Fear, anxiety and giant knickers

Breast reconstruction pack

I got a big envelope in the post yesterday. It told me all about my new breasts and how I’d get them. I sat and read it all in one sitting. I like detail. It makes me feel easier with things I can’t control. It helps to know what’s coming. I dislike surprises greatly especially if they come in the form of sharp pointy implements.

Some things came as a shock though in that very helpful pack. Here are the things I wasn’t expecting. Things that made me weep.

I will be in the high dependency unit for the first night after the surgery. I will have a catheter, an IV drip, oxygen mask and half hourly checks. There is a 1.5% chance that the tissue they take from my tummy to make my new boobs will “fail”. It might die. The surgery they perform is called Deep Inferior Epigastric Artery Perforator (DIEP) flap. It’s the most common, used in 70% of cases. They take fat and skin from my tummy and move the whole piece to my chest. Microsurgery is used to reattach each blood vessel to my chest wall. It’s incredible. It also takes 8 hours.

There’s also this chance of failure so if that happens, I’ll need to go back into surgery.

Other things that were a surprise. I will have daily injections of a blood thinner which I’ll have to self administer for a week after being discharged. I’ll have to wear giant lycra knickers up to my boobs for six weeks to hold the wound in my tummy together. I didn’t even know these knickers existed.

Giant knickers

This is opening up a whole new world of lingerie. Don’t get me started on bras. I spent four hours yesterday looking at, researching and talking about bras.

I know from painful experience that having the right piece of kit at just the right time can make a profound difference to a healing body. So a certain amount of preparation and research or the right advice can be impactful. Like last time when I spent hours traipsing around shops hunting down button up tops because I wouldn’t be able to lift my arms to put clothing on over my head. Turned out I could have just stepped into cheap vest tops instead and saved myself a fortune and precious time and energy.

So I know the value of the right solutions. But after spending all day fretting and worrying and trawling expensive post surgery websites, I’ll have to wait to talk to the surgeon. Each surgeon has different preferences and techniques and each hospital seems to have different policies. I don’t know what size boobs I’ll get yet until they assess my body’s ability to be shifted about and remodelled. I don’t know whether they will be bigger because of the swelling. There’s a lot of variables and not all of them are clear.

This is hard for me. To sit, to wait, to not have the info I need to tick another thing off the list.

It’s also triggering a lot of unresolved anxiety from the last surgery I had. I coped with chemo and radiotherapy by meditating and processed those experiences fairly efficiently. But being faced with the words “drains” and “pain” is propelling me straight back to the horrors of the last chaotic experience of surgery. Pain is very challenging to process and to manage. Meditation abandoned me last time. A friend who also had breast cancer told me a tip that she had been told. To meditate on one part of the body that didn’t hurt. At one point all she could find was the tip of her nose. I guffawed at this image but it was a laugh fuelled by fear.

My anxiety about pain is immense. It was the closest I came out of all the treatments to defeat. To wishing for death.

Intimately connected to that is the drains. I will have three this time where I only had one before. My fear of those becoming clogged, being snagged, ripping out makes me swallow hard.

There are some reassuring surprises though too. The programme for recovery seems structured with a clear focus. I’m fitter, healthier, stronger this time round. I haven’t had chemo to weaken me. My weight is lighter, my muscles stronger. The hospital have a clear plan for each day I’m there. Five in total.

But I am still anxious. And it’s ok. I don’t need to be fine about this. It’s major surgery and I do sometimes question why I’m making it worse for myself by having the reconstruction. But there’s no perfect options here. Just the best of a bad bunch. And I am still so blessed to have those options.

In this moment though, I’m just going with the fear and anxiety and letting it flow. Best to acknowledge, recognise and manage it. It’s what is real. I accept it.

Both boobs are going

I just got a call from my breast care nurse. Actually my breast care nurse is on holiday. As is my GP. It’s very inconvenient to get cancer in August.

My replacement nurse, who sounded like she needed a holiday, filled me in on the discussion the multidisciplinary team had about me today. They agreed to my request to have both boobs removed. A bilateral mastectomy in official terms. They decided not to do an MRI on my spine because they’re not worried about the bit that’s weird. Could be normal wear and tear. Could be an injury that healed.

Now we wait for an appointment with the plastic surgeon and then they’ll book the surgery date.

In the meantime I’ve made an appointment to see the GP to get a full blood analysis of my vitamin and mineral levels. I just want to make sure nothing is deficient. And I’m going to ask for a prescription for melatonin as I’ve read some interesting studies showing this could provide better outcomes for breast cancer. I’m also meeting with my gym instructor to make an exercise programme for recovery and madly ordering things to help me deal with the horrors of surgery to come.

It’s busy. Very busy.

No spread outside the boob

The rest of my body is clear of cancer.

Just one small suspicious thing at the base of my spine but it’s unchanged from 2015 scan and they’re not worried. I will have an MRI just to check. I’m not worried.

I got a second chance.

I’m grateful beyond words.

The past two days have sucked. Thank you all for getting me through it. I crumpled and you all held me up.

Thank you.

Next step mastectomy.

Results tomorrow

CT scan

This is my body. From the inside, out. I have no idea what it means, other than my hips are wonky and my spine looks curved. But someone in the hospital will look at these scans and see something I don’t. Or not.

I’m very, very lucky to have amazingly generous parents who are blessed with resources. So they offered for me to have the CT scan done privately. This is a lot easier to accept when it’s someone else’s money. There are no adjectives for how grateful I am.

What this has meant is no two week wait in the queue for NHS services. I don’t feel great about being a health care splitter but I honestly and deeply didn’t think I would make it through the weeks of waiting. Other scans I’ll wait for. This one is too important. And too terrifying.

I went into emotional shock yesterday as though I had just been in some natural catastrophe or car wreck. It was a physical experience that I wasn’t coming out of. Taking action to get the scan done helped me break free of it. Mostly.

Now I have a CD full of images that reveal the answer to the question ‘Has it spread?’ but I have to wait until tomorrow evening for that knowledge. One more day. Prepare yourselves friends for the worst.

What could be

Remember that last mammogram, the one that was going to take eight weeks to get the results back from? Remember how I complained and chased and phoned and whined until they told me it was clear. Turns out it wasn’t.

Turns out the second radiologist to check it found something suspicious. There are teeny tiny spots of calcium in the bad boob. There are only three that I could see. They showed me on the scan. Three tiny specks that you need to zoom in very close to see. I can understand how the first radiologist missed it.

Three microscopic white specks that are suspicious. Could be scar tissue. Could be from radiotherapy. Could be nothing.

Could be the sign of precancerous activity.

Could be everything.

They wanted to do a second mammogram. Sometimes if the scan is really clear, they can tell from the shape and spread of the calcifications what they actually are. So they hooked me up to the machine again in that cold, cold room, but couldn’t be certain.

They did an ultrasound to check for lumps and bumps. Nothing. Good.

But they weren’t happy still so they hooked me back up to the mammogram machine. This time on my side lying down with a whole nurse purely to be kind, to keep me distracted. They anaethistised the boob, a sharp scratch.

Then the mammogram tells them exactly how deep to dig with their giant needle. They take five biopsies and are very happy to capture those tiny calcified cells. They’re very pleased, I can hear it in their voices. I’m just relieved I don’t have to have the giant needle punched in my body again.

The nurse presses on the wound for ten minutes to prevent bruising and stop the bleeding. I’m grateful for her and for the anaesthetic that is still working while she pushes down on me.

Now I’m very tired. The wound is healing but my body is so very tired. Two weeks until the results come back.

Two weeks.

I know this terrain. Scanxiety. I know how to cope. Oh but I’m tired of just coping. I was beginning to take time for granted a little. I didn’t plan ahead far. A year I thought, maybe three? I could start this sewing business. I could figure out how to get my family a secure home to live in. I could..

But we’re in different ‘could’ territory now. It could be nothing. It could be everything.

Two weeks.