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.

Always in my thoughts, now more than ever…

Yesterday my dear friend Katie started whole brain radiation (Canada Katie – we shall refer to her as Canada Katie, as she is an entirely different person from my long time friend Katie who came to visit from Australia a couple of months ago and we don’t want to give that Katie cancer by way of me not distinguishing between the two).

Sorry, let’s just do that again.

Whole. Brain. Radiation.

Have you ever heard a more terrifying three words?

Though i suppose they are trumped by three more words…

Trying. To. Live.

And at 34, she has a lot more living to do, despite terminal breast cancer doing its best to stop her. Once you get metastatic breast cancer (i.e. spread) you never get rid of it. The intention is to survive as long as possible, but you will never be cured. I know a lot of people living with their metastatic cancer. It is possible.

From this absolutely hectic treatment, she will lose her hair once again, and suffer all the horrible side effects like nausea, fatigue, memory and cognitive issues and months of recovery. This obviously bothers her somewhat.

We had a chat a little while ago when she first found out it had spread upwards, about where the point is that you stop opting for the ridiculously quality-of-life altering treatments like this. It’s not now for her, thank goodness, and hopefully we’re a long way from that point. But I can only imagine what it must feel like to keep going through this. To be facing another round of treatment and knowing what a toll it will have on her body and her life.

Her brain is still fine but the cancer has spread to her cranium. The plan is to ‘radiate the hell’ out of her head (in her words), which will hopefully zap the skull guy, relieve the pain and pressure, then we can go back to managing the cancer in her liver.

Big sigh.

I say ‘we’ because she and I are such a team. I mean obviously this is all on her, unfortunately she is the one struggling through this, and if I could take some of it for her, I would.

Sometimes I feel like a broken record, going on and on to her about how much I love her but oh well! This girl has helped me through some hard times and celebrated with me through the good.

My dear (Canada) Katie, I just want to say a few things to you.

You have changed my life.
You have changed the way I think.
You have given me so much courage.
You have helped me know what to say at difficult times.
You don’t know how often I think WWKD (or should I say WWCKD).
I am so proud of you.
My life is so enriched by you being in it.
I am always here for you.
You are a testament to how people should live their lives.
There is a lot that people can learn from you.

To everyone else out there, she could do with all your thoughts right now so if you don’t mind shooting them all over to Canada to hover all around her while she goes through this radiation treatment over the next week, it would be much appreciated. I’m glad Clarence’s brother is over there looking after her too.

So while you’re getting ready for work or starting your weekend and have a thought that at least it’s Friday and you’ve got two days of freedom ahead of you, or that you’re exhausted from a hard work week… Just spare a thought for Canada Katie. And for that matter for anyone suffering, for whom a weekend is not an escape from much at all right now, or who would give anything for their biggest problem to be that their boss yelled at them or their colleague was being a dickhead.

That’s not to say that every day problems are not legitimate problems, if I was ranting to her about an every day issue in my life, she wouldn’t for a second not want to hear about it because it’s not as dire as her problems. She is happy to hear my good news even if her news is bad, etc. We can compartmentalise these things. We still want to hear about you even if we’re going through a bit worse at the moment. (Though while I’ll absolutely sympathise about how much your finger must hurt after shutting it in a door, please don’t tell me that your nail falling off is the worst thing that you could think of, and how will you possibly survive if it doesn’t grow back looking normal… Even if it is the finger your engagement ring goes on… I’m sure you’ll find a way.)

So please spare a thought for Canada Katie. Love you girl, I’m here for you all the way.

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.

The kindness of strangers

I want to take you back to the Friday before I went in to surgery. I had been at work that day and as the day was drawing to a close, my friend said ‘so… Pub…?’. It was just us three close friends left in the office and it turned out we all had a free night so we finished what we were doing and headed to the local for a few drinks. It was my last day at work for a while and the last time I would see my two friends for some time. We drank wine, we laughed, we forgot everything serious and we were just three friends having some drinks after work on a Friday. It was perfect.

After a few drinks it was time to head home and we had our hugs and goodbyes and I told them I would see them again on the other side. We all went off our own separate ways.

I took my way down to the tube station, a spring in my step. I was tired so I sat while I waited for the train to turn up. A lady sat down next to me. I was playing on my phone like a good millenial does. And my useless neuropathy hands did their usual thing of throwing my phone on the ground. The lady next to me was kind enough to pick it up for me. ‘Sorry’ I said ‘my chemo hands are useless’.

She asked me more about my chemo and cancer and I said that I was going into surgery on the Monday to cut out half my face and rebuild it. I said it was scary but I was keen to be moving forward.

She then reached into her bag and pulled out a little wooden cross. She said it was given to her by an Israeli. She said it had brought her luck over the last few years and now it was time to pass it on to someone else who needed it: me.

I asked her if she was sure and thanked her profusely. And at that moment my train turned up and I had to run. I told her how much it meant to me and thanked her once again as I ran off. I regret my brevity but sometimes moments are fleeting.

I am not religious. In fact I am quite strongly against religion. But the thoughtfulness behind this action absolutely overwhelmed me. I cherish this little cross. And it came with me to hospital and sat on my table next to me for those two weeks. It now sits at my bedside.

These moments of the kindness of strangers are just amazing. I will keep it close by, I think for the next 5 years. I.e. Until I find out the cancer is gone. Then I shall let it choose its next owner and pass on the luck it will have brought me.

Sometimes I feel like I’m in a movie. Life is constantly proving to me how crazy and remarkable it can be.

So no, I’m not religious, spiritual or superstitious, but I believe in people. People never cease to amaze me or make me feel special.

Little adventures

On day 13 of my hospital stay, Kat the Physio said I was allowed to go for a little adventure, so I actually got to leave the ward and we went up to Level 16 and looked out at the view. UCLH has a tall tower, and is situated pretty in the middle of London, it therefore has a pretty decent view! The big window looking out from the corridor as you leave the lift faces West.

I wore my hospital sock/slippers, and we carried box of tissues, and off I wobbled.

I also had a pretty decent view from my room for that matter. It was nice, especially when it snowed. In the afternoon I would sit in the chair by the window and watch North London finish its day.

We went up to level 16 quite a few times. There was something calming about looking out over the tops of the buildings, watching the buses traverse the streets, watching the world go by. One day as we were getting into the lift to head back down, I ran into a Physio I had seen in ICU briefly. ‘Jen!’ She exclaimed! It took me a minute to place her, but I got there. We had a quick catch up, it was nice to run into her.

One day we even went out the bottom of the building and stood in the sun. Its rays soaked through me and recharged my batteries a little.

Once my Trachy was out and I got the OK to have clear liquids, we started making trips down to the cafe for peppermint tea, and then the next day I was allowed proper tea. That first cup of tea was heavenly. I had been desperate for it. Most of it ended up down my front (I couldn’t close my mouth, so keeping liquid in there was an interesting challenge) but being able to sit in the café and have a cup of tea made me feel a bit human again.

Mum and Dad visited every day. This was amazing, it made me so happy. I looked forward to their visits and was sad when they had to leave. Ma would read me a couple of chapters of a book each time. It brought me no end of warmth and comfort. Da would pop out and get me things like wet wipes and Ribena once I could start drinking.

My days consisted of a few highlights – visit from the doctors, visit from Kat the Physio, visit from my parents. Occasionally I got other visits too.

Near the end of my stay in the ward, I had a visit from the Sister I had met during my first time in ICU. It was so nice to see her. Once again, the people I am meeting along the way are amazing. These poor people who work in ICU – they deal with people just coming out of anaesthetic, and people in their first few days after admission… basically they see everyone at their worst. And a lot of them saw me at my worst. And the amount of love and support I got from a lot of them regardless, was amazing. But it must get disheartening to never see the stage when people get better! You just get them to a stable point and then ship them off to the ward. Anyway, it made my day that Erika came to visit, it was nice to see her again, have a catch up and get a hug.

On my final day, as I was packing up, who popped in to my room but my bestie Rebecca! I was sad it was looking like I wouldn’t see her again, so I was ecstatic when I saw her and gave her a huge hug. We had a bit of a catch up and a chat before she had to run back to work and I had to talk to a nurse about discharge details.

I can’t quite explain how much I like and appreciate these people. I know I only met them for a short period of time, but some nurses (and doctors, nursing assistants, etc.) I felt like I really connected with, and when I was feeling so low, that meant everything. It’s something that’s hard to explain if you’ve never been in this situation. But these nurses were my lifeline. And the fact that they came to visit me after I had left their care will stay with me forever.

View from T16:

View from my room:

Out in the sun (note mum carrying the arsenal for dribble and blood catching. Also note trachy is out):

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.

Self-injections, you don’t scare me no more!

Guess what?

I did my injection this morning LIKE AN ABSOLUTE BOSS!!!

Katrina, if you are reading this, you are my hero, your tips were an absolute lifesaver!!!

So when they told me how to do my injections initially, they just sort of demonstrated it with the needle, without actually doing it. They told me to hold it away from my body and plunge it in like a dart. This gave me so much anxiety – what if I got the angle wrong? What if I stabbed it accidentally into my finger which was holding the skin pinched? And getting the courage to plunge a needle viciously into your stomach is bloody scary. So I did 18 of them at the beginning, but after that, I couldn’t take it any more and had a massive freak out about it. Thankfully I had someone to step in and do it for me. But even then I couldn’t look at the needle going in… I’m not a fan.

Fast forward to now, and it’s up to me to do it myself. Which you know, I’m ok with because I am super independent and don’t like to rely on anyone. But there was still that absolute fear. I didn’t know how I would overcome that. The thought of poising it over my skin, getting ready to plunge it in… My heart is racing just thinking about it.

Enter my fellow sarcoma friend Katrina, who I was so lucky to run into when I was in Ambulatory Care last week, and who I happened to whine about the injections to. She’s a smart girl. None of this plunging stuff, just pinch your skin with one hand, place the needle above your skin where you want it to go in, distract yourself – look at the tv, breathe out, calmly push the needle in, push the liquid down, remove.

This technique is revolutionary. I was a little scared at first, but without looking at the needle, and without having to plunge it in from great height, it made ALL THE DIFFERENCE.

Sorry all for a potentially boring post about self-injection techniques. Maybe this information will help someone else out one day!

But I am feeling EMPOWERED. The sun is shining, it looks beautiful outside my window. My toe hurts because I managed to smash it on a table shortly after doing my injection. But hey, ONE OUT OF FOURTEEN DONE! I’ve got this!