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…

The slightly harrowing lead up to my diagnosis…

Something I haven’t written about here yet is how it came to my attention that there was something wrong with me. I know I’ve spoken about a dental specialist breaking the news of the big C-A-N-C-E-R word to me, and I obviously have a big lump on my face. But it had to start somewhere. And everything has a story behind it.

If you are squeamish about teeth… well… I don’t think this story is too bad, but perhaps proceed with caution.

I noticed pretty suddenly (i.e. within a couple of days) that quite a large lump  had appeared in my upper front jaw, just below my nose. I figured going to the dentist was the way to go, so I booked an appointment.

The first thing he did was to tell me it was an abscess and ask me when I last had a root canal in that tooth. I looked at him puzzled and told him I have never had a root canal. He didn’t believe me, and told me so.

Now I love my teeth. I take very good care of them. I think teeth are so important to the way you look, feel, act… My teeth are precious. No I have not had a root canal, thank you very much! I’ve always taken good care of my teeth! I couldn’t think of anything worse than having bad teeth!!

Still not believing me, he ordered an X-ray to prove to me that I was wrong. How on earth he thought you could forget a root canal is beyond me.

Sure enough, the X-ray came back and showed that the tooth had never had a root canal.

He then proceeded to ask me when I knocked the tooth – when I fell over, or hit it, or was playing a ball sport and it got damaged.

Once again I told him there has been no impact, my tooth is fine, there’s just something going on in my gum. He instructed me that my tooth was in fact dead, and then he proceeded to push the chair back and tell me that he would take the nerve of the tooth out now, and I would have to have root canal later, done by a specialist.

I was in shock. I didn’t think my tooth was dead, how would my tooth be dead? I tried to protest, I said maybe I could get a second opinion first from this root canal specialist. But I was already leant back in the chair, his hands were in my mouth and the injection was done. No second opinion for me.

So I lay in the chair, tears streaming down my face, while the dental nurse held my hand. It was painful. And I knew I didn’t have an abscess or need a root canal. But then again, who am I to say these sorts of things? He was a dentist, I was just having a little panic attack because of the shock of it all. He would know.

He finished up hollowing out my tooth and taking out the nerve, and tried to cut into my ‘abscess’ to drain it, but with no success. So he prescribed me some antibiotics and referred me and my poor tooth to the root canal specialist. I left in a lot of pain and shock, and £50 poorer. Yes, I got to pay for that lovely treatment.

Two days later we went along to the root canal specialist who looked at the tooth and said ‘oh yes it’s dead.’ (Well of course it’s dead, idiot, your mate removed the nerve from it). He said there was nothing he could do until the swelling went down, so he cut into the ‘abscess’ deeper to try and drain it but once again to no avail. He gave me a temporary filling and said to go home, finish my antibiotics and go back in a couple of days. Another £50 for that privilege.

I went back a few days later and the first dentist saw me. He was surprised that the swelling hadn’t gone down at all, and decided to refer me to the specialist at Guy’s hospital, just in case. About the only useful thing they managed to do. I left with another script for antibiotics, and the instructions to go home and wait for my ‘urgent referral letter’ to reach me in the post.

The other thing the root canal specialist said was that as soon as it got any bigger, I had to go straight to the Emergency department at the hospital, and they would do an emergency procedure to cut in and drain the abscess. Now that’s stressful! Constantly having to gauge if it’s any worse and then being ready to run to the hospital if it is!

The lump was on the front of my face, as well as on the roof of my mouth behind my teeth. And of course it got bigger. So one afternoon I went to Emergency, as requested, and they looked at me like I was an idiot and said there is absolutely nothing they could do. They touch nothing within the mouth, that’s a dentist’s job. Um… ok… I swear the dentist told me to come here. According to the nurse the dentist was lying and needed to get his facts straight.

About 6 weeks or so after this ordeal started, I finally had my letter and booked my appointment at Guy’s Hospital.

This was when I met the lovely Dr. Sproat, who whisked me away for scans and managed to get me in for a biopsy on the same day as my appointment. A week later I was back to see him, he was telling me the results and I was relieved and happy to have some idea finally about what was going on.

If there were any confusion before, yes now, after the work of the first dentist, my tooth was dead. He killed it. I had it confirmed later that the tooth had not been dead beforehand, this was all unnecessary.

So now I’ve got this sore, temporarily filled front tooth, which means I can’t bite into anything hard.

I suppose you can’t expect an every day dentist to know how to spot a very rare cancer in a very rare location. I suppose he did everything he could, everything within his realm of expertise. You just wouldn’t expect them to do work if they’re not sure what the problem is. I don’t know if there’s anyone to blame. It’s just a series of unfortunate events, culminating in a cancer diagnosis. Some people end up in hospital when they find out they have cancer, organs failing, and operations done. Mine wasn’t too bad in the grand scheme of things.

Just makes you wonder, with cancer being so prevalent, why is it not more in the forefront of people’s minds? But then again mine is rare. So who knows. How could they have known? I just wonder if the dentists had listened to me in the first place, maybe we could have avoided all of this? Oh well. It’s done now, and it’s not too bad really. No use crying over spilled milk. Or murdered teeth.

All the tests…

So today was MRI, Ultrasound and CT scan.

I didn’t find the MRI bad at least. Before starting, they had to put a cannula in my arm. She said I had ‘well used veins’ and I wondered if she thought I was a drug addict. She then asked if I’d had a lot of blood tests in the past. Um… No… Though I did tell her that nurses have a history of trying many times to find a vein, which may contribute to that. She agreed that it would.
Geez, charming. Who wants to be accused of having ‘well used’ veins first thing in the morning?

The first arm she tried to put the cannula in, my vein decided to collapse. That hurt. Honestly, that was the worst part of the day! I was sitting there saying ‘ow’ a lot and asking if it was meant to hurt that much. Apparently it wasn’t.

She succeeded with the other arm and off I went into the machine. Ear plugs in, ear muffs on, it was warm, I was comfy and I had a nice little relax for 20 minutes while the machine sang to me. And I really do mean sang. I was expecting just some loud rhythms, but it alternated between different pitches and patterns… It wasn’t scary at all and the time flew by. They injected me with something near the end that they said might make me feel queezy, but it didn’t! So that was a relief. The worst part was the arm with the collapsed vein still hurting a lot.

Then upstairs to CT. I enjoyed that less. It was quicker, but you had to keep your hands above your head and do things like hold your breath at times. Then they inject you with something that seems to pulsate through you and you feel the drip thing jumping around in your hands. That was a bit unexpected and a little worrying. But it didn’t last long. Then shortly after, you feel like you’ve wet yourself. Seriously. They pull you out of the machine and you swear the bed you’ve been lying on will be wet behind you. But no, you’re fine. Thankfully I was warned about this!!! As I was walking back down to my ultrasound, some sticky clear liquid ran out of the cannula in my arm which was a bit stressful. But it wasn’t too much to properly worry me.

They did my scans out of order which meant I got the MRI first, which was good, because that was the one I was most worried about. Everything was a lot quicker and easier after that.

The ultrasound was the best bit. I walked in with plasters all over my arm, and my cannula still in, which was meant to have been taken out. The Ultrasound guy took one look at me and said ‘you poor thing, what have they done to you? Let’s fix you up’ and he took out my cannula and cleaned my arms up and made it all better again. He was really lovely and it was a nice way to end the session. We chatted about how much I love London, he asked me if the doctors had been good to me so far, and most importantly, after putting gel on my neck and running the scanner over it, he said it looks like the cancer hasn’t spread to my neck, glands etc.

That was a relief.

So I still have to have a PET scan, hearing test, echo-cardiogram and kidney test. And then we can get down to business! 5 days until chemo starts. Come at me.

When you first find out about chemo…

So yesterday was fun.

Turns out I need chemotherapy. And then surgery.

Chemo is going to be… insane. I start with a one-off session of three full days, then I have three weeks off for my body to build back up again. And then I start my cycles – four days a week for three weeks straight (where i won’t be able to function normally at all in that time), followed by two weeks off. That repeats for 6 cycles. 7 months of it. Then surgery.

Wow. I mean… I wasn’t expecting it. Not to that extent. Never to that extent. When the dental specialist first mentioned it, he said definitely an operation (which I expected), possibly radiation therapy (which isn’t too bad – you keep your hair and can keep going on with your life) or chemo (that big scary word that no one wants to think about).

Then when he said 7 months… and that’s best case scenario, it could get dragged out a bit. Well… I didn’t really know what to say.

The worst part is that the chemo won’t shrink that tumour at all, as it is in the bone and not soft tissue. So I will have this lump on my face until they operate next year.

But I didn’t cry or get mad or upset. I just sighed and nodded and asked when we could start.

Yes, I will rock the bald look. And blue wigs.

First meeting with the Oncologist

Today I’m meeting with my oncologist. He’s a specialist in rare sarcomas. That’s good, I feel!

I’m not sure what he’s going to say to me. I’m taking my boyfriend along for moral support.

On Monday I have all my scans – CT, MRI and an ultrasound, and we’ll find if it’s spread to my brain or my spine or my neck and glands…

Gosh.
I mean I’m still not worried, and I am super excited to get moving on all these tests. But then you think about what if it is in your spine… that seems like something that you can’t really recover from too easily… but anyway, I’m sure it’s fine. Just a sarcoma in my jaw. I’m not going to think anywhere beyond that unless I have to.

So glad it’s all moving so quickly. NHS, I love you right now.

So… Apparently I have Cancer

There’s no point in beating around the bush, yesterday a dental specialist told me I have cancer in my jaw. Bone cancer. Sarcoma. I literally have no idea what that is. He apologised a lot and kept asking if I wanted to ask him questions. I didn’t know what to ask him.

He seemed very stressed. I reassured him by saying that most people are likely to end up with cancer at some point in their life. He said that’s true and assured me we would beat it.
I said ‘of course we will’ and asked what’s next.
He called me stoic. That’s nice.

A friend told me I’m the strongest person she knows and that she admires me.
I mean… I kind of just want to get rid of it and move on, I’ve got a lot coming up over the next few months. I don’t have time for faffing.

So now I’m waiting for the hospital to contact me. I have done a lot of waiting over this time. My face has been swollen for the last 2 months (and has got worse since the biopsy). Just under my nose. I look seriously ridiculous! I knew I would need an operation, I have just been waiting to find out what and when.

What I wasn’t expecting that I would likely have to have a jaw/tooth/face reconstruction, that’s the part that scares me the most. But the cancer bit… I’m ok with that. Honestly. I suppose I might find out that it’s spread. Or that it’s incurable or whatever. But that doesn’t seem likely.

Turns out I have a super rare form of cancer too. I don’t know if that’s good news or bad. But either way, I just want to get it sorted out please! The dental specialist said he had seen this once in his whole career, another young girl who recovered perfectly well and you can’t even tell that she’s had anything done.

Of course now I’m worrying that my glands are sore, that my ears have been sore and feeling a lot of pressure in my head lately, that the growth has almost spread as high as my eye…

But what good will worrying do?