Bumpy night, good morning

Had an absolutely awful night last night, I just could not get to sleep. I switched the light off at 11pm and spent 3 hours tossing and turning. I tried meditation, sleep apps, restful music, ASMR, I even got my Neal’s Yard pulse point roller ball out and tried to imagine I was in a spa, but my mind was having none of it. At 2am I got up and dragged my bleary-eyed self to the nurses’ station, where I asked for promethazine. This is basically Night Nurse for those in the know, and I took some decades ago, it completely knocked me out and I slept like a baby. I wanted that again. Except they didn’t have any, so they gave me a sleeping pill instead, half the regular dose as I have never taken one, but I was willing to try anything at that stage. 

I took it at 2am and raced into bed expecting to be falling over with drowsiness before I made it to bed, but I was still lying looking at the clock at 3am and 4am. Maybe I am immune to sleeping meds?! I must have drifted off shortly after that, but then was woken up at 5.30am by the nurse coming to do my obs, and again for my meds at 6am, and then for breakfast at 7am. Remarkably I didn’t feel groggy or like a zombie, as I had expected from the tablet, but then again it would appear to have had zero effect on me and I’d say there’s a mighty good chance I would have fallen asleep by 4am even without the tablet. I probably won’t be trying that one again.

Despite the bumpy night, this morning has been positive. Firstly, I ate a WHOLE Weetabix! Drowned in milk of course to make it practically drinkable, but still. Weetabix has always been a go-to breakfast for me so that made me happy. Plus I’ve been craving proper carbs after all the yoghurts and milky drinks I’ve had to endure. On the subject of carbs, as I lay awake pondering the mysteries of the universe at 3am, I felt hungry and realised I needed to try to eat more substantial foods today. What I really fancied was hot fluffy toast slathered in melting butter. Crisp and warm and soft and salty all at the same time. Can you tell I am missing toast?! So this morning at 7am when I was rudely awakened and asked what I would like for breakfast, I instantly asked for hot buttered toast. Now, for those who know, hospital food is hardly gourmet cuisine. This is an NHS hospital and the food is NHS standard. Sadly this is not BUPA! I got toast, but standard white bread with butter, and all a bit overdone for my extremely sensitive mouth. However, it didn’t stop me from trying a few tactics to get a taste – I tried dipping the toast into a glass of milk and sucking the butter and milk (sort of worked, but I couldn’t chew it), and I also tried licking the butter straight off the toast (less successful as the crumbs made things tricky). In the end I gave up on the toast but will give it another try soon.

I also finally had my NG tube removed! Feels so good to be rid of it. My neck scar is looking pretty good too. So now just the drain left to go. My consultant said it starts off as a dark red – think of a nice Shiraz – and gets lighter and lighter and when it’s the colour of a nice rosé they can take it out. Mine currently resembles Fanta – not sure which direction that means I’m going in.

Party tricks

I really struggled to sleep last night, I seemed to have full on insomnia and sleep eluded me through most of the early hours. Despite the lack of sleep, I seem to have woken up not feeling too bad, in fact, feeling pretty determined, so I just ploughed through a whole yoghurt and a glass of water for breakfast.

The consultant came in today and said if I managed to eat my lunch and drink enough water they could potentially take out the feeding tube. I absolutely hate the tube. It sticks out of my nose, protrudes into the air and is generally in the way, not to mention I can feel it at the back of my throat when I swallow, and it also stops me being able to eat and drink normally as it’s in the way of my mouth. So I would really like to get rid of the pesky thing. However, I have been using it to take meds and that has been a godsend, but they won’t let me keep it just for meds, so I have to now learn to take those orally, which is another new challenge in itself. Trying to drink fizzing paracetamol from a cup that I can only half access is not a good start, but when I try to swallow a tiny sip the liquid streams out of my nose. It’s a pretty good party trick but one I could have done with about 25 years ago really as I’m not sure anyone would appreciate a 47 year old woman doing that at a dinner party. Not that I go to dinner parties any more either – and certainly won’t be now for some time! Not unless anyone wants the comedy of watching me spend 3 hours trying to drink a shot size cup of medication whilst tilting my head to the left and ‘chewing’ the liquid to stop it coming out of my nose. No takers? Funny that!

Had mum come to visit again today which was lovely, she patiently sat through the tedium of my lunch time. I did manage to get dressed and out for a quick walk today too. Was nice to feel human again, even if I do still have to carry around a sports bottle filled with my own blood ☹

Tubes and drains

It has been 2 days since the operation. The surgery went smoothly, the surgeons got 2-3mm clean margins, removed a 26mm tumour and dissected my neck. My post-op recovery wasn’t great, the op finished at 1.30pm but I wasn’t moved to the ward until closer to 5.30pm because I was so sick. I think it was because they gave me so much Fentanyl, which made me nauseous. I wasn’t really fit for anything that evening other than sleep. My neck wound isn’t as bad as I expected, so that’s a positive. I am attached to so many tubes and wires – a catheter, an NG tube, 2 cannulas and a neck drain. Even though I was told about this, I hadn’t really paid any attention if I’m honest, as I didn’t know what any of it meant. But now I do! I can’t get out of bed because of all of my attachments, and the drain is a particular challenge because I’m worried I’ll forget about it and accidentally tear it out of my neck. Yuk. The NG tube is very uncomfortable and I can feel the tube at the back of my throat. I’m not using it to eat or drink just yet but it’s there in case I need it. 

Yesterday I felt okay, I tried eating and drinking but it was so hard because liquids just came straight out through my nose and there was no longer a ‘seal’ at the back of my mouth to be able to swallow, which meant I aspirated everything. The Speech and Language therapist came to see me and said my body would learn to adjust to accommodate the changes, but that was hard to hear as I couldn’t imagine how that could possibly work, not to mention how long that might take. 

The lovely anaesthetist came to see me and asked about the cat 😊

Mum and Dave also came to visit and brought me a calippo which was much needed – and something I could actually eat without aspirating.

Today though, I am feeling a lot worse. I woke up without a voice and in a lot of pain. I don’t think two days of no food or drink are helping, I love my food and I think my body needs it to be happy! I’ve been a bit tearful this morning as I felt somewhat abandoned by the team. It often seems to be the case when the staff change shift. My night nurse looks after me really well but when she leaves, there seems to be a lack of care for a while. Today they are short-staffed so I had to ask for my meds and water and, reluctantly, some Ensure via the tube as I’m not managing to eat or drink anything and I’m feeling pretty weak.

Since I asked for some help, though, I’m feeling a lot better. Mum came to visit again and brought me a magazine, although I have to say it’s hard to flick through the glossy pages looking at everyone else’s perfect lives while I’m stuck in hospital with multiple tubes hanging out of me. Maybe I should just watch disaster movies from now on so that my life seems better in comparison?!

This evening I drank some Lucozade! This is a huge step forward for me. Not only because it tastes a heck of a lot nicer than the sickly meal replacement shakes I’ve been drinking, but also because being able to drink bubbles is a first positive step towards being able to drink champagne again one day! Hoorah! I overdid it after a few sips though and had a very unpleasant experience of it fizzing out of my nose.

A very nice speech therapist came in earlier to tell me to try to tilt my head to the left to swallow (the opposite side to my surgery). This seems to work reasonably well; I’ve managed 1.5 cups of water, an Ensure shake and the Lucozade so I’m pleased with that. Eating hasn’t been as successful today, I tried some mash earlier and managed a few forkfuls but the effort enormously outweighs the benefit at this stage (and there is zero pleasure, food is purely functional for me just now while it’s all puréed and mushy). Still, today started off a bit rubbish and I had a few cries because it all felt too much, but over the course of 12 hours I feel I’ve made some real progress so that’s all positive, and those baby steps will push me forward to keep going tomorrow too.



Oh and the cat is doing well too :-)

Goodbye tumour

Today is the day – I’m going to say farewell to the horrid tumour. I’m actually going to say it in very different words but my parents and/or children might read this so I won’t swear.

I barely slept last night, I kept dreaming about throwing up porridge in car parks, very bizarre. I am sitting in the pre-op room now, writing this on my phone, waiting to be called. Apparently I’m first on the list. I have no idea if that’s a good thing – because the surgeon will be well-slept and ready for work - or bad thing, because maybe he didn’t sleep well and he’ll muddle through the first few operations?!) - but either way it must mean I don’t have to wait long.

The 5am alarm was brutal, especially when that same alarm was meant to be my call for Palma today. I’m trying so hard to stay positive. So many friends and family have reached out to wish me well and it means so much to have such amazing support. I am feeling strong, scared, but positive. First step towards hopefully becoming cancer free. Still keeping my eye on the prize – this time potentially a holiday if I can recover quickly enough.

Two songs are popping into my head – Chumbawumba ‘I get knocked down, but I get up again’ and Gabrielle’s Rise – now I’m ready to rise again. That will hopefully be me soon, back to myself, likely a different me from before cancer, but still me.

A doctor just came in and drew an arrow on my neck – cut here. Slightly concerning that they are using felt tip pens and guesswork to know where to slice my neck!! Afterwards, I touched my unscarred neck to remember life before cancer. And I had to read a quote that I found recently, that helped me to focus:

The place you are in now is a place you are passing through, not a place you are staying. There are better days ahead. You will find that you are tougher than you realise, possibly tougher than you ever thought possible.

Let’s hope so.

All about the feline

I had fully intended to get organised and packed for my surgery yesterday so that I could find a moment of headspace before it all begins. I had visions of a delicious al fresco breakfast, some quality time hanging out with the pets, a nice long walk with the dog. The reality was very different. 

Never mind silly old cancer, the cat decided he would steal the limelight and make sure I didn't have time to even think about my own impending surgery. I mentioned our Ragdoll Cosmo had decided to eat the rubber matting in the garage last night and was sick. He still wasn’t right this morning so I called the vet who asked me to bring him in. I did this in the morning, and they wanted to run some tests so kept him in for the day. After I had dropped him, I had to drive to the hospital in Oxford (another 2.5 hour round trip) to have my pre-op assessment and meet my anaesthetist.

Turns out he’s a lovely man, similar age to me and also has kids. He brought a tear to my eye when he said he really felt for me when he read my notes, as we are at the same life stage. He also has pets, so we spent quite a lot of time talking about the cat and how inconsiderate he had been to eat the rubber matting right before I was admitted for major surgery. While I was having blood taken, my phone rang and it was the vet hospital telling me Cosmo needed to be brought in for emergency surgery as they had found an abdominal blockage. You just couldn’t make it up. As I was busy preparing for my own surgery miles away, I had to call my mum, who luckily was on her way to our house, to ask her to pick up the cat from the vet and take him straight to the vet hospital for an emergency operation that day.

 Cat sorted, I hung up and got back to the anaesthetist who asked how I was feeling. I replied, “Fine, but more importantly, how are you feeling, you’re the one who has to keep me alive for 5 hours tomorrow, no pressure!” He replied “Oh I’m fine, I’ve got a bottle of whiskey in my bag for tonight to help me sleep!” Assuming that was a joke (!!), he really did put me at ease which was helpful ahead of the big day.

2 days to go

Two days before my surgery. I am really starting to feel worried about it. Up until now it has felt like a distant activity, something that would happen in the future and nothing to worry about at that present time. Today, however, I am feeling the reality hit me. I am worried about the level of pain I will experience. I’m worried about being away from my family. I’m worried about the complications that might arise. I am worried about so many things. It’s not helped this morning that the cat has decided to eat a load of rubber matting from the garage and has been sick. So on top of everything else, I need to squeeze in a vet appointment in my schedule. I haven’t even packed yet. And the worst thing is I can’t get out of my head that this week I was meant to be packing to go on a girls’ trip to Palma with some of my good friends. Instead, I am packing to go into hospital to have a tumour removed from my throat. It just feels so cruel.

I think part of the challenge is that I have no idea what to expect after surgery. I am on a number of different groups online, helpful forums and blogs of people who have been through this experience and come out the other side. These people are really great at giving me hope for the future, they are also very good at showing me the reality of the journey ahead. I am definitely one of those people who would rather know what’s coming so that I can prepare myself mentally for it, rather than have a surprise on the day. But I don’t think anything can prepare you for what’s to come in a situation like this. There are so many potential complications that might arise from this, because we are talking about my throat, the thing you need every day - to breathe, to eat, to swallow, to taste, to speak - makes it all the harder to think about. I have made a great friend online who has been through the same thing though, and she is really helping me which is very reassuring.

I am probably I’m as prepared as I can be. Mentally that is. Now I just need to get physically prepared – starting with packing a bag. I hate packing for a sunny holiday and always leave it until the last minute, so I am in no hurry to pack for a hospital stay. I have images in my mind of Deborah James (aka Bowelbabe - RIP) and all her glamourous hospital snaps, in make up and heels and floaty skirts. But I don't have the energy or inclination for any of that so it's PJs and joggers for me. And really now it’s just a case of getting through the next two days, trying not to focus too much on what’s ahead, trying to enjoy my last two days of feeling normal and being pain-free before things become much harder. I am trying so hard to keep hope in the back of my mind throughout all of this. Hope that I am not the one who has complications. Hope that I am the one who gets through this and recovers quickly. Hope that I can tolerate and manage the pain throughout the recovery. Hope that I am not one of the 10% whose tonsil cancer comes back. Hope for a more positive future.

On the plus side, I feel like I’ve really made the most of this last week of what is effectively freedom from pain, and I’ve kept myself busy doing things that make me happy. A good friend popped over with an amazing goodie box full of lovely new PJs, books and other fab treats. I have been to a spa in the glorious sunshine, although disappointingly they wouldn’t do a spa treatment because they told me that massage increases the risk of spreading the cancer via the lymph nodes. It turns out, according to my consultant and Cancer Research UK, that this isn’t true so I’m a bit annoyed that I didn’t get to have a massage, but on the plus side I did get to lie by the pool in the glorious sunshine and relax for an afternoon, which was lovely. I’ve also been for a really lovely champagne breakfast with one of my very good friends, again sitting outside, and a lovely lunch outside in the sunshine by the river last week too. And then I also went out for an eight-course tasting menu at Lumiere in Cheltenham with Rich, which was really delicious and lovely to get out of the house – and out of my head - for a while.

Somehow I also, rather insanely, allowed S to have a big party at our house to celebrate the end of her Year 10 exams. We were so lucky that the weather was good on Friday, so they all sat out in the garden the whole evening and barely came into the house, meaning the party was a success and I could breathe again given the house wasn’t ruined! And finally we went out for a delicious Sunday roast yesterday for Father’s Day. I thoroughly enjoyed eating my Yorkshires and roasties as I may not be eating those for a while – again, it’s so funny how we take these things for granted, and then suddenly I may not be able to eat them anymore.

I hope to be able to look back on these positive memories through treatment, when things feel at their worst, and cherish the good times that I’ve had with all the special people who spent it with me over the last week. It’s these little moments that mean so much when you are facing cancer treatment, so a huge thank you to everyone who has helped me through it so far.

 

Palma, podcasts and pampering

Having opted for surgery a few days ago, I still don’t have a date. I’m told it’s highly likely to be next Weds 22^nd June. The day I was meant to be flying to Palma de Mallorca for a much-needed girls break, having not been for last 3 years due to Covid and other issues. Instead of getting on a plane with my friends for a sunshine-and-rose-fuelled mini break, I will be wheeled into an operating theatre where my mouth will be clamped open for 5 hours while TWO highly experienced surgeons manoeuvre a robot to cut out the tumour lurking behind my right tonsil. To be on the safe side, they will also take some of the tissue in my soft palate and the back of my tongue. This is called ‘clean margins’ – meaning any potential escaped cancer cells will also be removed. I can’t bear the thought of having my tongue cut, it brings me out in a cold sweat and makes me feel faint, so all I can do at this stage is quite literally block out the thought of it every time it pops into my head. 

When they have finished with the throat, they will start on my neck. They will perform a selective neck dissection, in which 3 levels of lymph nodes will be removed, again, to try to make sure it has all been removed. All of the images of neck dissections show huge Frankenstein-style scars going across the neck like a horror movie. Honestly, I’m trying so hard not to think about all of this as it makes me feel really queasy. I just hope it goes smoothly and the recovery isn’t too hard, although I suspect it will be far from a walk in the park.

I have been listening a lot to the podcast ‘You, Me and the Big C’ recently. A good friend started listening to it and suddenly seemed to know a whole lot about cancer and how I’m feeling, which I thought was just awesome, and much needed, when so many people really struggle to know what to say. So I decided to have a listen too, and I have to say, while it’s concerning that 2 of the 3 original presenters haven’t survived their cancer, it’s incredibly enlightening and informative, and really helps me to process some of the emotions I have been feeling. If anything, I feel ashamed that I didn’t listen to it before my diagnosis. So many people have this horrific disease and yet I didn’t even know the podcast existed until now. Given 1 in 2 of us will now have cancer in our lifetime, I highly recommend everyone listens to it if they can – when out for a walk, on the bus or in the car, having a morning coffee – it’s definitely a good way to understand how it feels to have cancer and how you can best support friends and family going through treatment for this awful disease (it's not a depressing podcast, it's rather like being in the pub with good friends and having a good chat).

I had my 4^th Covid jab today. Ordinarily I wouldn’t need it, because when I last checked I was neither 75 nor immunosuppressed. But sadly (and scarily) I am about to become just that (immunosuppressed, not 75), so I’ve had it early to hopefully avoid getting Covid over the coming months and just focus on combating the other more serious C-word instead.

On the plus side, with a whole week until surgery, and the weather being amazing this week, I have booked myself a half-day spa tomorrow at Lucknam Park. I need every bit of positivity I can get right now, and lying next to a pool, with a coffee and croissant, with the sun shining, before a nice massage, will be good tonic for me (sadly no gin with that tonic as I’ll be driving!). I can’t undo the cancer just yet, but I can make the most of this next week and fill it with things that make me happy. That said, I’m finding I’m so exhausted at the moment it’s a huge effort to even get out of bed in the morning, so not sure I will manage much else beyond my spa day, but at least the sun will be shining and I am alive.

To cut, burn or poison? That is the question

Tick tock. The waiting has been so difficult. Every minute feels like an hour. Or longer. The days all blend into one continuous stretch of time. Tick. Tock. We made the decision last week. I say we, and Rich seems to think it was me that made the decision. But I don’t feel like it was my decision. Rich and I sat with the MDT - multi-disciplinary team (surgeon, oncologist, nurse etc.) and walked through the different options. We likened it to being given a choice - you need to be run over, but you can choose a truck or a train. Both will be horrific, but you have to choose one. The good news is there’s a very good chance you will survive. But you still have to choose one of these horrific paths.

Honestly, it is impossible. How can you choose? Should I opt for surgery, which could leave me with muscle weakness, nerve damage, swallowing and possibly speech problems, as they will need to take some of my tongue to get ‘clear margins’ or do I choose chemoradiation, which has been described to me as ‘not for the faint hearted’ because it consists of 30 radiation sessions over 6 weeks, as well as 3 high strength chemo sessions. Again, the outcome is similar – loss of saliva, loss of taste, immense pain and loss of ability to swallow and therefore eat. Not to mention there’s a good chance I will need both. Gulp.

In the end I decide on surgery, partly because I feel I want this massive alien tonsil removed asap, but also because I am curious about the ‘equivocal’ node. Rather than just blitz the whole area, I would prefer to know for sure if the node is cancerous. I have no idea if this is the right decision. My consultant says both options are good for me. So I have taken the plunge and opted for removal of the tonsil tumour, some of the back of my tongue and some soft palate, all done with a trans oral robot, and a selective neck dissection where 3 levels of my neck lymph nodes will be removed. It all sounds utterly terrifying. But the cancer will be gone – I must keep my eye on the prize.

This is immensely cruel for anyone going through this. But for someone who absolutely loves good food, wine and company, as well as talking and the odd spot of singing, it is sheer torture. I can’t even begin to imagine what this journey will be like. Although I actually do have an inkling, because I am on endless forums and groups where people who are all in the same boat speak openly about their experiences and share hints and tips on how to prepare and how to get through it. As if it were a camping trip that you simply need to stock up for and get through. I wish!

And so it is that I am now sitting here, enjoying a glass of wine as though I am at the Last Supper. I fear life will never be the same on the other side. And that even if – fingers and toes and everything else I have that is crossable crossed – I am lucky enough to be one of the 8 or 9 out of 10 people who recover fully from this cancer, my life as I know it will never be the same. Cancer is wake up call. You can never be the same. I’m told you are always looking over your shoulder, wondering if it will creep up on you again.

Here is the odd thing about cancer. I feel exceptionally grateful and lucky right now. I have an early stage, treatable, even curable cancer. The odds are good. It is apparently one of the best cancers to have – who even knew there was such a thing as a ‘good’ cancer? But – and there’s always a but – I have cancer. There are no two ways about it. I have cancer. You almost have to repeat it to yourself over and over as you walk down the street. It feels oddly like being pregnant, that feeling of having something not everyone has, and of being somehow ‘special’. And yet, this is not a good special. It is a truly horrible feeling, even when you are told the odds are in your favour.