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!

Well hi!

I’ve got a couple of posts lined up for you but I thought first, since you haven’t heard from me in a while, I should give a quick update.

Though to be fair the reason you haven’t heard from me for a while is because I literally have nothing to update you on.

Well that’s a lie, since we last spoke I bought a flat and moved in on my own for the first time ever! Nothing like cancer to give you a mid (1/3?) life crisis. So yeah when I said I have nothing to update you on I actually mean I did one of the biggest things you will do in your life. So that’s fun!

I was told my first implant surgery would be Jan/Feb. Over Christmas I was cc’d in on a letter from the teeth man to my local GP that said they would be aiming for February. Well… It’s now mid Feb and I haven’t heard anything so I guess that won’t be happening…

I met someone recently who had a similar surgery to me and has just had his first implant surgery. So I got some details from him about the process. Basically it’s done in three phases. The surgeries are quick, but they are done under general anaesthetic. There will be approximately 5 months between the first two surgeries and hopefully not too long between the final two. So I’m hopeful I might have some sort of teeth thing in around 6 months from first surgery. When that will be I couldn’t tell you. I really hope I get teeth by the end of the year…

More limbo, more of the waiting game. I’ve been busy while waiting though, details of which I will share soon.

Today I went in for my 3-monthly chest xray and quick hello to my Onc(ologist). There’s some sort of familiarity with coming back to the Cancer Centre, but also a strange detachment from the place that was practically my second home for so long. Just as I was waiting for my xray I looked up as the lift came down and to my surprise I saw my friend Krista, who has just finished her chemo for osteosarcoma in her leg! We had a quick catch up, she’s in for immunotherapy every week.

So the chest xray is every three months – the most common place for osteosarcoma to spread to is the chest so they monitor it closely. How are my xrays looking? Well they’re not clear… There’s been something showing up in the xrays since mid last year (yeah I’ve known about it for a while), so more CT Scans and MRI to see what’s going on. Could it be cancer metastases? Yeah it could. Is it likely to be? We don’t think it looks like typical mets but the only way to be sure is with scans. So bring on the scans!  Either way I have some damage to my lungs, so that’s fun! I don’t feel compromised, so hopefully nothing too serious.

I hope you all have a lovely weekend planned! I’m off to the theatre tonight!

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.

The next page in the teeth story…

I had another appointment with the teeth man today. Actually at the moment it’s the teeth woman. She’s working with me to see if we can make a temporary denture-type thing for the time being, before we start looking at implants.

Today it was to see if something will fit in my mouth and to see how far we can build it out to hopefully make my nose and face less collapsed. The answer is not very far. I still have this bit of scar tissue right across the inside of my lip which means that when teeth go in there, instead of pulling my lip into my mouth as it does now, it pulls my lip up into a super attractive snarl and I can’t close my lips. Which leaves me looking rather ridiculous. My nose is still collapsed, my face still sunken and I’m snarling with open lips.

So…

I’m not sure where to go with that. Also as it will all be held in place by the few teeth left on the left hand side of my mouth, I think it will be rather loose and might not make talking or eating very easy.

I was holding out hope for this next step to make things a bit better, but being hopeful does tempt fate and I should really have known better. I guess I was prepared for this… It’s still a bit disheartening. But on the way home I discovered that Bowie narrated Peter and the Wolf and it’s on Spotify. So… I feel like that’s some sort of consolation.

They’ve made some super cool moulds of my mouth, which are fun to look at. They were less fun to make. As I can’t breathe through my nose, it’s a bit of a nightmare to have your mouth filled with the gooey stuff they make moulds from. At one point she covered up my teeth completely and I couldn’t breathe at all. Oh well, I survived, still breathing! Two more weeks until my next appointment, and another appointment two weeks after that. No idea what each is for specifically, or what sort of timeline we’re looking at for what. But we are moving, so that’s something.

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…

#scancitement – my version of #scanxiety

This post probably has more relevance for my cancer friends and family, the rest of you might not quite understand what I’m going on about, but please bear with me. Here is an insight into the world of regular scans.

You might have heard (well… read…) me say before, I don’t get #scanxiety. I don’t see the point in assuming something is bad before I know it is, that just sounds stressful (yes sometimes I’m too logical for my own good but in this instance it’s useful). In fact I think scans are great. They either prove things are fine (yay!), or they catch anything that isn’t (phew!) then you can start doing whatever is needed to manage/reverse what the scan shows.

So I suppose instead of #scanxiety I get #scancitement (slightly less catchy). The results either make me happy that things are good or relieved that whatever is not good has been caught. I guess you could favour being blissfully unaware of things being bad but that’s not great and especially when it comes to cancer, which can lead to things getting a lot worse very quickly.

It’s not that I’m happy-go-lucky, ignoring the possibility that the results could be bad, I do prepare myself mentally that the results may not be good, but that’s as far as I go. I’m not minimising other people’s fears when it comes to scans (and a lot of people get a lot worse results than I have so I’m only commenting on my own set of circumstances), I totally get that it’s not something that people can just switch off, I’m just saying that these fears don’t apply to me.

So I don’t tend to think things are bad until I find out they actually are, which is generally a good thing, but can also have some not so great side effects when it comes to early detection for if my cancer comes back.

I’ve had chronic widespread pain for years and I just put up with it (doctors are yet to find what causes it, I suspect it’s fibromyalgia, or something equally as useless to diagnose and treat). My cancer didn’t present with pain but that’s not to say it won’t if it comes back. I’ve had quite a sore back for the past week, no I don’t think it’s cancer in my spine, but will there be a point where it actually is, and I ignore it for too long and just chalk it up to some other unexplained and inconsequential pain? If I were to go to the doctor about every unexplained pain, I would be there weekly and they would never take me seriously.

I also tend to have IBS symptoms fairly often. How will I know if it’s just normal or if I have bowel cancer? My Nan had bowel cancer… (I have learnt from my amazing bowlie friends to look for blood/changes so I’ll keep that in mind).

It’s really hard to find a balance between getting everything checked and getting nothing checked. Where do you draw the line?

So I am grateful for scans. They take the pressure off me. Although the ones I have won’t pick up other cancers, they are at least checking the most common places for mine to spread to, so that is a relief. If I could, I would opt for getting everything scanned regularly, including blood tests to check for things, and whatever else. That way it wouldn’t be up to me at all and I can forget about it, knowing it’s not my responsibility!! Now that would be a relief!!

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…