Before and After a Bilateral Mastectomy

It’s been four days since my bilateral mastectomy.

It’s only been about three weeks since I found out I needed one.

Here’s some before and after reflections.

When my surgeon first gave me the news I shed only a couple of tears. Too many questions. She was straight into talking about reconstruction. I parked my emotions and listened. I tried to run through all of the questions I needed to ask. I failed. You can read my previous blog about the weeks that followed.

When I saw my surgeon two days before the surgery I left feeling calmer and at peace with my decision. When Graham asked how big the surgery was going to be, Kylie replied that it would be useful to imagine that I was having two lesions this size removed from my body. It’s not a small operation. I found the analogy very useful. I shifted from thinking of my breasts as breasts to thinking of them as potentially cancerous lesions that were putting my life at risk.

I think the two weeks of just letting my emotions ebb and flow, without judging them or trying to change them, helped me to arrive at a point where I felt good about surgery. I was also reassured to hear that there would be full pathological examination of all the removed tissue, along with another sentinel node biopsy to determine if I had any more active cancer, or pre-cancerous changes.

I have been practicing a technique called ‘expansion’, where I just make room for whatever emotions surface rather than struggling with them. I’ve also recognised that my thoughts are just stories I tell myself. They may or may not be true and their truth really doesn’t matter. What matters is whether or not my thoughts are helpful; whether they help me to live a life consistent with my values.

I am very grateful to Kerry Wagland, the psychologist attached to the Radiation Oncology Clinic at Gosford, for introducing me to these concepts. I’m also grateful for her recommendation that I read ‘The Happiness Trap’ by Russ Harris. I’ve spent a good portion of my life reading ‘self help’ books, practicing Cognitive Behavioural Therapy and overcoming the Post Traumatic Stress Disorder caused by working as a police officer (particularly in child protection). In all that time I haven’t found anything as useful or as simple as Acceptance Commitment Therapy. Life changing. I highly recommend it. Even if you don’t think you need it.

I always leave packing to the night before surgery. It keeps me occupied. I have a running list that sits on the table for the week before so I can make notes. There’s always those things we think of later but my beautiful husband has taken care of those. To assist anyone else facing a long stint in hospital, here’s my list of things I’m really happy to have with me:

1. Track suits with front opening tops and comfy clothes

You need front opening things following a mastectomy, obviously, and I find track suits more comfortable than your average pair of pyjamas. They also tend to be cheaper. I usually sleep naked so I wasn’t keen on buying lots of pyjamas, particularly as I wouldn’t have any further use for them once I was home. Trackies are great for sitting around in during the day and if the hospital staff are okay with it you can go for a walk outside. I’ve got one pair of front opening pyjamas that I put on at night.

I’ve also packed a soft hat and a pashmina style scarf. The hat is great for the inevitable bad hair days that follow surgery and the scarf keeps my neck warm and doubles as a bed shawl. It’s surprising how cold hospitals can get, particularly at 2.00am. I’m also glad to have a large supply of soft, very stretchy singlets, more knickers than I thought I’d need and a front opening cardigan.

I did think about having my hair cut short again because I knew it might be a while before I could wash it. I couldn’t bring myself to part with my ‘chemo curls’ and the little white tips that came with them. After being bald for so long I’m enjoying having a little bit of length to my hair. If you’re coming in for surgery you might feel differently. It’s certainly looked a mess. There are no hair dryers in hospital and I couldn’t use one anyway. Short hair would have been a lot easier. Still.

2. Comfy slip on shoes

Same principle as the trackies. You can head outside for a break from the ward. Something that slips on but is still secure on your foot (like a boat shoe) is best. My balance is a bit off, partly due to the absence of my breasts and partly because of the medication. I would actually be okay with tying shoe laces but you can’t be sure until after surgery, so slip-ons are best. Anything floppy (like thongs) is discouraged.

3. Thongs

No good for walking around but essential for the shower. Avoid catching (or spreading) tinea. Avoid picking up any other nasties through broken skin in your feet. In the lead up to surgery I paid particular attention to foot care to make sure I had no cracked skin and that I didn’t cut myself when I trimmed my toes.

4. Mouth care essentials

Recently I read an article describing how babies get their gut flora from their mother’s mouth while they are in the womb and not from the birth canal, as previously thought. Our mouths are very important to our gut health, even if we aren’t pregnant. I’ve packed Grant’s aloe vera toothpaste, dental floss toothpicks and some biotene mouth spray. I don’t usually use mouth spray or mouth wash. The alcohol based ones have been shown to promote bad breath and I can only imagine the damage they do to friendly bacteria. Biotene is, however, alcohol free and very useful following surgery when your mouth and throat can feel dry and irritated. I’ve also got a little tube of Kenalog for mouth ulcers, just in case. I’ve also got lip balm. As  hygiene precaution I’ll throw out the toothbrush and the lip balm before I leave for home.

5. Skin and body care essentials

For me, these are usually all natural products. I’ve got Trilogy Rose Hip Oil for my face (and sometimes my hair if it gets really dry), hemp oil perfumed with essential oils for my body and some left over moisturiser in a pump pack. Hospitals are usually air conditioned and air conditioning is drying. I’ve bought my own soap. They have something called ‘Microsheild’ in the shower but the main ingredient appears to be sodium laureth sulphate. No thanks. I’ve bought a bar of natural soap from the local organic shop instead.

I forgot to pack tiger balm. My husband is bringing some in for me. I’ve had aching shoulders since surgery. I was able to have the hospital physiotherapist treat me which has helped. A hot pack would have been nice too, but this ward doesn’t allow them for safety reasons. They do have great single use heat packs that stick on your skin. If you’ve got cramping then let the nurses know and ask for some relief. Rubbing tiger balm in is also a great way for family to help. So are hand and foot massages.

I also packed nail clippers and a nail file. I don’t usually wear nail polish and it has no place in a hospital. Horrible smelly stuff and bits of it can flake off and end up where it shouldn’t be. Avoid.

6. Natural antiseptics; Eucalyptus spray and tea tree oil

I’m a long term fan of tea tree oil. It’s wonderful on small cuts and scrapes and you can also use it to wipe down surfaces or splash into smelly hospital drains. Hospitals are notorious for golden staph infections and it’s believed that high grade disinfectants have helped this highly resistant bacterium to develop anti-biotic resistant strains. When you’ve had major surgery you’re particularly susceptible and it’s the main reason for the ubiquitous hand sanitizer all over hospital wards. About two or three out of every ten people carry golden staph in their noses or on their skin so impeccable hygiene is important. A staph infection in a wound will seriously complicate healing and can kill you.

I routinely use tea tree oil under my arms and on any minor skin irritations while I’m in hospital. I also clean around (but not on) my wound site with it. Yes, it does sting briefly but not badly. If you quickly follow it with rose hip oil it stings less.

Everyone that walks into my room says ‘What’s that lovely smell?’. I use eucalyptus oil at home but the Bosistos Eucalyptus Spray is more practical in a hospital. They also make one with lavender oil if that’s your preference. It smells divine and I find it very calming. It’s a natural bronchodilator so it helps me to return to deep, healthy breathing after an anaesthetic, when lungs can become congested.  It’s a natural antiseptic that will also help combat golden staph and it helps to hide any unpleasant smells. Which brings me to the next essential item.

7. Fibre and dietary supplements

Surgery notoriously messes with your bowels. There’s a reason nurses keep asking about whether or not you’ve had them open following surgery. It’s possible to get badly backed up and if you can’t get things back to normal after a few days they’ll resort to laxatives and then enemas. You’re also likely to be impressively windy. I use either Fibresure or Benefibre which both dissolve in water (or coffee). I’ve also got a supply of fresh apples, mandarins and apple sauce.

Depending on where you’re hospitalised you might also be lucky enough to have access to salad and fruit as part of the dietary options. Avoid the sugar, the white bread, the cakes and biscuits and go easy on the protein (but have some of it, particularly the red meat). If there’s a cafe then ask someone to bring you a real coffee in the morning, or walk out and get one. It’s a legendary laxative, particularly with a good dose of fibre in it. Drink more water than you would usually drink.

I’m taking a vitamin D tablet each day. There’s not a lot of sun on a hospital ward and when you’re in for an extended stay that’s an issue. Vitamin D deficiency is now very common, particularly among women and it can undermine healing and vitality. I’ve checked with my doctor that this supplement is okay. I’m shocked when people who would be very careful with prescription or over the counter medications seem to be blasé about supplements. Some, like fish oil and vitamin K, can cause complications including excessive bleeding and bruising. Please talk to your doctor well in advance of surgery about everything you’re swallowing so you can cut it out in plenty of time. Even green tea can be problematic.

8. Technology

I’ve got my computer with me (obviously) and my own dongle. This hospital has free internet for patients but it’s slow and unreliable. I need to be connected! One of the first things I did following surgery was to post a selfie to Facebook. It’s a huge relief to friends and family if they can see you smiling and doing well. I’ve also packed my camera and I’ve taken photos of my wounds, my drains and my hospital room. My husband took a great ‘glamour shot’ of me in my binder. I don’t know if I’ll ever look at the surgery wound photos again but other women have told me they’re sorry they didn’t take them. Better to have them and not need them. I’ve also packed my iPod with my favourite relaxation music and guided meditations. This is brilliant in hospital where the unfamiliar noises can make it hard to sleep. I’ve attached the sporting style of headphones so they don’t fall out when I lay down. I’ve also got my phone with me.

10. Fluffy blanket and maybe a pillow

I bought myself a really soft, fluffy blanket right back at the beginning, when I figured I’d be spending a considerable amount of time on the couch. It’s plain blue on one side and has dolphins on the other. It reminds me that one of the most beautiful mammals on the planet has a completely smooth chest. It’s also warmer and more comforting than the cotton hospital blankets. I’ve been happy with the hospital pillows but a lot of people bring one from home.

11. Things to pass the time

For me that’s my computer, a few good books and some drawing equipment. Some people have craft they’re working on. Whatever you usually enjoy doing when you’re sitting down, provided it doesn’t involve too much arm movement, will be great while you’re recovering.

That’s my main list. You might also want to pack ear plugs, particularly if you’re going to have to share a room, but try them out at home first. I find that being able to hear my own pulse is not relaxing which is why I’ve opted for the iPod.

Give some thought to what will make you feel comfortable and comforted. You might like to have a family photo or two, some favourite perfume, a favourite snack food or something special to wash your hair. I’ve stored some Babushka Kefir Drinking Yoghurt in the fridge because they’ve had me on intravenous antibiotics and I’m looking after my gut health. I’ve also got a bag of water cress from our garden. They have plenty of salad options here but there’s something special about food from home.

I’m likely to be here about a week because sending me home with drains is problematic. I live over an hour from this hospital and the local base hospital at Gosford is a regional facility dealing with a city population. They have one part time breast care nurse covering a population of over 320,000 people and about 25 new breast cancer cases each week. I wonder how she copes.

Two of the four drains attached to my body have been removed. The other two will stay attached until there’s less than 30mls in them over a 24 hour period. They’re not as disturbing as I thought they would be. There are volunteers that make beautiful bags for them so I don’t need to look at them all day. I’m also very touched by the generosity of people that don’t know me and will never meet me. Same goes for the pillows from Zonta (a service club for professional women) that are designed to be tucked under my arms every night. Some people are so kind.

The staff at the Mater are exceptional. This place is a great example of what happens when you start with clear values and build everything from there. There is love in the walls. By a delightful coincidence I’ve had a series of naturally small breasted nurses. They are beautiful women. They would not be more beautiful with large breasts.

I have some discomfort but it’s well managed with pain relief. There’s a tightness around my chest which they tell me is nerve pain. As an added bonus, the gabapentin they’re giving me seems to have wiped out the peripheral neuropathy I’ve had since chemotherapy. No more pins and needles and aching hands. I can taste food again. This is not a small thing. The drain on my right side is annoying, and the one on the left doesn’t bother me at all. I’ve had some shoulder pain which I suspect is partly due to being in an odd position in surgery and partly due to my body adjusting to the absence of my breasts. Around about day three when the general anaesthetic ‘high’ wore off my pain peaked but on a scale of one to ten it hasn’t been above four.

I’m feeling great. Not a forced cheerfulness to impress the staff or an artificial happiness designed to push down negative feelings. I am honestly feeling great. I’ve looked at my chest and been pleasantly surprised. My husband has looked at it, declared me ‘svelte’ and told me I’ll look beautiful when it heals. I haven’t had ‘three day blues’ and I don’t think I’m going to have a bout of feeling sad, but if I do I will just allow that to happen.

Have you ever noticed that when someone is laughing, nobody ever tries to stop them, to calm them down or to tell them how they should be feeling. It should be that way with sadness I think. Life is always going to involve a full palette of emotions and a rich life will paint with all of those colours.

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