Helping me get up these endless hills

We're at the gruelling part of the FBC journey. My latest analogy is that it's like riding up a hill anticipating that if you can just tough it out to the crest you can cruise down the othert side before you need to confront the next hill.

Except there is no crest. There's just another bloody hill. Hills with no crest. No time to re-fill your "tank". Barely time to take your hands off the handlebars and gulp in some replenishing fluids.

This past cycle was a turning point in many ways. It included the "planned admission" to hospital where I endured three failed attempts to insert a canula whilst my three lovely KATs cavorted around the room, the registrar became increasingly agitated, my wonderful sister bit her tongue and Saint Mike  maintained his usual calm demeanour and I wanted to close my eyes and float away to a land where there are no more needles and no more nausea.

It took two days before the magic cocktail of anti-nausea drugs was established. In my case the drug Cyclozine is the wonder drug that when combined with Zofran and fluids makes my nausea retreat. Unfortunately it can only be given by injection so I had a sub-cutaneous butterfly thing put in so they could inject it without more jabs.

I came home late in the week and without my new bestie (Cyclozine) I was back to wobbly - the nausea although not as bad as at the start of week 1 was still grim and my bowels go into lockdown so I was in a bad way over the weekend.

Getting back up and around my priority was to nurture my KATs because the hospital week had been really tough on them. Planned or unplanned, seeing your mum in such a low state and having to leave her side to go home wasn't much fun for any of them.

I decided to spend as much time as I could giving each of them one-on-one time and thankfully by the end of week 2 they were all in a much happier place.

I on the other hand commenced week 3 dreading the countdown to Friday's craptastic chemo day and the commencement of our next "hill". This hill was made all the more steep because I had an appointment to see the breast surgeon and discuss my double mastectomy which is to happen 6-8 weeks post-chemo. 

Throughout this journey I have tried to focus on what's immediately in front of me. Consequently, this next surgery has been put in the "later" basket. Now it's front of mind and I am feeling quite overwhelmed by the prospect of having my old friends removed and a 12 hour reconstruction. Lots to organize and consider and hurdles to overcome re co ordinating the timing of my breast surgeon and the plastic and reconstructive dude. So far it's not going well. 

My older sister commented that what I need is an advocate so I don't have to deal with their shit-fighting over fitting me in....she's a smart girl (both my sisters are very very bright!). Bring on the advocate I say. In the spirit of my bike riding analogy it's like someone jumping out of the underbrush, reaching out and shoving my weary arse up this bloody endless hill!

As you can see from the photos in this post, life goes on! My KATs are growing up amidst this turmoil and I couldn't be prouder of them. I continue to be surrounded by caring and thoughtful friends who have given us the metaphorical push up the hill at various points!!

To those who comment and read these posts you too are hands pushing us up the hill and for that I am eternally grateful:)

There's no good cancer

I called into a talk back radio show today. Couldn't help myself. Haven't ever been backward in coming forward and not going to start now.

The topic was related to the disproportionate attention (and resources) that Breast Cancer gets relative to other cancers and the community perception that it is the "biggest" cancer for women.

As I was waiting on hold to make my point I listened to the various callers and a very articulate man from the Australian Cancer Council who dispelled some "myths" (for example lung cancer is actually the biggest "killer" of women). 

A lady called in and referred to breast cancer as the "sexy" cancer. The announcer (who I love) asked her in what sense she meant sexy. Quite rightly she talked about the fact that from a marketers perspective boobs are sexy.

I was really surprised by the emotion that the use of the word sexy stirred in me. I was almost teary contemplating the dichotomy of sexiness and the realities of breast cancer. The two should never be used in the same sentence and I felt compelled to make that point strongly.

When I did get to speak (which in itself was an honour as I can imagine there were a huge number of calls on the "board") I managed to make the following points quite succinctly (for me a waffler from way back):

1. All cancers and in fact all diseases that affect families the way we have been affected suck.

2. It would be fantastic if all the other forms of cancer could be elevated to the degree of public awareness, support, charitable contribution and therefore research and services that Breast Cancer has because then everyone who gets this terrible diagnosis would benefit equally.

Then I made my final point. The one where I said that using sexy in the same sentence as Breast Cancer makes me want to cry. Sexy is the last thing I feel and the Pink October marketing of perfect boobs when that is far from what women are left with post-breast cancer treatment is very distressing to me.

The truth of it is that my boob is a mangled mess and I try not to look at it. I certainly don't touch it and the fact that Saint Mike and I jokingly refer to this as our "year without sex" isn't just due to chemo nausea. 

My hormones have packed up their wagon and decamped. I am experiencing th joys (plural) of the hot flush multiple times a day. If I'm not feeling like puking I'm a cranky cow likely to bite my husbands head off! His saintly status is not just being enhanced by his patience with the treatment but also with the repurcussions it's had for our interactions.

I've always had a fairly amiable relationship with my boobs. Now that they're on a countdown to oblivion I feel like it's only a matter of time before I give this tangible loss the air time it deserves. But I can't focus on it now. Out with the old and in the new will happen in late Feb/early March but in the meantime I've got to focus on what's immediately in front of me and unfortunately that's a bucket! 

Sorry if this is a tad depressing. Felt like putting on the record these particular emotions. One day my girls will read this blog and I want them to get a nuanced perspective:) 

Lull before the storm

It's day three of chemo cycle 4 and I'm sitting up in bed typing on my iPad using my new whiz bang keyboard and origami cover

Sadly it's nowhere near as pretty as this origami flower but it's ticking all my functionality boxes.

I'm ruddy faced and feeling a bit jumpy from the dexamethosone (AKA mini-speed). It alleviates the nausea but doesn't completely rid me of the craptastic chemo side effects that I'm becoming accustomed to.

This was my position on Friday afternoon post-infusion....resting my weary head.

Note the stellar nails! A welcome side effect so far is that I've stopped biting my nails (I had resumed this woeful habit when I was first diagnosed). The thought of double ingesting the chemo drugs was enough to bring my nail biting to a screaming halt. Coupled with the suggestion of the chemo nurses to get myself to a nail bar pronto and Shellac the heck out of my fingers and toes was enough to get this Taurean racing off to the nearest franchise.

Another thing that has alleviated the after affects of this dose is that I got to open a few more of the pressies that my best friend in the entire universe sent over for me. Each one is packaged up separately for each chemo cycle. 

Bracelet 1 made me smile....but when combined with this...

Bracelet 2 "Fierce" I laughed....I felt anything but fierce at that particular moment in time!!

It's hard to separate what I loved more - the card (writing on the inside will remain private) or the lovely coin brooch....it's so special words don't describe it. It's another token to add to my growing collection of good luck charms given to me by thoughtful and kind friends and family.

When I count my blessings I count all of them twice.

Monday night I'm off to hospital, origami cover and keyboard in hand. I am sure to suffer the dreaded imposter sydnrome that I don't deserve to be taking up a bed but my breast care nurse said she'd actually like that to be what I'm thinking because it would mean I'm feeling okay and that's the whole idea!

My wonderful big sister is coming up (again) to help out Saint Mike and I with wrangling the KATs and I am really looking forward to seeing her. Yes this is the lull before the storm but I'm hopeful the storm won't be as bad as the last one:)

Halloween

Things have been subdued over here in KATcapers land. Despite my best intentions my blogging continues to be sporadic.

Craptastic chemo was never going to be a beer and skittles affair. I knew that. I just hoped that I would get cut a few breaks when it came to side effects. Unfortunately each cycle thus far has featured its own drama. 

Whilst my first visit to hospital was a fairly calm affair, my subsequent trip to the emergency room last week was less slightly more dramatic in that I was dehydrated and losing bodily fluids from both ends! Craptastic chemo is not only causing me kt have severe nausea but is also messing with my bowels something nasty!

It was distressing for all of us but I have been particularly concerned about the impact on the girls when I have to be rushed off to hospital. 

I seem to have one week out of three now where I'm relatively energetic (to a point) and so I am trying to busy myself with crafty pursuits to take my mind off the fact that I have an appointment with a canula every three weeks that I would prefer to skip!

Exhibit A is the above image - fabric covered canvas for a teacher at school who has a new grandchild. 

Exhibit B was another fabric covered canvas made for another lady at school....as you can tell my innovation with a fabric covered canvas is a bottomless pit!

 

I also managed to finish three shelves that I'd picked up from council cleanup - wallpaper found on Etsy and a few sample pots did the trick. My skills with a drill and a spirit level still need some work but I'm happy with the result.

Next chemo is November 8th and my oncologist has arranged for me to check into hospital on day 4 post-chemo to be attached to a drip and fed anti-nausea drugs and fluids to help me ride out what seems determined to be the week from hell each cycle. Hopefully this will be a calm and controlled process that we can ensure doesn't traumatise the girls and keeps me relatively healthy.

Halloween decorations will be the topic of my next post...even craptastic chemo can't subdue the frustrated event planner in me and I decorated up a storm...before collapsing in bed and missing the afternoons proceedings:)

Lull in communication

Apologies about my sudden radio silence. Round two of craptastic chemo didn't follow the anticipated gradient (upwards) and instead I seemed to lurch from one day to the next feeling nauseous and lacking in anything that could be described as energetic.

It culminated in an overnight stay in hospital to have some fluids put in and some checks done to make sure there were no underlying issues with my bowel....it had decided to hog some of the limelight and was behaving rather badly! On strike and seemingly immune to whatever went in there to try to wake it up...and then suddenly deciding to have a hissy fit and make me seriously want to die due to the painful cramping and nasty business emanating from my nether regions.

I have tried to adopt a more relaxed routine in an attempt to cooperate with my lovely oncologist so I took to teaching myself how to crochet with zpagetti. If you're unfamiliar with this phenomenon you should check it out! My friend who suggested it reminds me that it's perfect for a more "free form" expression....which translates to "missed stitches...who cares!!!".

It was frustrating and it took quite a few attempts before I mastered the stitches...I'm doing a cheats version of the magic circle (crochet speak). My first attempt was this....

It was supposed to be a vessel but it started to look like a bottle cover so in the end I decided just to let it be:)

The next attempt was much improved and is now sitting proudly where I can admire it regularly! I am just loving playing with the zpagetti colours (trying to contain how many colours I succumb to) and have been practising stars and flowers...even made a garland for my beautiful friend who introduced me to this therapy.

So that was a great way of distracting you from how crappy I am feeling! Craptastic chemo round 3 was last Friday and I'm going to try and spend the day in bed giving my body the rest it needs.

Yes there was the happy chemo face on show....all I can do is keep smiling when I can and not focus too much on how much the after affects crush my spirit. 

Round 3 of 7 done....in another week we will hit the half way mark. That's something to look forward to:)

Boldly bald

Sounds obvious doesn't it? It is a no brainer that people stare at a bald person. I think it's human nature and I was prepared for it.

I've always suffered from the "what are people thinking" disease. It's kept my imposter syndrome and inferiority complex company back there in the musty recesses of my self conscious.  Courtesy of many years of employing cognitive behaviour therapy to counter these snarling beasts of my mind I have learnt that it is more helpful to challenge those inner voices. I have  found that countering them with alternatives works. The conversation goes along the lines of:

"Its All About Me" inner voice: "Oh shit. Starer alert! They're probably thinking I'm so up myself. Why doesn't she cover her bald head up. Why did I think it was okay to go around the shopping centre bald?"

"Get over yourself you nutter" inner voice: "Pleeeeeeeeaaaaaase! It's a bald head. Of course there'll be a few double takes. For all you know they have a thing for bald women or they're wondering if you're making a fashion statement".

All jokes aside I did go out rocking a headscarf for the first couple of outings. I found a YouTube clip where a woman shows a great way of reusing old TShirts as head wraps (you cut them off under the armpits and wrap it around your head creating a great base for adding scarves etc. I liked it. I did it with a white one and a grey one. Thing is though it's a tad hot at the moment and I'm finding that my head (both physically and psychologically) prefers to be unencumbered.

The analogy I used with Oldest KAT when I decided midway through the week to stalk the shopping centre boldly bald was that I'm the type of person that when confronted with the cold pool would prefer to jump in the deep end and immerse myself fully rather than dither around sitting on the edge, dipping my toe in ever so gingerly. Much better to feel that momentary clench of coldness grip me and then have it over and done with that inch my way in gritting my teeth.

It was confronting entering the shopping centre with my vulnerability on full display. It did require me to do some kick-arse on-the-go CBT to banish the voices that urged me to run for cover (literally). It wasn't only the eyes of nameless onlookers. The eyes of the KATs were also absorbing both people's reactions to me and my response....would I fold like a cheap hammock?

Pleasingly I found it liberating to be boldly bald. I have had compliments which are lovely, my doctor also suggested I had better have my Gaydar on high alert as I'm likely to attract attention. Who knew that Lesbians like bald? Feel free to educate me on this so I can educate my doctor.

Accessories are in my DNA. Being a cancer-suffering wallflower was never on the agenda so out have come the scarves, hats and earrings.

There are definitely downsides to baldness which I will elaborate on in my next post but for now let's stick with the way it is already challenging my personal paradigm. I finished this weekend with a relaxing afternoon at the local pool where I walked around with my sun screened noggin glinting in the sun when I was making my way to the pool. I ignored the stares and just enjoyed the glorious sun and the equally glorious water that was so healing for my soul one week post-chemo when I've hit the wall and feel like I can't take anymore headaches and nausea.

What strangers think of me is the least of my issues.

Revealing the noggin

So here we have it. The noggin reveal. Despite the nausea that accompanied the weekend post-chemo I had decided that I wasn't going to delay the inevitable. My rapidly thinning hair needed to be put out of its misery.

On Saturday Saint Mike was charged with procuring a set of clippers when he took the girls out to the local shopping centre for a movie. On Sunday morning it was me who unpacked them and plugged them into their charger. Like most mere men, task completion can be the undoing of my husband.

The cape is a child-sized version acquired as a visual prop to enforce the "hair must be tied up or cut" rule which Youngest KAT was resisting some months back. It has sat unopened as have the scissors purchased at the same time...who said dire threats don't work?

We all congregated on the back lawn as I thought it a good idea to avoid sweeping up. However when Sally (the dog) started picking up chunks of hair it became a mad scramble for the girls to collect all the "bits" less we poison the dog with my chemo-laden hair. Quite the comedy act with peals of laughter no less.

Saint Mike seemed to take a perverse pleasure in his role as wielder of the clippers. A running commentary was given by the KATs regarding how daddy was giving mummy a Mohawk...then it became a tuft of hair which he insisted would be a good look.

Perhaps it was the flurry of activity (a confused dog chasing your hair around the lawn with three children in hot pursuit) but I didn't feel distressed. I was self conscious and felt immediately unattractive (note to self - black plastic cape isn't flattering) and I regretted that I had not stage managed this a bit better. Nausea will do that I suppose.

I felt strongly that we should do it as a family. I could have gone to the hairdressers and revealed my baldness to the KATs post-clip but having experienced their differing reactions to my pre-chemo chop I felt that immersing them in the process was for the best. Thankfully it worked.

Each of them reacted in their own way. Oldest KAT exhibited typical teen repulsion (yuck factor) but she is also painfully self-aware of how I appear now to the world and she was immediately worried for me.

Middle KAT was predictably reticent to say anything lest she reveal either her own anguish that I am suffering from this disease at all or that she might hurt my feelings by saying something "wrong". Wry smiles and gentle caresses were the order of the day.

Youngest KAT was tentative...it was the tactile that was front of mind for her....how will it "feel" when she touches it. Prickly is the answer!

This image captures the thoughts and feelings that were fluttering down around us. As someone said on my Facebook page - I am cherished and surrounded by love.

I'm now into my fourth day as a bald eagle and my next post will reflect on how it feels to face the world with my remarkably smooth billiard cue.