‘A feeling of melancholy and world-weariness’

Today I woke up all panicky. Do you ever have those days? When you have an oppressive feeling of overwhelm? I didn’t sleep much last night. Well I suppose that’s quite standard these days, but with the combination of having had a coffee at 2pm (is that a thing now? Does an afternoon coffee keep me awake all night?) and there being a lot going on outside my bedroom window last night (sirens, people playing loud music, arguments and what sounded like a brawl… like seriously? What was up with last night?), I feel like I’ve started on the back foot today.

I don’t know if you notice this too, but when you’re already on edge, everything that happens seems that bit more stressful, like you’re not emotionally stable enough or well equipped enough to deal with minuscule things happening throughout the day. Everything seems to throw you.

Also after cancer you get massive life FOMO or something, and want to do everything, but your body (and mind) is just not capable and it’s this ever unbalanced cycle of doing everything and then having to do nothing. I usually feel like I’m on the verge of getting it right but never quite there. Some weeks better than others.

I was really ill for a couple of weeks (burnout? Maybe… Or just that time of year) which meant lots of moping around. Among other things, I was feeling really feverish so I took my temperature. 38. Shit. Panic. Call the Oncology hotline. No wait, it’s ok! That’s ok! A temperature is ok when you’re not neutropenic! And exhale. During chemo a temperature of 38 degrees would mean rushing to A&E because I had an infection and no white blood cells to fight it off. Without treatment and the right antibiotics swiftly, that would mean things were looking quite worrying. But now it just means a few days on the sofa. Triggered, but safe. Whatever has been going around at the moment has been far from fun though. But I’ve been back in action for a couple of weeks now.

The day before I got horribly ill, I gave a talk at an Advanced Airway Management Course for about 300 Anaesthetists and related staff. That timing worked out well, though it’s very reminiscent of being back at school/uni when you used to get ill after exams/term time when you had the time and space to rest. Our bodies do some interesting things like that, hold on until it’s ok to crash. Anyway, it was such a wonderful day and the feedback was incredible. I hope some more similar things come out of it, as I feel like there is a lot that can be done in the space of relating my thoughts and experiences to medical professionals. It seems useful for all involved.

But fast forward past the illness, I had a great week last week. A couple of standout events. One of my friends and I went to see a play written and starred in by someone she went to university with. Afterwards we went upstairs to the bar and were in the middle of being told about the fact that there was a ‘Trans Voices Cabaret’ night on when a flash of colour and wonderness came running up to me with a hug, and I found out that another friend was there for the TVC event. What are the chances. London is always surprising like that. So we stayed and were treated to a night of four absolutely incredible performers, and just a general wonderful vibe filled with support and love. I left that buzzing about the whole series of events.

On Saturday was Pride. My first Pride, which I realise is ridiculous that it’s taken me this long to get to one. What an absolutely fantastic day! A big group of us traversed the crowds and eventually ended up in St James’s Park having a bit of a break (and eventually at a pub). In another feat of strange interconnected-ness, while we were watching the parade, one of the performers from the TVC night on Thursday spotted me and said Hi. I have stalked them on Twitter and will be going to everything they ever perform. What a talent.

So it was a great day, but a long day. And a big day. Lots of crowds, lots of glitter, lots of partying and friends, but it meant I spent Sunday recovering and as a result didn’t feel like I got much achieved on the weekend. Monday appeared again and I felt like Friday only just finished. I didn’t really feel refreshed.

We have a culture of achieve, achieve, achieve… Or do, do, do… It can be hard to embrace the need to rest, rest, rest.

I have to remember that I’m still recovering. I had a chat last night with one of my friends who lives in Germany. I’m not sure why it’s relevant where she lives, I think I probably just want to sound cool for having a friend who lives in Germany. She was saying she’d had a difficult day and had been told to ‘find something to make her happy’. Which is great yeah, sure. But we discussed how sometimes there are just downs you have to endure. That the expectation of being happy all the time is deceiving and unhelpful. It’s a difficult one because obviously we should make whatever changes in our lives we can to be happier, absolutely. And we should seek out things that make us happy when possible. But total happiness all the time? Just no. We’ve got all these human emotions, we should use them. We should listen to them. We should work on good ways to help manage them, but to expect them never to happen is just setting ourselves up for failure, and for struggling even more with any difficult times that life throws at us.

She showed me this amazing picture she had created with a quote she had written. I asked if I could steal it, so here it is. It was a timely reminder. Maybe some of you need it too.

I was speaking to another friend the other day (not one from Germany – though you would be forgiven for thinking they might be, given what’s coming next – but incidentally the one I ran into at the TCV night, Rosa) and she was saying that she feels like we’re all a bit all over the place and a bit ‘floating’ at the moment. Who did she mean by all? I think probably a fair few of us friends from the cancer community are in similar places in our ‘recovery’. I’ve said it before and i’ll say it again, I think this part is the hardest, and we’re all a little lost. She later posted something on instagram about a fantastic German world that I wanted to share with you all, that I think also sums up life and the world a bit at the moment:

/ˈvɛltˌʃmɛːts, German ˈvɛltˌʃmɛrts/
a feeling of melancholy and world-weariness.

Why do The Germans have all the good words? Anyway, I was reminded to take my own advice that it’s ok to not be ok. Ah yes, noted. Well, on the flip side, it’s also not just ok if you’re really not ok, you shouldn’t have to just put up with it ongoingly, there are loads of resources to help. But it’s perfectly ok and normal to be struggling at times. As for my resources? Here is what I am using at the moment to stay sane.

  1. Listening to my happy playlist
  2. Watching ‘The Ponds’ documentary (it’s on BBC iplayer for another month for all you UK people, search for ‘swimming through the seasons’)
  3. Trying to find time to go for a swim at the Lido – but not beating myself up that I haven’t been able to go for a few weeks
  4. Trying to make time for pole dancing (my new fave Saturday activity and hilarious because I’ve lost a lot of my shoulder but I’m actually ok at it!) – but also not beating myself up as above
  5. Walk to work, but only if I’m feeling up to it
  6. Listening to ‘The Art of Asking’ by Amanda on Audible (if you have Audible, I can recommend you get on it)
  7. Using the Headspace app. So far today I’ve used their ‘SOS panicking’ one which was great
  8. Cutting down on coffee and alcohol for a little while
  9. Chatting to my friends
  10. Reading instead of TV
  11. Breathe (why is this so hard to remember to do sometimes?)
  12. Writing down all the ideas that fly into my head to let them leave again
  13. Making sure I spend the hour before bed winding down
  14. Try to get outside. Walking around London is one of my favourite things.

Does anyone else have any things they do when they’re feeling like they’re struggling a bit with life?

A few pics to leave you on…

My Pride attire:

My talk:

Happy World Mental Health Day.

In fact without realising in advance, I had an appointment to see my psychologist on World Mental Health day. That’s nice.

My mental health is ok. It’s not great but it’s ok.

Some days I want to hang out with people, taking my mind off things and creating fun memories. Other times I just want time to myself. I need to lock myself in my room, not interact with anyone and get my head in order. On those days, any human interaction leaves me feeling shaky and drained.

I struggle with how I look. I struggle with fitting back into my old life. I struggle with knowing what I want. I struggle with finding meaning to life. I struggle with finding my purpose. I struggle with feeling empty. I struggle with people’s well-meaning advice giving, which makes me think I should be doing what they tell me to as opposed to what I actually want to do. I struggle with thinking about the future. I struggle with thinking about the past. I struggle with the fact I’m not well enough to do everything I used to. I struggle with how to say I can’t do something because I’m just not up to it.

That last couple can be linked to something I’ve learned about lately called ‘spoon theory’. No, that’s not an alternative to string theory, I haven’t become a physicist. The idea is that people with chronic illness have a limited number of ‘spoons’ that are used up by different activities throughout the day. Once those spoons are used all used, we just need to crash and recover. I’ve always been famous for using up my spoons and somehow fabricating more from thin air. But my dealer for my additional stash appears to have gone on holiday or got sloppy and was incarcerated or something. I don’t know. But I do know that now I’ve been left with just a regular set and I am struggling to work out how to assign them. And how to explain when they’re used up and I need to disappear for a while.

So when I’m using one of my spoons, I’m fine. I’ve got energy, I’m able to stay out, I’m able to do things fine. When all spoons are depleted, I crash. I think people found his hard to understand during chemo because the only times I would see people would be when I was good. So they couldn’t really understand how bad it was the rest of the time. It’s the same now. Work takes up most of my spoons, which leaves me no social life, which isn’t good for my mental health so… I don’t know, I’m a little lost really.

Anyway, I think everyone would benefit from therapy, but I appreciate that not everyone can afford it (mine currently is on the NHS and held in the cancer centre, an opportunity I am very grateful for). But there are other resources… I use the Headspace app every day, and I am always reading something about psychology. I’m learning to give myself the down-time I need, though it’s something I find hard and I am working on.

If I say I’m not feeling up to doing something, please don’t tell me I’m ‘getting old’ or push me to tell you what it is I’m doing that means I can’t make it (don’t make me say that I’m choosing to do nothing, though I feel like I should be able to say so without shame) and please don’t take it personally if I say I can’t come to something or if I cancel. I do worry that people will forget about me or stop inviting me to things but I’m still here! Still love you all.

Also all those things I mentioned that I’m struggling with, that doesn’t mean I am struggling. I’m not feeling excessively down, I don’t need cheering up, I’m not feeling sorry for myself, I’m just sorting a few things out in my mind. On any day, any one of us can be met with a whole barrage of thoughts and feelings. Some days I’m really happy, some days I’m sad. That’s life. I’m not struggling any more than the next person.

Regardless of a cancer diagnosis, I think it’s quite common when you hit 30 that you have a bit of an existential crisis. No longer making your way in your 20s, marked by a series of trials and errors, you’re expected to have your life together a bit more. Some of us do, some don’t. But does anyone really? What does that even mean and does it matter? I’ve heard friends say that they have grown up with an idea of where they want to be at 30 and they’re now stressing out that they won’t make it – marriage, kids, white picket fence in the suburbs… I know people who won’t leave bad relationships because 30 is too old to start a new one. To me that just sounds insane. I suppose I’ve never subscribed to society’s obsession with marriage and kids, but still. Things change. Priorities change. I’m not going to hold myself ransom to a version of myself I once thought I was or might be.

So on World Mental Health day, give yourself a break. You might not be where or what you thought you would be, and that’s ok. You’re where you are, enjoy it. Or you might be exactly where you think you should be, but you still have days where you struggle with things. I think a big part of life is learning to be happy with wherever we are, and make steps towards creating a life that works for us.

I’m exactly where I want to be right now, purely by nature of me being here.

So… I went on BBC…

So I had a bit of an exciting day yesterday, you might have seen on my various social media accounts (or the tele for that matter) but if you haven’t…

I went on live TV.

On BBC2.

On the Victoria Derbyshire show.

Oh my goodness.

The day started with meeting my two Macmillan support team girls. They were incredible. I seriously love them so much, I want to be friends with them (Creeper)! They came in with me and even sat in the wings supporting me while I was on set (creepers). Having them there made it so much fun!

We had a coffee and a bit of a chat in Pret beforehand, all super excited about the adventure we were about to embark on. None of us could stop smiling. Next thing, off we went to the BBC STUDIOS.

Did you know that there is a Dalek and a TARDIS in the foyer of BBC Studios? Halfway through getting our passes made, I spotted them and excitedly said to Ellie that I needed a photo. So she and I ran off only to get called instead to get our bags checked by security, and then she had to go back to actually pick up her pass. I was being such a tourist, way too excited. But we got the photo (shown at the end of the post).

Someone came to get us and we got taken in, first walking above the BBC News room. I was in awe, this place was just incredible. Working at BBC has kinda been a dream for me so seeing the insides of it was exhilarating. One of my support team, Sima, had worked in broadcast journalism before for many years and was being so cool about it all. I was not cool. I was like a kid in the biggest magical sweet shop in the world.

Next I was in to hair and makeup and the lady who was making me ‘camera ready’ was so lovely. We chatted about how her husband had cancer and just generally about things – she said I have nice cheekbones as she put blush on me. I will endeavour to start wearing blush (blush? Blusher? I’m so makeup uninformed).

Then it was into the ‘Green Room’ to wait. On the show with me were some Head Teachers who were part of a demonstration outside Downing Street. As a result, The Green Room felt a little bit like a staff room. They were all lovely though.

First I was to be in the opening scene, so I got to sit on the couch and smile at the camera while my segment was introduced. That was quite good because I got to see the studio before I was actually required to do much. We started and I was wondering why the host was so quiet, but I smiled at the camera on queue. Turns out it was only 10 minutes to 9 and that was a run-through. Phew. I had another chance to perfect my smile. She was eventually mic-ed up and in 2 mins… 1 min… 10 seconds… 3, 2, 1, we were on!

Being in the studio was so cool, I can’t even explain how amazing it felt to be seeing it all in action. I must note here how lovely everyone I met at the BBC was. I suppose that’s important for a show that has non-professional people on it, it helps to make them feel comfortable. But from the host (Joanna Gossling hosts the Victoria Derbyshire show on Fridays) to the person who brought us in and told us where to go, to the person who set me up with my mic, to the person who got me on and off set, to the camera girl… And of course hair and makeup. Even after the intro I got a smile and a ‘well done’ from everyone, including the host. In fact Joanna even came up to me specifically before the show to introduce herself, say hi and tell me how good I look. I was among friends here.

I was walking around and sitting, grinning like a maniac, having such a great time. Was I nervous? No. I love being the centre of attention, any chance to show off.

The interview itself went for about 10 minutes. They put it together really well, including using the pictures I took after surgery as a kind of time-lapse presentation. It kind of made me realise that I now have this ability to relate to quite a few different people – those with cancer, those who have had extensive, invasive surgery, and those with a facial disfigurement or has had their face changed in some way.

And I really hope that some people saw this interview and felt less alone, less helpless. If anyone has found their way here on the back of that interview, please don’t hesitate to say hi! Welcome.

To anyone who hasn’t seen it, I will link to the BBC Iplayer below (unfortunately this is only available to my British friends and family. If you’re outside of the UK I am not endorsing the use of a VPN to watch it because that is naughty, but I’m not sure of any other ways you can all see it). I will also link to the article that the BBC wrote, which has a small clip at the bottom.

Thank you to everyone who made this happen. I feel so lucky for these opportunities and the fantastic people who make my life so damn enjoyable no matter what I’m doing. I’m grateful for every smile, every show of support, every person who listens to what I say. Thank you.

Edit: I got it on YouTube! International friends and family, please watch here! Hopefully BBC won’t get grumpy and take it down:


Iplayer link (only available for a month from airing date) – see 39mins for my segment:


BBC article with clip:


A couple of other short clips of it, depending on your favourite platform… (The two twitter ones are practically the same as the one Facebook one)

And some photos…

Let’s talk jaw stretching!

And let’s also add ‘jaw stretching’ to the list of things you don’t think of having to deal with…

So last time I went to surgery clinic, Deepti asked how my jaw opening was going. It was ok. The last I time I had it measured it was ’30’. I’m presuming that’s mm. Apparently 35 is the bottom of the ‘normal’ scale.

Deepti pointed out that once I get teeth, there will be a lot less room in there so it’s probably best to try stretching it. A couple of weeks later I got a package in the mail and a referral to the speech and language people to learn how to use it. My appointment with them happened on Wednesday.

So I’m meant to do it by the old 7-7-7 rule. 7 second holds, 7 repetitions, 7 times a day. Let’s be real. This thing isn’t small and I’m not carrying it around everywhere with me. She was like ‘every couple of hours – you can just go and do it in the bathroom at work’. Can I? Lol.

I’m aiming for 4 times a day. I mentioned this to someone I know and they said ‘oh are you buildings up to it?’ Uh… No… I’m just not carrying a big apparatus around with me everywhere I go so I can pop off to the bathroom in the pub on a Friday night to stretch my jaw.

I feel like that’s important when it comes to recovery. Sure, aim for some excessive amount but also just do what you can without burning yourself out. I mean I should probably be putting cream on my scars 3x a day, carrying my resistance bands around with me to do exercises during the day, taking my iron tablets every day, rolling ice on my face every morning and night for inflammation and never eating red meat, and so on and so forth…

And then I’d be constantly stressed, anxious and well… Still living ‘ill’. So. Yes I try to do all these things and many others as often as possible but I’m not stretching my jaw every 2 hours. Sorrynotsorry.

As for the jaw stretcher (/torture device?) itself… Does it hurt? No not really. It aches a bit after each use, which lasts for a little while, but it’s ok. Sure if I overstretch it then it’ll hurt but I just do it so it’s not too much.

The Speech and Language Therapist measured my mouth opening amount before and after doing my first 7-7 set and it went from 33-37(mm?) so that’s fun!

Another cool thing and a shout-out to my twitter community… My friend Liz messaged me saying:
How’s the mouth stretcher? I read a lot about them when researching radiation damage and you’ve got the nicest type.

There’s something quite reassuring about having these people, there is always someone who knows, or at least gets it! I’ll write a bit more about them later.

Last thing, it’s MRI FRIDAY. Which, if you’ve been reading my previous posts, you’ll know terrifies me these days – not because of #scanxiety (I don’t get that) but because of #claustrophobia (not sure that one is trending). But I’ve got Lorazepam and an eye mask, and Clarence the cow is coming with me. He said he doesn’t mind because he doesn’t find MRIs too scary. This is THE MRI, the results of which should hopefully result in me being referred for… TEETH! I’ll let you all know how that goes next Friday!

Happy weekend all. I’m treating myself to go to the Cabaret tonight after the MRI so I’ve got that to look forward to. Also catching up with a dear friend who is passing through London after visiting his mum who just had breast cancer surgery. I’m so excited to see him but I do so wish it were under better circumstances. All my thoughts go out to his family, I love them dearly and if any of you have a spare thought, please send one their way. But, to not end on such a sad note, last I heard she’s doing really well. So that’s worth celebrating.

A word about coping…

I look at those pictures of me in the hospital, you know the ones. And it’s almost like I can’t remember them. Like they didn’t happen to me. My mind has done some funny things about that time. It tells me of conversations I had with people, when I know I couldn’t talk. I suppose that’s the beauty of communication, that it doesn’t need to involve only words. But in my mind there were words even though I know there weren’t. Though I definitely do remember the frustrations of not being able to actually speak.

They say people can block out trauma. And I always thought that was weird and hard to comprehend, though I do know of instances of it happening. Brain’s foggy, big blank patches. I haven’t blocked out my trauma, but my mind has minimised it. I could tell you all about how bad it was, but I no longer feel it. When I look at those photos of me I think ‘that poor person, I just want to hug her and tell her it will be ok’. My brain has compartmentalised that and it’s not me, it didn’t happen to ME. It’s almost like it never happened at all. The lovely people I met, I remember vividly, every interaction with them, every conversation, everything they made me feel. But the bad bits? My mind is slowly but surely wearing them down, eroding them like the sand on the shore.


I guess that’s what it is. How long can I keep dwelling on the hardships I’ve experienced? Its much easier to gloss over them. That’s probably how I heal. But I can bring them back if I need or want to.

I was asked to summarise ‘my story’ for Macmillan the other day and it brought it all back. I was just small, lost Jen again not knowing what was happening. And I cried writing it down. I cried for all the frustration, all the pain, all the struggles. It’s there if I recall it, if I need to. And I will never forget it or what I went through. But by minimising it, my brain helps me to get through the day, to build back up, to crawl out of the hole.

So although it confuses me a bit, I think I’m grateful for it. I don’t need to feel that emotion, that hardship every day, so it becomes something that happened to someone else. That swollen faced person who couldn’t function very well and was lying in bed a lot of the day… That poor thing. I feel so emphatically for her. But that’s not me. I’m just someone with no teeth who can’t breathe through her nose, struggles with how she looks and gets tired easily.

I couldn’t avoid it forever – cancer meets religion

I was hanging out in The Living Room in the Macmillan Centre a couple of months ago, waiting for my clinic appointment when I got chatting to a guy who was likewise wasting time like I was.

I’m not sure why we got talking, but we did. It’s not an uncommon occurrence in the Living Room.

He asked me what my cancer was and I filled him in. I also said I’d had surgery on my face, which he might have guessed from my swollen face, toothless grin and dodgy speech. ‘No, not at all!’ He said. I was surprised to think I was at a point where people didn’t notice. I mean we weren’t sitting close and he probably wasn’t scrutinising my face but still! I felt like it was big for me!

He has CLL – Chronic Lymphocytic Leukaemia. It sounds like a ticking time bomb. Absolute insanity. It’s funny, we discussed how my specific type of cancer suits me – my treatment might have been excessive, full-on, but it was always moving. Busy.

We discussed religion for a bit – he, the man who writes books about religion, me the staunch athiest.

I said I didn’t understand how you could keep believing in God after a cancer diagnosis. I mean sure, I get that people want to think there’s a higher power that will save them, that there’s a greater plan. For me, I trust in my doctors and surgeons, but his type of cancer is slow moving and they have a ‘wait and see’ approach (I don’t know how I would survive that, he’s amazing! But because of him as a person, not necessarily for his beliefs). So I understand a need for something that reassures you it’ll be ok. That you’re not alone (again for me, I get that from all you lovely people, not from a belief).

I said I didn’t understand how you could keep believing in God when you also believe that He’s given you cancer. That He thinks it’s what you deserve.

My new friend explained to me that he doesn’t see it that way. That the world is broken and God isn’t orchestrating everything, but He can help to turn it around. To make sense out of the senseless, to give you hope when you feel like you’ve lost everything.

That makes more sense to me. Though once again I’m amused at how differently religion can be interpreted to fit whatever you want. Though for the first time instead of seeing this as a criticism, it seems quite clever. I suppose music can be the same – different people can take different meaning from songs. It’s kind of like horoscopes – they work because WE apply meaning to ourselves.

And once again I’m reminded of MY purpose, of what means the most to me: People. All of you! You’re everything. YOU give me meaning.

He mentioned that being religious was about finding purpose in the world and that some people are happy to live without finding purpose and meaning.

I smiled, nodded and dismissed it. But thinking back, I don’t dismiss it. Not being religious doesn’t mean you don’t think about the ‘meaning of life’ or about your purpose, it just means you don’t take to thinking there’s a big man in the sky to explain everything. Way back in the day everyone was religious because that’s just how it was. As the philosophers, thinkers and scientists came out, they started to struggle marrying religion with the logic and truths they found out about the world. Now, we know to think of more meaning outside of the easy answer of religion.

But then again I suppose keeping faith in religion isn’t necessarily easy, especially with the things life throws at you.

He gave me a new way to think about religion in light of a cancer diagnosis. Though I’m not sure everyone has the same pragmatic view of it that he does, that the world is broken.

I don’t like to think the world is broken, I think it’s perfect. People are amazing, times are hard, sure. Really shit things happen all over the place. But have you seen the sun shine? Have you seen a stranger smile at you? Have you had a friend call to see if you’re ok? Have you ever had someone care? Even a little bit? These are your every day miracles. And its PEOPLE who are responsible for those perfect moments!

I have learnt a lot from this experience though. Before this I probably would have followed that last paragraph with something about religious people thinking that God made people be nice, that it wasn’t actually them. I think I was jaded by my great aunt when I was young who, at the end of a Christmas lunch my parents put on, would say ‘it was such a lovely day because I asked God for it to be’. She didn’t mean offence by it, but it offended me. It was a lovely day because of the people who made it so. My blood still boils thinking about it. She also thought God was concerned with making sure there was sun on the day she wanted or that I got into university (firstly God has bigger things to worry about, secondly it’s ME that got me into uni! Ugh).

I’ve been thinking a lot about the meaning of life and reading a lot about it of late. I’ve actually said this in a previous post and I will say it again – I have come up with these two things. It is our ability to choose how we react to situations. 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.

When I was writing this originally, I was talking to my parents about it. About the religion thing. I think it was my dad who said ‘There are ways of explaining everything, it all depends on how you want to look at it. It’s a non provable, non winnable argument. Just comes down to the person and what gets you through the day’. Trudat.

So I’m posting this, months after I started writing it, months after our meeting. Mainly because I was thinking about my friend, our conversation and how he is going. I liked him and I hope he’s well. If you’re reading this my friend, I hope you haven’t taken offence to anything I’ve said. I’ve tried to approach it pragmatically and write about how you changed my understanding of religion in light of cancer diagnosis. We will agree to disagree on this matter in general, but I think you are amazing and I hope you are doing ok.


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!