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…

Somehow, we have found ourselves at the end of the first part of all of this

No.
More.
Chemo.

It kind of ran up on me suddenly, with all the unknowns of whether I would be finishing my chemo or not. The ending was pretty anticlimactic I suppose. As it was chemo at home, it had been fairly easy. No pumps or 3L/day of water leading up to getting disconnected, no lugging all my things home from the hotel. In fact I spent my final night of chemo at the pub, drinking too much with my housemate and chatting to all the locals, making friends and planning post-chemo parties. Then I popped in to Ambulatory Care on the Sunday, saw Damien and Freddie, got disconnected, scheduled my PICC line dressing change for the following week and went home.

Yes, chemo is over. No, I wasn’t able to finish all the chemo I was meant to have. No, I can’t currently feel my hands or feet and they could take months to come back. No, I’m not feeling ‘better’, I’m actually feeling pretty dead, as expected. And the self-injections have been an interesting challenge with the current hand situation. Well at least the pain in my hand and the difficulty in holding the syringe takes away from any pain or fear for the needle. I’m so good about it now.

It’s a little difficult to really get excited when my mind is running straight on to this huge surgery I have coming up, plus lots more unknowns of when it’s going to be, what it’s going to be, etc.

But my goodness, once I’ve spent the next week feeling progressively worse due to the latest dose of chemo, then I can start actually getting better! My hair can start coming back properly. No more taking my temperature 6 times/day to see if I need to rush to the hospital. Yeah I’m going to have to face a lot of pain and a very long recovery with this surgery, but I won’t be regularly killing all the healthy cells in my body. I can start building up my strength, though I know that will take a long time. Years maybe. And once I know when surgery will be and about how long recovery times are, I’ll actually be able to see an end to it!

And after I’ve survived this week, I’m going to do some celebrating! Try to fit in lots of dinners and drinks with friends in the few weeks I have, maybe fit in a short weekend holiday even!

Most importantly, thank you for all the love and support you’ve all given me so far. I’m so glad I decided to write about it as I’ve been going and I’m so glad you all decided to come along with me. It certainly doesn’t stop here, there is plenty more to come on this ‘journey’. Cringe. It’s definitely not a journey, it’s just a shitty thing I’m battling through. But it’s definitely been easier with all your support. Thank you all.

And suddenly… it appears I’m on my LAST CHEMO!!!!!!!

So I went into clinic today not knowing where I was at in the whole chemo schedule. I was waiting on test results to see what would happen next.

Scenario one: If my kidneys were still struggling, I would have one more chemo (my fave chemo-at-home), starting today.

Scenario two: if my heart AND kidneys were struggling, I wouldn’t be able to have any more chemo.

Scenario three: if both were fine, I would have the 5 more planned chemos, including more weeks in the Cotton Rooms, more backpacks, more tests.

Turns out it ended up being a not expected scenario four: my kidneys all better, my heart all good, but only one more chemo starting today, as it is too much of a risk to my kidneys to let them have the rest of the Methotrexate.

Which means that I have two more days of chemo and next week to recover and I WILL BE DONE!

I can’t believe it. I really can’t. How have I found myself here? After 6 months of this. Suddenly staring at the end of the chemo.

I ran into my sarcoma friend Katrina while I was in. Thanked her in person for her amazing injection tips. Her heart is struggling and my kidneys have been. So we’re each finishing the chemo the other can’t! That’s kind of cute. Together we make a functioning person but the chemo has made its mark on us both. The good news is that both our damaged organs will recover (and already have been!) as long as we stop the last of the offending chemicals.

Chemotherapy is great. The fact that we can treat cancer is just amazing. But it will be so much better when they find an alternative treatment that isn’t so all-destroying. Especially for sarcoma – as it is so aggressive and likely to come back, we get the highest dose of all these drugs. For as long as our bodies can last…

I got home and my new housemate is cooking me dinner. So I opened a bottle of wine to contribute to the dinner. Yep, chemo and wine. What of it? This chemo is harsh on my heart, and red wine is good for the heart so… it’s medicinal. And I needed to celebrate.

HAPPY WEEKEND EVERYONE!

Phlebotomist fights

This morning I had a fight with a phlebotomist. They’re the people who take your blood. So I go down to the blood people on days when I’m starting chemo to get everything tested to see if I’m ok to start.

It was a lady I hadn’t seen before. She got everything out to take the blood and then screwed off the valve on the end of my picc line. I had come across people trying to do this before when they were new or were used to different types of lines and thought there was a stopper on the end. I know that some of the people down in the blood place were also quite new to picc lines, once I was someone’s first try. So I was like ‘oh, you leave that on’, just trying to help.

She got so angry at me, telling me it has to come off and that it’s policy and everyone takes it off. She even tried to tell me they often change the valve every time (also not true) I was like ‘ok well no one ever has before’.

She took the blood fine with it screwed off, so obviously it wasn’t a problem, I didn’t know it was possible to do it like that because clearly no one had tried before. So no bother, I just let her get on and do her thing.

At the end as she was screwing it back on she said ‘see? Now there’s no blood in the end’.

I said there’s never usually blood in the end anyway because you flush it through afterwards. She then went back to shouting at me about how she knows what she’s doing, everyone does it the same and I’ve clearly just never bothered paying attention.

I quietly told her that I’d been dealing with this for 6 months, and it’s obviously fine she did it that way, she’s shown me that it’s possible so I’m not bothered, but she can’t tell me it’s the way it’s always been done because it really never has. I mean I was almost tempted to get her to ask one of my usual girls who I could hear chatting in another bay but I didn’t want a fight.

Bit of a pointless argument really. I said thanks as I left and she ignored me entirely. So I said thanks again and said ‘am I all good to go?’ And she barked ‘yes that’s all’ at me.

Pretty much the first time in the whole 6 months I have come across someone not being lovely so I can’t complain. It was all very weird. Not sure what was bothering her so much…

Turns out she lost one of my blood samples too and I had to have it taken again later in Ambicare… I told them about her and they thought she was mad.

Complementary therapies…

I once went and saw this very expensive ‘specialist’ on recommendation from some friends as a last ditch effort to fix my shoulder pain. He was… A chiropractor and acupuncturist and… some sort of voodoo man.

I mean I’m already sceptical of chiropractors – I have been warned of them by physios before that they’re not properly medically trained and can be really dangerous. But no matter, I didn’t let him crack anything. He touched parts of me – my legs, my arms, my neck, my shoulders, and pushed on my arm and told me my pain is in my shoulders. Thanks, I did just tell you that when I walked in.

Then he said ‘think of a negative experience you’ve had lately and how did it make you feel?’
Well I was in a job at the time that I was soon leaving to move overseas, and we had a horrible, abusive boss. So I thought of that and said ‘angry’. But that wasn’t good enough and he prompted me to say ‘frustrated’. I said it was more anger than frustration but he wasn’t a fan of that so we went with frustrated.

He then went back to pushing on my hand and saying numbers counting up from 1. He stopped at 18 and pushed my arm down harder and told me to think of what happened to make me frustrated when I was 18 as my body was telling him that was the root of my pain.

I told him that was probably the least frustrated I have ever been – first year of university, having the best time and everything was super fun. I had no cares.
He then told me that until I confronted what caused my immense frustration at age 18, I would never stop having shoulder problems.

And that was it. He insisted on a slight massage which was painful and horrible and tapped this weird thing on my neck to realign it which hurt and I left. So I walked out of there confused, poorer, and in more pain than when I went in which lasted days.

I don’t know if 18 is a standard age that people felt frustrated so he thought it was an obvious one to try but it couldn’t have been further from the truth for me. Just like when horoscopes are so off your life and you wonder how people ever buy into them but they go general enough to try and catch as many people as possible. Most people will have a memory that they can pull up that’ll fit in to a mould so it’s pretty safe I guess. But not this time. No confirmation bias at play here.

Anyway I went in with an open mind. I did, I swear. The people who recommended it weren’t stupid and I was pretty desperate and willing to try anything. But it pretty quickly turned out to be ridiculous, unfortunately.

I’ve always been rational, practical, I’m not one to buy into something that you have to ‘believe in’ to make it work, or anything that isn’t backed up by science or at least good old common sense.

Buuuuuuut I have somehow ended up getting myself booked in for a Reiki session next week. We get 4 free ‘complementary therapy’ sessions, so I am taking this opportunity to road test this next ridiculous sounding thing. Reiki involves someone holding their hands above your body to relax and heal you. Are you as unconvinced as me? Well I’m going to give it a go, why not. I’ll report back!

Chemo at home is fun!

Well.

Firstly, chemo is go! My platelets were behaving. Still low but behaving. So now I have this amazing 2 days of chemo at home! Super easy, I just carry around my little ‘baby’s bottle’ as they call it, which slowly diffuses into me over 46 hours! It’s like a big strong rubber balloon that deflates and squeezes it all in. No pumps, no 3L of water, all super easy. I pop in on Sunday afternoon to get disconnected again!

The bad news… It turns out I’ve still got 2 more rounds of self-injections. And no one to do them for me anymore.

Which also means I’m still at risk of going back to A&E too (i.e. being neutropenic, getting a temperature, picking up an infection like the last two times).

BUT only 7 injections each time, so 14 in total. I can do that, right? My amazing housemate Owen said if I really can’t do it, he would give it a go! I could not love him more. But surprisingly I am feeling empowered by it. And I got to briefly catch up with my sarcoma friend Katrina on Friday which was awesome (she is super awesome, I love our chats. Catching up with her makes me happy) and she gave me some super good tips for the injections so I am excited to try them! BRING IT ON!!!!!!!!!!!!! I’VE TOTALLY GOT THIS!!!!!!!!!

I’m hoping it’s less likely that I’ll be going back to hospital with this one, as it shouldn’t knock me around as much as having it with the Cisplatin too. But I obviously will need to be avoiding public transport and public places for at least a week.

In other news it looks very much like I won’t be able to have any more Methothrexate. I am getting another Gfr test (kidney test) just to double check that my kidneys haven’t miraculously bounced back, but they probably wouldn’t have.

I have been assured they will though. If i had more Trex, it would cause irreversible damage. But for now, it will recover over time. Thank goodness they are so good on testing everything and tweaking the schedule. The Oncologists don’t seem at all worried about me not being able to finish the Trex so that’s reassuring.

I have another Echocardiogram coming up too just to check my heart is going fine with the Doxorubicin before I go into my last one.

So… I can’t believe I’m saying this, but if the Trex is in fact off, that means I finish this 2 days of chemo at home, then spend a week or so recovering (hopefully without another trip to hospital), then in 4 weeks I do it again, and then…

I

Am

Finished

Chemo.

Like… can you believe it? Then about 4 weeks after that it’ll be surgery time! That’s like… So close.

So now to just get to there as smoothly as possible! Over the course of this whole thing, I have only been in hospital 3 times (apart from occasionally having to pop in for scans of course). And I want to keep it at that, thank you. Except for adding one more for surgery of course. But let’s stay away until then! Can’t believe the end of this is actually in sight. I mean the surgery is going to be brutal and huge. But… it’s the end. Wow.

For now, here is a photo of my chemo diffusing into me, and one of it coming home on the bus with me!

A day filled with bombshells.

Today was a big day.

I met with the surgeon who was 2 hours late to see me… So that was fun.

He (and his team) dropped a couple of bombshells.

  1. I might not be able to sing after the surgery. Like… Ever. Or at least it might change my voice…
  2. I’ll have a scar under my nose.
  3. They’ll take out my whole top jaw except for my left hand side, canine to the back (I suppose that was expected).
  4. I have to make a decision whether I want a prosthetic, or bone taken from my leg…
  5. It could take up to two to three months to be able to eat properly again.

On top of that there was some good news.

  1. Swelling should go down within a couple of weeks.
  2. I’ll be in hospital for a week if I choose prosthetic, 2+ if I choose bone (I guess this is only a good news if I go with prosthetic).

The prosthetic surgery takes 3-4 hours and the bone one takes 10-12. Plus… Like… I won’t be able to walk for some time if I go bone…

Bone sounds huge!!!!! Prosthetic is sounding pretty damn good at the moment… I’ll have another meeting with him closer to discuss options. But there must be some big pros with bone because otherwise why would anyone choose it?

THEN I went to see my Oncologist to start my chemo (Doxorubicin) and my platelets were too low, so I couldn’t. We’ll try again next week.

THEN he looked at my kidney test results and my kidney function is not good and I’m risking severe kidney damage so I might not be able to continue with my last 4 weeks of Methotrexate…

Um…

I’m tired just writing that.

Thankfully Charlie was with me for all of that which I am very grateful for. I would have struggled in my own. Mainly just a lot of information to take in and… Yeah it was good to have some support and someone to talk it all over with after.

We went to the pub for lunch after. Only thing for it. I stuck to Apple juice. Looking after you, kidneys.

My Oncologist didn’t seem to think that missing out on those Methotrexate weeks was really a problem. In the grand scheme of things they’re not really that important. The main thing was getting the four cycles done and all of the horrible Cisplatin. So I’ll take his positivity onboard. Not the end of the world. I know of someone else who skipped a Methotrexate week anyway due to scheduling so… They can’t be allllll that important! It’s not like I’ve been told chemo isn’t working or my body can’t hack any of it.

I’m going home for a bath. I think I’ve earned it. I’ll make the most of my free week off at least. Brunch with friends tomorrow… Movie night tomorrow night… Yeah. It’ll be ok.