FAQ

There are a few things that I get asked fairly often, so I thought I would put together answers to some of them.

Why are you so tired?

Someone asked me the other day why I’m so tired, why it’s taking so long to build up my strength. It’s a fair question. I wonder too. People told me it would be this way – people who had been through similar things, as well as my healthcare professionals. ‘You’ll need a staged return to work’ they said. Many people who have gone through similar things were surprised I started going back to work so soon after surgery. Others aren’t sure they’ll ever be able to.

I’m pretty good with 4 days a week at the moment, pre-empting that I’ll need one day to just crash. And I do. Four days in a row almost kills me so I need a rest. On my rest day, I can hardly move until about 2pm when I finally manage enough energy to get up. I’ll try stepping up to five soon.

But the question was why. I suppose it’s based on 7 months of chemo for a start. And on top of that, months of hardly moving at all. They say the effects of chemo can hang around for 2 years and I’ve been told to expect it to take that long to regain some sort of a normal life. Though I don’t feel like I’m that far away from it.

Then there’s surgery. My body has been using all its resources trying to heal itself. It hasn’t got many resources left to spend on getting me through a day of work.

Also, anaesthetic can take up to a year to get out of your system. I mean for weeks, months after surgery I couldn’t get through the day without a nap. I was exhausted all the time and everything completely drained me. I’ve got better than that, but I’m not better.

Then there’s the fact I can’t really sleep for long at all because I can’t breathe. Also my brain has been working in overtime since starting back at work. It’s not used to it.

Why can’t you breathe through your nose?

When they took out most of my top jaw, they also took the back of my cheek and the cartilage behind my nose. There was a possibility that they would rebuild the back of my nose with cartilage from my rib (!) but apparently my muscle density was really good so they just packed the muscle from my shoulder in there. By doing so, they blocked off my nose. It was intentional (so I found out some time later) – they did need to seal it all off so that I wasn’t effectively breathing through my cheek. It’s unlikely I’ll ever be able to breathe through my right nostril again. Not a nice thought. Hopefully eventually they’ll be able to do something about my left. I look forward to that day very much, I’m hopeful it’s possible.

Why don’t you have teeth yet?

It’s not because I can’t afford them, this too will be provided by my Guardian Angel, the NHS.

When they first put the new jaw/my shoulder/the flap in, it was huge. It practically took up the whole of my mouth. Over time it has shrunk back, due to the swelling going down as well as muscle atrophying due to lack of use (amazing medical science there).

I will be getting dental implants. I really don’t know anything about them or the procedure to get them but as far as I can tell, they are individual teeth that screw into your jaw. The new jaw needs to be properly settled before you start doing that. No, I don’t think dentures in the meantime are a possibility. The idea has never been mentioned, and besides – the new bits are fused to my cheek. There’s nothing for dentures to sit on.

They also want to make sure my first couple of scans come back with no sign of cancer before they go rebuilding teeth over the top.

I imagine the process of getting teeth will take some time but I’ll get back to you about that hopefully fairly soon.

You can’t grow teeth back naturally?

No. Wouldn’t that be the way of the future, teaching your shoulder to grow its own teeth… Not sure that will ever be possible…

Please if you have any other questions let me know. As you are all aware I am completely an open book. No question is a silly one and I would be happy to answer anything you’d like to know!

Want some good news? Well I’ve got some!

Friday was a good day. Not only was the sun out, and the weekend just around the corner, I got to see my favourite person, Deepti!

Let me start from the beginning. So I’ve got this hard thing in my lip, which basically holds it down my lip up into a very attractive snarl, while also pulling it into my mouth and slightly to the left, and makes it harder than necessary to drink, talk, smile, etc. I assumed it was a stitch that has yet to dissolve.

The lovely Deepti said she would fit me in quickly on Friday morning, so I went in to the Macmillan Cancer Centre and waited to see her. Before long, I was called in by one of the Clinical Nurse Specialists, and soon after that Deepti came in. First things first, she saw to fixing my hair, where I had managed to miss a bit when styling it in a hurry that morning and left some hair glue in without smoothing it down at the back. Sticky. She said it was somewhat endearing? I’m not sure that’s quite the word she used but I think it was the sentiment. Gosh, I’m a mess. How do you even see what the back of your head looks like? Doing much with my hair is all new to me and it seems I have a long way to go!

Anyway, hair crisis sorted, she looked at my mouth and said the problem was now just scar tissue and that the stitch had dissolved. A bit annoying, but what can you do. I’m now meant to massage it to try and get it to sort itself out. She said the flap was all healing nicely though and I don’t have to worry about being a bit rough with it because it’s all good. That was nice to know.

Then we discussed my next clinic appointment. It was scheduled to be before my next MRI, but as she had seen me now, it made sense to move it to after that. So that’s MRI end of August, next clinic appointment first week of September. ‘Pending a clear MRI result, I think we’ll refer you on to get teeth then’ she said.

Wait. Let’s do that again.

PENDING A CLEAR MRI, AT YOUR APPOINTMENT IN EARLY SEPTEMBER WE WILL REFER YOU TO GET TEETH.

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!

Did I hear her correctly? Yes! Yes I did! As I was leaving, I also ran into Mr K. Now, Mr K is not one to commit to (or even mention) anything he is not sure about. ‘When is your next MRI?’ He asked. ‘End of August’ I said. ‘Well at your next clinic after that, let’s get you on to some teeth!’ Do-not-excitedly-hug-Mr-K-do-not-excitedly-hug-Mr-K-do-not-excitedly-hug-Mr-K-do-not-excitedly-hug-Mr-K (I refrained, but I did hug Deepti when I left).

I kept it under control until I left the building and then I did an excited squeal and jumped around a bit. When I arrived at work, one of my colleagues said he hadn’t seen me that happy in a long time. I thought about it for a moment, and I’d say that’s probably correct.

So I don’t know what this means, practically. It doesn’t necessarily mean I’ll have teeth in September, I don’t know how long it’ll take to get an appointment, and then I have no idea how long the process itself will take… weeks? Months? No idea. But this is movement!

I remember before surgery when I was trying to get an idea of a timeline of all this, they said it’s usually about a year before teeth. Always the over achiever, I asked them what was the quickest they have sent someone to get teeth, and they said 6 months. Well my next clinic appointment will be pretty much exactly 6 months post surgery. I am hopeful that they will all be finished by my birthday in December.

This is all pending a clear MRI of course. Every time I see my Oncologist, he tries to tell me it’s likely it won’t be clear, but my surgeons are pretty confident, and we have no idea to expect it to not be clear.

So I am counting down the days to that next Clinic appointment, and for that matter even to the dreaded MRI. I want teeth so badly. I would like to be able to breathe through my nose again too, but oh well, one win at a time. And teeth is definitely a big one! And at least then I won’t have to put up with people telling me how unimportant they are any more and that I don’t need them (I had the worst one of these conversations I’ve had yet just last week, it baffled me)!

HOORAY FOR TEETH!

Teeth thoughts and important (non cancer related) meetings…

People’s reaction to me wanting teeth is interesting. Most people are in the camp of ‘of course, it must be SO difficult without teeth’ but occasionally voicing my desperate wish for teeth gets brushed off with an ‘oh, that’s not an issue, teeth don’t really matter, you’ll get them when you get them’.

I’m not sure what the latter reaction is about. People who say it do mean well, and I know the main thing is that the cancer is gone but… Like… Would they think being without teeth is inconsequential if it were them? Eating is difficult, talking is difficult and I still look like there is something wrong with me… Is that something I should feel happy about and that it’s nothing? I know I’ve been through a lot and I am a lot better off now than I was a while ago but it doesn’t mean it’s all better and easy now…

Though people do like to believe I’m better. When I was having chemo I remember someone saying to me ‘oh so you’re getting better now!’ I looked blankly and said ‘well I’ll be getting a lot worse for a while… But yes, the idea is that I will eventually get better…’ Makes me feel for those who’s cancer/illness isn’t as black and white as ‘sick/better’.

But believe me, although I am waiting with bated breath for the day I have teeth, it’s not like I’m putting my life on hold until that day. I’m out doing things and meeting people, I never thought twice about that.

In fact I’m really starting to feel like me again (until I look in the mirror and see my face, but whatever).

This week we had a big meeting at work with a whole lot of our clients. A fairly daunting idea really in light of a year off from work, and not feeling up to full strength, and looking and sounding odd – thinking about meeting new people, catching up with old, having to remember details about things that have happened, presenting to a group of people who don’t have English as a first language…

But we have such fantastic clients. Catching up with the ones I knew was so lovely. They knew what I had been through, they even follow along with my blog (hi!). They were excited to see me and find out how I was going.

And the new ones were also so great and meeting them and chatting was no hassle. When I finished my presentation I even got a ‘Bravo!!!’ from the person I was sitting next to when I returned to my seat.

People are great. Aren’t people great? I really feel like I’ve achieved something this week! Also, it will be my first day of 4 days at work in a row!!! Yes, I will need Friday to sleep. But I’ve managed 4 days. And big days. I think I’ll try keep to this schedule for a few weeks and then see if I can step it up to 5 days.

On top of all this, my bestie turns up from Australia on Saturday. Haven’t seen her for over 3 years. If anyone is at Heathrow on Saturday and sees two hugging, crying girls… That’ll probably be us.

Watch out world, Jen is almost back, with or without teeth! (Though teeth soon, please, thanks)

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.