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

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.

The challenges that being home presented…

And so it was that two weeks and one day after the first of my major surgeries, I was allowed to go home.

And you know what? It was hard work. Really hard work. It was such a relief, and I was finally able to relax for the first time in 2 weeks, and it was amazing being in my own home. No more being woken up every few hours for observations. No more being poked every day with needles for blood tests. No more feeding tube. No more doctor visits… The list goes on.

But being home also meant no more morphine or sleeping tablets, and it also meant managing all of my thousands of other medications all by myself. Thankfully Dad stepped up and took over the role of Mr Medicine man.

The other big thing was that I now had to work out what to eat. The feeding tube really got to me, I hated it and I hated the way the feed made me feel so I was so glad it was gone. And I wanted to taste actual food! But this of course meant I was going to have to work really hard on fuelling my body enough for it to be able to keep healing itself.

I had no use of/access to my top lip which meant having anything with a spoon was pretty difficult – no way to scoop anything off the spoon. I could flip the spoon upside down but anything runny like yoghurt would fall off before I could get it in my mouth.

I could really only do drinkable food, like smoothies, juices and soup. Pureed food was just too thick and dry and difficult.

I had regressed to a baby. I was having liquid food, half of it ended up down my front, I couldn’t do anything for myself, I couldn’t sleep through the night, I even had a 0-2 year old toothbrush. But I could at least drink beer, thank goodness!

By the second day we started getting things under control. Smoothies for breakfast, Heinz tomato soup for lunch, Sainsburys soups for dinner. Snacks in between consisted of custard, yoghurt blended with milk (to make it thin enough to drink) and added milk powder to bulk up the goodness.

I also had supplement drinks that they gave me at the hospital to take home with me. ‘Ensure’ they were called. Chocolate and vanilla ones. The chocolate one tasted really good, like a milkshake. But it was so thick and almost greasy, not to mention ridiculously sweet. There was no way I could get through 3 of them a day. The vanilla one just tasted gross. Mum managed to get me to have half of one a day by blending the choc one with ice cream, milk and plain yoghurt, and the vanilla one with raspberries.

I knew once I got home I’d be able to manage my food fine (with mum’s help of course). I would have struggled in hospital if Deepti hadn’t let me leave that day. The logical next step for the nutritionists was to get me onto purée food, as that’s what is on the menu at the hospital. But that wouldn’t have worked for me at all. For one of the few meals I had there I ordered a pureed meal, with soup and yoghurt. All they brought me was the puree meal I couldn’t eat and left out the two parts I could. I would have started losing weight rapidly if I had stayed much longer. If we had waited for the nutritionists to assess me, I’m sure they wouldn’t have been happy. And I bet I would have gone home with a feeding tube I didn’t actually need. That would have slowed my progress for sure.

This bold move by Deepti, and her trust in me to manage this myself saved me. I would have dealt with going home with the feeding tube but it would have got me down and slowed my progress. Do I need to say it again? She is great. I appreciate her so much.

As it is, I have pretty much kept a stable weight since I left hospital, so I think we’ve been successful.

The final bits…

With the trachy out, it was time to start breathing through my mouth. My nose was entirely blocked so there was no chance of it helping me out. My mouth got so dry. Night time was the worst. I already wasn’t sleeping much, but now my mouth and throat were dry and burning. And I couldn’t swallow. I could use little pink sponges to moisten my mouth but it didn’t really help. So I grabbed a syringe and syringed water into my mouth to properly coat it. Then I realised I could swallow my saliva and I could put water in my mouth and I may have cheekily combined the two a little. It didn’t make my mouth any less dry during the night, it didn’t stop me waking up constantly, but it did bring me some relief.

The Trachy was out on the Friday. On Saturday Dr Claire came to visit me and said I could start trying to drink clear liquids. I sheepishly said I had been experimenting with it a tiny bit. I showed her and her two doctor friends in tow how I had been syringing water into my mouth and swallowing it.

I had to do it over the sink because there was always a chance I would spill it. I couldn’t close my mouth so it was hard to make a seal. But I managed to seal my bottom lip with my flap. It had been almost 2 weeks since I’d had anything to drink, and a lot had changed in my mouth. But I practiced.

When Mum and Dad came to visit that day we went down to the cafe and had a peppermint tea. I shared it with my jumper, but I did get to enjoy some of it. Dad also popped out to get me some Ribena. The Ribena was amazing. It got rid of the horrible taste in my mouth, and it was pretty nice to taste something sweet and cold and delicious.

The following day I was allowed to progress to REAL TEA and we went down to the cafe again and I had my first cup of tea in 2 weeks. I don’t think I have ever gone that long without tea. I hope to never do it again.

On the Monday I had an assessment with the speech therapist Lucy to assess my swallow. I like her. She was the one I met before the surgery, and seeing her in hospital felt like meeting up with an old friend. She was amazed by how well I was doing considering my lips wouldn’t meet and I had just had this massive surgery! My swallow was not compromised, though my mouth was being a bit tricky. We tried a syrupy chocolate supplement drink and then custard. Using the spoon was difficult because I didn’t have a top lip available to scrape the contents off it but I quickly found I could use my bottom lip for that job. So I would put the spoon in my mouth, flip it, scrape it off, and say ‘mmmm custard’. (I like custard).

I was spurred forward by this and that afternoon I was given the ok to move to puree food. I ordered pureed salmon for dinner. But they ran out. So I got puree roast beef. Um… why is that a thing? It was horrible. I struggled to get it in my mouth, I struggled to get it off my spoon, and I struggled to swallow it as it was like dry paste. Not to mention it was yuck. The soup and the yoghurt I was fine with though. It was messy, and I had to cover myself in a towel, but I got through it. They would be assessing me to see if I would have to go home with the feeding tube or not, and it seemed likely I would. I’d had my training, I had the pump etc. I was ready to feed myself at home. I wasn’t looking forward to it, but figured it was better than staying in hospital for too long.

The next day Deepti came in for the Doctor’s visit. The first thing she said to me was ‘how would you feel if I told you that you could go home today?’

I was in shock. ‘I would feel very good!’ I finally exclaimed.

It was Tuesday. Two weeks and one day after first surgery, one week and three days after second. There had been talk of me going home near the end of the week, but I had just been saying to my parents the day before that I didn’t know how I’d last many more nights in there. They were starting to take their toll.

Deepti asked how I was going with my eating. I said it was difficult, but I was fine with the soup and yoghurt, custard etc. and drinking, but I found the puree food tricky. She said she trusted me to sort out eating and promptly took out my feeding tube. I can’t explain how happy I was. I had not been feeling very well with the feed they’d been giving me and I hated being hooked up to it. I wanted to be mobile and zoom about the place.

I was freed from my shackles and about to be freed from my incarceration! I couldn’t believe it!

The rest of the morning was spent packing, getting loaded up with supplement drinks, dancing around the room with Clarence, saying goodbye to nurses and Kat the physio (I was going to miss her the most) and waiting for my medication so I could LEAVE. I was excited to tell my parents when they turned up for their daily visit that I would be leaving with them!

I was exhausted when I got home. I hardly had the energy to say hi to my housemates. But I did. Then went to bed. I had a long way to go, but I was home. No more being woken up every few hours. No more having to buzz and wait and ask every time I needed something. No more freezing cold dry room. No more having to appear perky for every new visitor. I could just lie on the couch, drink smoothies and feel sorry for myself. Things were looking up.

Little adventures

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

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

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

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

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

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

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

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

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

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

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

View from T16:

View from my room:

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

Trachy tales

While a lot of the point of this post is really to say ‘Kat the Physio is amazing’, because I definitely haven’t given her enough time yet, I feel I also need to talk a little bit more about the Tracheostomy.

The concept is great. Hole in the neck to breathe through, so no matter what they’re doing to your mouth/face, no matter how much swelling, you are still breathing fine.

I kind of wish I’d had more details about it explained to me before hand because I had no understanding of how it worked whatsoever and it stressed me out. I wasn’t in control and I didn’t understand what was going on. In fact I regularly wrote Kat messages saying that I didn’t understand what she was doing. She was very patient and explained everything to me. She even drew me some diagrams which really helped. In fact a few people drew me trachy diagrams, I have three in total in my books. At this time I think I was still falling asleep mid conversation but regardless, Kat taking the time to explain everything to me was very reassuring.

After you’ve had it in for a while they start going through the steps to take it out, weaning you off it, which can take many days. I started the process before I had to go back in to surgery the second time, but had to start again from there. It was 6 days between second surgery and getting it out. I don’t think I would have lasted much longer.

Of course you can’t talk with a tracheostomy. This is the most obvious effect of it. It goes in below your vocal chords and seals everything off – no air rushes past to make noise. Not great when you’re straight out of surgery. Also means making friends is harder (although maybe people liked me more this way).

Firstly, the tube irritated me so much. I’ve always been quite a cougher, often quite wheezy and irritated. This was like the ultimate. And you can’t cough with a trachy. You can try, and it just makes a horrible hoarse sound and just irritates more.

I also could often hear mucus in my breathing which stressed me out and I wanted them to suction it out for me but they didn’t seem too bothered. Weird.

I had a constant struggle with nurses over clearing the trachy. They have this super long suction tube which they shove miles down inside your trachy and would almost kill me with coughing for a good 15 minutes. I hated that one and it was never necessary. Alternatively, I could cough up whatever was in there and they could just suction it out the end of the tube. No dramas. But they all preferred the first and insisted on doing it. A few of my special nurses got it though. They had my back.

Every time I coughed, the trachy also pulled on the stitches holding it in which hurt, and there was often mucus and blood that came out onto my neck when I coughed which I hated so much (who would like it…)

So day 2 post second surgery it was time to take the first step with the trachy – deflate the cuff around the tube itself. This allows some air to flow through. Unfortunately this required sticking the long thing through the trachy which sent me into a tremendous coughing fit and Kat decided I wasn’t ready so the cuff went back up. This didn’t fit well with my obsession to be always moving forward, but I was tired so I didn’t complain too much. Kat also knew how much I liked to progress so she was pretty good at managing my disappointment if I ever didn’t.

The following day we did it again and I did a lot better, though lots of coughing still ensued. They also changed to a different inner tube at this point.

The funny thing is, coughing is usually a sign that you’re not ready to progress to the next step. My coughing was my body screaming for the bastard to be taken out.

The day after, it was time for the important step – the speaking valve!!! This allows air to still come in through the trachy, but it goes out through your mouth, therefore passing your vocal chords, therefore allowing you to talk. And amazingly, cough! It was a dream!!! I got the valve in and mum and dad came to visit shortly after. Kat passed them coming in as she was leaving and mentioned that there was a surprise waiting for them but she wouldn’t say what.

They came in.
‘Hello’ they said.
‘HELLO!!!’ I replied.
For a moment it didn’t register with mum. ‘Did you just speak?’ Asked Dad.
That was fun.

The second I got that speaking valve in everything felt better. I could also swallow. I’d accidentally been swallowing over the day or so before this and it felt like it was pushing mucus and blood into my nose and ears (I don’t know if that’s actually a thing but either way it wasn’t nice). But now I could swallow and talk. Phew. Usually you would only have the speaking valve on for a short period of time at the beginning but I kept mine on full time. It felt so much better.

Kat had never heard my voice. I was excited and talking at a thousand miles an hour, forgetting that as I had a huge new mound of skin in my mouth, no teeth and an entirely blocked nose, I was pretty difficult to understand. Once again she resumed the role of telling me to slow down, but for different reasons this time. One of the speech therapists was there too. When she heard my voice she asked me where I was from. People don’t usually realise I’m a foreigner! How did she mange to do it amidst my compromised speech?! She was from America, maybe expats are particularly tuned in to accents that aren’t quite British. Or maybe it was due to her being a speech therapist, I suppose she’s used to dealing with language and how words are formed.

By this stage we had all worked out that the sooner we got this thing out, the better. So after two nights with the speaking valve, it was decided it could come out. This had another implication too – that my surgeons were feeling confident that I wouldn’t have to go back in to surgery.

Taking it out was an interesting affair. I wanted Kat to take it out as she was my bestie and we’d been through so much together. But there was a nurse who wanted to have a go. Andrew was also there, my surgical clinical nurse specialist.

I’m always happy to let someone have a go, everyone needs to learn sometime, but this was one of the most heavy handed nurses I’ve come across. She was lovely, just didn’t have a very delicate touch. But Kat was there too, to help, to explain things to me as we went, to hold my hand when it hurt.

My goodness did I cough. They had to hold the trachy while they cut out the sutures and I couldn’t stop coughing. Especially when the nurse took over holding the trachy and she pushed me down on the bed with how hard she was holding it, I remember staring up in fear. Andrew seemed to realise and stepped in to do it quickly. I tried really hard not to cough, I tried to be good. I mostly failed.

In the end, actually taking the trachy out was the least difficult part. I didn’t even notice when they pulled it out of my neck, except for the fact that I miraculously stopped coughing. They told me it was out and I suddenly realised I was breathing through my mouth again. I lay there smiling, a look of bliss on my face. Kat was checking the oxygen level in my blood. All good. ‘Are you ok?’ She asked. I beamed up at her, nodded and gave her a thumbs up. It was like I was in a dream. I was floating on clouds.

They dressed the wound and explained to me that I would need to put my hand on the hole whenever I tried to talk or cough, because until it healed, I had a rather large hole in my neck. In fact I woke up during the night that night and realised that I was suddenly breathing through my neck again and needed to get it re-dressed.

So many people who saw me after that commented excitedly on how my trachy was out. They all knew how much it bothered me. This was a good day. This felt like a win.

Trachy drawing:

Hole in my neck after getting it out:

Meet my Surgeons (otherwise known as best friends)

I think it is time to introduce you all to my surgeons. These guys honestly became my life line, they felt like my best friends – visiting me each day, telling me things were going well… I knew they were looking out for me. They didn’t all visit me every time, sometimes a lot of them would come, sometimes just one. Sometimes they would have a few other people with them who I didn’t know, I could only guess they were either training or maybe the ward doctors. Sarcomas are usually dealt with in teams, I’m told. Well, here are the main players in mine.

Mr K(alavrezos) – The head of my surgical team. Smiley, clever, somewhat foreboding (I suppose you could say realistic, but he does tend to focus on extreme scenarios), to the point. I like him. He has a certain way about him and I think sometimes we annoy each other, but really he’s amazing. And I really appreciate how direct he is about things. That’s what I want from my surgeon. I also very much respect that he cares about how the surgery will affect the patient aesthetically. He places cuts in areas where the patient would usually have lines in order to disguise them as well as possible. He really does care about his patients. People speak so highly of him and his team, and for good reason. I didn’t see a lot of him when I was in hospital as he went on holiday after my surgery, I think he visited me twice, once before he went away and once when he got back. I do know, however, that he was still in contact with the team about me while he was on holiday.
He was still away when I was rushed back into surgery, so for the second round, the onus was put on…

Mr Liew – He was also a part of my first surgery I believe. There were a lot of surgeons involved so I honestly don’t know how it all worked logistically, makes sense to have a different surgeon for the shoulder/leg and the face I guess… I really wish I knew more about the details. Either way, Mr K. and Mr Liew are the two consultant Maxillofacial Head and Neck surgeons. Mr Liew is such a genuinely lovely guy. Fairly quietly spoken, he’s happy to stand at the back and let other people do their thing, but he says all the right things when he needs to. I enjoyed his visits, he came by quite often. I remember one night another member of the team came in on his own and called Mr Liew about something (they were worried about me that day), and he asked if we wouldn’t mind waiting a few moments – he was in clinic or something and dropped what he was doing to come and look at me. I appreciated that.

Deepti – My absolute hero. Whenever I saw her, whenever I heard her voice, I felt happy. She gave me energy, when I woke up each morning I was motivated by the thought of seeing her and wanted to look my best for her. When I had those days at my absolute worst when I wasn’t really able to look after myself and I was covered in blood in the morning when she came in, she rallied the nurses to clean me up; once she saw me clean, she said she wanted to see me like that every day. By this point I was more capable of sorting myself out and had my own room. I got together my 2 hour morning routine, and got into the habit of asking for a clean gown the night before so I was ready (once I got the last of my drains out I switched to wearing my own clothes – another suggestion from Deepti). These little suggestions from her really helped me to feel a bit more human. I have so much respect for her. She is the most perfect mix of professionalism and compassion. She was the one who called my parents after the surgery, she visited me the most, she was usually the one who decided when drains or stitches would come out, she told the nurses what needed to happen, she usually did the Doppler checks, she was even the one (fast forwarding a bit, we’ll get to it soon) who told me I could go home and took out my feeding tube. She was the one I looked to for reassurance that things were ok. I remember seeing her just before I went into surgery the first time and she squeezed my leg in a reassuring way that made me relax. I honestly can’t even express how much I appreciated her all the way through – from before the surgery when she made time to talk me through everything, to every visit when I was in hospital when she gave me reason to smile no matter how bad I was feeling (maybe with the exception of one day – the morning after the first night in the ward, second time around), to seeing her when I went back to clinic after I had left hospital.

Claire – I met Claire just before my surgery, she ‘consented’ me, meaning she talked me through all the aspects of the surgery (and possibilities) and I gave them consent to do what they needed to. She was so lovely, so personable, after my previous appointment had been a bit of a full-on one with Mr K, it was so nice to have Claire talk me through everything in a more… human way, rather than complex surgical details. Seeing her visit when I was in hospital made me smile (I’ll be sounding like a broken record here because seeing any of these guys made me smile), and I remember seeing her right before the first surgery too, and she gave me a big smile and I really felt I was amongst friends who would protect me, who were there for me to make sure I got through ok.

Payam – I didn’t meet him until after surgery but he very quickly became one of my best friends too. His smile, sense of humour and positive attitude made him a lot of fun to be around. He was very nice, we had some good chats. When I saw him in clinic when I went in for a check-up, 4 days after I left hospital, he came and got me from then waiting room and I said ‘I’ve missed you!’, and it was true!

These guys made me feel like the most important person in the world, they were my team, I was their priority, they were there to make sure I was ok. If they can make every person feel like that, that is amazing. No matter how bad I was feeling, seeing any one of these people brightened me up. They prescribed things to make me better as required, they gave me the good news each day that my flap was doing well (except for the day it was worse of course and I had to go back into surgery, but then I knew they were there, which reassured me), they were the people who knew what was going on.

I trusted them. With my life. And they treated it well.

Struggles and some gory details…

At this point I was waking up every morning not able to open my eyes, as well as being cold, wet and covered in blood. It was pretty grim. I couldn’t breathe through my nose or close my mouth. I had blood and yellow discharge streaming out of my nose, and blood and saliva running constantly out of my mouth. Managing it during the day was a full time job and the lack of management during the night meant that I was a terrifying scene when I woke up. After the 6am drugs and check of observations (blood pressure, temperature etc.), I would treat myself to a shower in my private bathroom. I wanted to look half decent decent before my doctors showed up for their morning rounds, so this was the first step in my 2hr morning routine to get to that point.

I didn’t attempt showering until I got the last of my drains removed. From each surgery, I had new wounds, each of them had drains coming out of them, and little bottles for them to drain into. I had 4 in total – two from my shoulder, two from my neck. It felt so good when I finally got the last one out because I no longer had something permanently attached to me. I think it was maybe my second day in my private room in the ward (Wednesday) that I got it out. Then I was able to shower and wear my own clothes.

When I say shower, I use that word lightly. I had a big fluffy bandage on my left leg, a dressing on my shoulder and a trachy in my neck. This gave me a diagonal line that was ok to wash – my right leg, most of my torso and my left shoulder… Ok…

Double layer of plastic bags tied over my leg, shower head taken off the shower rail, towel over my left shoulder. Use the shower head to soak the towel over my shoulder, nice and warm. Turn the shower head around and point it over my one good leg, use the reflective back as a mirror and start trying to clean my face. When the towel got cold, re-wet, then continue cleaning face. I had a system going. (A few days later when they took my bandage off and removed the dressing from my shoulder I was allowed an almost normal shower and I hardly knew myself. I was having 2 showers a day at that point).

Then after the shower, I would start cleaning my nose, moisturising my face, putting my hydrocortisone cream on, more cream on my lips, cleaning my eyes… By the time the doctors came around I looked like an entirely different person from the monster I had woken up as. As well as looking better and thus feeling a bit better, this also gave me a great sense of achievement.

These are the gory details you totally want to know about this time.

* I found a way to get a tissue so I could put one end in my mouth and poke the other ends in my nose so that it would catch everything that was dripping for a few minutes so I wouldn’t have to worry about it.

* I tried a few different approaches but eventually settled on tying a towel around my neck every night to catch all the blood. I secured it with a little pair of blue scissors which was actually a clamp.

* I went through packets of tissues, paper towels, I dribbled on everything I owned (and washed my shirts in the sink and hung them up overnight), then I changed my approach and used a towel to try and catch it all during the day too.

* I was coughing all the time. Sometimes when I coughed, mucus came out through the outside of my tracheostomy and sat on my neck… I’m sorry, this is all pretty gross.

* My feed was making me feel nauseous, and that combined with the flap feeling so huge in my mouth, right at the back of my throat, and the fact that I was coughing all the time meant that I was gagging regularly, dry heaving.

* I had a horrible taste in my mouth. I hadn’t brushed my teeth in ages, and it had gone through two surgeries and had a lot done to it. The most I could do was soak a little pink sponge in water and put it gently in my mouth, making sure I didn’t touch it on the flap too much.

Ugh I think that’s enough for now. Thanks for listening.