Wednesday, 30 October 2013

Going for the chop

I wasn’t particularly nervous about the surgery.  I’ve had numerous anaesthetics before and come through ok.  In fact I quite like an anaesthetic.  Is that weird?  I like the feeling you get just before the lights go out, that feeling of complete abandonment.
Plus I was just excited about getting on with the treatment.  I’d had a month’s build up to all this and the anticipation was messing with my head.  I just wanted to see what it had in store for me.

So at 8.00am on 7 August, I found myself sitting in a hospital gown, Will by my side, waiting to be taken through to theatre.   Various people walked in and out of the room asking me questions, getting me to sign bits of paper, then leaving again.  The anaesthetist burst in, full of life.  How was she going to be able to sit still for 8 hours?  She was so hyper!   As well as being in charge of keeping me alive, she was apparently to be the DJ for the duration of my surgery too.  She asked if I had any requests for recovery music.  My mind was blank.  ‘A bit of chillout?’ I replied.  How naff.  Oh well, I’m sure I wasn’t really going to be aware of much at that point.  
The plastic surgeon also appeared briefly and drew all over my chest with a black marker pen.  I don’t think it was just random scrawlings, I guess it would mean something to him when he was later standing over me, scalpel in hand?

All of a sudden it was time to go and a nurse whisked me away to do the walk of doom along grim looking corridors to the prep room where I was asked to hop onto the trolley and the anaesthetist cum DJ starting plugging me in.  We chatted about Australia, she’d lived there for a while, and suddenly I was feeling woozy and then I was gone, disappointingly quickly I must say. 

The next thing I knew someone was telling me it was 4pm and that the surgery was done.  I had a rotten recovery.  I felt like I couldn’t breathe properly which was terrifying.  The recovery nurses told me that my SATS were fine but that didn’t really help me to calm down.  I found out later that this is quite common with the surgery I had because they’ve had to break a rib to get to the necessary blood vessels which can make it feel like someone is sitting on your chest. I was given an adrenalin nebuliser which seemed to do the trick. But once I’d recovered from that little episode I started to vomit.  I was feeling hugely sorry for myself by this stage and remember just sobbing, very loudly.  Not one of my finer moments.

I was eventually taken to the ward at about 9pm after delays for one reason or another, to find Will waiting for me.   How lovely.  By this time I was high on drugs and feeling much happier. The first night was long.  I had to be checked every hour for 24 hours to make sure the blood supply to my new boob was still flowing.  Except it seemed I no longer had a boob, it was now a flap?  Every time the nurse came in, she would say, ‘just need to check your flap’.  A flap?  Surely they could think of a more flattering name for it? 
I’d heard stories of blood supplies failing and women having to be whisked straight back into surgery.  The idea of this was just too much to bear.  So it was nerve wracking every time the nurse came to put the Doppler on my ‘flap’.  Some would find the right spot straight away and you could hear the comforting whoosh sound of a healthy blood vessel.  Others were less practiced and when they couldn’t find it straight away, I would have a mild panic. 

I was in hospital for 6 days in all.  Recovery was pretty tough I must say and by day two I was wondering whether I’d made the right choice of surgery.  I wasn’t allowed to sit up because of the large wound on my bum and found this incredibly frustrating.  Thirty degrees was the limit of propping up allowed.  At first I was told it was just for 72 hours, and then suddenly during ward rounds, the plastic surgeon said they didn’t want me sitting for a week!  I was starting to get pretty depressed by this stage.  The days were long and the nights even longer.  I was beginning to have dark thoughts about what it would be like to be paralysed.  I hope that doesn’t sound flippant, as I was obviously far from paralysed.  But having my movement so restricted even for a week, felt interminable to me.  My diagnosis and the implications suddenly started to feel very real.  Blasé had left the building. 
What made things even worse was the indigestion, nausea and wind I suffered from the various medications and from having to eat without sitting up.  I was burping and farting like a trooper.  Apologies to my ward mates!
I was allowed to stand up after a few days, but had to get into a standing position without bending at the hip.  Not easy, but I soon became well practiced at it.  Thank goodness I had a bit of core fitness.  Standing made me dizzy though so I could only manage it for a minute or two.  I started to hate the sight of that bed. 

My lovely family did a grand job of looking after me, bringing me presents and Marks and Spencers dinners so that I didn’t have to force down the rank hospital food which, by the way, does not seem to have moved on since the dark ages.  I find this hard to get my head around when so much study has gone into the importance of nutrition.

My nine year old niece Faye really impressed me with the way she handled the whole hospital situation and seeing me not looking so great, with numerous drains and catheters hanging off me.  She just wanted to help, and help she did.  She was a great tonic.  Thanks beautiful girl x

Will would do the graveyard shift from 6-8pm when I was feeling too pooped to do anything much but for me, at least, it was a nice peaceful time of day.  I’m sure Will found it very dull but he was what I needed at the end of the day.
I did have a pretty spectacular view from my bedside, overlooking the Thames.  I only really began to appreciate this after about day five.  I didn’t get any great photos of it but will include one anyway.

And as for the ‘flap’, I finally had a proper look at it on the day I left hospital when one of the nurses took me into the bathroom to look at it in the mirror.  I’d had many compliments about it from all the nurses and doctors who’d checked it out over the week.  To me it felt pretty alien and not really a part of me.  I had to agree the shape was good, but having bum skin in place of a nipple I have to say detracts a little from the overall look!  In fact on my first night after surgery, one of the nurses kindly had a giggle when first seeing my 'flap' saying that I must have a very white bum bum!  She happily pointed this out to anyone who would listen.  Thanks lady.  Thankfully, further plastic surgery, nipple creation and tatooing will happen once all the rest of my treatment is over. 
My recovery was rapid once I left the hospital and I was walking about and sitting up after a couple of weeks.  I was no longer regretting my choice of going for the full monty .  I'm happy with the results and how it all feels and the difficult times were short-lived, in hindsight.  I've even been able to get back on my pushbike again.  Happy days.

Sunday, 27 October 2013

Choices, choices

The first stage of my treatment was to be surgery to get rid of the cancer.  To begin with we talked about lumpectomy as a surgical option.  This sat ok with me and Will.  My lump was not huge, although 35mm sounded pretty flippin large to me seeing as I’d only just discovered it!  But as the doctor very tactfully said, my boobs aren’t that big (34B) and so removing a lump of that size may not give an aesthetically pleasing result.  We were told to go away and think about it. 

We did think about it, talked about it and googled photos of lumpectomy results.  Will carried photos of misshapen boobs on his phone to show to the doctors, not the stuff of playboy magazines that’s for sure!  Although the images we saw did not look great, we both thought that conservative was the way to go.   

The way we saw it, getting rid of the cancer was the most important thing.  What my boob would look like didn't seem that important at this stage.  The doctor said that some women would do anything to avoid a mastectomy whereas others might insist on a double mastectomy just to get rid of the cancer and ensure it didn't ever come back. It was really a personal choice.  I didn't have any strong feelings either way so it seemed sensible to us to go the least invasive route and like the doctor said, I could always change my mind later and go for a mastectomy if I wasn’t happy.
A week later we were back with the lovely Mr Hamed and the breast cancer nurse to talk things through again.  He had another feel of the lump (my right boob was certainly becoming public property and not my own anymore!) and a measure of the lump with some pincery things and said 'How would you feel if I told you I think you should have a mastectomy?'  What I really wanted was for someone just to tell me what to do.  I didn’t want to have to make these decisions.  How could I know how I would feel, what it would look like, what it would feel like?  I told him that if that's what he thought was best, then I would go for it. 

So suddenly, my whole boob was going to be chopped off.  Ok.  That’s fine I guess.  Whatever needs to be done.  Its not like it’s a leg or an arm or something. 
But that wasn't the decisions over.  Far from it.  What sort of reconstruction would I like?  Did I even want a reconstruction?  Should I have mastectomy and delay the reconstruction until the rest of my treatment was over (chemo and radiotherapy).

Oh man, this was getting complicated.  The surgeon patiently went through all the different options with us.  He explained things clearly but it was still difficult to take it all in.  If I went the reconstruction route, he said that doing it at the same time as the mastectomy was preferable as it gave a better result.  I could opt for an implant (silicone) or tissue (fat harvested from elsewhere on my body).

Using an implant is a far less complicated surgery but is not strongly advised if radiotherapy is required (in my case it was) as it can react to the radiation and become hard, painful or deformed.  Tissue reconstruction gives a more natural result which ages with the body unlike an implant.  It also does not react so badly to radiotherapy.  But the big question was, did I have enough excess fat on my body to provide an adequate new boob?  The doctor was dubious. 

I was referred to a plastic surgeon who I was told would have a good old grope of my fat bits and decide if there was anything usable.  Bloody hell, what if I went home and ate all the pies, would that help?  Needless to say I had offers coming out of my ears of donor fat from friends and family.  Sadly, it had to be my fat.  I was cursing my ‘skinny genes’ for once in my life.

We met with the plastic surgeon a week later, actually a whole team of plastic surgeons and nurses.  They all stood around as I was asked to remove my gown and stand naked so that they could appraise my blubber.  I was prodded and poked like a piece of meat.  My right bum cheek was deemed to have enough quality fat to be used as a donor.  Hurrah!  This was good news, I think. 

But as Will and I  left the hospital, we realised we had done a complete 180 on this.  Suddenly I was going from a conservative lumpectomy to a full on tissue reconstruction involving 6-8 hours surgery, including micro-surgery to give the donor tissue a blood supply.  I would have two or possibly three surgical wounds to contend with (the lymph nodes under my right armpit also needed removing due to the cancer having spread to at least one node).  For some having another large scar (in my case, along the top of my bum) would be unthinkable but I wasn't really bothered about that side of things.  Had we made our decision?
We went away on holiday and were given that time to think it over further.  I think I already knew what I wanted to do, but it was nice not to feel rushed.  I don’t really know how I came to the decision in the end.  The tissue reconstruction felt like the right option, although none of it really felt right, obviously.  My bum was suddenly going to become my boob.  If that’s not topsy turvy and a complete spin out, then I don’t know what is!

You might wonder if you can really enjoy a holiday when you’ve just been given a cancer diagnosis.  Well I can tell you, I did enjoy it, mostly.  It was a great distraction.  I had to wait another month for my surgery date anyway so better to be on holiday than at home trying to be normal.  Will and I rode our motorbikes down through France, saw family and friends and had a little pootle through the Alps.  It was just the right mix of activity and relaxed-ness.  The calm before the storm. 

Beautiful vistas.....

and plenty of wine!

The words you never want to hear

The week passed slowly and I’m still not sure how I got through it.  The only time I managed to feel like I wasn’t about to fall apart was when I was on my bike pedalling, or on my motorbike.  Will and I went to an overland bike meet down in Hampshire with friends for a weekend of camping, riding, drinking and hog roast.  It was a great distraction. 
Finally, my results appointment came around and Will and I went together.  I can’t remember what we talked about as we waited.  Not much really.  But I felt surprisingly calm.  I was about to find out whether my life was about to change, and what would be would be. 
Will said he knew it was going to be bad news when a nurse came through to collect us from the waiting room and then stayed in the room with us and the doctor.  None of these thoughts ran through my mind.  My head was empty.  The doctor had a very gentle and sympathetic persona.  He was good at breaking the bad news.  It was breast cancer.  I cried.  There were no tissues!  Surely I wasn’t the first person to cry at such news??

It was July 2nd, exactly two years to the day when we had arrived back in England after twelve years in Australia (not forgetting a five month overland trip back).  A date that now had more significance than ever before.
The good news to follow the bad news was that we had caught the cancer early.  This was, to put it mildly, a massive relief.  Mr Hamed, the doctor, said that he fully expected me to be sitting here in a years time thinking, bloody hell that was a rough ride, but I’m through it, over it, cancer free.  It was at this point that I started to breathe again. 

And then, suddenly, we were talking of surgery, chemotherapy, radiotherapy.  Thank god Will was there with me to ask questions (what he does best) and listen to the answers!  We were bombarded with information and decisions that needed to be made about mastectomy versus lumpectomy, reconstruction options, hormone therapy.  My theory is that they do all this so you don’t have time to feel sorry for yourself.  It certainly worked for me.  Will and I left the hospital, armed with a folder full of information, feeling strangely at peace with things.  I felt sooooo much better walking out than I had walking in, yet I’d been given terrible news.  How does that work?  But I at least knew what I was dealing with now.  It felt like ‘they’ had it all under control, and I hadn’t been told I was going to die so that’s always a bonus!

I didn’t feel ready to tell anyone until almost a week later.  I needed time to digest this and work out how I felt about it, before I had to deal with other’s reactions to it.  I was dreading telling family, hating to be the bearer of bad news.  How was I going to break it to them? 
Will and I had been avoiding using the ‘C’ word since getting the diagnosis, preferring instead to use the term ‘BLT’, Breast Lump Therapy.   The word cancer is just so scary and it didn’t seem right for what I had.  After all, I was hopefully going to be cured.  Cancer is a disease that people die from isn’t it?  I think to be honest, we were a bit blasé in the beginning but maybe that was just our way of dealing with it.  We’d been dropped this bombshell but I felt perfectly fit and healthy and we were given the feeling that there was no immediate urgency to get on with treatment.  In fact we were told to go ahead and take the holiday we had planned, motorbiking through France, and that they’d book me in for surgery when we got back.  None of this sounded terrible so far. 
I eventually told family and close friends via email.  It just seemed the best way to get all the information across and give people time to take it in before having to speak about it.  I’m a serial blubber and just knew that the flood gates would open before I’d had a chance to say all I needed to say, so this just seemed like the best option.  There’s no good way to give bad news.  But I felt huge relief once people knew.  Another big hurdle crossed of the list.

An inkling of something bad

I’ve always liked the idea of keeping a blog.  I’ve enjoyed reading other’s blogs in the past, but did I have anything of interest to write about?  My life is not too out of the ordinary, but I’d like to think I have a story to tell.  Doesn’t everyone?

So I guess I was looking for a catalyst.  Something to happen, or for me to make happen, that would make me want to write and share with the rest of the world.  Well I guess riding a motorbike from Australia to England was one such catalyst, but my husband is a much more prolific writer than me (and talker, but that’s another story), and as he did the journey with me, he ended up writing the blog.

So this blog is not going to be about a motorcycle journey.  Although I did do it, and it was amazing, and you can read about that here if you really want (  But don’t get distracted and not come back here! :-)

Now my story is by no means unique.  In fact, it is scary how many people are currently in the same boat as me, let alone all the ones who have gone before me, and will be following the same path long after I, hopefully have finished this journey.

Breast cancer.  Two little words that every woman dreads hearing.  But it’s never going to happen to me.  It doesn’t run in my family.  I’m young-ish, fit-ish, immune?  Sadly, no one is immune from this wretched disease and it HAS happened to me.  Crazy but true.

When I first discovered the fateful lump as I was showering one day, I was none too concerned.  I’d had a scare once before when I was living in Australia and the lump turned out to be a cyst.  Surely this would be the same?  It didn’t feel quite the same but I convinced myself that it was nothing to worry about, whilst dutifully making a doctor’s appointment.  The next available was in 10 days.  I briefly considered saying that I was worried and could they not get me something sooner and then my rational head took over again and I breezily replied “yes of course, that’s fine” whilst silently panicking a little inside. 
Nevertheless, the next ten days passed with me barely thinking about it and by the time I got in to see the doctor, I’d once again decided that nothing was wrong and that I was wasting her time.  She examined me and I got no inkling from her that there was anything amiss.  She didn’t say much except that every lump needed to be examined further and that she would make me an appointment at the hospital.  I would be channelled into the emergency cancer stream but no need to worry, that’s just the way the system worked.  Cool.

I left the doctors relieved.  I was doing something about it, and there was nothing wrong. 

Sure enough, my appointment came through quickly (within the week) and I found myself sitting in the breast cancer unit at the local hospital, reading ‘toot’ mags and avoiding the breast cancer leaflets left strategically around the waiting room.  I really wasn’t worried.

Not worried that is, until the doctor had a quick grope of my boob, massaged under my armpit and went straight to his desk to start writing me a referral for a mammogram, ultrasound and biopsy.  “This doesn’t feel like a cyst”.  Oh shit.

I was to go straight across to the radiography suite to have this raft of tests done.  My head was empty as I walked through the maze of hospital corridors to meet my fate.  I handed over my referral to a lady at reception who quickly handed it back to me saying that they weren’t taking any more patients today, too busy, it was shut.  Come back on Tues at 12pm.  I couldn’t speak.  It was now Thursday afternoon.  That was a whole 5 days away!  I knew if I tried to protest I would become a blubbing wreck.  I took the paper back in disbelief, didn’t speak a word and walked away.  How was I going to get through the next five days of not knowing?

I went home to break the news to Will, and that is when I did break down. He comforted me.  We would deal with whatever happened, but surely it was nothing to worry about.   I busied myself for the rest of the day by going for a bicycle ride.  If I was moving I was ok.  Just keep pedalling and everything will be ok.  I rode for miles.  It helped.

Somehow I got through the next five days and found myself back at the radiography suite.  I had the mammogram, ouch, very painful, very undignified.  Then came the biopsy of the lump.  The doctor was very kind, sympathetic, but she did shoot a f**kin great needle into my boob which almost made me hit the roof with the shock of it.  She stuck another needle into my armpit and probed around for what seemed like hours, apologising all the while, and saying I was being very brave.  Lady, I’m not being brave, I’m lying here with the worst thoughts going through my head but I’m desperately  trying to keep smiling because if I don’t I’ll cry and that would just be the end.

“So, how long until I get the results?” I asked, hoping that she might be able to tell me there and then.  “Oh, probably a week”, she replied.

A WEEK!!!!!!!!!  Inside I was starting to lose it.  ‘Oh, ok’ I said, I imagine, in a very small voice.  I’m not sure what I said because my head was doing some kind of crazy flip flop from ‘its all going to be ok, to, oh my god, I’m going to die, very soon’.

That week was one of the most difficult I’ve yet faced.  How do you deal with the unknown?  I didn’t want to start thinking the worst or, god forbid, start googling breast cancer.  What else was I going to do though?  Forget about it?  Not a chance.