Collateral damage

Did you know that if you put a frog in pot of very hot water, it will try to jump out, but if you put a frog in cold water and heat it up to the same very hot temperature, it will stay put?

I am that stationary frog. If I had to travel the distance from before cancer to the latest dilemma each time, I’d go coco bananas.

So instead of reliving the cold fear accompanying the biopsy, the diagnosis, the notion of abandoning your family, the operation/mutilation, the pain of reconstruction, the fear of what you’ve bequeathed you kids, the dodgy pathology, the medical ambivalence, the toxic treatment and its long-term side effects, you put a bookmark in somewhere towards the end and take your broken self from there to the next challenge.

Which for me came in the form of this message:

Yes I have a preference! A very strong one, and it is to Fuck This Shit. But of course, Hobson’s choices have become my stock in trade and I will respond like a good patient once I’ve made the ‘best decision’ whilst reminding myself there is no such thing, there is only best guess and living with it.

The devil is to deflate the implant and risk internal scarring, but keep it out of the way of the radiotherapy beam. The deep blue sea is to keep the implant as is and accept a bit of the beam will spill on to it. So even though it is unaffected by cancer because it gets in the way it’ll receive the treatment. Collateral damage. The real problem is down the track, when there’s a high risk of implant rejection. I’ve accepted this reality for my left foob, that the right may suffer as well seems like a bridge too far, no?

People often say, in a way that’s meant to be kind but often only amplifies my sense of isolation “I just don’t know how you get through all this.”

At this very second, I don’t either.

Freak out

Making major health decisions is a tricky business. Particularly when you are hell bent on pushing up against experts and challenging norms. The choice to have radiotherapy was perhaps the hardest of all, and as the start date looms, I’m finding I need to really work to keep my nerve. The pamphleture is not helpful here. When describing the process it states that after you are set up on the machine “The medical staff leave the bunker and survey you via camera.” The bunker? Surveillance? Hell’s bells. I’m expecting tears in my ears again.

Recently I’ve found myself party to a number of claims which, pre diagnosis, would have washed over me. Low magnesium causes cancer. Vegans don’t get cancer (*looks skyward* is that right, Steve Jobs?).  Stress causes cancer. Let me tell you why I got cancer. My mother, the person who, ya know, made me and all, had a gene that instructed her tits to kill her. And I inherited that gene. I’ve not been tested, but I know it’s true. It’s a total non-mystery. Perhaps it’s the case that genes load the gun and environment pulls the trigger. Having three young kids is quite stressful. But what sort of mentalist goes around wishing their greatest source of joy didn’t exist? Exactly.

Hot on the heels of the ‘why you get it’ claims are the ‘how to fix it’ claims. The most unpalatable I’ve seen is via a Facebook photo with a message that ‘traditional cancer treatments don’t work/are carcinogens and are perpetuated because it suits Big Pharma’. This kind of stuff is SO EASY to say and consume if you’ve not got it. If you have, it’s emotional TNT. I’m pretty open about this experience, but that shit sticks in my craw, my friend.  You’ll probably remember sprouted bread‘s claim that oxygen therapy “kills cancer cells and stuff like that.” Wound me up no end.

I am all for questioning conventional wisdom, but in the words of Tim Minchin:

“Alternative Medicine”…
“Has either not been proved to work,
Or been proved not to work.
You know what they call “alternative medicine”
That’s been proved to work?
Medicine.”

It’s complex, though, because no sooner do I get all stabby about it than I seek it out.  Oxygen therapy is an alternative (or more accurately, complimentary) treatment that is backed up by successful scholarly reviews which prove it expedites the healing of damaged skin and tissue, hence its use amongst professional athletes. Even reviews that apply gushing testimony like ‘it’s a cure waiting for a disease’ dismiss the cancer claim, or hedge their bets with the ‘not enough evidence’ argument.

On the verge of booking up a series of sessions in the oxygen tank (and dropping more than $1,000 in the process) I tried to find out more as to when it is best administered to prevent the common side effect of radiotherapy on women with implants, namely capsular contracture (basically too much scar tissue). I was going to do the treatment on the same days as the radiotherapy, but then read that’s not advisable. Some reports say to do it before. Others after. Others say because it can take months for the scar tissue to build up, you should wait till the damage starts to show itself, then have the oxygen therapy. I was confused, confounded and with radiotherapy starting on 4 November, running out of time to decide. I told my psych “I feel very alone trying to work all this out. I wish someone would take my case on and tell me the best thing to do.”

He pounced on this. “Like a mother figure?” “YES!” I cried. Cue furious note-taking.  But on reflection if mum were here we’d probably be arguing about what to do. Arguing was our specialty. I’d doubtless be moaning about her muddying the waters.

As it is I’ve chosen to hedge my bets and do a series of oxygen treatments before and some soon after radiotherapy finishes. Embarrassingly, I’ve chosen this strategy based on a totally random doctor’s recommendation. He’s called Boris and probably got his doctorate online. I can’t find any of the ‘UK protocols’ he cites. So maybe I’m nuts. But it’s obvious by now that no-one actually knows what’s best, let alone when’s best, so I’ll just empty my wallet and cross my fingers.

Once I had made an uneasy peace with that decision I started to feel less daunted about the radiotherapy itself. I also enjoyed the first session in the oxygen tank, where I read a book and had a doze and arrived home to have Ted tell me my skin looked revived. Did it? Who knows. My usual 4pm dip in energy didn’t happen, but that was probably because of the nap rather than the oxygen.

So I was feeling pretty okay up until this afternoon, when I got a phone call from the radiotherapist to tell me that to effectively administer the radiotherapy, I’m going to have to have my right foob deflated. To the accompaniment, I imagine, of a descending penny whistle. I’ve had to get a rush appointment at the plastic surgeon to have this done. Ain’t that a hole in the bowl?

Over the weeks to come, I’ll be reconfronted by the awfulness of everything. A reddening, flaking tortoise shell of an implant on the treated left side and a fuck-knows what on the other. My clothes won’t fit.

As I type I realise the break I’ve had was just that, a break. I have to absorb all the oxygen I can and then I’ll have to go deep to get through this.

And now I have to stop, because … you can guess the rest.

Rage against the machine

Recently I heard an interesting observation on trauma. People react in one of two ways: either they ignore it and pretend it’s not happening OR they are defined by it. The middle ground is healthiest. You acknowledge and then you move on. “It happened, but..” Today I learnt for sure that I’m on the denial side of affairs because when we pulled up to the Cancer Care unit for my radiotherapy planning session, the voice in my head kept asking “What the FUCK are you doing here?”

The injustice and incongruence got worse in the waiting room, which was full of old people, wanness, distress and dis-ease. I finally stop thrashing around and by the time I head into the session, I’m resigned. On my way out of the door, I glance at Johnno and Theo, who’s beaming, and I’m sadder than I’ve felt in a long, long while.

Here’s what happens next.

Just change into the gown and pop your clothes in the basket. (The basket and gown give me the Fear). Come through. You just need to lie down and put your hands over your head. Now I’m going to move you, don’t try and help me. Okay good. I’m just drawing some lines on you here and where they cross I’ll give you a small tattoo so we know where to direct the light. Keep nice and still. Mullumbimby is a lovely part of the world isn’t it? I grew up (OUCH!) near there. I’ve got (OUCH!) friends who live in Station Street. Just two more now. Lots of verrrry fun parties in Mullum. (OUUUCH! Mother fucker! x 2) You can rest your arms now. And you’re done! I’ll let the nurse know you’re ready for your little chat, then I’ll take you over to the hospital for your CT scan, so when you’re having the therapy it’s angled to miss your heart and stuff.

Cheers for that, love.

The nurse picks a few leaflets of the rack hands them to me. I snicker to myself, thanking God I’ve not been handed the cancer of the vulva one. I stop laughing when I scan the rack once more and see the one on palliative care. Grave words pass in this room. I scan the leaflets I have been given and can see I’ve read their contents online. I’m told “Girls get tired around week three but it’s best to stay active.”

Pop. Nice and still. Little chat. Heart and stuff. Girls.

Far out, if the cancer doesn’t get me, the tweeness just might.

A bit on the side

A previous post describing the microscopic margin between the tissue sample and the cancer was called ‘a hair’s breadth‘ but I’ve since learnt the gap of 0.02mm is actually about a third of the width of a hair. It’s for this reason that I’m proceeding with a course of radiotherapy. This will involve trips each weekday to Lismore, (about a 50 minute drive away) for up to five weeks. I’m hoping to get away with a shorter course, but will need to consult with the radiologist first (appointment pending).

While clearly this will be an administrative arse ache, I am encouraged to hear radiotherapy isn’t too taxing. Short term, lots of people get tired towards the end of their course, and the skin can take on a sunburned hue. But these effects fade with time. Longer term, the story is different. My reconstruction would almost certainly be compromised as the skin, while it appears recovered, is damaged on the surface and underneath. It’s inelastic, slow to heal and not easy to get a good cosmetic result from.

This is the side effect which concerns me the most. But not one to take likely outcomes lying down, I’ve searched long and hard to find ways to limit this damage and so improve my chance of a good outcome. My first search led me to Miaderm cream. Or more accurately Miaderm Cancer Radiation Treatment Skin Relief Lotion. The folks at Miaderm *really* want you to find them through Google. Which I did. It’s earned 54 five-star ratings on Amazon. “I had a consult with my radiation oncologist yesterday as I finish my last week of treatment, and he is amazed that the burns are as minimal as they are.” reads one of the dozens of testimonials. I’ll take a triple pack, please.

Around this time I journeyed down another rabbit hole which led me to learn more about Hyperbaric Oxygen Therapy or HBOT. The chamber deep sea divers go into to prevent them getting the bends is being touted as a medical miracle. HBOT involves a sealed chamber where 100% oxygen (about five times the amount that’s in normal air) gets pumped into it. Plus the pressure is raised to increase each cell’s ability to absorb the oxygen. This accelerates the body’s healing ability.

The machines are not readily accessible within Australia. Major hospitals, football clubs, the odd swanky urban health farm. And where else? You’ve guessed it: Mullumbimby. I walked the ten minute journey from my home to find out some more. “Hello.” said a young gentlewoman who had the serenity of someone who starts her days with green juices and salutes to the sun. “Excuse me while I finish my lunch.” I smiled amenably. “It’s raw sprouted bread” she said, in a very unserene  voice. It took ALL and I mean ALL my composure to keep my eye muscles from rolling. She proceeded to speak knowledgeably about the range of ailments HBOT treats. “Of all the treatment we offer, it’s the one that I swear by most.” I couldn’t help it, my mind replaced her words with the one that isn’t *complete* bullshit. To be fair she mounted a really compelling case and answered my numerous questions, but she started to lose me when she hinted that radiotherapy was carcinogenic whereas HBOT can cure cancer. I stopped the eye roll but gave her one of my trademark eyebrow arches each of you will have witnessed. She returned to safer ground of length of treatment, availability and cost.

Before discovering the local HBOT on offer, I read a dozen public domain medical studies about HBOT and there is not a single shred of evidence to support the cancer cure claim but there is quite a lot of evidence that it helps heal radiation injuries, particularly those sustained by bowel and throat cancers treated by radiotherapy. So on this basis, I’m going to go ahead and buy a 20 visit pass (thus keeping the staff in veritable mountains of raw sprouted bread) and go on the same days as the radiotherapy. For the first time ever, I’ll be taking leave from work. I’ll be less present at home AND less useful when I’m there. It’s very, very far from ideal.

But that’s cancer for you.

A very big motivation for the writing of this particular post is the hope it can end up helping others in my situation. SO excuse me while I do some good old fashioned keyword stuffing of my own. Effects of radiotherapy on reconstruction, radiation damage, oxygen therapy, HBOT, Miaderm, helpful, improve result.

Under reconstruction

The first stage of the rebuilding effort is nearly complete. Every week for the last seven weeks, my plastic surgeon has injected saline into the tissue expanders she placed under my muscles during the operation. Each expander now contains 275ml of fluid, and I’m the equivalent of a 36C. Normally the second surgery, whereby the expanders are removed and replaced with the real implant, would occur about six weeks later. But because radiotherapy is on the cards, stage two is going to have to wait for the skin to recover. Which could be a long time.

Friends are starting to ask how I feel about them. My response is “I’m pleased I can wear my normal clothes.” This is a real benefit, I know, as is the fact they’re technically excellent. But in truth, at best I feel ambivalent and at worst I am disappointed by all they bring to mind.

The relationship with my real breasts started to die on that ordinary Monday afternoon when I learnt of their treachery. Things took a turn for the worse when I held a fake breast in my hand, and joined a discussion with the surgeon about the Turkish delight consistency while a large part of my consciousness drifted out of my body. Then it suffered a further blow when I Googled “post mastectomy reconstruction” and couldn’t click on the image tab for three days. Of course, the relationship perished entirely when the nerves and flesh got scooped out on another otherwise ordinary Monday.

Any sort of relationship with the reconstructed area was bound to be complex. For a start, and this is obvious by now, I’m not at all comfortable calling them breasts, because they are so vastly different to what breasts are or should be. They are high and hard and get in the way when I reach my armpits in the shower. There is a three finger-wide gap between them and no amount of forcing together can close this gap.

The scars are located under the right (preventatively removed) breast and along the middle of the nipple-less left breast. Day and night, these unnatural creations are contained in a matronly post mastectomy bra, which does up at the front via eight hooks and eyes.

When I lie on my side, they stay where the are. But when I stay on my side too long, I wake in the night with a cramp, the kind where I’m torn between staying still with known discomfort, or shifting and meeting brief but severe pain. I will also occasionally get a twinge in the spot where the cancer was, which is spooky, but if this is anything it’ll be met by freakin’ lasers in the very near future.

Otherwise they are inert. I cannot feel anything when I press them. They don’t react to the cold or the touch. I am happy to show them to curious friends, and don’t mind if they’re pressed or pressed against. Like an elbow, they have no association with the erotic and so are not something to be precious or private about. Still I’m stopping short of posting a picture because I appreciate these are my hang ups and others will feel differently.

Friends say “They look incredible!” and I agree. They are incredible. Not real. And of course, I don’t need Google to show me what they look like.

I hate Turkish delight.