’d lost, or how hairy I was before, lol! Arm hair, leg hair, eyebrows, all becoming hairy again, it’s a very strange sensation. I’ve got a stack of these tiny, cute, 1mm long eyelashes popping back in now (which is good, because I have LITERALLY two proper long eye lashes left on one side! Even mascara can’t do much with two eyelashes, lol!).
The hair on my head feels like fur, really soft and velvety. Another month maybe and I might be game to start being hat-free. It’s currently this long-
Still hard to tell what colour/texture it’s going to be yet, but I think it’s looking pretty normal actually, if maybe a bit finer and blonder, but it should get thicker and back to normal pretty quickly. You can actually see my radiotherapy burn in this photo too, and my tattoo dot in the top of the burn corner. I hope no one minds me going on about this stuff, personally I just find it fascinating myself, how all the medical stuff works. Like how precise the radiation treatment is, that it comes up as an almost perfect square (it looks triangular there, but when I lift my arm into my treatment position it is a square shape). I hope other people find it interesting as well! Many people know a friend of a friend with cancer or seen stuff on tv, but all the little details of treatment are never really talked about. Having never really had anything medical in my life before, I find it all quite interesting, how it all works. I’m always bugging my doctors with questions about how this machine works or why this treatment has that side affect and so on.
December- I feel so institutionalised, hospital kinda became my second home, and as much as I DON’T miss it, I do miss it, you know? Like prisoners not knowing what to do with themselves when they leave prison… I need to go build a boat with Morgan Freeman or something…
It was strange recovering from it all. I kept thinking, “Yes, I’m back to normal!” and then I’d feel even better again, and think “Oh RIGHT, THIS is what normal feels like, I’m not supposed to still have those aches every day!”. Emotionally was a longer road to recovery (see back at the beginning about denial and medical anxiety issues!), but these days, it’s almost like nothing happened. My hair is already down to shoulder length after just 2 years and is lovely and healthy. My scar is a constant reminder, as are the twinges of pain cause by surgery/radiation cooking/lymphodema that I will know for the rest of my life. And yes, the lymphodema in my left arm (from cooked and removed lymph nodes) was a nice added bonus at the end that I will have to manage for my whole life, but in the greater scheme of things, it’s not so bad. After all, I’m still here, and still happy 🙂