The joy of ongoing appointments

I was talking to someone the other day who was saying that going back to the Macmillan Cancer Centre for appointments is something she fears and finds upsetting. And I get it, there can be a certain sense of PTSD with these things, and constant reminders of the trauma isn’t necessarily what you want.

But my views could not be more different.

I remember the first time I walked into that building. Hanging from the ceiling in the foyer is a colourful art display of things picked up on beaches across the UK. From toy spades to flip flops to plastic straws to plastic crates and any other number of things. You could sit for hours gazing up at all the things hanging there, and collectively, I have.

I remember the first time I met all the smiling people who told me they would look after me. The oncologists who said they knew how to treat me. I remember the joy I felt at being in safe hands.

I remember going back every treatment week to catch up with everyone and start another session to cure me. All the people who were working together to give me the best chance at living. The laughs I had with my pharmacist, the smiles from Ambulatory care when I showed up for my chemo. We would debrief on our weekends.

I remember finishing chemo and being transferred over to my surgical team. The same building, but clinic was over the other side. You would think it would mirror the oncology clinic since it was the same floor but it didn’t. It was similar but not the same. But the pattern on the floor was the same – a colourful mosaic designed by the man who designed the Sgt Pepper Album cover. Can you imagine?

Even after surgery I didn’t feel on my own, despite being cast out into the big wide world – I had appointments to come back and see everyone. They still cared, they were still looking after me.

These days I get to come back for Oncology clinic every two months, and a chest xray to check it hasn’t spread to my lungs. I know some people would use that as an opportunity for anxiety that their cancer has come back and they will therefore soon die. I approach these appointments with excitement. I’m so glad and grateful that they keep monitoring me so closely and I quite enjoy getting told every couple of months that everything is ok. And if there is a day when it isn’t, well I couldn’t be more happy that they had kept checking.

The Macmillan Cancer Centre is also where I have access to my psychologist, as well as complimentary therapy (e.g. Massage and reiki *eye roll*). It’s where I can pop in to the ‘Living Room’ to make a cup of tea and probably make some new friends if I feel like it. It’s where I could attend support groups if I needed them.

This is the place that has taken me in, looked after me and hopefully saved my life. That keeps providing love and support, even now. That has somewhat been my second home over the past 18 months. That is filled with people who care about me and my well-being. What an amazing place to have! Why would I fear going back? Why would I get anxious each time they show they are still looking out for me? Why would I be angry at the smiling faces of people who’s job is to help me?

Every time I go back I am reminded of how lucky I am and I smile. I smile for all the good I have experienced over the 18 months, thanks to this very place.

Monday Monday Monday

And not just any Monday, but one that had the potential to hold news about small white things that go in your mouth and help with things like talking, eating and generally living.

Yes.

Teeth.

After weeks (months overall!!! 7 in fact!) of waiting and chasing, I finally got the call I had been waiting for: a referral to the seemingly elusive teeth man.

Let me try to explain the things riding on this appointment.

Firstly I was hopeful to find a timeline and course of action for teeth and hopefully get some information about the process because I have less than no understanding what happens or how it works. In fact the only things I know about it were from a chat with the CFO at work who seemed to have some very basic knowledge about implants.

I went in and had an x-ray first before seeing the teeth man. The machine played a strange digital rendition of Fur Elise by Beethoven. Which coincidentally is also the sound my doorbell makes. I tried to stay still and not giggle.

The waiting room was fancy. This place was fancy. The dental nurses wear white and the dentists blue.

My dentist Dr Dawood is my new best friend (yes I’m well aware I’ve got a few of them now). He was so nice, really easy to talk to, and also realistic. He looked at my teeth and asked if I ate a lot of fruit. Um… Not particularly… Then he asked if I’m vegetarian. No… Then he said ‘how have you been surviving?!’ I said brilliantly! I munch on everything!

So, we start on Wednesday (omgomgomgomg), taking moulds first. They will get the ones that Deepti took before surgery and make my new teeth just like my old ones! Cooooool.

First they will look at making a denture and see how it fits (if it even fits after everything that has changed in there) and then later consider implants.

Until we start trying we don’t know if it will work. If it doesn’t work, it’ll be back to my surgical team and back into surgery to look into more reconstruction from another body part. Yay for being plunged back into March.

Also there’s a good chance my lip won’t be able to fit over teeth anymore, especially with my sunken face, collapsed nose and the scar tissue from the stitches. So there might be issues there with actually fitting teeth in my mouth. And even if I can get the teeth in, they won’t fix these things so I’ll always look a bit odd. Better get used to being told by new people I meet that I have a cleft palate… Eye roll

But still, teeth is better than no teeth. And we’re aiming to have something temporary by the end of November! GUESS WHAT THAT WOULD BE IN TIME FOR?!! BIRTHDAYBIRTHDAYBIRTHDAYBIRTHDAY!

I was bouncing around manically and smiling rather widely as we booked in appointments over the next month or so. The receptionist who booked me in was lovely but I had to laugh. She asked me if I’d had an accident and I said no, cancer, and they cut my jaw out and now I’m just waiting for teeth.

‘Oh so your mum or dad has it too?’ She asked.

‘No, there’s no genetic link for bone cancer’ I replied.

‘And you didn’t smoke or anything?’

‘Lol no…’

The old what-did-you-do-to-cause-it-so-I-can-check-I-won’t-get-it job. Sorry love, you’re just as likely to get cancer as I was. Most cancers don’t have a genetic, environmental or lifestyle cause, we didn’t do anything wrong to bring it on ourselves…

What the experts say…

Every time I see my Oncologist or Surgery team they send a letter to my local GP, the onc at my local hospital, and good ol Sproaty who gave me my diagnosis. And a copy goes to me too. My name gets a tick next to it on the letter that comes to me. I like the thought that everyone gets their own tick next to their name in their copy of my cancer story.

These letters are kind of a way that us patients find out the more specific details of our condition. Maybe add a bit more to the things we’re told, sometimes fill in the gaps.

Each one describes what was discussed at that specific appointment but there is a big bold bit at the top that stays the same each time, though bits have been added as time has gone one. So this is it. This is me…

Diagnosis: August 2017: localised high-grade chondroblastic osteosarcoma of left maxilla. To commence neo adjuvant chemotherapy (cisplatin, doxorubicin, methotrexate).

Treatment: 8/2017 – 2/2018: MAP chemotherapy, complicated with AKI which was reversed, methotrexate was stopped after cycle 4.

Surgery: 5.3.2018: Mid-facial degloving access – right maxillectomy, unblock with nasal bone up to the inferior of the medial canthal area and to the level of the zygomatic buttress, including pterygoid plate. Reconstruction with a chimeric latissimus dorsi and tip of scapula bone flap.

Histology: High grade chondroblastic osteosarcoma — several close margins of a few millimetres – tumour presence on the right zygomatic buttress. Therapy-related tumour necrosis is <50%.

Not sure why they keep insisting it’s left maxilla at the start, it wasn’t. Anyway, sounds like they cut out the correct bit…

It’s always fun reading the letters they write. I feel connected with everyone and informed. And hey, who doesn’t like reading about themselves?

Yes, I had to do a lot of googling of mentioned terms. Had no idea what most of them meant…

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.

Trachy tales

While a lot of the point of this post is really to say ‘Kat the Physio is amazing’, because I definitely haven’t given her enough time yet, I feel I also need to talk a little bit more about the Tracheostomy.

The concept is great. Hole in the neck to breathe through, so no matter what they’re doing to your mouth/face, no matter how much swelling, you are still breathing fine.

I kind of wish I’d had more details about it explained to me before hand because I had no understanding of how it worked whatsoever and it stressed me out. I wasn’t in control and I didn’t understand what was going on. In fact I regularly wrote Kat messages saying that I didn’t understand what she was doing. She was very patient and explained everything to me. She even drew me some diagrams which really helped. In fact a few people drew me trachy diagrams, I have three in total in my books. At this time I think I was still falling asleep mid conversation but regardless, Kat taking the time to explain everything to me was very reassuring.

After you’ve had it in for a while they start going through the steps to take it out, weaning you off it, which can take many days. I started the process before I had to go back in to surgery the second time, but had to start again from there. It was 6 days between second surgery and getting it out. I don’t think I would have lasted much longer.

Of course you can’t talk with a tracheostomy. This is the most obvious effect of it. It goes in below your vocal chords and seals everything off – no air rushes past to make noise. Not great when you’re straight out of surgery. Also means making friends is harder (although maybe people liked me more this way).

Firstly, the tube irritated me so much. I’ve always been quite a cougher, often quite wheezy and irritated. This was like the ultimate. And you can’t cough with a trachy. You can try, and it just makes a horrible hoarse sound and just irritates more.

I also could often hear mucus in my breathing which stressed me out and I wanted them to suction it out for me but they didn’t seem too bothered. Weird.

I had a constant struggle with nurses over clearing the trachy. They have this super long suction tube which they shove miles down inside your trachy and would almost kill me with coughing for a good 15 minutes. I hated that one and it was never necessary. Alternatively, I could cough up whatever was in there and they could just suction it out the end of the tube. No dramas. But they all preferred the first and insisted on doing it. A few of my special nurses got it though. They had my back.

Every time I coughed, the trachy also pulled on the stitches holding it in which hurt, and there was often mucus and blood that came out onto my neck when I coughed which I hated so much (who would like it…)

So day 2 post second surgery it was time to take the first step with the trachy – deflate the cuff around the tube itself. This allows some air to flow through. Unfortunately this required sticking the long thing through the trachy which sent me into a tremendous coughing fit and Kat decided I wasn’t ready so the cuff went back up. This didn’t fit well with my obsession to be always moving forward, but I was tired so I didn’t complain too much. Kat also knew how much I liked to progress so she was pretty good at managing my disappointment if I ever didn’t.

The following day we did it again and I did a lot better, though lots of coughing still ensued. They also changed to a different inner tube at this point.

The funny thing is, coughing is usually a sign that you’re not ready to progress to the next step. My coughing was my body screaming for the bastard to be taken out.

The day after, it was time for the important step – the speaking valve!!! This allows air to still come in through the trachy, but it goes out through your mouth, therefore passing your vocal chords, therefore allowing you to talk. And amazingly, cough! It was a dream!!! I got the valve in and mum and dad came to visit shortly after. Kat passed them coming in as she was leaving and mentioned that there was a surprise waiting for them but she wouldn’t say what.

They came in.
‘Hello’ they said.
‘HELLO!!!’ I replied.
For a moment it didn’t register with mum. ‘Did you just speak?’ Asked Dad.
That was fun.

The second I got that speaking valve in everything felt better. I could also swallow. I’d accidentally been swallowing over the day or so before this and it felt like it was pushing mucus and blood into my nose and ears (I don’t know if that’s actually a thing but either way it wasn’t nice). But now I could swallow and talk. Phew. Usually you would only have the speaking valve on for a short period of time at the beginning but I kept mine on full time. It felt so much better.

Kat had never heard my voice. I was excited and talking at a thousand miles an hour, forgetting that as I had a huge new mound of skin in my mouth, no teeth and an entirely blocked nose, I was pretty difficult to understand. Once again she resumed the role of telling me to slow down, but for different reasons this time. One of the speech therapists was there too. When she heard my voice she asked me where I was from. People don’t usually realise I’m a foreigner! How did she mange to do it amidst my compromised speech?! She was from America, maybe expats are particularly tuned in to accents that aren’t quite British. Or maybe it was due to her being a speech therapist, I suppose she’s used to dealing with language and how words are formed.

By this stage we had all worked out that the sooner we got this thing out, the better. So after two nights with the speaking valve, it was decided it could come out. This had another implication too – that my surgeons were feeling confident that I wouldn’t have to go back in to surgery.

Taking it out was an interesting affair. I wanted Kat to take it out as she was my bestie and we’d been through so much together. But there was a nurse who wanted to have a go. Andrew was also there, my surgical clinical nurse specialist.

I’m always happy to let someone have a go, everyone needs to learn sometime, but this was one of the most heavy handed nurses I’ve come across. She was lovely, just didn’t have a very delicate touch. But Kat was there too, to help, to explain things to me as we went, to hold my hand when it hurt.

My goodness did I cough. They had to hold the trachy while they cut out the sutures and I couldn’t stop coughing. Especially when the nurse took over holding the trachy and she pushed me down on the bed with how hard she was holding it, I remember staring up in fear. Andrew seemed to realise and stepped in to do it quickly. I tried really hard not to cough, I tried to be good. I mostly failed.

In the end, actually taking the trachy out was the least difficult part. I didn’t even notice when they pulled it out of my neck, except for the fact that I miraculously stopped coughing. They told me it was out and I suddenly realised I was breathing through my mouth again. I lay there smiling, a look of bliss on my face. Kat was checking the oxygen level in my blood. All good. ‘Are you ok?’ She asked. I beamed up at her, nodded and gave her a thumbs up. It was like I was in a dream. I was floating on clouds.

They dressed the wound and explained to me that I would need to put my hand on the hole whenever I tried to talk or cough, because until it healed, I had a rather large hole in my neck. In fact I woke up during the night that night and realised that I was suddenly breathing through my neck again and needed to get it re-dressed.

So many people who saw me after that commented excitedly on how my trachy was out. They all knew how much it bothered me. This was a good day. This felt like a win.

Trachy drawing:

Hole in my neck after getting it out:

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 at UCLH 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.