A long overdue update

Well, here I am nearly into my third week of my second chemo cycle, and I have to say I think I am handling chemo extraordinarily well (touch wood, cross my heart, etc etc).

I’m having six cycles, three weeks apart. For the first three treatments I am having FEC (which are initials for different drugs, so I am having three different chemo drugs). Then for the following three treatments I have D. Whatever that is. Just another drug to get used to. After that, I pretty much immediately go south for four weeks of radiotherapy (three weeks plus a booster week). I had the option of having it in four or six weeks, with the same amount of treatment. Being that I have to stay down south while I’m having it done my radiation oncologist suggested I have the six week treatment squashed into the four weeks. More uncomfortable, but less time. After THAT, I go onto some form of hormone treatment. Probably tamoxifen, but it hasn’t been talked about yet.

So. Chemo. It hasn’t been the awful big scary monster that was looming over me in my brain. I’ve had absolutely no nausea (except for a tiny bit here and there) and no vomiting. The feed you three mega strong anti nausea drugs (one of which is a steroid)  while you are sitting there having chemo, and you continue them over the next two days. Takes care of it all. The first treatment made me glow bright red like a lobster for a week, and I felt as hot as I looked. I also had hot flushes. Fair dinkum hot flushes. (This chemo forces you into early menopause and infertility.) Lots of other really unpleasant side effects which I won’t go into, about the digestive system and reproductive system.  I was burping like a redneck the entire time, which was really embarrassing, with awful heartburn and reflux, but again … some prescription drugs have taken care of that. You get side effects from chemo, they give you drugs to take care of the side effects, which gives you more side effects … I’m scared for my poor liver!

However, the fatigue is the killer. It’s impossible to explain the extent of it to someone who hasn’t been through it. You tell someone, and they say back to you “yes, I’ve been tired lately too”. Nooooo idea. Getting up to have breakfast is too much for the body. You eat, then have to go straight back to bed again, out of pure exhaustion. Having a shower makes you shake hard … it’s like running a  full marathon. I’m not kidding here. I’m out for the count for the first two weeks of each cycle. The third week I feel quite a bit better, though still get tired VERY easily.

This second round of chemo has been so much easier. Basically all I’ve had to deal with (besides my bowels not being able to decide whether they are constipated or, um, a storm water drain), is the fatigue, which was even worse this time around. What were disgusting side effects the first time around settled into minor side effects. Still get the hot flushes and the night sweats, I lose my appetite the first week, but it’s all okay. Oh except that my mouth is starting to break down. My tongue and mouth feels burned most of the time. Lots of brushing and bicarb soda mouth washes helps. And I’ve got a great big box of lemonade iceblocks for the next cycle *nice to have a reason*.

That third operation I had was to install a portacath, and I’m glad I had it done because the place where I get my blood taken says my veins are playing up now, just as the oncology people said mine probably would (they are small). A portacath is a device that is implanted under the skin in your chest. A tube is run under your skin from the access module down to just above your heart. A special needle is used to access the port. It can be used to draw blood and to infuse the chemo drugs. Except, the surgeon didn’t run mine near my heart because he couldn’t get it in. He put in my jugular, in my neck. So now I have a scar just under my dragonfly where the device went in (and a nice big bump where the portacath is), and a scar on my neck. And you can feel the tube running under the skin. It’s gross. I’m getting it taken out as soon as treatment is over. More scarring. But it does make chemo easier, and I have my hands free, unlike most chemo patients who have a canular in one hand/arm.

I had what’s called an ‘oncological emergency’ during my first round, just at the end of the second week. I started feeling like I was coming down with a heavy dose of the flu all of a sudden, and ended up with a fever. Any time someone going through chemo gets a fever over 38.1 degrees they have to immediately go to the emergency department. Chemo kills cancer cells, but it also kills other fast growing cells in your body, such as blood, and the cells in the lining of your mouth/nose/digestive passages. So basically, because it kills red and white blood cells it can seriously compromise your immune system. It gets all very technical, but a particular type of white blood cells, the neutrophyls, were seriously low enough to cause an emergency. A cold can kill you and fast, basically. So, into hospital I went, stayed a couple of nights … but I got a private room with an ensuite! Because I can’t go into a room with other people in case of catching germs, every time I go into hospital while having chemo (and I HOPE it doesn’t happen again) I get a private room. Sweet. But lonely.

The first day I was in hospital, I started to lose my hair. Not in clumps like I envisaged, just leaving it on pillows, handfuls of it when I ran my hands through my hair, and my scalp was SO sensitive. After a week it started to look really thin and I couldn’t to anything with it so I had my mother cut it all off an inch short. Which ended up worse because the hair then absolutely covered my pillow when I woke up and my scalp hurt like a bitch. So, off to the hairdresser to have what was left shaved off. I am bald. In the middle of winter lol! I’ve never warn hats in my life … I’m just not a hat person. Now I’m having too. I’m having great fun with head scarves and turbans and going all Isadora Duncan! I also have a wig, but I REALLY don’t like it despite everyone saying it looks great. To me, it looks middle-aged-lady. Ish.

This IS a lonely thing. I lie here in bed for nearly two weeks in my home alone (unless I am staying at my parents) barely able to look after myself, let alone Liam. For the first week he stays with his father and his father’s mother (Nanna Kay). He seems okay with it, but it breaks my heart. It’s so disruptive for him. I feel like the world’s worst mother, farming him off like that, but I know it’s necessary. And I miss him dreadfully. But I’m very lucky that I have them to fall back on for this. It’s hard, really hard, being a single parent with cancer.

Liam has been attending a support group/course thing for kids under 12 who’s parents have cancer, run by the hospital. It’s a six week course and sadly we only have two weeks left to go. They talk about cancer, and their feelings and how to deal with them. Make things, draw things, eat pizza. Liam loves it … it will be a shame when it ends.

I am so blessed with my family (most of them anyway *cynical snort*). I am so very very conscious of what my poor parents are going through with both myself and my sister Natalie having cancer at the same time (she is doing fine with her chemo, which is a tablet form, too) and trying so very hard not to be a burden on them. I have two aunties living locally, one of whom is more like a close friend, who are helping out with the family situation. My Aunty Anne cooks meals for my freezer, picks Liam up from school, and takes me out of the house for coffee when I’m able … she’s a real mood lifter. My Aunty Irene is always available to help with transport. My parents run me around to appointments a lot, sit with me during chemo, let me stay there after chemo, and love and hug me, lots 🙂 My sister Christine feels helpless being over the other side of the country, but the talks we have on the phone are wonderful. And I am lucky, so very lucky, to have my sister Natalie to talk to about the things others can’t understand. And same goes for her too. It’s nice to have a supportive relationship with each other as we both deal with this.

My friends who I commune with via the internet are invaluable. I want you all to know that. Weeks of lying around in bed I can’t do much. Even reading is a problem a lot of the time because chemo, the drugs themselves plus the fatigue,  really does fog your brain. It’s hard to concentrate, to focus the eyes … the other night I was playing yahtzee with the other parents from Liam’s support group and I couldn’t even add the dice up. I just looked at the dots and I couldn’t do it. ME. It’s EMBARRASING being so stupid! I want you all to know though that while I don’t correspond much, I AM reading most of the time. It’s just that I don’t usually have energy to even type. Being able to read messages, emails and other people’s blogs and journals helps me feel like I am staying connected, by a string lol!

This “window” I have with the third week of the cycle is great. I am able to cook, drive, tidy up a bit, get out of the house, write blogs (!!!), catch up with people. All the really little things I used to take for granted. It feels so good I could purr.

There’s another thing I touched on with the last blog. Having cancer, or any other life threatening illness or event in your life, really brings everything into a very sharp focus. Your relationships with people … you realise how precious they are, or on the other hand, how toxic. Issues you have carried around with you, emotional scars, from childhood up, can come to the surface and need healing. Looking at your life, and how you have lived it. Or not.

I was at a concert on Thursday night, a concert called “Baroque and Beyond”. The second half was performed by a duo called Nardoo. I wish there was somewhere I could point you all to listen to their music because it was beautiful, but there isn’t. The woman of the duo is a specialist on the recorder. You may scoff. We’re not talking plastic recorders you play at school here. She is absoltuely incredible. She plays the ‘voice flute’, which is like a big tenor recorder, but she sings in harmony with it while she plays. Try it, it’s virtually impossible lol!. It sounds hauntingly beautiful. The man plays these amazing hybrid stringed instruments he makes (and sells world wide). Strange guitars and banjoes, for example with different string configurations, half fretless, half frets, with sympathetic strings. INCREDIBLE instruments. And they had this lovely big old tambour I wanted to run away with. Some of the stuff they play is medieval, some eastern sounding, they are very unique. ANYWAY I’m rambling on as usual. I was watching and hearing this couple play, particularly the woman; I read her bio … multiple music degrees, teaches the occasional course in medieval music at my university (they live in my uni town), has a music company producing cd’s, she’s the go-to person for recorder music in all of Australia; listening to her explanations of the music and the instruments … she was absolutely fascinating, a woman devoted to and passionate about music, which is her life. And I thought … that could have been me. Look back at my previous blog “I’ve got the music in me”. Had I not been the incredibly shy, terrified, fucked up child and teenager I was that could have been my life. Of course, I’ve regreted it in the past, but only slightly. Because all roads lead to now, right? Everything that has gone before has made me into the person I am now, which I kinda like, thanks very much 🙂 Regret is something I never wallow in. However that night, I went home and sobbed deeply, and spent the next day thinking about it as well. It felt like I was mourning the loss of ‘it’. Talent does disappear if you don’t nuture it; I’m testament to that fact.

It’s the looking back, with such a different filter … the filter of cancer. It makes it very different. As Maggie told me … it’s part of the disease process, looking back. The challenge now is to say “okay, you can’t reprise the past, but what can you do now to recapture some joy through playing music?”. It’s a place of accepting what was and making the best of what is. Finding a new ‘possibility’. I was just listening to an interview on the radio with a woman who runs retreats for people with cancer, and she talked about “possibility thinking” rather than “positive thinking”. I really like that … it sparked a feeling in me. Facing up to ‘shtuff’ is about creating new possibilities, in a way.

Listen to me, I’m no expert. I’m only three months into this journey, and of course, it’s only my experience of things. Others experiences are probably vastly different. But I can say this … cancer is not just a physical disease. You just don’t deal with ‘curing’ the body. There’s a whole lot more involved than that.