Sunday, 27 July 2014

Diary of a Mastectomy

On 23 July I had a unilateral mastectomy of my left breast with Auxiliary Lymph Node Removal.  It was 23 days after my diagnosis with Cancer.  This post is based on notes I kept each day I was in my Belgian hospital.    

Day Minus One
I was instructed to be at hospital by 2pm sharp on the day before my operation to meet the anaesthetist, but of course I've been waiting nearly two hours before he strolls in and then our chat takes barely two minutes.  Weight, height, any questions and we're done.  So now I'm in my hospital room, in my street clothes, a full day in advance and feeling rather daft as I pretend to be a proper patient.  Luckily, St Luc's have put me in a two-bed room with a Belgian lady who is here for a second breast cancer op, to remove more from her breast after a lumpectomy in January.  She's done chemo and knows the cancer drill.  We sit at the table and eat dinner together, discussing baldness.  Wigs make her head permanently wet with sweat, she tells me, but on the other hand it's good to have a warm turban to wear at night when a bald head gets cold.  She shows me the products she uses; cream to stop her bald head itching and varnishes to use on her chemo-cracked nails.  It's like a Girls Night In with a Cancer Theme and no wine.

Before we go to bed we are told to shower with liquid red soap that smells of hospitals and turns the skin a charming shade of yellow.  Tonight we are allowed to wash it off with our own soap but tomorrow morning we must shower again with just the disinfecting soap.  The nurse brings me a shaver as I didn't bring my own and I need a freshly shaved armpit.  I try not to dwell on the fact that they are preparing me for the knife and concentrate on getting to sleep while hospital trolleys trundle down the corridor and machines beep.

Day Zero
This morning I have no time to brood, or get hungry.  My operation time has been brought forward and suddenly I am in a rush to shower and get into the hospital gown.  I have to leave my specs behind so everything is a blur as they wheel me on my bed down to the bowels of the hospital and I feel like an extra in a hospital drama.  Indistinct people talk rapidly at me French from behind face masks and I haven't got a clue what is going on but it all fades blessedly soon.  I'm under.

I have a memory of coming round from an operation as a young teenager and it was like trying to escape from water when drowning.  But this time I am gently washed onto the shores of consciousness - I guess the drugs have got better in the last thirty years.  As if I am in a dream, my husband comes in and kisses me.  He tells me I look beautiful.

When I wake up properly, my husband is gone.  I lie very still, as if I am glued to the bed, and take stock.  I have bandages wrapped so tightly around my chest that it is hard to breath.  A drip is attached to my right hand so the arm has limited use.  There's no way I'm even thinking about moving my left arm.  Two tubes emerge somehow from my left side and drain into plastic bottles on the floor.  I'd heard about these drains and expected little pod-type things,  but these bottles are as big as a pint of milk.  All in all, I cannot imagine ever being able to detach any part of my body from the bed.  On the plus side though, the pain is not too bad.

My roommate snores like an aircraft taking off all afternoon.  Later I learn that her throat is painful after the tube that was inserted during surgery.  A tube? I ask.  She smiles at my innocence and tells me that I had one too.  I am surprised.  I must have a big throat as I was blissfully unaware.

I leave it as long as I dare but in the end there is no denying it any longer - I am desperate to pee.  The nurse brings a shiny, metal bedpan and helps me wriggle onto it.  Nothing happens.  My bladder aches and yet my body simply refuses to believe that it is ok to go while lying in bed with my bum higher than my head, my knickers round my ankles and my roommate on the other side of a thin curtain.  This is not how I had planned to spend my summer vacation.

Day One
It is a miserably long and sleepless night and my back aches horribly from lying immobile so long.  But the morning brings great progress.

FIRST: I make it to the toilet!  When the nurse suggests moving I think she is mad but I will try anything to avoid using the bed pan again.  She hauls me up and I do a slow shuffle, pushing the drip while she follows behind with my drain bottles.  But I make it!
SECOND: they take the catheter out.  So now I can use my right hand again.  I can sit up in bed and they have moved my bedside table to my right hand side so that I can reach for things myself (it is impossible to reach over to my left).
THIRD: they take the ultra-tight compress bandages off and I can breathe again.  The nurse who changes my dressing asks if I am ready to see the scar.  Not yet, I say.

In the afternoon, I am sitting up in bed and flicking through magazines when my temporary boob arrives.  It comes with a lovely lady from Vivre Comme Avant, a charity staffed by volunteers who have survived breast cancer and visit cancer patients in hospital.  She is full of information and leaflets.  She explains to me that I will need to be careful with my left arm now that I have had around 10 lymph nodes removed.  I must take extra precautions to compensate: disinfect any cuts or burns on my left arm promptly and don't ever allow injections or blood pressure monitoring on that arm.  She gives me addresses for clinics which will provide my new prosthesis in due course, though it will be six weeks or so before I can wear it.  For now, she gives me a little pouch, stuffed with padding, to use in my bra.  It's about as sophisticated as stuffing socks in your bra.  But I thank her - it is better than nothing at all.

Day Two
With the aid of a sleeping tablet, I get a bit more sleep and continue to make rapid progress.  I am now moving around though it still feels like a great effort.  The nurse offers to bring me a bag to carry my bottles in and I expect some kind of medical accessory so I am surprised when she comes back with a River Woods paper shopping bag.  Still, it does the job.  

There is occasional discomfort but no real pain across my breast.  It is painful under my armpit though, and I cannot really move my arm.  I'm hoping that is mainly the drains though it is also swollen and sore.  The oddest thing is the numbness.  They tell me that this is because they cut nerve ends and the feeling will come back, though it can take up to a year.  When the nurse dabs disinfectant on my chest, it has the same sensation as the inside of the mouth after being to the dentist for a procedure.  It is also quite weird when something brushes down the back of my arm: not numb but oddly prickly, like the skin is raw.

Today I am ready to see the scar.  The nurse covers it with a piece of paper and hands me a mirror, so that at first I see the strange lack of cleavage.  Then she moves it away and I see a diagonal scar, slicing up across what used to be my breast into my armpit.  It is quite neat.  I have already seen photos on the internet so I am prepared for the strangeness of no nipple in all that flatness.  In fact, it is much less ugly than some of the images I have seen.   I do not  cry.

Looking back, I went into this operation very innocently naive.  It all happened too fast to ask any questions and I didn't really know what they were going to do to me.  I now learn that I have had an Auxiliary Lymph Node Removal.  This is when they just take out 10-15 lymph nodes and usually takes place when they have reason to think there is cancer there.  It comes with potential complications as you lose the protection of those lymph nodes and your arm is more vulnerable to swelling and infection.  The alternative is to do a Sentinel Node Removal.  In this case, they inject a radioactive dye beforehand so that they can locate the first nodes easily.  They remove between one and three and may test them straight away, only removing more if necessary.  It is too late now to ask my surgeon now why I needed the more drastic option.   I just have to trust her.  

One drain has been removed!  It came out painlessly, just an odd pulling sensation and then a whoosh!  Already I can move much more easily.

The nurse brings me some sample prosthesis's.  They are surprisingly soft but also heavy, so I am glad I will only need a small one.  I stick my finger into it and the dent slowly pops back out.  You can buy special bras with a pocket for your fake boob or get one that sticks to you.  I am sceptical.  Surely the stickiness can't last?   The nurse assures me that you simply wash it at the end of the day, put the protective covering on overnight and the next morning it will stick right back on.  Hmmm.  Might be worth considering though.  Yesterday I heard the story of a lady who went swimming with her slip-in prosthesis and it slipped out.  She found two boys playing with it in the pool like a Frisbee.

The kinesitherapist comes to see me.  She is young and energetic and gives me lots of arm exercises.  For the first week they are all below shoulder height, after that I can move as much as I like so long as I don't lift more than 7kg.  Exercise, she warns me, or you will stiffen up when you get older. She shows me what she expects me to be able to do after six weeks but just now, I can't lift my arm without pain in my armpit and I can't imagine being able to move that easily ever again.  And exercising the arm alone is not enough, she impresses on me: apparently 2.5 hours of cardiovascular exercise a week reduces recurrence of cancer by 25%.  And there's one more reason why it will be important to exercise more in future - hormone therapy makes you fat.  Great.  So now I get to look forward to having one boob, no hair and rolls of fat?

I'm feeling weepy this afternoon.  I think the elation of getting through this operation is wearing off and I am remembering that there is still a long road ahead.  Cancer never really leaves.  Its shadow stays behind, the cold whisper in the night that it can always come back.  The fear that it is already quietly nibbling away at some corner of your body.  

Also, I well up every time I think about showing my husband my scar.  I can't explain why, because he's been amazing and I know he will love me however bad it looks.  Somehow I can't help feeling ashamed and it makes me cry.

Day Three
It's going home day and I feel stronger again.  The remaining drain comes out and now I can do the below shoulder exercises with just a bit of discomfort.  My armpit is still very swollen but I can move around and use my arm fairly comfortably.  It's so good to move without carrying a bag of bottles with me!  I wash my hair myself under the tap in the bathroom sink, put in my contact lenses and feel more myself again.  

When the nurse briskly shows my husband what he needs to do with the bandages over the next few days, he doesn't flinch.  I told him last night how I felt and he was so loving and reassuring that I don't shed a tear when my scar is finally revealed.  The bandages are a simple affair: a sticky mesh to help the scar heal nicely, covered by simple pads and held in place by a kind of string vest.  With a bandage wrapped all the way round my chest and a baggy shirt worn over it all, it isn't obvious that I only have one breast underneath. I'm ready to leave!

As I put my things back in the suitcase, I realise that my packing for hospital was somewhat arbitrary.  So here are some Top Tips learnt from my mistakes:

  • ·         Don't forget some nice smelling shower gel which will help clear the smell of disinfecting soap, and a washcloth and soft towels.
  • ·         Bring your razor so you can make sure you are freshly shaved pre-op.
  • ·         Bring slip-on slippers.  I brought fluffy ones but ended up using my flip flops because they were much easier to shove my feet into when I shuffled to the loo.
  • ·         My eye mask was invaluable, I wouldn't have got any sleep without it.  It was also great to listen to soothing music on my Smartphone through earphones at night when the hospital buzz got too much.
  • ·         If the food is anything like my hospital (and I guess institutional food is always grim) then it's a good idea to bring snacks and drinks.  I brought chocolates with me but in the end it was fruit I really craved - I must have been ill! A friend actually brought in a complete meal for me and it was one of the most enjoyable dinners I've ever had.
  • ·         A notebook and pen are useful for keeping track of the information that is thrown at you when you might still feel quite groggy.
  • ·         I went shopping and bought button-up pyjamas for hospital and a button-up baggy shirt to wear home and they were certainly much easier to put on than T shirts.  I expect that button-up shirts will be best for the next few days but I don't think I will need them for long.
  • ·         The lady from Vivre Comme Avant who gave me the pouch-boob talked about using it in my bra to go home from hospital.  In fact,  I am so strapped up that it is impossible to put on a bra.  But I guess larger breasted ladies might need the support and, if so, it needs to be soft with no under-wire.

So here I go, leaving my hospital room for the first time in days. 
If I walk tall and wear the shirt baggy, no-one will ever know that I'm a One-Boobed Babe.

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