No tricks, just treats

Bar chartFinally some big, good news. The best news from my appointment with the oncologist today.

No chemo. No Herceptin.

Which means no death threats from a common cold, no heart attack, no bone ache, no red pee, no crushing nausea, no hair loss, no blackened nails, no bleeding gums, no neutropenia, no soul destroying fatigue.

None of it.

I went into my appointment with no awareness that this was even on the table. What I thought we were there to discuss was whether the cancer was HER-2 positive and if so I’d need to get the drug Herceptin as a result. As far as I had been told, if I got Herceptin I had to get chemo as they don’t work well separately and are only licensed together. At the last appointment, my oncologist told me I’d likely be on a chemo regime that could affect my heart function. Herceptin also affects the heart so I wouldn’t actually get them together. It didn’t register at the time because I was so stunned that she wanted to give me the full dose of chemo and carpet bomb my system, just in case.

While I was bored, alone and sat in the waiting room for an hour, a wonderful friend I made on this breast cancer ride reminded me that Herceptin must be given with chemo in order to be effective. I remembered then that was exactly the info given to me in other appointments. So when I finally got into the room with my oncologist and she started talking about chemo and Herceptin being separate, I questioned why if they weren’t effective in this way. Eventually after some backwards and forwards, she admitted it was less effective this way but was the only way to deliver them because of the risk to the heart.

This took ten whole minutes to clarify. But it did give her time to question herself and she took it further by deciding to consult the Computer Oracle.

Apparently after they cut out my cancer and analysed it in the lab, they found it was only in an area of 8mm. Rather different to the previous 20mm they predicted it was from the biopsy. They’re also sticking with it being a grade two cancer, less aggressive than my last cancer which was grade three. Tap, tap, tap onto the keyboard. Tick box here, select grade there.

Enter.

There appeared the most beautiful bar chart I will ever see. A huge purple rectangle full of life.

92% ten year survival rate from just getting the surgery.

2% added ten year survival rate from hormone treatment.

1% added ten year survival rate from chemotherapy and Herceptin.

She looked at me and said if it was her, she wouldn’t take the chemo and Herceptin. The brutality and damage done by them weren’t worth the 1% benefit.

Which is the question a lot of cancer patients must ask themselves at some point. Is the treatment worse than the disease?

Today that answer is yes. I’ll take my safe heart, my functioning immune system, my hair, my energy, my freedom, my recovery, my life.

Not for 1% will I risk it.

I left that room, surprised and shocked for good reasons instead of bad. Each day I feel stronger and fitter, it won’t be headed for something much worse. Each day of recovery is just for me. Just for my future. I can make plans again now that I’m free of the chemo prison.

Today I plan to celebrate. With pumpkins and treats and skeleton bunting.

Happy Halloween my friends. Life and death together in one day. As it was meant to be and always will.

 

 

 

 

Move like a mollusc

snail

Almost every day I try to go for a walk. I say walk, but it mostly resembles a cross between a distracted toddler and a snail who’s lost its slime. I shuffle along, overtaken by the most elderly of human beings. Because I look pretty hale and hearty, passersby don’t quite know what to make of me. I often get looks of confused pity mixed with impatient skepticism. As though my youthful shuffling gait and non-rattling deep breathing is an affront to their box of visible disabilities.

On these ‘walks’ the thing I dread most is the kind motorist.

I have to cross at least five roads on my challenge to get to the next cafe in my mobility challenge. As I approach the borders of the pedestrian lands and enter vehicular territory, my control over the pace I can handle shifts. The car slows down and an anonymous hand waves, flicks or sometimes merely a finger gestures me to cross.

My heart sinks with the stranger’s kindness.

The unwritten rule of allowing a pedestrian to cross in front of an approaching car is that said walking human will not inconvenience the motorist further and will speed across the road in as little time as possible. This part of the deal I cannot honour.

I sigh deeply, looking like an ungrateful wretch before we’ve even begun. And I’m far too British to wave the car away. I’m too afraid of us getting stuck in some kind of waving loop, each person trapped in competitiveness politeness. So I obey the flicking hand and move into the road.

Except I don’t speed up. I can’t. I break my part of the bargain. Instead I keep my eyes firmly rooted on the road ahead, each slow motion step make me hyper-aware of the rising impatience of the driver. As though they were standing right behind me, puffing irritated air into my ear.

Meanwhile other pedestrians have taken advantage of the situation and sprinted past me, highlighting the sluggish pace of my own body even more. I act as a kind of slow motion lollipop lady.

I know if I speed up, if I push myself, there will be a price to pay. Much as I’d like to give the gift of ten extra seconds to those charitable drivers, I can’t afford the cost to myself. If I push myself it has to be on my own terms and for my own benefit. Because nothing else is worth the ramifications. Too long or fast a walk could mean two days motionless and gloomy on the sofa. That I can not bear and it’s those kinds of days that challenge my mental health most deeply.

My life is all about balancing energy. Conserving it, spending it, generating it, paying for it.

Tiredness is normal after surgery. The anaesthetic has a profound effect on your body function and a hospital stay can disrupt circadian rhythms. Being less mobile can affect your muscle mass. Opiate-based pain medication can make you drowsy and slow your breathing. If you’re not breathing so well, then oxygen isn’t getting to your cells and they’re not doing their job fantastically well.

Your wounds are also a problem. Not only has your body got extra work to do to heal, meaning even while you’re sitting very still you’re actually working a full time job internally. But your wounds are continually evaporating away precious water, like steaming cracks in the Earth’s crust. During my pre-assessment appointment, the anaesthetist educated me that skin holds water inside our bodies. Seems kind of obvious but when our skin is cut, water literally evaporates out of the tissue that’s exposed. This is why the nurses kept filling my water jug over and over and over. Dehydration shrivels your brain and your cells need water for just about everything.

So there’s lots of reasons to be tired, even fatigued. I oscillate between the two but tiredness is the set on which my life is performed. Fatigue means the show cannot go on. Then only sleep or withdrawal will renew me. It’s tricky to know when I’m tired but can regroup and when I’m fatigued and must stop. Sometimes there’s a long delay before I actually feel the effects of whatever I’ve been doing. I have to be a kind of tarot reader for energy levels.

If I’m really unlucky I could become chronically fatigued, meaning the condition will be ongoing and long lasting. Luckily I don’t have the predictors for that possibility. I wasn’t depressed or had anxiety before surgery. My levels of general health and fitness, aside from the deadly disease, have set me in good stead.

For now I work with what I have on any given day and try to strive for more. Or accept less.

One slime-less snail move at a time.

Let’s talk about pain

I went to have my wounds cleaned and redressed yesterday at the hospital. The waiting area was hot, crowded and noisy. Loud enough that I couldn’t hear the real life crime programme on the tv screen, meant to entertain us. After 15 minutes of waiting, in dashed a harrassed looking woman hunting for a seat. It took me a few seconds to look past the normal clothing and perfect make up and see the poorly patient I spent four days opposite on the ward.

We greeted each other like old friends who had been separated by years and miles. There was much squealing and gentle, affectionate touching of arms. Air kissing has become useful and meaningful for the first time in my life. It allows for intimacy without painful body contact.

She moved a chair to face me and we shared our week’s stories of devastated energy levels, small triumphs and frustrations, compared pharmacology and talked about poo a LOT. She also caught me up on what happened on the ward after I left. I was the first to escape out of our four inmates and carry the guilt of leaving them behind.

My neighbour, the one who rebelled in the wee hours of Day Four, got out the day after me. As did the patient diagonally opposite me. But the woman I was with now in the waiting room was the one with the most complications. I wasn’t expecting to see her so well so soon. I had left them with my cafetiere and they toasted me with a freshly brewed pot. Later that same day the cafetiere was confiscated by the nurses. They did bring them coffee from the pot but the freedom of making their own whenever they wanted had been snatched away.

After everyone else was discharged my friend was left alone on the ward, so they transferred her. To the men’s ward. She then contracted an infection but there was no scanner in the hospital so she was emergency transferred to another hospital.  Her surgeon came to visit her there and stood at the bottom of her bed and scolded that it was her fault she was so sick because she ‘accepted too much morphine’.

Pain is a tricky beast. It is individual. It has multiple sources. It is not well understood. Luckily we have made some progress but it wasn’t until the late sixties that pioneering nurse Margo McCaffery’s description was accepted that “Pain is whatever the experiencing person says it is, existing whenever he says it does.”

Pain is self reported and subjective. Every person experiences it differently and some drugs work better than others. My pain management plan stuck to the standard. Paracetamol, ibuprofen and codeine for breakthrough pain. I knew the value of keeping ahead of pain so I ignored the nurses and took all these drugs every six hours on the dot. I set my alarm now and time my sleep around it.

Best practice on pain management is still patchy. 17% of women who receive a single breast reconstruction experience severe pain the first week after surgery. The NHS target is 5%. Entangled in that reality studies have shown that women and ethnic groups are discriminated against when reporting pain and being prescribed medication.

I witnessed several incidents when my friend reported pain to nurses and doctors and waited an hour or more for medication. One morning she dropped one of her Tramadol tablets and asked the nurse to find it.  Nothing happened for more than an hour. I got out of bed and painfully shuffled to the reception desk and repeated the request before action was taken.

Meanwhile, my friend spiralled into pain. Once that happens, it’s much harder to bring them back. It’s more sensible to have regular doses and keep ahead of the pain. If it gets a grip, you need much stronger drugs and they come with their own problems.

So when she didn’t get her regular dose, she asked for morphine more often. A spiral that took her to infection, danger and then the surgeon’s accusation.

Not all the medical staff behaved this way. The pain management team who visited made a plan for her. The medical doctor visited again and made a plan. He explicitly said that getting on top of the pain was preferable than giving it on request. But the plan didn’t always get through. Either bad practice, lack of training, staff shortages, carelessness, prejudice and sometimes outright neglect, meant she didn’t get what she needed. And it ended in potential disaster. A disaster she was then blamed for.

She cried when he said that to her. Tears pricked my eyes when she retold it.

We commiserated, shared our fears, swapped phone numbers and my name was finally called after an hour of waiting in that hot, smelly room. For once I was grateful for the delay, grateful to hear her words and share mine.

I shuffled to the treatment room and the tape holding my wounds together was gently removed by the nurse. Even though the clinic was crazy busy, she went slow and carefully inspected each scar. She wiped away the ooze when it appeared, cleaned out my bruised and battered belly button. She redressed the many cuts in my skin and said it all looked fine.

I left the room feeling tender and exhausted. I looked eagerly for my friend in the waiting area but she was already having her own wounds cleaned. I hope the invisible damage to her mind, her confidence and her psyche repair soon too. Damage that could have been avoided, words from her caregiver that she should never have been burdened with.

It was not her fault.

She was not to blame for her pain nor for expressing it.

She should have been heard. She should have been cared for better. She deserved that. We all do.

My body, my machine

The cancer is gone. The cancer is gone. I focus on this mantra in the more challenging moments of post operative life. That’s what all this was for. It’s The Reason I Went Through All This. It’s surprisingly easy to forget that when you have a mastectomy. From my own experience with immediate reconstruction, the distraction intensifies.

I woke up at 4am on Day Four after surgery. Actually I was woken up. My neighbour on the ward, was upset because she had been woken up by the nurse for ‘obs’. This is when the nurse takes various different observations. It can be blood pressure, heart rate, etc. For us breast reconstruction folk, it means pressing down gently on our new boobs to make sure the blood was still flowing to them and listening to our heart beat where our nipples used to be, using an ultrasound. It’s akin to the ultrasound you get when you’re pregnant. The mirroring of pregnancy and breast reconstruction are undeniable.

These observations are done in decreasing blocks of time. So the first night it was every half hour, second night every hour, third every two hours and so on. By Day Four, it was every four hours. The day nurse had suggested when she handed over that the night nurse actually do it at 6am just to give us a decent night sleep. Night nurse wasn’t up for it.

My neighbour on the ward was older than me, probably in her early sixties. I’m generally always the youngest kid on the breast cancer block. For the first two days we weakly greeted each other through blue medical curtains, not being able to get beyond our bedside to glimpse one other. I knew her voice intimately before I saw her face.

She had cancer before, when she was 49. She got it removed, refused the chemo, left her home and job and went travelling. She didn’t regret a thing. She eventually went to live in Portugal and looked after her mother until she died. Then it came back two years ago and she had her breast removed, again refused the chemo, got a new boyfriend and now was getting her boob reconstructed.

She was delighted with the result. Women who have breast reconstruction delayed are shown to be happier with their new ones than women who have it immediately after mastectomy. Maybe it’s because their baseline is different, maybe it’s because they’ve had time to consider all their options and make an informed choice. Lots of women (40% of my surgeons patients) go flat. It’s such a personal choice. Each body, each mind will find what’s right for them.

My ward neighbour was a changed woman after cancer. Freer, more focused on self care but also willing to care deeply for others. When I eventually saw her face, she had smiley eyes, laughter lines aplenty. She was soft voiced, but precise and powerful in her words. I liked her immediately.

Over the days that followed she shifted and changed. As we all did. Until that 4am awakening, when the nurse did one too many obs. She got out of her bed, with the stuff she could carry, took her blankets, her pillow and squatted in the day room in protest. It wasn’t just the obs. It was the broken bed she had complained about many times and it had never been replaced. It was the terrible food she had for dinner that she only managed two bites of. It was the pain. The helplessness. The lack of control.

So she took back control. She left the ward and threatened to leave the hospital. I know how she felt. Maybe we were on the same schedule of despair. I awoke to her muttered rebellion as she walked past my bed and then I immediately needed to pee. Getting to the toilet after a mastectomy and reconstruction is no small feat. There are so many steps to complete. We have to sleep in a kind of upright foetal position because our stomachs are too tight to lie flat. I have to locate the bed’s remote control, lower the feet end, higher the head end. Except there isn’t one button for that because the head and feet rise and fall at the same time. So you have to do both and then lower the feet on a separate button. It took me a day and half to figure that one out.

Then still I have to get my legs over the side of the bed which involves a sort of controlled fall. Then find slippers, get glasses on, make sure my drains aren’t tangled, ever so slowly stand upright. Never entirely so because the tightness doesn’t allow for full straight back. Then shuffle along, feet out to the sides like an elderly penguin.

Eventually I found myself sitting on the toilet successfully peeing, and a wave of despair passed over me. What was the point of this? Eventually I’ll get to this part of life again, whatever happens, where I’ll be this debilitated and then I’ll die. When I can’t pee. I can’t reach for something naturally and smoothly. I can’t drink without a straw. I can’t jump out of bed without a series of careful calculations. I can’t reach the call button, so lie crying until I shout for another patient who can to get help.

Despair.

I grew dizzy from it. From the intense awareness of my self as a machine. A being that will break down, malfunction and there will eventually be no more fixing. The wave continues for a while. Then I reach over to get toilet tissue. I’ve gone to the toilet cubicle that I know has a tissue dispenser I can manage. The other toilet’s dispenser is angled just behind you so it’s impossible for me to twist around to use.

I wipe, slowly stand, wash my hands, grab my drains bag and go back to bed. It takes me a full half hour to achieve this pee mission. In that time, my neighbour has been found by another nurse, apologised to, made comfortable in her broken bed, and is asleep and peacefully snoring. When I couldn’t find the point for all this pain, all this suffering, my body as machine put one foot in front of the other and got me into bed too.

I settled in for another little bit of precious sleep before the noise and chaos of breakfast time on the ward. But it’s not until I heard a few hours later that I was going home, I remembered my mantra.

The cancer is gone. The cancer is gone. That is what all this is for.

That is what all this is for.

For now, that’s enough.

Op Success!

Just got off the phone with Heidi’s surgeon, Andy Mellington, and got the great news! No complications, all went according to plan. Heidi is in the recovery room now. I might even be able to talk to her on the phone in a couple of hours. Thank you to everyone who sent lovely messages. I’m sorry I haven’t managed to reply yet. It’s hard to type and chew your nails down to stumps at the same time, and now it’s hard to type and cry relief-flavoured tears of joy at the same time. Love you all!

 

 

Marked for not-death

Marked

I just got home from a long, long afternoon and evening at the hospital where I’ll be having surgery tomorrow. There were forms upon forms to fill in, repeat blood tests and endless repetition of what is going to be happening tomorrow.

I actually don’t mind the information part. ‘Bring on the information’ should be my middle name. If it wasn’t Ann. The part I could’ve done without was each person reminding me that it was a BIG operation. I know it is. Now you’re just scaring me when I wasn’t all that scared before. I guess it has the added layer of knowledge that I elected for this kind of operation so it’s on me if it goes wrong. There’s plenty that can go wrong. A blood clot (10% risk), the whole thing fails and I wake up with empty boobs (1-2%), embolism, thrombosis, necrosis, bleeding, seroma, infection…

As each box on the consent form gets ticked, my heart sinks.

At the end of the long list, the surgeon looks up and smilingly says “but none of that is going to happen to you.” It works. I’m reassured by his confidence. Apparently my CT scan revealed ‘very nice arteries and veins’ ripe for the picking. I think he would take it as a personal affront should my body reject his skilled work.

Then he used my body as a canvas to create his bloody art.

Belly

I haven’t shown you the intense parts of this Sharpie based body art. There are lines, dotted and straight, going across, up, down and through both my breasts. They are lines for cutting, for measuring symmetry and finding medians. They are lines that show me how most of my skin will be removed, folded over and reattached beneath to create new boobs.

I stood in front of him as he sat, boobs at eye level, and he drew on me. I couldn’t decide if it was the fumes from the pen or the total absurdity of my life that was making me dizzy.

The good part about going there today wasn’t that we got all the paperwork or that I’m marked and ready to go tomorrow. Those are things they care about most. The good part was seeing the environment I will be in for the coming difficult days.

Bed

This is my bed. It’s a relief to have a window. And a tree. And the sky. The ward was bright and not too hot. The nurses kind and friendly. There are three other beds and ok my neighbour is a bit racist. Yes, I got that message within two sentences of engaging with her. But I intend to be unconscious mostly for the next couple of days so hopefully she’ll be gone by then.

Generally I’m feeling calm and fine about it. Occasionally I get a flash of frustration that I have to go through this ordeal. Occasionally I get a wave of fear wash over me. But generally I feel ok. And now I have to drink four of these crazy pre-op drinks that are basically sugar in water. So imminently I imagine I’ll be feeling up, up, up.

Pre-op

***I go in at 7:15am tomorrow and out by 7/8pm. Adam will update on Facebook and the blog.