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.

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.

A note to you all

To all my sarcoma friends who have found their way here, it seriously means so much that you’re reading. You’re all fantastic and inspiring and even if the most we’ve done is smiled and said hi as we’ve passed in the corridor, you’re my family and we’re in this together! I think the world of you all. And even just a smile between us can say so much.

Not even just my sarcoma people, to anyone who I’ve come across in ambi-care or The Cotton Rooms, it’s always nice to see you around. We may be getting different treatments for different things, but we’re all turning up to the same place and sharing an experience.

I’ll even extend it. To anyone else here who has or has had osteosarcoma… Even if we’ve never met. We’re in a club. Not one we would have chosen, but since we’ve found ourselves in it, at least we’re all in it together. That’s special. That means something.

Should I extend it further? Anyone here who has had cancer at all. We might not be able to bond over treatment, we might have had entirely different experiences. But we’re also in a club. A far less exclusive club than the sarcoma one these days, but I’m sure you’ve got your own more exclusive clubs too.

And then of course I can’t fail to mention the support crew. I.e. Everyone else. If you can, please stay only as honorary members to these clubs. But know if you ever need to join one, we’re here for you. I will try my very best to support you all as you have supported me.

Thank you for being here, thank you for still reading, it really means the world to me.

When PET scans turn into surprise MRIs…

I’ve had PET Scans before, all good. They’re not a problem except that it’s always freezing. I had one today, so I went in and they injected me with the radioactive substance and I had to sit there for an hour without using my phone or doing anything really. I listened to an audio book.

After the time had passed, they took me in to the machine and I lay down. Then they started clipping me in and weighing me down by putting all these heavy cameras on my chest which I thought was weird, I’d never had that before. Then they wedged foam around my head so I couldn’t move it and clamped the cage over my face and I realised for some reason they were putting me back in the MRI machine.

I panicked. I couldn’t move, I couldn’t breathe, I started burning up. Why did no one tell me this PET Scan was actually an MRI? I immediately started trying to break out but I was weighed down. Instead of letting me out, he told me that it was all fine because he had a little mirror he would strap on my head so i could see out through a tiny rectangle. He then held that in front of my face and i couldn’t move or breathe or see anymore either.

I was hyperventilating, tears streaming down my face, trying to get out, they did take the cage off my face but they wouldn’t let me up. Instead they put a straw in my water and told me to drink. I choked on it.

Eventually they let me out. ‘I didn’t know it was going to be an MRI’, I told them. PET Scans had never been in an MRI machine before, why was it suddenly now? ‘Oh it’s a PET-MR’ they said like that should mean something to me.

Then I stressed out even more because this was a scan I needed to get done and I didn’t know how I was going to do it. But as it turns out, I didn’t need the MR part of the scan. We went upstairs and they put me on the PET-CT machine that I had used the previous two times. Apparently that’s fine.

It took me a good 10 minutes to calm down after the MRI scare. And any time I thought about it during the day I had to try and hold back tears.

I know it sounds silly. I had a panic attack just from being near an MRI machine. But it really terrified me. I couldn’t take it. According to the guy, it happens to one in five people. That’s more than I would have expected. He then told me he had a moment in the machine once and it’s tight but nothing to worry about. Great, thanks. This machine was even worse too because the far end was up against a wall. Not that it makes any difference once you’re in there, but knowing you’re going head first into a pringles container is even more scary than going into a toilet roll.

Yes, I think we can confirm I have a problem with MRIs.

Reiki road test

Ok, as promised, it is time to report back on my experience with…

REIKI!!!

Reiki was basically exactly what I was expecting. But I promise I really did go with an open mind.

I went in and was asked to lie down on the bed after a brief introduction. There was some lavender oil diffusing in the room, which was nice, and the Reiki man put some calming music on. He told me to close my eyes, which I did. He started by placing a hand on my shoulder and my elbow and held them there for a bit. Then he moved to my elbow and knee. Then knee and foot, then both feet. Yes, you guessed it, he was moving around me, anticlockwise (which stressed me out a bit, surely you’d start clockwise!), putting his hand on various parts of me, pausing and moving on…

When he got back up around to my head he put a hand on my forehead which was a bit weird. Something about the forehead feels far too intimate for a random. He then went around me again. And again. Occasionally would touch my elbow with one hand then hover his other hand over my hands. Or over my knees…

The one good thing about all this is that it was freezing, and his hands were very warm. He would also occasionally do some weird sweeping motions off to the side, kind of like he was trying to conjure something with an abracadabra routine. Yes, I was peaking when I thought he wasn’t watching. Though he had said I could open my eyes at any point, and also to tell him to stop if it became too much… not sure what was meant to become too much.

Half an hour later it was over…

Ok…

‘Woah, that would have been weird, hey?’ He said to me when I opened my eyes. ‘First time of Reiki, must have been wondering what this crazy person was doing.’ I mean… you said the ‘c’ word, mate, not me. He kept going on about how it was weird and didn’t seem to do anything… I think he was trying to put words in my mouth – maybe he was used to people saying these sorts of things after? I wasn’t sure but it seemed odd.

But yeah, it was ridiculous. Look, having half an hour to lie down and relax without sleeping, and just try to meditate a bit was nice I guess, so yeah you might feel more relaxed after because of that, but that’s got nothing to do with the Reiki. Though it is easier to have a clear mind if you have something to focus on, like if a strange man is touching your shoulder. Personally I just prefer to use the Headspace app…

In the post-session chat, he said ‘the only thing to note is that you might find yourself being more emotional today. So if you do  get emotional, just try to remember it’s to be expected.’ Emotional? Why? Are people not used to being alone with their thoughts and they bring up some emotions? Weird.

I really don’t get it. There’s not even anything to hook people with. There’s no confirmation bias like there is with Astrology (or the witch doctor I wrote about last week). I honestly cannot understand how anyone can buy into this…

I still have three more sessions and not sure what to do with them. Maybe relaxation? I can see the sense in that at least, and it doesn’t pretend to be anything it’s not.

But I am glad I tried it. It was free. No regrets, everything once. And I got to tell you all about it!

MRI Sundays

So it turns out I now have a problem with MRIs.

I guess I’m feeling a bit fragile at the moment. A bit emotionally unstable. In a big way because I’ve just found out I’ve got to cancel all plans for the next year or so. But also the fact that I can’t use my hands is getting to me. I struggle to tie shoelaces, I can no longer wear anything with buttons, even jeans are out. I can’t hold a pen or write… And there are a few other things that are all adding to the stress. Yeah I’ve got a lot on my plate to deal with, emotionally. And still recovering from my last chemo too.

Anyway. I had to go in for an MRI today. On a Sunday. Poor imaging people working on a Sunday. I usually quite enjoy MRIs. But this time I almost freaked out immediately when they first put me in. My heart started racing, I felt really hot, I felt like I was boxed in. I honestly felt like I had to break out. Hey claustrophobia, that’s what you feel like! I’ve almost felt it once before back in high school when we went caving and did one particular cave that was a tight passage going down to the cave and back up. B45 I think was its name. So unassuming. I didn’t have a problem then but I remember being on the cusp of thinking it could go either way.

I almost pushed the panic button early on, I really thought I couldn’t make it, but I managed to calm myself down when the MRI started. I never know whether it’s better to keep your eyes closed or look out through the little periscope peep hole. But I did some deep breathing and tried to stay calm. It worked for a while but then I started to stress out again. The MRI operator asked over the speaker if I was ok. I said I was stressing out a bit and they said they had noticed a bit of movement on the last scan.

They came in and pulled me back out for a bit. I had to stay in the brace and hold still but at least I could breathe for a sec. Deep breath in, deep breath out. Still feeling boxed in, wasn’t sure how I would deal with the rest of it. Still 15mins left.

One of the imaging girls offered to hold my hand for the last bit. What an absolutely beautiful person. I thought it seemed as bit silly to need it but I took her up on her offer. She said she had done it before, it wasn’t weird or abnormal. So we held hands and I went back in. Knowing the outside world was just there made a huge difference, it felt like I wasn’t actually that far away.

The other added, though unintended, positive of this hand holding is that I was concentrating so hard in not squeezing the hell out of her hand that it helped to distract me from the tiny tube I was confined in. One of the other bonuses of this peripheral neuropathy is that my hands have a mind of their own at the moment. They move around on their own and clench themselves of their own accord. So they were cramping up and probably clenching super hard but I couldn’t feel how hard they were holding, so I was concentrating pretty hard on that.

It also helped that the other girl who was doing the scanning from the other room gave me updates on how much longer I had to go. They also came in 5 minutes from the end to inject me with some dye so that was a nice little break too. Not to mention they turned the radio on and between the thumps of the scans, I heard ‘I’m Only Sleeping’ by The Beatles serenading me.

I got through it fine, but I don’t know if I would have if the angel of an imager hadn’t come to my rescue. And they were both so lovely and patient. They said to try and bring someone along with me next time just in case. I don’t know if it was just this time or if I’ve developed a problem but it might be a good idea to take a helping hand along next time – anyone feel like having their hand squeezed off for a while?