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.

Friday thoughts…

‘Imagining what might happen if one’s circumstances were different was the only sure route to madness’
– Amor Towles, A Gentleman in Moscow

I read this today and it really put into words something that I had been thinking about for some time.

Where do we get thinking ‘what if this never happened’? I know people can get stuck on this idea, playing over and over in their heads all the things that could have happened if they…
hadn’t turned down that job…
hadn’t broken up with that partner…
hadn’t moved away from friends and family…
were able to have kids..
hadn’t given that child up for adoption…
hadn’t had that accident…
(I’m just making some things up here)
and most poignantly for me at the moment, hadn’t got cancer…

I have never once thought this way, ‘what if things were better’. The closest I get is to say ‘what if I wasn’t lucky enough to be in the UK when I got cancer, and in a job that is so supportive’, which only makes me feel grateful. Sure bad things happen in life but wondering ‘what if they hadn’t happened’ does nothing other than torture yourself.

I also don’t ever think ‘why did this happen to me’ or ‘I don’t think deserve this’. A lot of people don’t ‘deserve’ things that happen to be them – I believe it was the philosopher Billy Joel who said ‘only the good die young’. Life isn’t about what you do or don’t deserve. It is about what you make of it.

Am i glad I got cancer? Hell no. But would I trade the people I’ve met, the friends I’ve made, the experiences I’ve had or the love and support I’ve been shown? Not for anything. Nor would I trade the opportunities I’ve had to offer support to others, I hope I can continue to do this.

I don’t feel like I’ve got a hard bargain. I feel lucky and grateful every day (though I also almost feel like rolling my eyes at myself when reading that back). Things in life happen. Things always happen and it’s up to us to decide how we deal with those things. That’s not to say I’m always happy with everything that happens, getting cancer is shit in every way, and sometimes I do feel a bit sorry for myself. But I never wonder where I would be if it hadn’t happened, I just try to make the most of whatever I’ve ended up with.

I know people who are dying and who know they don’t have long to live and sure they’re devastated about it and don’t want it to happen. But they are some of the most thoughtful people I know, often thinking about others, and they make the most of whatever good moments they can find. One of my friends, with a death sentence at 33, has finished three university degrees, and is spending the last of her time giving talks and spreading awareness for young adult cancer. She is a testament to what you can do with what you’ve got, and she’s one of the most brilliant people I’ve had the pleasure of meeting.

This isn’t to say that you can’t feel sorry for yourself unless you’re dying or have something serious like cancer.

To quote ‘A Man’s Search for Meaning’ by Viktor Frankl, a psychologist who survived Auschwitz:
To draw an analogy: a man’s suffering is similar to the behaviour of gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.

Sorry to jump to discussing gas chambers on a Friday… (you can’t take me anywhere!) but the point is a good one. Any struggles are legitimate, no matter how big or small they are perceived in relation to other problems. But try not to waste energy in wondering what would happen if you didn’t have them, dwelling on things that are not reality. It only causes problems, not solve them. Get out there and live whatever you’ve got to live for however long you’ve got to live it.

Happy Friday everyone! Enjoy that weekend stretched out ahead of you in whatever way you can!

Physio

You might remember that in hospital I had the most awesome physio, Kat. She was the perfect blend of sympathetic and no-nonsense, which must be so important when you’re dealing with people coming out of a big, potentially life-changing surgery. She’s not going to let you lie around and feel sorry for yourself, but she’s not going to push you further than you can mentally handle, and she carries herself compassionately. She was my best friend, we felt like a team. I’m sure I frustrated her to no end at times, always going too fast, trying to do everything myself, never relaxing, but she would patiently tell me to slow down and always with a smile. I’ve visited her a couple of times since I’ve been out and just seeing her makes me feel so happy. Kat, if you’re reading this, you’re the best and I should come say hi again soon!

Anyway.

Since I’ve left I’ve been back for physio, but as an outpatient (‘why does your face need physio?’ Asked my boss. ‘Not my face, my shoulder!’ Having a shoulder, leg and neck injury for a face surgery will never lose its novelty). So outpatient physio means no more Kat, but a brand new person! Gasp! Luckily ‘new person’ is otherwise known as ‘Francesca’ and she is also amazing.

I don’t know how these people do it, but from the second I met her I felt like I was seeing an old friend. She is so warm and approachable and… Well… Fun! When I go to an appointment, she not only cares about how my shoulder is, she cares about how I am. She wants to know how I’ve been going and we chat and catch up on the last couple of weeks. I’ve said it before and I’ll say it again, the professionals I have met along the way over the last year who make me feel like this are SO important. I’ve never felt like going to three appointments is a chore, I’ve never felt like I’m ‘ill’, more just catching up with friends.

She also doesn’t inundate me with exercises. I’m sure she could give me thousands, and I’ve had physios before who have, but it’s just not practical. As it is, I sometimes forget a couple (oops…) but I do try to be good, I promise. She also makes me printouts so I have no excuses to forget my exercises!

It’s a funny feeling as you get better and thus see these people less. Of course it’s a good thing, but it’s sad to eventually have to say goodbye to these incredible people who helped you through the hardest times of your life. Well all, if it counts for anything, I’ll never forget any of you.

Wow, has it really been a month?

So I’ve been trying to start going back to work. It’s harder than I thought it would be. That’s why I’ve disappeared from here for a bit, just concentrating on getting through the days. I didn’t realise it had been quite so long since my last post.

The first point to make is how lucky I am that my work is being so supportive. It sounds like a cliche but they feel like family, and they’ve been there for me when I’ve needed them. I could write a novel about how grateful I am.

People tried to prepare me for the struggles I would meet in trying to get back into life and work and I figured that wouldn’t apply to me. I mean hey, I was even working when I could during my months of chemo. Why would this be any worse? Oh wow, it’s worse.

Physically, it’s hard. I get tired (really tired) and some days I can’t even get out of bed, let alone out of the house, let alone do a day of work. But I managed four days last week, so I’m pretty happy with that. I don’t know why I’m so exhausted, I was bad from chemo but have been so much worse since surgery. It took me weeks post surgery to be able to get through the day without needing a nap. I’m better now, but definitely need to build back up to where I was a year ago.

At the moment it seems to go one of two ways – either I’m fine and can go to work and last quite well and be perky and useful, maybe even manage going out for dinner after work, or I can’t move or use my brain at all and even just talking to someone takes it out of me. There seems to be nothing in the middle. I’m learning what I’m capable of and what is pushing myself too hard. It’s so funny starting from scratch and having no idea what you can and can’t do. Everything I once knew has changed.

The other difficult thing is mentally coming back to work. I mean it’s hard to go back to work after a week off. Try being off for months after having had every part of you attacked. I’ve used my brain reading and writing over the past year but getting my mind back into work is hard. Chemo brain is a thing, and they say it can take a year to get anaesthetic out of your system. Having said that, I still remember everything that happened when I was there and have caught up on emails of things that happened in between.

But more than that, they have survived without me all this time, it’s been hard trying to work out how I fit back into it all. Am I still needed? And it feels so weird just trying to slot back into my old life as if nothing happened. I’ve been feeling pretty down over the last few weeks, just feeling so overwhelmed by it all and not knowing where I fit into my old life, or where it fits into me. But after the first couple of weeks of just focussing 100% on work and not being able to do anything else, I have started doing some socialising too, which has made all the difference. A Saturday night spent at the local pub with my housemates, a drink after work with colleagues. Getting back to work full time is my main priority, but I’ve realised I can’t do it at the expense of everything else, so now I’m trying to balance it with occasionally seeing friends. I even went to a friend’s gig the other night, and I just re-joined the gym and did my first (easy) workout in almost a year.

It will get easier, it will get better. But, as warned, this part is difficult. People say to me ‘wow! Everything’s finished, you’re all better now!’ I appreciate the thought and the sentiment, but that’s so far from the truth. But I’m doing well. I’m starting to feel a lot stronger. I’m struggling to get good sleep thanks to not being able to breathe through my nose, but hopefully the few hours I manage are enough to keep me going.

Everyone who checks in on me or asks when we can catch up gives me more strength, and every day I manage to feel more normal gets me one step closer to living my life properly again.

The future is looking bright

‘Jen, you’re my last patient so you’re going to have to wait a bit.’ Said Deepti as she took in another patient.

I smiled. That’s fine, obviously. To be honest I was just really happy to know it was her I would be seeing.

‘Don’t worry, it’s all good’ she said with a thumbs up.

I breathed out heavily with a smile. I was waiting for the results of my first MRI post surgery. I know the surgeons were optimistic they’d got it all out but my meeting with my Oncologist on Monday had put a bit of doubt in my mind.

Did this comment mean the results were good? I would have to wait a bit longer to know for sure but I took it to mean all was well.

I wasn’t really *worrying*, I generally don’t worry until there’s actually something to worry about. But hearing these words, I did breathe a sigh of relief. A sigh of relief that felt like I had been holding my breath for days.

Some of my fellow cancer friends speak of ‘scanxiety’. They worry before the scan, during the scan, and then spend the time waiting for results, worrying that the worst will eventuate. I kinda get it… You want to be realistic. There’s a chance things are bad, prepare yourself for it. But I don’t think like this, in terms of worry. Sure, I have a quick acknowledge that there’s no guarantee the results will be good, but I wait until I know they’re not to start worrying about it. And even then my worry manifests as ‘ok well… What do I do now?’

No crippling panic, just a need to know the game plan.

But this time there was no need for a game plan. The news was good. The scan results had come back clear. This was no shock to Deepti, who had been confident all along. And I was confident in her. In my surgeons. That’s not to say there aren’t instances when it’s not entirely successful, I’m sure – they’re incredible, but some things just can’t be done. But they had thought at the time that they got the whole tumour out, so that’s what I was going on.

And indeed it’s looking like they have!

I’ve said it before, but Deepti is a truly amazing human. The amount of excitement and happiness and damnit, love! I feel when I see her is a testament to how great she is and how important her role is in the team. Her manner, her honesty, the way she truly cares… I’m already looking forward to seeing her again in 3 months.

Hell, 3 months!!! That’s just insanity!! It wasn’t long ago I was seeing them every day, and now I’m on my own for 3 months!! It’s pretty exciting really.

I also dropped in today to see Kat the physio, absolutely always a pleasure to see her. I unintentionally also visited my friend who I wrote about a few days ago – I only intended on dropping off a card but I ended up seeing him. I was actually really heartened by seeing him. I’m smiling now as I think of it. He still got a way to go but my goodness will he make it. I think back now to those days where it felt like it would actually never end. But that’s the important part… Think back. I still marvel at the fact that I’m 10 weeks post second surgery. I survived it. And he will too.

Anyway, it is well past my bedtime. The Moët I drank tonight in celebration was more delicious than I remember Moët to be. That’s the taste of hope, excitement, relief and victory. And the support I’ve received from people following this news has lifted me up so high. I love you all.

The dreaded MRI. Again.

So as part of my ongoing monitoring, I have to have an MRI. Every two months.

If you’ve been following along, you might remember that I enjoyed my first two MRIs but then managed to develop a crippling anxiety on my third. So two-monthly MRIs are not high on my list of things I want to do.

I emailed my CNS (Clinical Nurse Specialist) and told her I was a bit worried about getting through the MRI and wondering what my options were. She said she would write me a prescription for Lorazepam and that it would be waiting in the pharmacy for me to pick up before my MRI. Brilliant. Half a tablet 20 mins before, another half later if necessary. I considered just taking a whole one but I was going out after for my friend’s birthday and didn’t want to over-drug myself unnecessarily. I had no idea how it would effect me so thought I should err on the side of caution.

I was in at the Macmillan centre early as I wasn’t sure if I would need to wait for the prescription. I didn’t need to wait in the end so I headed over to The Living Room to get a cup of tea. I was sitting there drinking my tea when one of the Macmillan peeps came over to just ask if I needed anything. I explained I was just killing time before my terrifying MRI.

We had a bit of a chat about the MRI and she gave me some good tips and said to ask to listen to music. I didn’t even know this was a possibility, it had never been an option before. But I hadn’t had an MRI in the Macmillan centre before. I introduced her to Clarence who I had taken along in the hope I could take him in with me. It was just nice to chat to someone about it and she helped me feel calm. So thank you!

I then made my way down to the bottom floor for the dreaded MRI. While I was waiting I popped half a Lorazepam under my tongue as advised. Breathe in, breathe out. I’m calm.

Before long it was my turn. I put my things in a locker (two lockers actually… I had a pot plant in my bag… Totally normal) and went to get a needle shoved in my arm. Aargh the dreaded cannula! ‘My veins are difficult…’ I tell her as I grit my teeth and clutch the chair with my other hand. Thankfully she got in first time! Yeah the cannula hurt in my vein but it was in! This of course brought about the following conversation I have had so many times:

Her: it hurts? It shouldn’t hurt… Let me just check it’s placed properly…

Me: oh I’m sure it is, this is normal.

Her: well it seems to be in your vein fine, but… It shouldn’t hurt…

Me: don’t worry, I’m used to it.

LOL.

So that was good. I clutched Clarence to my chest and in we went. I warned them I was problematic last time but wasn’t sure how I would go this time. But I had Clarence to hold and a sleep mask to put over my eyes.

The Imager (Imager? Radiographer? MRI-er? Lady-who-does-the-MRI?) came out too and they got me ready to go in. They told me that this machine was one of the more roomy ones and that THEY COULD PLAY MUSIC THROUGH THE HEADPHONES! Dream. Yes please. What kind of music did I want? Pop music? Um… Yeah sure.

I got on the tray, put my sleep mask on, clutched Clarence and they put me in. I was feeling fine until I got all the way in, then the panic set in and I had to get out. As quickly as I went in, I was out again. Hyperventilating, panicking, I couldn’t face the thought of being in there.

I lay there for a bit, trying to control my breathing. ‘Maybe it would be better if you could see the mirror in front of you so you could see us in the room?’ I took my mask off for a minute and looked at it. The tiny periscope making me feel immediately trapped even though I was out of the machine and I panicked again. They took the cage off my face for a bit.

We talked a bit. The lady who did the cannula said ‘you’ve already done the easy bit, you’ve already been in there!’ If that were the easy bit then it would be fine! It’s the staying in there for 20 mins that was the hard part!

Actually it turned out that this MRI is quite a quick one. Only 15mins. That’s good.

‘Where is your favourite place in the world?’ The Imager asked.

‘Ummm… I don’t know…’ I answered stupidly. I mean it was the correct answer, I don’t know! But it wasn’t helpful here.

‘Mykonos’ I answered finally.

She smiled. She told me to think of the winding streets, of the white buildings. Of wandering down to the far end of the town and winding back along the waterfront. She painted a fantastic picture and I was immediately transported. I get it. Visualisation. I know this technique. But though I know this technique, I’m not sure I could have transported myself there on my own. Having this chat with her grounded me, pulled me back, took my mind off the task at hand. We discussed the sunset over the windmills and I thought about all the restaurants and bars that line the shore.

By the time they put me back in, I was in holiday (and maybe by then the Lorazepam was kicking in). I put my mask back on and they moved me back into the machine very slowly (this helped), the music was already going so I could distract myself easily, and a gentle touch on my hand as I went in made me feel supported and not too far away.

Immediately I was lying on a beach. I could even feel the warmth of the sun on my face. The pop music playing in the club behind me. And from then on I was calm. I was fine. Over the speakers I was kept updated on how long for each scan – ‘just 1 min 20 for this one Jen’. Ok cool.

My guilty pleasure song came on (dynamite by Taio Cruz) and I pictured myself at a beach party with my friend Ange as the sun set. I had to remind myself to stay still and not dance to the music. At this point I was actually smiling!

And then it was over. Easy. Having that chat with the girls (and probably the Lorazepam) got me through it.

The Imager told me that she’s made note on my file to always scan me in that machine – the slightly bigger one that allows music, and to make sure there’s extra time for me if I need it, so I’m not rushed. What a saint. We had a chat after about holidays and she said she’s getting married in the South of France in a couple of weeks! So I hope she has the most amazing time and the weather is perfect!

She honestly saved me. I am forever grateful for her patience, amazing helpful attitude and beautiful smile!

Her parting words to me were a reminder to ask for help when I need it. Specifically, in relation to asking my friends to come with me to the MRI, but also just in general. I’ve been told this once before in a particularly memorable way. It’s true, I probably should. I just like to try and get through things on my own and not bother people. But she’s right. And I appreciated the reminder.

‘So… What’s the prognosis?’

It’s a thing people ask. Like ‘are you going to live or die?’ Like people are watching tv show and want to know the ending.

It’s funny to think of your own life in that way… Two sides of a precarious scale.

Well… we don’t know the ending. There’s no blood test to see if it’s gone. The pathology report is not as good as they might have hoped, but they’re optimistic they got it all out. They like to get a 5mm margin around the tumour but in places they only got 2mm. They are worried it might still be hiding under my cheek, which is common enough if the tumour is in the margins. So now it’s ongoing scans to see if anything shows up. If it does, then it’s back to surgery to see what can be done. I love how nonchalantly my Oncologist speaks about this. ‘If there’s some in your cheek they’ll just have to go in and cut it out’. Oh just that. Maybe I would lose just my cheek, skin, maybe an eye? It’s funny how quickly you can forget all the good a surgeon has done if there is a big ‘bad’ involved. Sometimes ‘but the main thing is that we got the cancer out’ is of little consolation.

I’m reminded of a Neil Finn lyric here… ‘You do what you can to survive…’

I’m hoping I’ll get the results of my first post-surgery scan on Friday. I’m hoping it’ll be miraculously clear and I can go two more months without wondering if I have to go back into surgery asap.

So how do we know if it’s gone? We wait 5 years and see if I’m still alive.

I took a break from blogging for a while, you may have noticed. I took a break from Twitter too, only replying to things and checking on friends. I needed a break from constant reminders of cancer and struggles and… well… Death. I needed to try to be ‘normal’ for a time.

And I’m (hopefully) lucky enough to be able to give it up, while friends are falling deeper in.

My goal is to leave the cancer club. How do I feel about that? Excited, hopeful, desperate, purposeful, righteous, guilty.

My dear friend Amy wanted us all to do something. It was her dying wish. Well, anything I can do, I will. Any way I can help other people going through something similar, any opportunities to assist. While also trying to get back to being ‘normal’ and not having my life encompassed by cancer. I know that’s hard though, everyone speaks of a ‘new normal’ – getting used to a new life that isn’t as spritely or carefree as their previous. Well I don’t want a new normal. I’m determined to try and still live my life as I did, though perhaps with a slight new perspective.

It does make you think for a moment about what’s important in life. But only on a small scale. I’m not ready to quit my job and travel the world… A girl’s gotta eat. And pay for champagne, obvi. Priorities on point.