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.

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.

Surgeon meeting take 2

So I met with the surgeon today. We’re aiming for surgery on the 5th of March. That’s soon. When will I find out if that’s going ahead? Hopefully Tuesday. 5 days before I would be going to hospital. Plenty of time for my parents to book tickets to come over, right?

Found out I’ll be losing some of my right nostril in the surgery. He said he’ll try to keep it minimal. So that’s wonderful… Permanent damage. Hopefully only a small bit (still not good), but it’s possible I’ll wake up with a huge chunk of my nose gone. And that’s not like… Fixable.

Also losing some of my nose on the inside, all the way up to my eye socket. He’ll build that back though.

Found out there’s 50% chance of him having to stop the surgery half way through and leave me in hospital for 4 weeks with a big hole in my face before doing the second half. (Though I don’t know if that stat is correct because he was angry at us for asking questions so was stretching the truth on a few things to try and scare me)

Found out I’ll need a feeding tube for quite a while. Weeks? Months? And I’ll probably need a tracheostomy during surgery. 70% likely. No talking for 3-5 days post surgery. I’m sure that will be bliss for everyone around me at least!

Also it’s likely that the bone for surgery will come from my shoulder. Which I think is better than leg. Oh yeah and if you were wondering, it wasn’t my choice to make whether it’s bone or prosthetic. Prosthetic is only if you can’t bone for some reason.

Here I was going into this meeting thinking there couldn’t be much more for them to drop on me. Ha. My mistake.

I did also find out that while a year to wait for teeth is standard, it’s possible to start looking at it after 6 months depending on recovery. So there’s some hope.

A thousand thanks to my girl Shiri for coming with me to the appointments today. And for bringing me a sandwich! Oh the notes we wrote. Well mainly her. Because I can’t write, remember?

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!