When your boob exploding is just the start of the Bad Things

This is a bottle of my blood. It’s how I marked the passage of time for one month.

“I don’t know how to make it back from this. I don’t know how to get to a normal life. I’m afraid that this is my life. This is what I get. And if that’s the case, maybe I just need to let go and be happy for this but I had such plans.

Not concrete, I’ve-got-a-mood-board plans but grand vague plans. Like dancing at weddings and being old and being old, dancing weddings.

I’ve been ill for three quarters of my daughter’s life. This is who she thinks I am. I don’t want her to know this person. I don’t want to know this person. These memories she will have are not what you are supposed to have of your mother, your early years.

Cancer has taken 18 months of my life

Cancer kills You even if it doesn’t kill you.

I’m gone. Whoever I was isn’t here right now. I don’t know how to find her. I see photos of myself before my diagnosis and I think “she has no idea what is coming”. I wonder if there’s something in old photos of me, maybe something in the eyes that is different to now. I looked different then, sure. I had huge hair and I wore more make up and I dressed better. But I don’t recognise that woman looking back at me. It genuinely feels like a different person.

And I mourn her.

I mourn the not knowing. I mourn the not having to think about The Big Picture. I mourn the me that didn’t wonder how long I would live, or when I would next be back on hospital. The me that didn’t panic when meeting people, even people I know well, as it’s just been so long since I’ve been in a normal situation. I mourn for the me that made plans. I mourn for the me that didn’t know that was a luxury.

I wrote that maudlin lot at 2am in a hospital ward, shortly after another emergency surgery. I had a lot of general anaesthetic to wear off, a fair bit of fentanyl, and I was queasy and couldn’t sleep.

You may or may not remember that a severe infection caused my mastectomy reconstruction to rupture during a flight. Since then, my surgeons have removed all their hard work, stripped out and cleaned the cavity in my chest three times in theatre over 10 days, and replaced the reconstruction with a new implant. Because of all that work, the surgical drains implanted to help clear the healing fluid had to stay in for a bit longer as I just kept bleeding.

The problem, if you can call it that, is that I heal very quickly and in the ten days without an implant, a decent portion of the pocket initially created by the surgeons had healed up. So they had to tease everything back open. To minimise scarring, they’d also done all three operation through the two inch hole that had torn mid-flight across my breast. Needless to say, I was a bit sore. So, the drains that normally come out around day 4 or 5 after surgery were still in place three weeks after the op. This meant that we went to a (fabulous) wedding with a drain in my handbag and the tubes poking out of my arm sleeve.

If you look closely you can see that my handbag has a tube running into it. That’s my drain. It’s running through my skin and up out of my sleeve.

Just after three weeks post-surgery, my surgeon made the call that it was time to remove the drain as it’s a possible source for infection to get in (even though it can help avoid infections by sucking gunk out. What a pain.). He took the drains out (30 minutes after I chugged some painkillers) and I went home for a blissful drain-free shower. At that point, I’d been attached to drains of varying sizes for over a month. They go in to holes in your side and they are loosely stitched in place. Loose enough so that they’re not agonising but tight enough to that they are painful. Just the right amount. I was so pleased to have them out that I bought a slice of cake and told my husband to go for a drink after work as my mother was visiting and helping with the baby.

I had an early night and realised that in the month I’d been cooped up, the weather had really turned and I wrapped up in warm in bed.

I wrapped up really warm.

I just couldn’t get warm. Did I mention I couldn’t get warm?

My husband got home to find me boiling hot, cocooned in a duvet convinced I was freezing. Not good. After some late night calls to hospital, he took a weak and grey me to hospital first thing the next morning where they confirmed that my new reconstruction was, heartbreakingly, infected again (maybe that should be still infected, who knows?). I ended up being admitted for 5 more nights on strong meds to clear the infection without surgery.

It worked. The infection retreated (you could actually see the red line retreat down my chest wall) and I was cautiously sent home on a Tuesday. I lay more or less motionless for 2 days while my husband went to work, my daughter went to nursery and my mother did house-things. Thursday morning I woke up (yes, that’s just two days later) and a portion of skin that was looking a bit ‘odd’ was now basically dying and my new scar line was leaking a dodgy looking fluid. Back to hospital.

I was admitted for emergency surgery that day. This time they had to remove a portion of my necrotic (read: dead) skin and tissue. This means that they can’t put the reconstruction implant back in and I have a very large, very new scar across my chest. What I now have is a temporary fix that will need 3 procedures over 6 weeks, after my mega scar has healed. Then, and only then, will they swap out the temporary implant with a final one. In another major operation that could, potentially, get infected.

After I had the final operation, I got home and basically went to bed for a week. I barely left the house and I really struggled. It’s really tempting to curl up and do nothing at times like this. And that’s what I did. I felt like all my efforts were thwarted and pointless and came to nothing.

Cannulation means they can give me IV antibiotics, but it also means I can’t go home. The view from my hospital bed at 2am during some dark (literal and metaphorical) times. My daughter made sure I was equipped for this unsettling time at home.

I can’t say that I feel great now. That I’m positive or that everything will be fine. I really don’t like talking to people on the phone at the moment to ‘catch up’ as I have absolutely no news to report. I’m waiting and counting off the tablets on a huge course of antibiotics. I’m a bit frightened for when they run out. But I did go out for a quick dinner with my husband while my mother babysat. And I spent a morning colouring in with my daughter (I coloured, she strongly delegated mostly, I’ll be honest).

She’s cutting two teeth at the moment and no-one is sleeping for more than 45 minutes in a row in our house. But I have two weeks off surgical shenanigans while my new wound heals, so maybe it’s time for some normal family strife, for two weeks at least.

I’ve watched a tonne of TV as I’ve attempted to give my skin as little strife (from gravity, even) as possible. Among others, I’ve watched seven whole seasons of The Walking Dead in four weeks. What I’ve learnt from that will be a whole other post…mostly, it’s ‘don’t fall over’.

Not a bad motto, as they go.

This time in lying in bed, rather than hospital. Claps will help me stave off the urge to stay indoors and eat biscuits when I should go for a (slow) walk in the fresh(ish) air.