Every year it gets a little harder to answer when someone asks what I’d like for Christmas. I guess that’s what getting older does, every year you need a little less. Well, this year, I had no answers at all. Having cancer, and being in the midst of chemo, is one big want killer. All I could say, when anyone asked, was Have you got a time machine to take me forward by three months so I can finish chemo?
After my reaction to the Taxol, which it seems was a fully blown anaphylaxis, I was left awkwardly hanging there. My oncologist showed new depths, both of emotion and also professionalism, by taking a week to consult with her peers and weigh up all my options. It was an uncomfortable week, but an important one.
And at its end came some staggering news, which you’ll all cheer about, but I have to admit left me feeling a bit… lost?
The final decision was to end my chemo early. Three months early. My Christmas time machine had arrived. No more Taxol. No more Red Devil. No more anti nausea drugs, no more laxatives. Instead, a little white pill named Tamoxifen.
A little white pill that will be my daily companion for the next five years.
I knew that hormone therapy awaited me. That when chemo was over, that I’d be taking a little pill that blocked the estrogen receptors of all the cells travelling around my body, and that would mean that I’d need to be kept in a state of early menopause for five years. I knew it, I did, but I filed it in my bulging later folder.
And suddenly it was staring me in the face, and I was in the Survival Phase.
Another consideration pushed the decision to end the chemo. My friend the elephant. He’d made it clear that he wasn’t leaving me as long as I was on chemo. My body was… is… too weak to fight elephants right now. Taking me off chemo gives me a fighting chance to kick the cellulitis once and for all.
So, simultaneous to the arrival of the time machine, was the arrival of the Baxter Bottle. The Baxter Bottle is attached to my chest, via my port, and will be delivering me IV antibiotics 24/7 for the next six weeks. This saves me having to be in hospital (big hurrah indeed!) but means I must carry a bag or wear a bum bag (fanny pack for my American friends) at all times to hold my bottle. I have some interesting tubes hanging out of me, which draw stares when I’m in public.
But that wasn’t all that happened prior to Christmas.
We also had a call from the IVF clinic. The genetic testing on our three Judes was complete. And two out of three Judes carry the bad cancer gene.
It’s a lot to take in.
So I must apologise for my extended silence. I’ve been thinking, and reeling, and trying to readjust to having been whisked three months in to the future.
I know the news is good, provided the cancer stays away. And I know that compared to chemo, Tamoxifen should be a walk in the park. So why am I feeling like I’ve just been sent out to sea in a leaky boat?
I guess this is what happens when the future sneaks up on you. This next week or two I’ll let it all sink in, and then take stock and see where I am.
Stay with me. Merry Christmas and happy new year to you and yours…
Ginger cakes for all the lovely folk at St Vincents and the Kinghorn Cancer Centre.
Nobody thought to tell Saskia that I also owned an elephant. The poor hound didn’t expect to be sharing a bedroom with a creature that wanders muttering around the house at night, keeping a drug diary and microwaving heat packs at 4:20am.
It’s done wonders for her toilet training though, as the three of us mosey around the courtyard three or four times throughout the night, my bald head twinkling in the moonlight, all in relatively good humour considering the situation.
And then I had to have a colonoscopy and endoscopy as well. I keep having blood transfusions, and then the red blood cells vanish, leaving me gasping for air within about three weeks. Has the elephant developed a taste for red blood cells? The oncologist thought that maybe the red blood cells were going missing because of an ulcer or internal bleeding, but nothing became apparent despite the battery of tests.
At the height of the special colonoscopy diet, Saskia had the pleasure of watching me sip laxatives, clear beef soup, green jelly and icy poles all at the same time (5:36am!), and then bolt for the bathroom. Only a puppy can love you at a moment like that. She would drape herself languidly on an abandoned pile of pyjamas and patiently wait until I returned from the bathroom, wagging her tail delightedly. I love you the most right now she would happily wriggle. I just love being near you! I love you the most at 5:36am with the runs! I can barely contain my love…
Can you tell why I love her right back? Love love love you too, Saskia!
As the nurse’s (and thus my own) fear rapidly escalated re the elephant, my surgeon as usual fluctuated wildly between totally deadpan You’re fine. Purple is a fine colour for skin. Pus is positive. And what’s wrong with eating hardcore pain meds like they’re M&Ms? and spontaneously over reactive Can you come in at 12:45pm for emergency surgery, and can you start fasting… Umm… Now?
My answers, by the way… Purple is not nice. Pus is not fun. And hardcore pain meds not working anymore is just plain scary. And painful! and While I am already fasting, it is for a colonoscopy, and no you will not be spontaneously performing emergency surgery on me this afternoon. Besides, I have nothing left to operate on!
(Sorry, my true believing friends, I truly don’t intend to mock, but I can’t find a more accurate way to express my frustration and sadness.)
So today I left Saskia chewing on an oversized lamb shank and walked the elephant to hospital.
We were due for my first round of twelve weekly doses of Taxol, but first I had to work my way through three fat bags of B+ blood with my name on them. Transfusions are slow. They drip drip drip away, and I was entertained first by my dad keeping me company, and then dozing in a recliner, trying to recover from several weeks of elephant filled dreams. Sleepy and uneventful, I’d call it.
And then six hours in, the Infectious Disease Registrar turns up. She is the Elephant Specialist at long last! Can she teach me how to kick this bloody cellulitis? Please please please?
Then as I’m deep into giving her my medical history, something strange happens. I can’t breathe. I can’t think. I can’t remember what I’ve said, or am saying, and I’m scared but even more scared to admit something is going terribly wrong. I feel very faint and I feel very strange, can you call a nurse?
Not one nurse pours in, but eight or ten. It turns out that they started giving me my Taxol six minutes earlier, and they’d been standing by in case of anaphylaxic shock. Apparently, my chest turned red and rashy over a few seconds. Like magic the nurses injected me with cortisone, were on to me with blood pressure monitors and were holding my hand and stroking my back as I sobbed and tried to breathe.
Have I just become another bad statistic? Again? Seriously?
Everything that happens after that is blurry. I’m given something called Phenurgan and it makes me pleasantly sleepy. The poor Elephant Specialist stands well back, shamefaced, as though her case history caused me to have a near death experience, and quietly asks if she can photograph the elephant and show it to her supervisor.
There is a lot of quiet chat, and I gather that I’m not getting my Taxol today. I’m not getting an elephant cure today either. And I just lie back in my recliner and wait to be taken home to my bad puppy who loves me any old time.
Love you all as well. Even at 5:36am. Even when it’s raining.