So send your love…

Additional to the ongoing things I’m having to deal with that I mentioned in my previous post, is the itching.

When I came out of surgery, pretty much my whole face was numb. Nerve damage. I was told it would come back, but it would take time.

After a few days, parts of my numb face would itch. And I mean REALLY itch. I’ve never felt anything itch like this. And I would try to itch. But no matter how much I scratched the skin where it was itching, it wouldn’t satisfy the itch in the slightest – I couldn’t even feel that I was itching it. Nightmare!

I suppose it was the nerves coming back that made it itch. As the feeling came back to parts of my face, I found that I could satisfy the itch in the places I could feel my fingers scratching, but not in the places I couldn’t! Curious!

As I write, I can feel all of my face except my top lip, and a patch that runs down from my right eye to the top of my lip. The itch comes and goes, but I can guarantee that when it’s there, it’s more intense than any itch ever.

Anyway, enough about me! Some of you might remember my friend Katrina? She’s the one who saved me so much struggle when I had to go back to doing my own injections, by sharing her brilliant tips with me! She’s also brought me back to earth with her logic many times when I’ve been bothered by things (mainly because she’s had all the same worries and has rationalised them for herself!)

Having someone going through the same thing as you can be infinitely important.

So Katrina went in for her operation about a month after I did. Her osteosarcoma was in her pelvis, so she has a whole different set of problems and issues. But we had treatment at the same time and surgery at around the same time. I thought you would like to know she is recovering well. Another long path, fraught with difficulties like infection (Which I’m lucky I avoided) and not being able to walk (!), but she is heading in the right direction! Hopefully her walking will be without a limp in the future.

You try to stay away from comparing yourself to other people going through similar things, but it’s difficult to stay entirely away from it. I think of Katrina and think ‘gosh I’m so lucky I’ve at least been able to walk fine…I could take myself to the pub!!!!’ (As you may have realised, going to the pub signified normalcy for me). But then Katrina looks at me and thinks ‘gosh, I’m lucky to be able to still eat and thank goodness I didn’t have to go into surgery twice and that my face is fine’! People’s perspective on these things are interesting. I’ve even had friends with terminal cancer feel lucky they’re not dealing with what I have, whereas I obviously feel the opposite.

Katrina and I have another friend who we were treated alongside who went in for his surgery in the last few weeks and he has been less fortunate than we.

His osteosarcoma was in his lower jaw. You forget that all those horrible things they warned me about before my surgery are possibilities. You always think you’ll be ok (at least I do). That you’ll be in the group of people for whom it goes smoothly for. Well mine didn’t go smoothly. If you remember, my flap failed after 5 days. They have no idea why it failed and no one has ever had this problem so long after surgery before – it usually happens within 48 hours and they usually know why. But they saved mine. They apparently had a 6hr period after fail to save it and they must have got in just in time and put the vein from my leg in there. Eternally grateful. I should buy more lottery tickets.

But they warned that the flap could fail right from the beginning. That it was a very real scenario. That I had to prepare myself for waking up and they wouldn’t have succeeded. And then what? They would look to prosthetics. Still a solution but not the intended one. Unfortunately this is what he is facing.

So please send your love and support. Because there are people trying to make sense of the impossible, trying to fix the problematic. And there will be a solution for him. And it will be fine. But for now, he is left trying to deal with something no one should have to deal with. But we are all here to be strong when he can’t be. To think of him when he feels small and alone. And if you’re reading this my friend, please know there is a whole army behind you. Both here, and in hospital. And you are their first priority. It is horrible but it will be ok in one way or another (I know it might not feel like it right now). Because that is the only thing we will accept.

Time for an update I think

It’s hard work, all of this ‘recovery’ business!

It’s now 9 weeks since I went in to hospital and 7 weeks since I got out. I’m starting to feel a little bit better.

Each day I have to do a whole stream of exercises for my shoulder, which I must repeat multiple times throughout the day. Some days it’s too sore to do anything with it but I try to do what I can. I also must stretch my jaw, which is really painful because of the huge ulcer (?) just behind my back teeth that hurts every time I open my mouth. I’ve had it for about 6 weeks now and it is tiring.

I have ongoing appointments with surgeons, oncologists, doctors, dietitians, speech and language therapists… Not to mention many scans. Including another dreaded MRI last Friday (more on that soon).

Not being able to breathe through my nose is tiring too. I was expecting it would get better, but I found out a couple of weeks ago that it was intentionally blocked off and maybe in about a year they’ll look to see if they can do anything to clear it. I can’t really deal with processing that information. Not being able to breathe through your nose is really not nice even for one day, let alone a year. My mouth and throat are constantly dry and burning. I also found out that they took a nerve out in my face and as a result, my mouth will remain drooped on the right hand side. Again, in a year they’ll probably do something to hoist it up a bit.

Also my cheek is attached to the flap. So like… Imagine your cheek was superglued to your teeth for most of the top jaw of your mouth (obviously I have no teeth but that’s how far the flap extends). I keep biting the right hand side of my cheek every time I try to bite anything. Also almost the whole roof of my mouth is filled in to teeth level with flap too. That’s a lot of stuff taking up space in there. Added with not being able to open my mouth very wide. Eating is hard work.

Finally, aside from this is the bloody neuropathy which took a turn for the worst after hospital. The pain was regular and at times unbearable. Every night in bed, the sheets felt like they were stabbing my feet with knives. I would be crying out in pain, it was agonising. Thankfully I managed to sleep through it at times but it would keep me awake until I did, and whenever I woke up, there it was again. It has calmed down in the past couple of weeks. I’m hoping it stays away.

I’ve also lost a lot of hearing in my right ear… Not sure what that’s about.

I’m also weak, I tire easily, and have been tackling a cold over the last week.

So that’s me.

But I’m alive. And the swelling is definitely going down, and my hair getting bushy. I’m even thinking about going back to work soon (if I don’t have to go back into surgery again instead, but more on that soon).

Anyway, here are some progress shots for anyone who hasn’t seen them yet – it’s amazing to see how far I’ve come:

The kindness of strangers

I want to take you back to the Friday before I went in to surgery. I had been at work that day and as the day was drawing to a close, my friend said ‘so… Pub…?’. It was just us three close friends left in the office and it turned out we all had a free night so we finished what we were doing and headed to the local for a few drinks. It was my last day at work for a while and the last time I would see my two friends for some time. We drank wine, we laughed, we forgot everything serious and we were just three friends having some drinks after work on a Friday. It was perfect.

After a few drinks it was time to head home and we had our hugs and goodbyes and I told them I would see them again on the other side. We all went off our own separate ways.

I took my way down to the tube station, a spring in my step. I was tired so I sat while I waited for the train to turn up. A lady sat down next to me. I was playing on my phone like a good millenial does. And my useless neuropathy hands did their usual thing of throwing my phone on the ground. The lady next to me was kind enough to pick it up for me. ‘Sorry’ I said ‘my chemo hands are useless’.

She asked me more about my chemo and cancer and I said that I was going into surgery on the Monday to cut out half my face and rebuild it. I said it was scary but I was keen to be moving forward.

She then reached into her bag and pulled out a little wooden cross. She said it was given to her by an Israeli. She said it had brought her luck over the last few years and now it was time to pass it on to someone else who needed it: me.

I asked her if she was sure and thanked her profusely. And at that moment my train turned up and I had to run. I told her how much it meant to me and thanked her once again as I ran off. I regret my brevity but sometimes moments are fleeting.

I am not religious. In fact I am quite strongly against religion. But the thoughtfulness behind this action absolutely overwhelmed me. I cherish this little cross. And it came with me to hospital and sat on my table next to me for those two weeks. It now sits at my bedside.

These moments of the kindness of strangers are just amazing. I will keep it close by, I think for the next 5 years. I.e. Until I find out the cancer is gone. Then I shall let it choose its next owner and pass on the luck it will have brought me.

Sometimes I feel like I’m in a movie. Life is constantly proving to me how crazy and remarkable it can be.

So no, I’m not religious, spiritual or superstitious, but I believe in people. People never cease to amaze me or make me feel special.

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):