Taking stock of the damage post surgery #2

So when I woke up from surgery #2, it seemed like a good time to take stock of what had happened to me over the past week, physically. Let me relay it to you.

So in the original surgery, they took the bone, some muscle and the blood supply out of my shoulder/back – the outside of my scapula. That had given me a lot of pain. I hadn’t seen the extent of it yet at this stage, but when I did see it, it’s actually smaller than I was expecting. It also stretches up into my armpit. Geez, what’s with these surgeons doing such good job that I don’t get the huge battle wound I wanted?!

To make up for it though, after the second surgery I had a decent scar forming on my lower left leg.

I also had an impressive throat slit, from just near my ear to pretty much the centre of my neck. It’s quite hidden by my chin though (but that might be somewhat due to the swelling). My surgeon considers the aesthetics important, and makes an effort to fit scars in with natural lines. So this one would sit where a natural neck line would, if I had any. Of course I also have the scar from my arch nemesis, the tracheostomy.

I was incredibly happy to find that they had managed to do the surgery without cutting my face or my nostril at all. Apart from the massive amounts of swelling which should eventually go down, I should have no obvious outward differences.

These guys are seriously amazing.

Of course this isn’t mentioning what was going on in my mouth and nose, but we’ll get to that in due course.

Friday turns to Saturday and back into surgery we went

I’d been having regular checks of the flap (the new roof of my mouth made from shoulder) – they would look at it, feel it for temperature, then use a ‘Doppler’ machine on it, which would amplify the sound of its pulse.

Somewhere over the course of Thursday night the Doppler machine got misplaced. When it was found again on Friday morning, it was no longer registering a pulse and the Doctors were called in. They looked at it, felt it, and decided that it looked healthy and should be fine. So the Doppler machine was abandoned and I was transferred out of ICU (which they had bee threatening for a couple of days) and into the ward.

I didn’t sleep much the night – there was a lady wailing in the bay across from me. I had my flap checked either before I went to sleep or at 2am, I can’t quite remember. All good.

When they woke me up at 6am to check it, something felt different. There were these bits at the back which felt really soft and squishy. The nurse looked a little alarmed but said nothing.

It was at handover that he said something (8am) and my Doctors were once again called in.

The verdict was that the flap was dying and we had to save it. This was a Saturday. My main surgeon was on holiday, but the rest of my team hustled from whatever they had planned on that Saturday and before long I was meeting them in the anaesthetic room in their fetching maroon scrubs. Thank you all for giving up your Saturdays for me. I suppose it’s always a risk when you’re doing such important work. Gosh, what if you were hungover! Maybe these people don’t get hungover.

I hadn’t enjoyed anaesthetic the first time at all, but I had at least had a really nice experience going in to it. That wasn’t the case this time. For a start, I think we were all in a hurry to get the surgery underway. Unfortunately my cannula had come out of my hand as I washed myself before surgery, which left the anaesthetists needing to find a new vein to use. My veins were being as difficult and as painful as usual, and they just kept poking and poking. As was the case very often while I had my tracheostomy, I was also having coughing fits, which they interpreted as me panicking, and they were trying to tell me to calm down, which wasn’t helpful (this sort of thing happened a lot – coughs don’t sound like coughs with a trachy in, and I couldn’t talk to anyone to explain).

So they sedated me, which I hate. So I was coughing, feeling drugged and dopey, and in pain from their needling attempts. Never had I been stressed or anxious though so I’m not sure what this was meant to achieve. Then someone decided to try and numb my hand and without asking or warning me, they sprayed this ridiculously cold stuff on my hand which felt like it was burning me. I was screaming in pain, though lucky for them I wasn’t actually making any noise. Amidst the pain in my hand, someone must have shoved a needle in and anaesthetised me because the last thing I remember was feeling drugged and being in excruciating pain. I guess the ‘numbing’ did the trick, if only to at act as a type of pain diversion.

My dad describes my first surgery as the second longest day of his life, and the second surgery as the longest. They had said probably a 3-5 hour surgery (time depending on what they found to be the problem). It was midday when I went in. My parents had been staying with a friend in Surrey, so they decided to hang about in the city during the day to wait for the surgery to be over, and to be with me when I woke up. 4 hours passed, 5, 6, 7… they were sitting in the pub trying to have some dinner and had heard nothing… At about 10pm they got told the surgery was over and I was out.

They found out that a clot had formed in the blood supply taken from my shoulder and put in my neck, and they had to go into my leg to get a new one and bypass the original one in my neck, hopefully getting a blood supply to the bone and tissue before it was too late. This sort of fail usually happens within 48 hours, not 5 days. They didn’t know why it had gone that way with me, but they hadn’t seen it happen so late before.

Waking up from this surgery, I was a lot more alert. I don’t know if that was because it was a bit of a shorter surgery or what. But I came to, and heard people talking, and with my most recent memory of having been in so much pain and sedated, I made sure I lay still and pretended I wasn’t awake. I didn’t want the torture people to know I had woken up because otherwise they might start torturing me again.

Then I heard my mum’s voice and called out to her. I figured if I could only get to her then it would be ok. She would save me from the bad people. So I shouted and shouted but nothing came out – what else had these people done to me?! I don’t know how but suddenly mum was next to the bed. My eyes were glued together, as was standard most mornings for the time I was in hospital, and apparently post surgery too. I managed to pry one open and I saw her and I reached out to hold her hand. It would be ok now. I pleaded with her to stay with me, but of course it was quite late and they had to make sure they didn’t miss the last train back to Surrey. Aah yes. That brought me back to reality a bit more, and I understood that I was in hospital and they had a train to catch. So I told them to make sure they left themselves plenty of time. I think they left soon after that.

In my hindsight mind as I write this now, I went through this all with conversation, but of course I didn’t. When I called out ‘mum’ and suddenly she was there, my mind fills in that I said her name so she came by me, but of course it doesn’t work in that way. I do remember trying to communicate with mum and dad using a laminated sheet of paper which was like computer keyboard, pointing to the letters I wanted to use.

I had quite a sleepless night. I remember lying in this uncomfortable bed with my feet touching the end of it, looking out into a bright light. I remember getting angry at my nurse because I didn’t think she was being very helpful. This time around I was in my own room, and had a nurse posted to stay with me all through the night.

A few of the amazing nurses on my first trip to ICU

The first thing was to work out a way to communicate with people. How else would I make friends?

The first notebook Dad got for me said on the front ‘Be your own kind of beautiful’. Seemed fitting, since I would definitely be challenging the normal ideas of ‘beautiful’ for some time (someone did just tell me I was totally rocking the look hehe – the ol swollen face look).

The scribbles start to make sense after a few pages, as the initial anaesthesia wore off. I was never far from my felt-tip pens or notebook. In fact everything was covered in pen – my arms, my sheets, my gown, at one point I even managed to draw on my Physio.

After the first couple of days of confusion, things got a bit clearer. I was helped through by some amazing people as I was recovering in the ICU.

Anna was the Portuguese nurse from Porto. I promised her that once I was better I would prioritise visiting her home town. She said to drink their special ‘Porto wine’, I of course agreed. I realised later we were talking about Port. Yes please, I will drink it all.

Then Maria took over. She was lovely. She had a brilliant knack of explaining things to me really well as she was doing them, putting me at ease and making sure I was informed about everything that was going on. This appeals to me so much. Looking through my conversation book from Maria’s shift, it appears I finally managed to work out the reason as to why my neck was sore – something that had been plaguing me – of course, they made quite a big cut in my neck to connect the blood supply, I’d known his all along but for some reason this was when my re-realisaion epiphany happened. I also wrote ‘Elephant’ and underlined it, so I’m sure that was important. The lovely Maria also came and popped in at another time, a few shifts later, she crouched by my bed and held my hand. She was great.

Then there was the amazing Rebecca, with a pixie haircut that gave me massive hair inspo, beautiful straight teeth, a great smile and very pretty eyes. It was Thursday, day 3 post surgery. My memory of my day with her is surrounded by sunshine. We put the radio on in the morning and had it going all day, managed to find a station that was just playing an awesome mix of retro songs. We boogied through the day and she would pop over to come have a chat/write with me. She also knew Sydney, which was fun. When she went on her break, she had a tea on my behalf because we drink it the same way. I got up and danced to the radio as my bed was made. Kat the Physio came by and decided it was time to go walking! So I got all my lines and drains bundled up and with Kat on one side and Rebecca on the other, Clarence under one arm and my parents as cheer squad/photographers, my support crew and I went thundering down the corridor. I, of course, was certain I was fine and was trying to do everything myself and quickly. It became a common theme of my friendship with Kat that she would spend a lot of time telling me to slow down, calm down. I appreciated that. I need these sorts of reminders when I’m not well. Later in the afternoon after everyone had left, Rebecca and I went for another walk. We danced down the corridor, and she took me on a short tour of the floor outside of our ward. We recommended each other our favourite Ramen places (Kanada-ya: mine, Koya: hers). I told her my legs were randomly itchy and she said it’s a side effect of the morphine and that I had a drug on my file that would counteract that! Brilliant! I was sad when her shift ended, I’d had such a fun day.

I was lucky however, as it wasn’t long until I met Ronnie, who took over from Rebecca, and had actually been there that first night with me in the ICU as I was coming out of anaesthetic. I didn’t really remember of course but I wanted to know all about it. Well, I was distressed and thought I was being choked (start the 11 day obsession with getting rid of the thing hat had been choking me – my tracheostomy). Apparently I was so stressed they got someone in to have a look if there was something wrong with it. Nope nothing wrong, but my body did think this new invader was trying to kill it. Anyway, we chatted and learnt about each other as she pottered around doing her work tasks (entertaining me was obviously the number 1 task). I wrote out my ‘list of demands’ that I wanted her to fill for me before bed (cheeky). In the morning, she cleaned my eye for me and put ointment and drops in it, and for the first time in 3 days we saw my left eye!

During this whole time I was in a shared ward, though our bays were big. The room felt so different with each person who was looking after me in that time that in my mind, each time the shift changed, I also changed location. This of course didn’t happen, but it could have! Someone could have been trying really hard to mess with me!

At some point someone described me in this time as a ‘big personality’. Just goes to show that you can be dopey and not able to speak and still get yourself across.

The wonders of anaesthetic

Anaesthesia isn’t for me. Though I’m not sure 16 hours of it is really for anyone. But to be fair, I had a fun time going in to it.

But I’ll rewind a little. I had stayed in the ward on the Sunday night before my surgery. They had taken out my PICC line a few days before and assured me I’d had my last bloods. Turns out they wanted more, which of course ended up with a couple of people having a couple of tries and fails each. Always a pleasure.

I met Debbie who worked in ICU, who invited me to join a study to help detecting infection earlier in bloods. I said as long as it doesn’t require any extra stabbing, she could count me in! So in I was, and she informed me she would be popping in to take blood from one of my lines over the course of my stay in the ICU. Great, always happy to help. And also happy to have a familiar face I’ll see on the other side of the surgery.

Checking in took forever and we missed dinner. So once it had all been sorted and I had a bed, Dad popped out and got the three of us Honest Burgers, which we then ate in my hospital bay. Sorry other inpatients, my dinner is better than yours was.

I made my first friend that night – one of the nurses, Kirsten I think was her name. We chatted as she sat waiting to see if the aggressive shouty old lady in the bed across from me had fallen asleep (the lady who had shouted ‘hello’ at me earlier as I walked past and asked the nurse if I were boy or a girl).

After my last solid meal, I had to ‘carb load’ and have some special drinks at 8pm and then before 6am. So I got woken up at about 5:30am and I had my drinks. Then I had to have a shower with some special gel and put my surgical robe on (I found out later that I had it on backwards). I saw Deepti had come to say hi quickly before surgery, which was amazing, and I also met the… uh… Like anaesthetic registrar or something? I don’t know these terms. But she was awesome too. I felt settled as soon as I saw Deepti, and I was rushed by an orderly to put my special socks on as it was time to go zooming down the corridors to the theatre!

I went in and the girl I had just met came with me, and I met someone else who I think was maybe managing the theatre? Did I make that up? Anyway, he was awesome (and alerted me to the backwards nature of my gown. He was going to leave the room so I could change but I just pulled my arms in and spun it round and pretended I had it right all along).

We chatted as she prepare all the drugs they were about to give me, and people were zooming in and out. I was in a little room, lying on a bed-type thing, just off the main surgery room. Occasionally my people would pop in and say hi, or any other staff would be running around, all in maroon scrubs, all cheery. I was having a great time. I got little snippets of view through the door as people came in and out, that alerted me to what I was about to go in to. They had a big meeting in the other room, then it was go time.

I don’t remember there being a massive issue with cannulating me, though I feel like there might have been a few attempts. I don’t remember any counting down, nothing like that, I just don’t remember anymore.

The next couple of days were a blur. I woke up with a catheter, two cannulas (one in my hand, one in my groin), a tracheostomy (breathing tube in my neck which meant I couldn’t talk), a feeding tube in my nose, a sore shoulder, a very swollen face and a lot of confusion.

I remember my doctors coming in and having the same conversation with them about 3 times (either they were trying to mess with with me or I was hallucinating/dreaming… I feel like they probably didn’t have time for the first option so we might have to settle for the second). I remember not being able to work out that in order to stop the pain I had to find a specific cord that had a button on it and then I had to press that button in order to cause a series of events to happen that resulted in the pain apparently being better. I remember thinking it was the middle of the day, getting up and sitting in my chair and asking why no one had told my parents I was awake (turns out it was midnight and they had already come to visit). I remember my parents later telling me they had seen me when I woke up from surgery but I have no recollection of seeing them then (apparently I was quite preoccupied with the pain in my shoulder). I remember the catheter causing me loads of pain. I remember having no end of problems with my tracheostomy, thinking I was constantly choking (which went on for the whole 11 days I had it). I remember falling asleep constantly, mid conversation, whenever.

I think it was about 2 days post surgery when I started to get a little bit more sense. But we’ll save those stories until the next post.

Woah hey look, she lives!

I can only apologise for my radio silence. I know none of you would blame me for a moment, but I’m sure you have all been concerned, intrigued, interested… Some combination of all of the above, maybe some other things too.

I have not been up to writing at all, and I’m still not. But I do have a lot of stories too tell, and they will come out.

For now, I will give you the quick run through.

I went into surgery on the 5th, came out late (16 hr surgery) and started the recovery process. It was gruelling. Then on the Saturday morning, day 7, suddenly the new bit, the ‘flap’ of skin from my shoulder that was making up the roof of my mouth suddenly started failing..They hoped it wouldn’t be serious and they put me back into emergency surgery, hoping to save it in the 6 hour window they apparently had, planning on a 4-6 hour surgery. So before long they had me under and when I woke up I found out it had been another big 10 hour surgery in which they had taken a blood supply from my leg, to bypass a clot that had formed in my neck.

Thanks for all your well wishes everyone, they meant so much but unfortunately the first attempt didn’t go so well. You never expect the ‘in small cases this might happen’ will happen to you but I guess it can.

So that’s two massive surgeries in the space of a week, mere weeks after completing 6 months of chemo. My face was so swollen, my shoulder hurt, I couldn’t talk, I was in so much pain from my cannulas, I felt like I was dying. Each day I woke up feeling worse.

We’re now at day 5 of surgery number 2, day 12 in total. This morning I felt worse than before too. My face and new mouth are so swollen. But I’ve had some wins today (I’ve even managed to do some talking today) so I’m hopeful that I’m getting close to tomorrow being a better day.

To friends who have been here with me since before the surgery, thank you for your patience, your support and your messages – some I’ve had a chance to read, some I haven’t but I will, and I plan to reply to them all.

Mum and Dad, thanks for coming by to see every day. The days when I was too tired to hold a conversation, the days when I hadn’t slept at all and was demoralised, sore, confused and frustrated, the days when I had wins, the days when everything was failing apart. Thank you for pulling me back into consciousness after surgery.

To all my new friends, you are some of the most amazing people I have ever met and you have kept me going through the hardest time of my life with the greatest smiles, the most amazing attitudes and so much patience.

I had a visit this morning from one of my surgical team, as I do most days – Deepti is amazing, just seeing her face makes me smile each day no matter how bad things are. She’s a total rockstar. She mentioned she had been reading the blog and I thought gee, it’s time I wrote you all something at least, even if it hasn’t been much.

So to everyone reading this, thank you from the bottom of my heart. I’m not going to lie, there have been many days when I have wondered if it’s all worth it. But you do all help me through.

I’ll be back when I can. Still not out of the woods but still (hopefully) going in the right direction).

I am desperate for a sip of water, then of course cup of tea.

I will post photos at some point. I warn you, they’re very real. Scary.

Last minute thoughts on this surgery

I’m not like… Worrying about this surgery.

I mean… I know the risks. I know it’s huge. I know it could end up being even bigger than they expect. I know things could go wrong.

But I’m not lying awake at night worrying. There’s no good in me worrying about it. It’s not like a test when I could worry I haven’t studied enough, that’s a legitimate worry. Or a big meeting I haven’t prepared for. But this is entirely out of my control.

Yes there are things I will be upset about on the other side of the surgery should they eventuate, but I can’t deal with them now. I could start googling how to reconstruct noses in case it’s really bad, but there’s no point in assuming it will be, that just causes unnecessary anxiety. And if it is, it’s surgeons I should speak to, not google.

I had my ‘consent for surgery’ appointment on Friday. I mean obviously I’m going to consent to whatever my surgeons think they should do! I don’t think I know better than them. Do I even want to know all the details of what happens between 8am Monday morning and Tuesday when I wake up? I just want to get through it and see what I have to work with. And hopefully everything will have gone well.

What I have been thinking about this week as I wait to fall asleep is how incredible this all is. How are they going to remove my jaw, tumour and part of my nose all the way up to my eye socket and reconstruct it, all through the roof of my mouth?! How is that a thing?! I mean I trust that they know exactly how to do it, but seriously – how is it a thing?! And how on earth is the body able to handle it?!

I have been constantly amazed by medicine over the last 7 months.

It is a funny thing to think though, that I am putting my life in the hands of these relative strangers, and letting them do to me whatever they see fit to. But I suppose we put our lives in other people’s hands all the time – getting on a bus, plane, getting in a car…

I’m in the best hands. That’s comforting to know. Let’s get this damn thing out.


I always really liked the receptionist in the oncology clinic, but I haven’t been back there in a while. Yesterday I went to surgery clinic and she was there.
‘Jen!’ She called out happily and asked me take a seat
That made me smile.

I had some meetings with the Speech therapist (Lucy) and the Dietitian (Jessica) and I love them both. I will be happy to see their faces on the other side. As well as Ammi and Nima who I met the other day (I’m not sure if they’re both nurses). And the CNSs too, I’ve met a couple of them, not sure if just one or all will be around.

Oh and did I mention my anaesthetist is from Sydney? Can’t tell though, I think she said she’s been here 12 years.

Anyway I spoke with Lucy, Jessica and Laura the CNS yesterday as well as Deepti, who is another wonderful member of the surgical team and I’m feeling a bit better about a lot of things.

Firstly, SURGERY IS CONFIRMED FOR MONDAY! I will be admitted Sunday afternoon and at 8am Monday it’s all go. I won’t wake up again until sometime Tuesday.

Mum and sad will be here in time! They booked their tickets regardless and they turn up Friday morning. They will be here to take me in on Sunday. Mum may give you all an update when I am awake if I am not capable.

The surgery itself will go for 12-16 hours. Could be more.

Nostrils can be reconstructed (they can even use cartilage from the back of the ear!)

My surgeon cares about how things look and he will fit scars into areas you normally have lines (like a smile line).

My shoulder blade will go in my jaw and some rib will go in my nose. They take the blood supply and some muscle out of the shoulder and connect them up with my face. I will also have a cut in my neck which will be like a window for them to connect the blood supply to. This all keeps the tissue alive. Incredible. My shoulder muscle will become the roof of my mouth. At first will be big, but as it wont be used, it will eventually atrophy.

Within 7-10 days they’ll be getting me eating pureed food and drinking. It’s not definite I’ll go home with a feeding tube but I might.

There’s a small chance there will be a problem with using my bone. Then I will get a temporary copper plate and eventually a prosthetic. But hopefully not.

In less than a week this cancer thing should be gone. I will be me again. A new me, hopefully eventually not looking too outwardly different to the previous me, but ME! Me without cancer!