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…

MRI and all that

I suppose I should let you all know that I got a call saying there is nothing ominous in my MRI! Yay! To be honest, I had forgot about it, people kept asking me if I had heard and it took me a while to think what I was waiting to hear about. ‘you must be so anxious and stressed waiting’ they would say. ‘for…what…?’ I would ask. Lol clueless.

Next steps? Don’t know. Well, I do know. Teeth!! Actively? No idea. Hoping that referral comes soon, don’t know how long takes to actually get in to see the guy. But hopefully soon I’ll be seeing the man with the teeth about becoming the Jen with the teeth.

In other news. I’m now on the biggest extend setting of my jaw stretching machine. The Speech and Language Therapist said that should last me a while, but it didn’t – just over a week. She also said I could then put it on a bigger stretch setting but it turns out it was already on the biggest setting. So… Um… Over achiever?

Also this morning I rolled my ankle and got a sharp pain in my forehead… Not sure what that’s about. (Don’t worry, it’s not actually related to anything, just an amusing anecdote. Now if I hurt my shoulder and my top jaw hurt, that would be amusing).

Anyway it’s Friday again! They just keep coming, don’t they? Hope your weekends look bright! If they don’t, have a look to see what you can do about it. Even in your dark days there are things to be found.

So I finally met with my surgeon…

It was a busy day actually. I had to go in first for a chest x-ray. This is one of those things I have to have every two months. You see, the most common mets for osteosarcoma (look at me with my cancer vernacular. Mets = metastasis = spread) is to the lungs. So we keep monitoring. Monitoring is good. That was all quick and easy.

Made a new friend in The Living Room in the Macmillan centre, standard. Hi friend! Originally from NZ, we had some chats about that side of the world, as well as people, society, cancer and the cancer gene (Which fascinates me). It would be nice to catch up with her again one day.

When you’re in the head and neck clinic, you see all sorts of people who have clearly had head and neck surgery (or are waiting to). Head and neck people, I’m not judging you, I’m not pitying you, but wow. When I see what some of you have clearly gone through/are going through, gee do I feel lucky. I mean I don’t compare these sorts of things, not really. Everyone has their different struggles and everyone can find things about their own case that they are grateful for (I’ve written about this before). But I just want to give them a hug. I mean that would be terribly patronising if I did, but I give them a smile. And I hope they can see in my eyes that I mean it, and in some ways I get it. And please to all you who are struggling out there too, in whatever way, I want to give you a hug. Next time you see me/if we ever meet, let’s hug. It won’t cure any illnesses, but it’ll be a reminder that we’re never alone. And I care deeply about every one of you. I have a lot of love to go around.

Anyway, Deepti wasn’t in which was super sad because I was excited to see her! But I’m pretty sure she said she would be on holiday around now, so bloody good for her. She has earned that, she deserves that. Hope you’re enjoying yourself, girl!

So. Down to it.

Mr K: So you’ve spoken to the dentist?
Me: no…
Mr K: you haven’t?
Me: well… No…
Mr K: No dentists at all?
Me: ….

I mean I don’t know why he didn’t believe it, he has to refer me to see the dentist… And when I saw him a month ago he said today would be the day…

Anyway, I should be referred in the next couple of weeks. MRI results not in yet but once they are then I should hear about my referral. Apparently it’s not for their normal dentist guy because what I need is too difficult, though I didn’t really understand why. When I asked he said ‘because you can see the bone there and the soft tissue’. Ok… Were you not expecting bone? I mean you put it in there… I think… I was napping at the time so can’t verify but it is the commonly held belief.

I wish I’d had Deepti there to explain things to me properly. Mr K said ‘you know how we were waiting for it to shrink? Well now it’s shrunk too much. We need to get teeth in asap’. Do teeth stop it shrinking further? In which case… It’s going to shrink a lot more before I get teeth because they’re going to take a while… When I asked what he meant about it shrinking too much and that I had been concerned about that he said ‘teeth will help a little bit’. And that was the end of discussion.

It was all a bit confusing (standard). So he was surprised I hadn’t seen the dentist yet, but he can’t refer me to the dentist until he’s got MRI confirmation next week. And it’s been left too long and it’s shrunk too much. But when I saw him a month ago it was too soon and he said he would refer me now. And he glossed over the ‘shrunk too much thing’. And when I said I had been worried about that and worried that I would always look odd because of it and he said ‘teeth will help a bit’.

I mean I guess I knew that teeth wouldn’t really fix it. My face has sunken a lot, my nose has pretty much collapsed in on the right hand side of my face because it’s so sunken. So is that my life now? Deepti said previously never to say that, though is this the one time I should?

I love how seeing your surgeon leaves you with more questions than you had before.

But the main point I suppose is that once they get the MRI results, they are moving on my referral, so… That’s what I wanted I guess… I guess looking ‘a bit better’ is all I could really hope for but it was hard to hear. I guess we’ll wait and find out.

Oh I should probably also say… I had Oncology clinic today too, and the chest x-ray was clear. As expected. So that’s something. I’ll let you all know once I get more news. Bit of an anticlimax, I know.

I had a little cry about it all, but I’m ok. I am. Things are going well, really. But that doesn’t mean it’s not hard to hear some things.