It never ceases to amaze me the benefits of a good night’s sleep. Never mind the euphoria of a new love, or the excitement of an overseas trip, a new baby, a great concert. Does anything compare to the divine feeling of waking up after a good 7 or 8 hours of uninterrupted sleep? Perhaps this knowledge is something you discover later in life, when the converse – the lack of sleep and the subsequent downstream disadvantages – has haunted your nights periodically. Or if you are unlucky, you are a regular insomniac for whatever reason.
I am awake at 12:41am. I ascribe this to the wonders of modern science, in particular the wonders of chemotherapy and the management of it’s many and varied side effects. The day prior to the administration of the actual chemo, one is required – advised? – to commence a short 5-dose course of steroids to lull your body into a false sense of ease so that it does not go berserk when the chemo hits your veins. Downside? Wired. Can’t sleep. Or so they say, so it becomes a reality because they said “don’t worry if you can’t sleep, it is the steroids.” I wasn’t worried actually, in fact before the first dose of chemo I slept really well because I didn’t know any better. Is it the steroids that also make my mouth tingle and food taste off? And the dull sense of nausea that I know will last for the next 5 days or so, thankfully relieved by yet another drug? Perhaps these other things are simply my brain facing up to the reality of ground-hog day – here we go again.
I am trying to look at this positively for the most part. Absolutely 50% through this process regardless of how you count it. AT LEAST 50% – some would say 75% since from tomorrow it is a mere 3 weeks until Dose 4, the final Dose. Which is the deny the side effects of Dose 4 any status at all except bloody annoying because I need to get on with my life. Tempting to think that way, but not quite reality.
Counting backwards, from now until December, New Years eve spent with my brother, sister-in-law and some mutual friends. Lovely food, New Year celebrated at 10:00pm then we all went to bed. Seriously, no point in staying up until midnight. Time is a man-made invention of convenience anyway, in my opinion. I look like him, I think. In fact turns out he has more hair than me right now. It was nice to have them here.
Pre-Christmas dinner with friends including a friend-of-friend who is now 5 years post-cancer. So so good to talk to her. She said “you are the only other person who feels the same as I do about mastectomy/reconstruction,” and we laughed as only members of an elite club can laugh knowingly with each other. We will become good friends I think, upgraded from friends of friends.
And before that, the carol singing at the local park. So cool. So good to do. It was day 6 of Dose 2 – typically a ‘bad’ day, and by the end of it I was feeling a bit wonky to be sure. But boy it was fun. We are on you-tube, I am in the back row, red hat.
What a great way to engender some Christmas spirit. The faces of kids, watching a camel consisting of two men, absolutely precious, and enough to melt your heart. Santa might be a big fat lie, but a sense of community and family with Christmas as the excuse is worth it regardless. Also caught up with some good friends who were manning one of the BBQ stalls, and met one of them for coffee a few days later. The singular, only conversation I have had with anyone since October when the word cancer was not mentioned at all, in 2 hours. I love her for that alone.
Christmas has come and gone. Family time, lots of laughing, lots of fun. A strict adherence to the no-alcohol policy (OMG so hard to say no to french champagne; to be honest the sip of 1995 french red tasted awful to my altered palette. So too the Millton biogrow certified rose, which normally I would love. I really hope this is temporary like they say. Right now though, when I am ingesting all manner of supplements to enhance my health and help deal with the magic of chemo, it seems madness to add alcohol to the mix. Utter madness. No so easy to deny Christmas cake and a few chocolates here and there, fresh ciabatta bread, Christmas mince pies. Will any of these things kill me? I really hope not, that would be annoying. I figure while I am having chemo a little bit of what you fancy can’t hurt. In truth the ‘bad food’ probably no better or worse than a glass of champagne, but I think my liver will thank me.
I have balanced this intake of previously deniable food delights with an uptake of exercise. Swimming – bliss!!! I have swum for exercise for 15 years or so, only stopping when I have been working from home and it is just not feasible to drive to the nearest pool. So to be immersed in the ocean again, even though it is still cold – about 18 degrees – is delightful. Wearing a swim cap of course, because I am all but bald. From a distance, completely bald. Up close, a very thin covering of fine hair that has thinned out more over the last five days or so, as per dose 1 & 2. Eyebrows still hanging in there – small yah. Swimming also tests my recovery from surgery and to my delight I have pretty much full movement of my arm. Swimming will complete the recovery over the next month or so. Kayaking more of a test, and again a great way to complete physical recovery. Up the Tutukaka harbour, past all the big houses perched on the roadside. A seabirds-eye view of this gorgeous part of the NZ coast. A family kayak trip outside the heads and up the coast a bit, hopeful of seeing the dolphins reported to have visited last week, but settling for a family of gulls perched, like the houses, on the rocky outcrops. Serious exercise and a serious test of the surgeons skill, which he passed with flying paddles. Walking to the Tutukaka trig, a warm up of more to come. All part of three days of festivities spent with family who are, miraculously, also dear friends.
Back to ‘our’ beach to finally relax. Walking is important – we are in training for the Kepler Track. In exactly 3 weeks time we will be on our last night on the track, sleeping (I hope) in a DOC hut with 40 or 50 other trampers. Today was the ultimate test of our preparation. A 14.5km 4+ hour walk around Tawharanui, around the hilltops that allow fantastic views of the Hauraki Gulf even on a cloudy day. Gasping when the clouds clearing for an hour or two and we were in the full heat of the midmorning sun. Thankful when the clouds returned. All with pack on back, tramping boots & hat. Full attire. There were a few others out and about – amateurs with no packs at all! Phuuu to you, day walkers, there is serious business underfoot. Came home to a quick lunch and a 2 hour recovery rest. No wonder I can’t sleep. Feeling confident now, that despite earlier suspicion that it would all be too hard, I can do this. Four in our party. Another meeting necessary to plan who will carry what. Shared toothpaste, shared first aid kit, shared billy to boil the water the make the dehydrated food edible. And whatever else we can share to reduce the weight load. We agreed to take the water taxi across Lake Te Anau thus reducing the distance on day 1 by some 6 kms. Our actual walk will start at the bottom of the hill, and we will spend 4 or 5 hours zigzagging upwards to the first hut. Booked just a few days before diagnosis, I am now grateful to have something else to think about for the next 3 weeks.
My body feels a bit battered to be honest, even though, until tonight, I was feeling fine. I don’t like having purple ‘moons’ on all my nails, and yes I know I should be pleased my nails are not falling off completely (not yet anyway). I suppose it is because I can see it all the time. I can’t see my baldness unless I look in a mirror, although I can feel it. I forget completely about the arrow that is the scar running from the middle of my chest right under my arm, where it splits into the tail. A nothing, a minor thing. I am pleased with the alterations to my swimming togs that now include their own customised (2 pairs of togs, completely different styles) prosthetic, which makes my asymmetry invisible. In fact my togs are probably the most comfortable of all my clothes. I consider it a small tribute to both my inventive, creative parents that I can fashion a prosthetic out of some old togs and a plastic mesh bath-cleaner and it works. YES. thanks Mum and Dad, for the fine ‘can-do’ example you both set us.
Time to try sleep again.
Brotherly love. He is taller and currently has more hair than me. He is my only brother, and it seems like yesterday we were the two little ones of four kids. Happy New Year mate.