Friday surgery retraction statement

You know… I probably jinxed it by telling you all it was happening…

But I got a call earlier in the week saying they ‘couldn’t find a consultant’ for Friday.

I don’t really understand what that means, I thought it was meant to be my surgeon, Mr K who did it. But I guess maybe not? Maybe it’s just a lucky-dip, nab an unlucky intern who can consult.

Jokes.

Though I wonder why they are so cagey about giving me details about things.

So I’ve now cancelled a few things I was planning on doing and the like, which is a bit of a pain but I guess I can’t really complain, I guess these things happen.

I’m grateful to have a date, but I do feel a bit deflated that it’s now been moved… But what can you do. On the plus side my recovery will now be during the week as opposed to over the weekend, so I’ll have to have a few days off work. I guess that’s something!

In other news, I was asked to speak a few weeks ago to the ‘Airway Management Hub’ at UCLH (pic below) about my experience with the dreaded tracheostomy (post surgery breathing tube, for any of you who aren’t familiar with the terminology). I had a great time (at the talk, not with the trachy), and was able to provide some input about the patient perspective. The tracheostomy is a pretty scary thing and I would like to be able to help make the process better for the people going through it, so hopefully more will come from this, I think there are some important conversations to be had.

Anyway, happy Friday, friends. Looking forward to sleeping all day tomorrow!

Happy 70th birthday NHS

It is the 70th birthday of the NHS.

Where to start? I suppose with something that’s obviously close to me.

Looking at cancer alone – 50% of people get cancer. That means you, and your mum. Or your partner and your dad. Or your sister and your best friend. I know of people in the US who couldn’t afford treatment, or who have gone into hundreds of thousands of dollars of debt. I wouldn’t be able to afford that, would you? Even in Australia, when my father got an MRI checking his prostate cancer, he had to pay $600/go and that’s on top of private health care.

Even just looking at MRIs… I have to have one every 2 months. No way could I afford like £400 2 months, and that’s just for maintenance scans! Who even knows how much everything else would (have) cost.

Thanks to the NHS, I’m not forced to go into ridiculous amounts of debt just to have a chance of staying alive. The beauty of us all paying that bit of tax to the NHS means that anyone can get the treatment they need regardless of whether they manage to have a job that gives them lots of money. Their fate will not be sealed by their pay check. And it’s there for when the rest of you need it.

And I haven’t had to settle for a sub-par surgeon or someone who isn’t a specialist in my area, I’ve been able to get the surgeon I need, in fact one of the best.

When I was diagnosed, some people asked me if I would move back to Australia for treatment. This confused me a lot. Why would I decide to leave my life and the country I want to live in just because I have cancer? There’s no need to necessarily give up on life just because you have cancer (not for me anyway, I know everyone’s cancer is different)! What a depressing thought that I would suddenly quit everything of the life I have built and want to live.

But that aside, why would I want to go back to a country where you’re not looked after? Where you have to fend for yourself and if you’re not rich you must go into a lot of debt to have a chance of life? I say this with not a lot of knowledge how it would be to have my cancer in Australia, maybe you can get some funding to help and maybe Medicare can help with some. But going off my dad’s experience, it is no NHS.

And the people who work for the NHS… they are the most heroic people. The doctors and surgeons are making miracles happen, the physios, anaesthetists, radiographers, therapists (ok, I’m not going to go on naming all the types of professions in the NHS, if you’re one, you are the best) are irreplaceable, the nurses are absolute angels, even the people cleaning my room when I was in hospital brought me so much joy.

Sure I’ve had moments where things haven’t been great. I’ve had blood work lost, I’ve waited in a room in A&E until 3am waiting for a bed in a ward whilst in the absolute worst of my neutropenia and illness during chemo (but they did manage to find me a private room eventually), I’ve had dentists ignore my cancer (though to be fair they were NHS but made me go on private to get an appointment quickly), I’ve had doctors forget to come around and discharge me from hospital, I’ve had doctors in hospital causing me unnecessary pain and discomfort when they thought they were doing the right thing but didn’t take a moment to think… but it takes time to go through my memory to find bad moments, and they are only a small handful of thousands of fantastic ones.

I feel like people who complain about the NHS are those who haven’t needed it yet. Or even if not, I know there can be bad experiences in anything. But the amount of people I know who the NHS has saved…

The NHS makes me proud to be British. Growing up in Australia, I never felt Australian, I knew I was British. And from the first time I stepped off that plane in London 3 years ago, I knew I was home. I don’t feel like I could ever leave. There are many things that make me proud to be British, and a few things that don’t, but above everything is the NHS. This is something so important, special, necessary to our lives here. It underpins everything, looks after us, and it’s something we’ve helped create. What a fantastic thing. I know it struggles, I know more needs to he done to help it out, I have no suggestions of how to help it, I wish someone did. But I do know we need to protect it, to keep it alive.

Happy birthday NHS. I think everyone who has ever worked for the NHS in any capacity can really take this as their own personal celebration too. From the people who used to drive blood donations around from the donor to the receiver whenever needed before refrigeration existed, to the clinical trials which ended up saving lives, to the doctors working long shifts to make sure everyone gets seen and we all live.

We thank you all. So many of us are here because of what you’ve done over the years.

Happy birthday. Have a champagne, NHS, you deserve it. But don’t let your hair down too much, because we need you, every second of every day.

Last day in ICU

I had a very odd nurse that last day in ICU. She kept grabbing me by my painful cannula arm (like literally grabbing my cannulas) or grabbing me by my shoulder injury. At some point she managed to hit me in my swollen face and instead of just trying to apologise she tried to grab my face. I pushed her away. I feared slightly for my life.

I asked if I could go to the bathroom. I don’t know why but they wouldn’t let me walk there. So they brought me a portable one. She insisted on getting me sitting on it and said ‘would you like me to leave and give you some privacy?’ I nodded profusely. She then proceeded to keep pottering around my room doing things. After about 5 minutes I grabbed my book and wrote ‘are you going to leave and give me some privacy for a bit?’

‘Oh not now…’ she replied.

I didn’t get it.

After about another 5 mins she left.

I’m a very private person. I really am not ok with doing these things in front of people, which I think is fair! Though I did manage to deal with the fact that more people than I feel comfortable with saw me naked in this time but there wasn’t a lot I could do about it.

Apparently I was getting moved out of ICU that afternoon. We took final bloods from my arterial line and then took it out. One less thing in me to worry about!

We packed things up and I waited. As we were finishing gathering things, someone poked their head through the door to ask my nurse something.

‘Jen?’ I heard through the door and looked up.

It was Ronnie! I didn’t think I would get to see her again!

She came and sat next to me and held my hand. I felt like crying, I was so happy to see her face!

She was confused as to why I was back in ICU, as last time we had seen each other, it was Friday morning and I was heading out of ICU and into the ward. It was now Monday, and I explained how between then and now it had all gone downhill and I had ended up back in surgery. She got worried it was because of the Doppler going missing during her shift. I assured her it wasn’t.

What a fortuitous accidental re-meeting! It was seriously like a breath of fresh air seeing her again. Ronnie, you made my day!

As she was leaving, someone else came in and informed me that the blood taken that morning had been lost. This isn’t even the first time I’ve heard this. Unfortunately now, my arterial line was gone and this meant that I was going to require needling. Great. My favourite. And it was necessary to get these bloods in order to to be allowed back into the ward.

Amazingly, after about 5 attempts, we finally got some blood. Phew. 5 attempts is stressful and painful though.

And right on time, the porter turned up and it was my time to go zooming down the corridor and back up to T6. Back into the ward. I could only hope that this time I would be there longer than one night.

At this point it was Monday. 2 days post surgery #2. The swelling was starting to come up.

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.