A moment for a thought for Amy and anyone else with a terminal diagnosis…

On April 14, 2018April 14, 2018 By Jen EveIn Friends and Family, People5 Comments

I haven’t really had to deal with death much, aside from elderly grandparents. A pseudo friend died of Leukaemia when I was 17. Another friend from school died a few years after. That’s about it.

Since I’ve been diagnosed with cancer I’ve managed to get into a huge community on Twitter of other people who are going through the same or similar things. Well, similar in the sense that they’re also dealing with or have dealt with cancer. There is a marvellous group of incredible people who I connect with almost on a daily basis. They are so supportive and understanding and have become people I would describe as friends.

One of my favourites is Amy Mattingly, and unfortunately today is her memorial service.

Even in her last couple of weeks she was still checking in with me to see how I was doing. She was interested in knowing details of my recovery and how the swelling was progressing. In the week she found out her SIRT couldn’t go ahead (an experimental treatment that wasn’t funded by the NHS, so she crowd funded and we all pitched in to help), she was telling me how much motivation I had been giving her that week (me giving this amazing human motivation? What a compliment). She was happy for me getting to the pub, she was happy that I had no treatment left, she said I deserved a big holiday. All this, only weeks before she left us.

I like to think she’s on a big holiday now. But I do know the truth of it is that she’s dead. Gone forever. Cancer really kills. And she’s known it was coming for some time. Her final tweet was a great, but true and humbling:

‘Advanced cancer is like SkiFree. No matter which route you take down the mountain, the big robot guy eats you in the end.’

I know a few people with terminal cancer. There is no hope for them of beating their cancer. No matter how positive they are, they will die too, and it could happen at any time. Cancer doesn’t care if you’re positive or ‘strong’ or how hard you ‘fight’. I don’t know how you come to terms with knowing your demise is imminent. But I know you do, somehow. And these girls do SO gallantly that they give me strength to get through anything I have to.

It also gets you thinking about the question of whether it’s better to know about your death in advance or for it to happen suddenly? Either way, it shouldn’t happen in your 30s!

To all the people I know who despite their good attitude, positivity and staunch willingness to live as long as possible, will in fact the die of this horrible fate, If I had one wish in the whole world it would be to save you and restore you all to your cancer free state.

As I can’t quite make this happen, I vow to love and appreciate you while you’re here, to ask you how you’re going, to check in, to always care. And once the inevitable time comes that you are gone, I will remember you forever, my thoughts and memories of you will stay with me and I will live fully in your honour. Please know that connecting with you has changed my life.

To Amy, I will take your spirit and outlook and colour with me everywhere I go. You will be a beacon of light, always in me. You had a profound effect on me, you mean a lot. I’ve been thinking a lot about the meaning of life and I have come up with this. It is our ability to choose how we react to bad situations. And you’ve done so gallantly. This is our humanity. We can have everything taken away from us except our ability to choose how to react to it. And it is our legacy. The things we did in our lives that affected people, the people we knew, the people we loved. And you have reached so many people and you will be with us forever. It doesn’t make it easier, but I know you have had an impact on more people than most people do even if they make it to 100. Cancer sucks more than anything but we’ll keep trying to get to the root of it and kill it all. I can only thank you for being so incredible, so important. For being Amy.

A few of the amazing nurses on my first trip to ICU

On March 20, 2018March 20, 2018 By Jen EveIn In the ward, People, surgery5 Comments

The first thing was to work out a way to communicate with people. How else would I make friends?

The first notebook Dad got for me said on the front ‘Be your own kind of beautiful’. Seemed fitting, since I would definitely be challenging the normal ideas of ‘beautiful’ for some time (someone did just tell me I was totally rocking the look hehe – the ol swollen face look).

The scribbles start to make sense after a few pages, as the initial anaesthesia wore off. I was never far from my felt-tip pens or notebook. In fact everything was covered in pen – my arms, my sheets, my gown, at one point I even managed to draw on my Physio.

After the first couple of days of confusion, things got a bit clearer. I was helped through by some amazing people as I was recovering in the ICU.

Anna was the Portuguese nurse from Porto. I promised her that once I was better I would prioritise visiting her home town. She said to drink their special ‘Porto wine’, I of course agreed. I realised later we were talking about Port. Yes please, I will drink it all.

Then Maria took over. She was lovely. She had a brilliant knack of explaining things to me really well as she was doing them, putting me at ease and making sure I was informed about everything that was going on. This appeals to me so much. Looking through my conversation book from Maria’s shift, it appears I finally managed to work out the reason as to why my neck was sore – something that had been plaguing me – of course, they made quite a big cut in my neck to connect the blood supply, I’d known his all along but for some reason this was when my re-realisaion epiphany happened. I also wrote ‘Elephant’ and underlined it, so I’m sure that was important. The lovely Maria also came and popped in at another time, a few shifts later, she crouched by my bed and held my hand. She was great.

Then there was the amazing Rebecca, with a pixie haircut that gave me massive hair inspo, beautiful straight teeth, a great smile and very pretty eyes. It was Thursday, day 3 post surgery. My memory of my day with her is surrounded by sunshine. We put the radio on in the morning and had it going all day, managed to find a station that was just playing an awesome mix of retro songs. We boogied through the day and she would pop over to come have a chat/write with me. She also knew Sydney, which was fun. When she went on her break, she had a tea on my behalf because we drink it the same way. I got up and danced to the radio as my bed was made. Kat the Physio came by and decided it was time to go walking! So I got all my lines and drains bundled up and with Kat on one side and Rebecca on the other, Clarence under one arm and my parents as cheer squad/photographers, my support crew and I went thundering down the corridor. I, of course, was certain I was fine and was trying to do everything myself and quickly. It became a common theme of my friendship with Kat that she would spend a lot of time telling me to slow down, calm down. I appreciated that. I need these sorts of reminders when I’m not well. Later in the afternoon after everyone had left, Rebecca and I went for another walk. We danced down the corridor, and she took me on a short tour of the floor outside of our ward. We recommended each other our favourite Ramen places (Kanada-ya: mine, Koya: hers). I told her my legs were randomly itchy and she said it’s a side effect of the morphine and that I had a drug on my file that would counteract that! Brilliant! I was sad when her shift ended, I’d had such a fun day.

I was lucky however, as it wasn’t long until I met Ronnie, who took over from Rebecca, and had actually been there that first night with me in the ICU as I was coming out of anaesthetic. I didn’t really remember of course but I wanted to know all about it. Well, I was distressed and thought I was being choked (start the 11 day obsession with getting rid of the thing hat had been choking me – my tracheostomy). Apparently I was so stressed they got someone in to have a look if there was something wrong with it. Nope nothing wrong, but my body did think this new invader was trying to kill it. Anyway, we chatted and learnt about each other as she pottered around doing her work tasks (entertaining me was obviously the number 1 task). I wrote out my ‘list of demands’ that I wanted her to fill for me before bed (cheeky). In the morning, she cleaned my eye for me and put ointment and drops in it, and for the first time in 3 days we saw my left eye!

During this whole time I was in a shared ward, though our bays were big. The room felt so different with each person who was looking after me in that time that in my mind, each time the shift changed, I also changed location. This of course didn’t happen, but it could have! Someone could have been trying really hard to mess with me!

At some point someone described me in this time as a ‘big personality’. Just goes to show that you can be dopey and not able to speak and still get yourself across.

A note to you all

On February 27, 2018 By Jen EveIn People, Thoughts2 Comments

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.

‘Alternatives’

On January 4, 2018January 4, 2018 By Jen EveIn People10 Comments

So today we had a handyman around to fix the lock on our bathroom door and one of our light switches.

They were popping out to pick up some things and asked if I was going to be home, and I said ‘yeah, I’m currently recovering from chemotherapy, so I ain’t really going anywhere’ and they were really lovely, supportive, wanted to chat a bit, ask questions, etc.

They went and got their part and came back, and as they were leaving they had a bit more of a chat to me about my cancer and chemo. Then one of them started talking about alternative cures. Like about how Hemp cures cancer. And how ovarian cancer is now cured thanks to immunotherapy.

I mean immunotherapy is amazing. It’s being used in trials to see if we can make the immune system actually treat the cancer itself, instead of all this chemo. Medicine amazes me.

But… it hasn’t cured anything yet. And I am all for trials! But I think they should probably be reserved for people who have decided not to have chemotherapy or can’t, or whatever.

Anyway, I smiled and said it was all very interesting, and he swore to me that he would contact me and give me all the information he has, and find out if Hemp would cure mine, and which one I would need. Thanks…

You do come across this – people offering their great alternatives to chemo, or recommending some oncologist they know (who obviously has nothing to do with my very rare, specific type of cancer – I’m being treated in possibly the best place in the world for this type of cancer). They essentially mean well, but wow. The one that makes me the most angry is ‘just eat this plant every day, it is more effective than chemotherapy’ – I’ve only seen this online, no one I know has tried this one on me! But who buys into this!! And where do people get off on deceiving people out of their lives? What do they gain from it?

Did anyone hear about Belle Gibson? The Australian who swore she cured multiple cancers through her special diet, which she was selling in book form and via an app. Scarily, so many people were jumping on the bandwagon! Where is your common sense and reasoning ability people?! Turns out she made it all up. Surprise surprise. Hope she didn’t kill anyone who should have got treatment:

https://www.theguardian.com/australia-news/2017/sep/28/belle-gibson-disgraced-wellness-blogger-fined-410000

It’s a scary world out there. And chemotherapy is scary too. And very unpleasant. There are some good reasons for some people to not have it, and of course some people can’t. That’s where alternatives like immunotherapy trials come in. And that’s brilliant. But no, turmeric lattes will not cure your cancer – they’re all the rage now, right? Neither will coconut oil. It is yummy to cook with though!