Week 5 - Day 23

I have made it through another week! Now more than 75% through. I feel as though I have been doing radiotherapy forever - I started at the end of August and it's now nearly October! I still have another full week to go, plus two days the following week, but the end definitely feels in sight, as opposed to the end feeling like some distant horizon that I may never reach. The weekdays seem to pass quite quickly now, probably because I have structure and a routine with my appointments and all my meds and rinses, so the biggest challenge right now is getting through the empty weekends, and I still have two of those to get through.

This whole process feels like some sort of horrific endurance test. Perhaps I am going through this in sympathy with all those brave souls who will be running the London Marathon on Sunday. Like running a marathon, having throat radiation also feels like a test of my physical and mental strength. Apparently, the most difficult part of a marathon is somewhere between mile 18 and mile 23. My rough maths tells me this is when you are 70 – 90% through. You know the finish line is close, but it just feels so hard to get there, and the toughest part is yet to come. This is exactly where I am at the moment, although the big difference is that I am lying on the sofa eating scones and clotted cream rather than going out running and fuelling myself with carbs! My good friend, Dan, is running this Sunday in memory of our dear friend Matt, who died far too young - of cancer - four years ago, so I wish him the best of luck. I know Dan will make us all proud, especially Matt.

I was at the hospital for 2 hours today. I started with a consultation with my oncologist for a review of meds. She also checked my throat and said it all looks fine, slightly less raw than last week. I am utterly amazed that my body is already trying to heal, despite being continually burned every day - the human body is incredible. I then got the radiation out of the way, which was again uneventful. I don’t want to speak too soon but I feel I might have made peace with the mask because I no longer have to fight the daily rising panic I used to experience. Rather, I now breathe deeply, focus on the music and try to channel my thoughts to positive ones. Rich was horrified at my music choice today. I asked for Enrique Iglesias ‘Hero’ – and I told the staff I was playing it for them because they are heroes. Every day, they have so much patience and kindness for every patient who freaks out about being bolted down, or has to endure an uncomfortable procedure. They seem to know each of us so well and they remember every detail, every like and dislike, even though we don’t really speak very much other than to get into position and put the mask on. My radiographer today walked in with a Starbucks Frappuccino and when I commented on how appealing the cool, iced drink appeared to my burning throat, he offered it to me (I declined, of course). Such kindness means the world. Anyway, if Rich thinks Enrique is cheesy, I fear next week it may get worse, as I am considering having a ‘karaoke song’ week – all my favourites played out in the mask. The radiographers are all on board with this idea. At least, that’s what they are telling me. Behind my back they are probably calling Rich, begging him to persuade me otherwise. 

After radiotherapy, I then had another acupuncture session. The best part for me is the acupressure massage. Given I am not allowed to have a massage for many months, this is the closest I can get to pampering. I could probably live without being a human pin cushion afterwards, but I'll take whatever I'm offered at the moment, plus it is meant to be good for me (not sure in exactly what way and I was too tired to ask questions today!).

Pain levels are slightly higher today, probably the result of the last 5 days of my throat being fried. Highlights from today's gourmet menu include soggy Rice Krispies, smooth peanut butter on toast, another scone and the inside of a chicken pie. I'm very pleased I am still managing to eat and it's not too painful as long as I take morphine 20 minutes beforehand. Sleeping is becoming more problematic. I think I am sleeping reasonably well, but it’s just not long enough and the alarm is a rude awakening every morning. When treatment finishes, there’s a good chance I may sleep for a whole 24 hours. In fact, it seems to have turned to winter overnight, so very soon I shall be channelling my inner chipmunk and hibernating for the winter.

Week 5 - Day 22

Some days I feel I’m doing reasonably okay in the circumstances, but then I catch a glimpse of myself in the mirror and have to double take. Today was one of those days. I have been ‘fortunate’ to avoid chemotherapy, so I still have my hair, eyebrows and eyelashes. I do not need a head covering. Thankfully, my neck is not yet burned or blistered. In fact, apart from my neck scar, you wouldn’t know I was being treated for cancer. For all intents and purposes I should look pretty normal, at least externally. But when I think back to what ‘normal me’ looked like, it wasn’t this. I haven’t worn make-up in month (no make-up in the mask, and what’s the point in going to all that effort just for the pets?!), the right side of my face is puffy and I have a big Frankenstein style scar on my neck. My nose is constantly dripping blood due to the irritation, so I have an attractive bloody crust around my nostrils. And don’t get me started on the eye bags! I only ever wear jeans and hoodies – these are like my new radiation uniform - because they are comfortable and warm, and also from a practical perspective it’s easy to remove a hoodie for treatment. I wear the same t-shirts every week. I either need to change into a hospital gown each day for treatment, or I can pull the shoulders of my top down so the mask can fit properly. I really couldn’t face the idea of changing into a gown thirty times, so instead I trawled through my wardrobe to find five t-shirts that are either wide-necked or v-necked and that I don’t mind being stretched over my shoulders. I now wear these same tops on rotation every week. You, too, could be sporting 'radiation fashion' soon because these very same tops will be available to purchase at our local charity shop in approximately 8 days. Grab yourself a special bargain! In addition, I have to slather a special gel over my neck and throat 3 times a day to minimise skin burns, so my hair is usually stuck to my neck and it looks as though I haven’t washed it in weeks. So – tired, puffy, greasy, bloody-nosed, scarred and wearing the same clothes. It's a great look! I can only imagine what the hospital staff think of me. I just keep telling myself I am sure they have seen a lot worse.

Given the physical state of me, it’s probably just as well I don’t have any energy to go out and socialise. One month into treatment, though, and I am really missing my old life. I dream about going out for dinner and being able to eat, drink and chat normally. Or going to the cinema and munching effortlessly on popcorn, or popping out for a coffee and not have to drink it lukewarm and chase it with water, because even milk is 'thick'. I have been told by some wise ladies who have been through this awful disease that you should expect this type of cancer to take a year out of your life. Given it has already taken 5 months, I can easily see how it can take many more months to recover. Our mouths and throats are fundamental for so many basic human functions - eating, drinking, speaking, breathing - so to have this area frazzled with radiation is truly brutal. It is no surprise that recovery is a long, difficult road - our taste buds, saliva glands and the various sores and ulcers all need time to heal. The vicious circle is that the mouth is usually very efficient at self-healing, because our saliva is anti-microbial and enables the healing process, but without saliva this healing process can’t happen. I’m lucky to still have a little bit of saliva at this stage, but it’s starting to get more and more dry. 

Pain is staying at around the same level, in that the pain is constant but mostly bearable as long as I keep on top of my medication. Eating is still the most challenging part of the day, so I have come to dread mealtimes and feel relieved when it is over. I am still managing to eat – soggy cornflakes for breakfast (bizarrely these are easier than softened Weetabix or porridge; I would have thought the opposite) and then the cheese soufflé made a guest appearance for lunch today. I also managed part of a warm scone with jam and clotted cream, washed down with lukewarm tea this afternoon. It would have been delicious if I had been able to taste it I'm sure. Dinner was lasagne. I had forgotten about the tomato sauce in a lasagne, and just a sniff of a tomato-based dish is enough to light the throat fire, so it wasn't very successful. I finished with a creme caramel, which slid down very easily even though I couldn't taste it. Never mind, calories are calories. Evenings are always the most difficult meal, and I have a 'Sunday-night-feeling' before dinner - I know it's coming but I wish it were still the weekend. 

Water is starting to taste a strange now. Again, I have been expecting this, but had hoped I might be lucky enough to avoid it. Dehydration is, of course, very serious, so if water becomes unbearable to drink, there is a risk I would end up back in hospital having fluids intravenously. I have already stocked up on many different flavours of cordials and squashes in the hope I can continue to keep my fluid intake up. A few people had also recommended coke or ginger ale to break down the mucus, so I tried this but I may as well have poured neat alcohol down my throat. It was agony! Maybe they are better attempted during recovery - one to add to the list. 

Music choice in the mask today was 'We Are Young' by Fun. I was reminded today that I am young to be going through this, with the average age for a cancer diagnosis in the UK being 66. I have had my diagnosis almost 20 years earlier than average. Having youth on my side (yes, yes, it's all relative!) hopefully means I have a physical advantage in terms of being able to get through it, but also a mental advantage. There is so much of life left to live, I'm not even 50 yet and my girls are still young - this all makes me even more determined to remain positive and do everything I can to get through it. 

Week 5 - Day 21

Today marks the start of week 5, so exactly two more weeks to go. Sleep is becoming more difficult as I’m starting to produce more mucus (nice!) which not only makes me snore, but also means I wake up during the night with a mouth as dry as a cream cracker. I was warned about this stage – I will produce more mucus and less saliva, so while my mouth is dry, my throat has plenty of excess ‘material’ that needs to come out one way or another. Rich has kindly bought me a cool mist humidifier so I will be trying that tonight to see if it makes a difference, and will likely need to start using the wedge pillow to sleep more upright too.

Treatment itself was quite uneventful, taking less than 15 minutes in total. Music choice was ‘Rise Up’ by Andra Day. I was feeling the need to regain some positivity and really push myself to keep going, so it felt an appropriate choice, especially the lyrics "You're broken down and tired'. An understatement if ever I heard one! This treatment really does feel like moving mountains.

I saw the duty doctor after my treatment to discuss the new morphine-induced nausea, and yet again came away with some more (new) meds. A stronger anti-sickness pill to take twice a day (as well as the current one, so I now have five anti-emetic tablets per day), and a mouth rinse that also lines my stomach and numbs my throat. I tried these both out today and they definitely helped. It is getting to the point where no matter how much morphine or codeine I have taken, if I eat for more than a few minutes, my throat really hurts. I have found the only way to make eating possible is to take the morphine, rinse my mouth and wait 20 minutes, then eat as quickly as possible – not terribly easy when you have a dry mouth and can’t really taste anything. I did succeed again tonight though, managing spaghetti carbonara for dinner. I still need to wash every mouthful down with a gulp of water, but I can’t tell you how pleased (and surprised) I am to be still eating solid food at this stage. It may not last much longer but every day I manage it feels like an achievement. What a shame I can’t have a nice glass of wine to celebrate!

Tiredness is getting worse now and I have spent the entire afternoon lying on the sofa watching TV. I still feel so lazy! I have a to-do list as long as my arm and very grand plans in my mind to do so many things around the house, but the motivation and energy just aren’t there. Still, the pets are loving having a hooman to hang out with. I have much in common with them now - like a bunch of sloths, all four of us loaf around on the sofa all day, waiting to be fed!

Week 4 - Day 20

It feels good to be writing 'Day 20' – I have finally reached the end of week 4 and am now two-thirds of the way through treatment. The session today was a challenge. I took morphine first thing this morning, as advised, to help me eat breakfast. That part was a success, but unfortunately the morphine seems to be stronger than my anti-sickness meds so by the time I arrived at the hospital I was practically green with nausea from the car journey. I had all of two minutes to try to breathe and re-set myself, before I was called into treatment. I explained to the team what had happened and they were very reassuring, telling me to raise my hand at any time if I thought I was going to be sick so that they could rush in and unbolt me. This seemed to make things worse as I started to visualise in my mind how they would manage to clean the mask (which is like mesh, so full of little holes) in the event of an unexpected regurgitation of my breakfast. This obviously didn't help me! Also probably too much information and I don’t want to put you off your dinner. I asked them to play Someone Like You today – I was in need of some loud, shouty Adele to distract me. This seemed to do the trick, along with some focused breathing, as I thankfully went through the procedure without issue.

Afterwards, I was treated to some pampering, if you can call it that. I had a 15 minute relaxation session with the lovely lady from the Penny Brohn charity. This involved lying back in a reclining chair in dim lighting while she did guided breathing. There is a good chance I may have had a tiny power nap during that time; I certainly felt very relaxed. This could, of course, have been because I had been feeling so awful after the car and treatment that any opportunity to lie down was extremely welcome. It got even better after that as I then had a reflexology session – more time lying horizontally, while someone massaged my feet and toes. Such a strange sensation. There was no doubt this time, I definitely fell asleep as I woke myself up snoring a few times (my throat is so blocked!) and had to keep apologising to the poor lady enduring the noise. She was very lovely about it. Frankly, it was just nice to have someone performing a non-medical procedure for a change.

The journey home was as bad as the outbound ride had been, so when I stumbled through the front door, I couldn’t do anything other than lie down (again) – and have mostly stayed that way today. I managed some cheese pasta for lunch and a McDonald’s cheeseburger for dinner. I had a strange craving for something other than bland cheese dishes, so it was a morphine and maccy’s fest this evening. I needed a lot of water, and it did hurt, but I managed it! Now to chase it with a McFlurry! Then it's back to the sofa for the torment that is Bake Off. I’ll probably spend tonight dreaming about eating all of those delicious Bake Off goodies. One day!

Week 4 - Day 19

I didn’t sleep well last night. My nose and throat are becoming more blocked so I kept waking myself with my very loud snoring. Somehow, I still managed to roll out of bed ready early, ready to embrace the week ahead and keep moving through the treatments. I just want this all to be over with as soon as possible. I took my meds as usual, but when I went to eat my Weetabix (as usual), it was impossible. No matter how long I let it soak and soften, the pain was just too much so, reluctantly, I gave up and took the dog out for a walk instead. Perhaps I just needed to allow more time for the medication to kick in. The weather on my walk just about summed up my mood. I left the house in glorious sunshine, wearing sunglasses and a hoodie. Five minutes into my walk, it started to rain, but the sun was still shining. Similarly, on the one hand I feel optimistic and hopeful that I only have 2.5 weeks left – in total 16 days including the next 2 weekends to be precise – but at the same time I experienced my own internal rain shower because until today I have always been able to manage breakfast. In fact, it has always been the easiest meal. I tried hard not to let this get me down, but it was a real blow because I was hoping to continue to eat right through treatment.

Today's driver was one I don't particularly like - the one who told me about his brother-in-law dying of cancer. He drives quite erratically and his car smells of stale coffee. He always wants to chat. Before we had even got to the end of our road this morning, he announced to me that Saturday had been a really bad day. I learned that his wallet had been lost, and luckily found again, and was being posted to him. I could barely bring myself to reply. If that constitutes a really bad day, his life must be pretty good. I would trade cancer for a lost wallet any day of the week.

Mondays always seem to be trickier than the other days, probably because the break from treatment makes it feel like I am restarting again each week, and a whole week feels so long. It didn’t help that I couldn’t decide on a song this morning. I was frustrated because none of the songs I had shortlisted were jumping out at me; none of them felt right for today. It is interesting that music has become so important to me throughout this process. It gives me focus while the mask is being put on and the bolts are being closed. It comforts me when the radiographers leave the room. It calms me when the machine starts moving. Right before I was called into the radiotherapy suite, Whitney Houston’s ‘One Moment in Time’ played on the radio in the waiting room, and I decided to go for that song today, because I hope my cancer is just that – a moment in time.

The senior nurse called me when I got home to discuss my medication. She suggested I stop my current routine of taking codeine and ‘topping up’ with morphine, and instead primarily take morphine, along with paracetamol and ibuprofen, which she hoped would enable me to get back to my Weetabix. So I spent the rest of the day in a morphine haze, not really moving from the sofa and struggling to keep my eyes open in front of the TV. It did, however, do the trick and I managed to eat both lunch and dinner (mac n cheese for lunch and a cheese omelette for dinner – cheese is the new meat in my current world). Quite a result given the breakfast fail!

A different sort of Sunday

When I opened my eyes this morning, for a millisecond, I felt like a normal person. A person not going through cancer treatment. As soon as I swallowed, the pain hit me and my reality brought me hurtling back to earth very quickly. For a while, I lay in bed trying to remember my life before it was turned upside down. What did I used to think of when I woke up? Probably just what I had to do that day, all of the tasks and chores that were ahead of me, as well as the fun things I might have had planned. Now I am consumed by everything cancer-related as soon as I wake up – the immediate thoughts like the pain, the meds, the treatment, the timings, as well as the longer term concerns about life and whether it will ever be truly ‘normal’ again. I wonder if I will ever wake up and not think about this time; I certainly hope so.

It is now almost 6 months since I first spotted the lump in my throat, and next Wednesday (28^th Sept) marks 5 months of being on the cancer pathway. Almost half a year living this hell. No wonder it feels so all-consuming. 

The challenge with cancer treatment being pretty much the only thing I have to focus on is that life has become so boring! Days that were once filled with fun things, social activities and nights out are now filled with medication schedules, pain relief and just surviving each day. Weekends that were previously full with social catch ups and delicious long lunches are now completely empty. I do actually feel well enough to be able to go out and do things, perhaps to meet friends for coffee, but the problem is that it all depends on where I am in my meds schedule. If I’ve just taken my medication, then I’m not in much pain, and that is usually when I feel physically able to see people. However, the challenge is that the same medication also make me feel drowsy and a sometimes a little bit nauseous too, so even though I am sufficiently pain-free to socialise, at the same time I’m generally too drowsy and glued to the sofa. I am also too drowsy to drive so I feel quite 'stuck' at home - I've been driving since I was 17 so I've never been stuck before!

This vicious circle is proving very challenging for me because I’m desperate to do something other than housework, dog walking and taking meds – not forgetting the big deal that is eating of course - but I just don’t have the energy. Certainly by the time the evening arrives, I even find talking quite an effort, so I quietly bob around the house from sofa to chair and back to sofa. I keep thinking I will start doing some sorting - the loft, a drawer or a cupboard - but it all feels like such an effort, not to mention even more BORING! I have to say this blog keeps me sane, helping me to articulate all of the thoughts whirring around in my head. 

I never thought I would say this, but thank goodness it’s Monday tomorrow and I can get out of the house and move forward with treatment. I can’t wait until I am writing that it is finally over – 12 sessions and counting. I know I then still have the dreaded 2 weeks afterwards to deal with (apparently it gets worse before it gets better as the radio keeps 'cooking' your insides), but at least I can stay in bed, knowing it’s over and the healing process is imminent. Must keep looking forward and stay positive! 

Le Bon Weekend

This is my fourth weekend during treatment. On the one hand, I could really do without treatment stopping on a weekend because I just want to get it over with as quickly as possible. Without weekend breaks, I would be able to finish treatment 12 days earlier (6 weekends), so by my calculations I would be finishing next Thursday. If only! The weekdays also provide structure for me – mornings are busy getting treatment done, and I have some rest during the afternoon before the girls get home from school, whereas weekends feel quite long at the moment because I’m not really doing very much and there's a limit to how much Netflix a person can watch (or maybe that's just me?).

On the other hand, the weekends are a welcome break from the long car journeys, the hospital and generally the stress of it all. I can stay in bed as late as I like and don’t have to rush back from my dog walk to the awaiting car. Similar to eating, I am pleased I’m still managing to get out for a walk with Oscar every day. I’m definitely walking more slowly than I did previously but it is nice to escape the house and get some fresh air; it is even better when the sun is shining.

Quite a lot can happen on my dog walks. This is often the time I select my song for radiotherapy. I play lots of songs until I get to the one that jumps out and me and matches my mood that day. Sometimes I have entire conversations with myself on my walks, usually around the topic of how to slice the number of remaining sessions.

Me: Only 12 sessions left. Hoorah!

Also me: But that’s still 2.5 weeks, so not really that great

Me: But on Tuesday I will complete 4 weeks!

Also me: Yes, but there are still 2 weekend days and 2 treatments to go until then and look how quickly things went wrong last weekend

Me: Yes but I’ve now got stronger pain meds. Plus I am still eating!

Also me: Don’t forget you’ve got the skin burns and mucus to come…

And so I go on, back and forth, trying to stay positive but at the same time being very realistic about the situation I am in. Perhaps one of the side effects of all the meds is schizophrenia?! Quite typical that I find myself arguing with myself though 😉

I have managed to eat again today – some Weetabix ‘soup’ for breakfast with a coffee flavoured Fortisip on ice (I try to pretend it’s an iced coffee) and a chicken, pesto and mozzarella toastie for lunch. I have to say, I even managed to impress myself with this. Admittedly, it was quite small and I didn’t eat the crusts, and it was pretty painful unless I washed every mouthful down with a big gulp of water – but still! Since then, however, my throat has been burning continuously, even after my codeine top up, so I suspect I may have overdone it. You don’t know these things until you try, but I am not quite ready to move to soups and shakes just yet, even though I know that time will come, and probably very soon.

Week 4 - Day 18

I’m not sure if it’s because it’s Friday, or because of the new meds, or because I had my treatment in Oxford for the first time this week, or just because, in the words of my oncologist, your body learns to adapt to the pain, but whatever the reason, today has been a much better day. I never thought I would say it was good to be back in the hospital, but the familiar surroundings of the Oxford hospital, where the staff know my name, know the setting, and more importantly, know how to operate the music, certainly made for a more comfortable experience today. 

Music today was Chumbawumba’s ‘Tubthumping’ – you probably think you have never heard of this, but you would definitely recognise it if it were played on the radio. Think ‘I get knocked down, but I get up again, you're never gonna keep me down.’ It’s very much a feel good song. I felt I was really embodying the spirit of these lyrics today (maybe not the ‘I drink a vodka drink’ part!). It has been a tough week, certainly the toughest so far (although I suspect there is much worse to come) - daily four-hour car trips to an unfamiliar environment, coupled with significant pain and tiredness. Yet today I felt more positive with the pain under greater control. Yes, another reason today was a good day was because I was prescribed liquid morphine which I can take every 2 hours if needed. That feels quite excessive to me (although possibly also super fun) so I won’t be taking it that often, but it can be used to bridge the gaps between meds.

I am still managing to eat ‘normal’ foods. Apologies if I am repeating this every day, but I feel like shouting from the rooftops when I have eaten something because so many people in my situation are already on feeding tubes at this stage, so every single piece of solid food feels like an enormous achievement. Evenings are the most challenging time because the pain becomes worse by then – presumably the wounds are sore after a day of eating and talking – so I try to get most of my intake over breakfast and lunch and that way I don’t have to worry too much about managing dinner. I am clearly still managing to get enough calories in though, so much so that at my weekly weigh-in today, it seems I have now gained 2kg since starting treatment! That wasn’t quite the intention but I did enjoy all of the milkshakes and desserts!

When I got home from the hospital, I collapsed on the sofa with the pets. Having never watched daytime TV, it’s quite a novelty to switch the TV on and watch whatever happens to be showing. I didn’t even know there were so many channels these days (that makes me sound SO old!). I’ve been watching A Place in the Sun and another one to do with living in a French Chateaux. I have to say, I could happily move to a nice chateau and become a chatelaine. Rich is going to read this and ban me from watching these programmes soon! Happy Friday everyone!

Week 4 - Day 17

It feels good to finally be at a point where I have fewer sessions left than I have already done. 17 down and 13 to go, so just 2.5 weeks left. Although my attitude to the amount of time left changes every minute of every day. Had you asked me this morning how long I have left, I would have said I STILL have 2.5 weeks left, but this evening, simply typing ‘Day 17’ felt positive.

It was another 4 hour car journey to and from Milton Keynes today. It is exhausting doing it every day. I fully appreciate how silly it sounds to say sitting in a car is exhausting, especially as I’m not even driving! I just sit in the back seat with my pillow and my air pods, willing the time to go faster. I can’t even tell what is radiotherapy fatigue and what is sheer boredom fatigue, but I just know I am pretty tired.

The session itself today was uneventful. I chose the song ‘abcdefu’ (clean version because I’m not allowed to choose songs with swear words – maybe the radiographers are a sensitive bunch?) by Gayle. I think I was trying to send Milton Keynes a not-very-discreet message. Seemingly, that worked well because on the way home I had a phone call to say the machine in Oxford is finally working again – hoorah! I can’t tell you how relieved I am to go back to my ‘shorter’ 2.5 hour daily journeys. Of course, it’s all relative. It reminds me of the kids book ‘A Squash and a Squeeze’ by Julia Donaldson. In the book, an old lady feels her house is too small, so she consults the wise old man who advises her to bring in a load of animals and of course the house then feels even smaller. When she gets rid of them all, her house feels huge. I think this will be how I feel tomorrow going to Oxford – suddenly that 2.5 hour journey won’t feel long at all after 4 days of travelling to Milton Keynes.

Pain has been slightly more bearable today as I am slowly getting to grips with my new med schedule. I seemed to be okay on 30mg of codeine, but it didn’t completely get rid of the pain, so the doctor had told me to try 60mg. First thing this morning I popped two and spent the following three hours on an entirely different planet – sadly not in a fun way. So I will be sticking to 30mg in future. I’m beginning to realise I won’t be able to get rid of the pain completely. Rather, the aim is to dull it sufficiently so that I am able to eat. 

Ah, eating – the second part of my new, stressful, full-time job! I am still managing some foods - mostly soft foods (I'd like to say a big welcome back to the post-surgery cheese soufflé!) and meal shakes, because my mouth is too dry/sore to be able to swallow anything too solid. The burning is still very much there, so mealtimes now resemble a drinking competition, but without alcohol - I am poised ready with multiple glasses of water, taking a big gulp as soon as I have swallowed the food, so the ‘fire’ doesn’t have much of a chance to burn before the water puts it out. Whilst this has the added benefit of ensuring I stay hydrated, it does mean I fill up very quickly so it’s little and often rather than three meals a day. All that said, I am pleased I can still chew and swallow at this stage and hope that I can continue to do so throughout. My neck still looks normal (not burned) and my mouth aperture (yes, that's an actual thing) is also normal - so lots to remain positive about. For now...

Week 4 - Day 16 - 'Looks like a girl but she's a flame'

Another long day in Milton Keynes today – third time in three days. I have managed to find a single advantage to this new routine, in that I don’t have to get out of bed as early as I do for Oxford, because the appointments tend to be around lunchtime rather than morning. The flip side, of course, is that I also get home much later. Today I left the house at 11.15am and got home at 4.30pm. The irony is they are telling me to eat, eat, eat, yet they are booking appointments at lunchtime, and sadly I am quite far past the ‘grab a sandwich’ phase.

My mouth is still like a blazing inferno so I saw a doctor today. He was a jolly American chap who was very keen to stock me up with a LOT of medication. He checked my mouth and confirmed that what is causing the pain are indeed severe burns inside the mouth, that will only get worse, and so the only way to get through the next 6 weeks or so is to take stronger pain meds. In addition, he would like me to use 3 different mouth rinses 4 times a day. This is getting complicated – I can feel a spreadsheet coming on 😊 not to mention the added complexity of being out of the house for more than 5 hours each day. Looks like I’ll need a portable meds bag now too. To complement all of these meds, I was also advised to take omeprazole to protect my stomach from the ibuprofen, and a laxative (thanks codeine). Cancer does not recognise dignity, clearly.

I was trying to describe how it feels to the girls today. It’s difficult to explain, because it’s not the same as a sore throat. I mean, my throat is sore, of course, but it’s a lot more than that. It’s burning. I feel like a fire breathing dragon (maybe it’s a Welsh thing?). I walk around with my mouth open to try to cool it down, desperately sucking the cold in air in to provide short but sweet relief to the raw wounds inside my mouth. It can help to try to imagine these were external rather than internal wounds (although you don't need to eat or breathe through any other part of your body so not quite the same). But for all intents and purposes, I look pretty normal. Well, that might be a stretch. I look quite haggard by now, but my neck hasn’t yet changed colour (that joy is to come) and it’s certainly not burned and peeling yet. I think perhaps one way to describe it is to think of the hottest curry you have ever eaten, think about how your mouth felt, that feeling when you really need something cold, urgently, to cool it down. Multiply this by 100 and deduct any cooling drinks and now you may be close to how radiation to your throat feels. Let’s hope the codeine does its job properly and this is the last pain post.

Today’s choice of music was Alicia Keys ‘This Girl is on Fire' - enough said.

Week 3 - Day 15 - Halfway

I thought when I reached the halfway point I would be popping a non-alcoholic cork in celebration of this milestone. Unfortunately, the pain is still radiating through my throat so there were no such festivities tonight. Rich reminded me that I have known this time would come, and he is right, but I guess I was hoping to get to week 4 or 5 before it happened. I also hoped I would be one of the ‘lucky’ ones who got off lightly and just lost taste or saliva, escaping the excruciating pain. Sadly it seems that’s not to be.

It was back to Milton Keynes today, so my already-too-long car journeys have now become almost twice as long. It took and hour and fifty minutes to get there, my appointment was twenty minutes, and then a return hour and fifty. I don’t have time to do anything else during these days, other than take meds and try to eat. I had some good advice this morning from someone who has been through this.

Right now, you are no longer "fighting cancer". Your doctors are. Your job has changed, it's much simpler.

1. Show up to your appointments.

2. Calories.

This sounds so easy - especially the calories part! Given appointments now take around 4.5 hours and every meal takes around an hour, it means surviving radiotherapy has now become my full-time job. I spoke to the head nurse today who is trying to get me an appointment with a doctor tomorrow to review my pain meds. I definitely need something stronger if I am to be able to continue to eat, but my concern with moving onto opiates at this stage is that they seem to render me like a zombie, so I would pretty much need to spend the next 2 months on the sofa, staring at the wall. I did manage to eat today, but it was both painful and stressful, so I can easily see why so many opt to use a feeding tube at this stage. That said, I am lucky I don't have many mouth ulcers and I can still swallow, so if I can get on top of the pain soon, I’m hoping I’ll be able to continue to eat.

In keeping with the current situation, I chose the song ‘Believer’ by Imagine Dragons today. I listened to it on my dog walk this morning and the lyrics jumped out at me –

Pain!
You made me a, you made me a believer, believer
Pain!
You break me down and build me up, believer, believer
Pain!

That’s probably enough said for today as I'm conscious I'm sounding very maudlin. Hopefully, by the time I am back from Milton Keynes tomorrow, I will have a goodie bag full of life-changing medication and things will start to improve. In the meantime, I’m off to torture myself watching all the delicious creations on Bake Off!

Week 3 - Day 14

I will start by saying I am grateful to her late Majesty for timing the funeral for today. Watching it on TV at the hospital meant that it filled the many hours of waiting around I was forced to do today. I had a 10.15am appointment, so my car picked me up at 9am. I felt conflicted about my treatment continuing on a bank holiday. On the one hand, I just wanted to stay in bed because the girls weren’t getting up for school, so there was no need for an alarm. On the other hand, I just want to get all my treatments out of the way as quickly as possible, so I was really pleased that I didn’t need to miss one. I am hanging on to the thought of the last treatment on October 11th. It is the shining beacon of hope that is keeping me going.

Just before we arrived in Oxford I had a call from the hospital to say the chiller that cools the machine had broken down and, being a bank holiday, it was proving difficult to source a repairer for today. They told me to come to Oxford to collect my mask, then I would need to go to Milton Keynes for the radiotherapy. The earliest appointment they had, however, was 1.30pm, so it would mean a lot of waiting around. I had the option to drive home first but it seemed pointless as I was already in Oxford, so I waited. I watched the funeral procession from the waiting room of a cancer hospital – as if watching a funeral isn’t sad enough already! I wasn’t at all prepared for this delay. I hadn’t brought any of my meds, nor any food, so when I got to Milton Keynes I was feeling somewhat apprehensive. The pain was starting to kick in, along with hunger, and also I was anxious about the new environment, having taken the best part of 2 weeks to become more comfortable with the situation in Oxford. Thankfully, they had biscuits and a coffee machine, so two ginger nuts dunked in tea later I was feeling a bit better.

It was strange being somewhere different for treatment. The Oxford staff had come to do the treatment, which was a huge relief, but they couldn’t play music over the speaker so I had to make do with quieter sound from a computer. Better than nothing. Today I chose ‘Fight Song’ although I was feeling so exhausted and exasperated by the time I finally got into the mask, I didn’t really feel much like a fighter. It didn’t help that the machine seemed to stop at the halfway point for a lot longer than it does in Oxford, and the music finished playing and there was a long pause before a new song came on. I almost waved for them to unbolt me as I had started to panic, but I’ve learned if I do this, it just means even longer in the mask. So a few deep breaths later, treatment finished and I was out.

I think I slept most of the almost 2-hour journey home. I have started taking a pillow with me and usually put it between the window and headrest so I can put my head into the corner. I pray I wasn't snoring, but there's a good chance given how blocked my sinuses are. Having left the house at 9am, I got home at 3.30pm – a very long day for a 20 minute treatment. Sadly I had a call this evening to say it will be in Milton Keynes again tomorrow as the part they need to repair the chiller wasn’t available today due to the bank holiday. I’m hoping it’s back to Oxford from Wednesday.

Eating seems to have become almost impossible overnight. Everything burns my mouth when I swallow, even after I have taken painkillers. I suspect I will need to move onto the codeine sooner than I had wanted to – either that or a feeding tube. Having desperately wanted to avoid the feeding tube until a few days ago, I can now see the reason so many people have them. The pain just becomes too much, and trying to eat on top of managing all of the side effects is just unnecessary. I’m still going to try to get through without one, but I’m no longer ruling it out. 

I'm also starting to develop a 'suntan' on my neck, so need to slather a special gel on it at least 3 times a day. This is fine if you have short hair but quite messy with longer hair, so you may find I'm sporting a pony tail for the next few weeks. I'm also trying to keep up with my daily exercises. Radiation causes scar tissue in your throat muscles which can make it hard to open your mouth fully, so every day I need to push my jaw open and hold it for a few seconds. I can only do this after I have taken painkillers as it really does hurt, but not as much as the swallowing!

As well as it being the Queen’s funeral today, it was also Rich’s birthday. Hoorah! Due the chiller issue, he spent most of it on his own with the girls, and when I finally made it home, I wasn’t really in the party mood – although I think the funeral had set the general mood for the day either way! To try to make it feel more like a birthday, I opened a nice bottle of Bordeaux and poured a glass for the birthday boy, not before having a big sniff first! I can't imagine it right now, but hopefully one day I will be able to enjoy a nice glass of wine again. 

The Burning Fires of Hell (in my mouth)

I woke up today with a sore throat. I took some paracetamol and I also decided to try the new mouth rinse (Gelclair) prescribed by my oncologist yesterday, which is meant to help with mucositis (the medical term for a very sore mouth caused by cancer treatment).

Gelclair is basically a thick clear gel that tastes like Ouzo. If you’re a fan of Ouzo, this could make for a great Saturday night treat, but for someone who isn’t particularly keen on aniseed, it felt more like a punishment. Why can’t they just make it mint flavoured like most mouth washes? The idea is that you rinse your mouth with it and it coats the inside of your mouth, thereby enabling you to eat without pain, whilst simultaneously healing your torturous ulcers. What seemed to happen in my case was that after I had coated my mouth with the Ouzo-like substance, it then burned every surface inside my mouth. It felt as though somebody had a lit match at the back of my throat and was holding it there, gently burning away the skin. It really did feel like the burning fires of Hell had moved into my throat.

I wondered if I had done something wrong. Maybe I hadn’t diluted it enough? Maybe I had swished for too long? Not one to give up easily, I tried it again before lunch, with slightly more water and slightly less swishing. It had exactly the same effect. It certainly didn't make eating any easier, and it made the pain a lot worse so I won't be continuing with this one. I do have stronger painkillers now – I was prescribed 100 co-codamol tablets yesterday, which felt worrying in itself if that’s the amount of pain they expect me to experience in week 3 - but I’m reluctant to hit the opiates just yet. I’m also a little apprehensive about the dosage they have prescribed – after surgery I managed on 8mg codeine which, quite frankly, was quite enough to send me into a funny place with all sorts of weird dreams, and this time I’ve been prescribed 30mg - almost 4 times the dosage. Although if it sends me four times as crazy that may not be a bad thing! 

All in all, today has been a fairly relaxed day, which was much-needed after the full-on radiation schedule of the week. I did manage a few chores – I walked the dog, did the laundry and changed the cat litter (I know, contain your excitement), but that was about the extent of my exertion. This part I am finding very hard indeed. I hate not being busy. And generally you would rarely find me sitting around doing nothing - unless I have a glass of wine in my hand – and even then I’m usually multi-tasking. I feel so….LAZY! Not to mention guilty, because Rich is having to pick up everything with the girls because I’m now pretty much useless. I’m trying hard to train my mind to not think this is laziness, but as recovery. I am fully aware I am putting my body through a very difficult treatment and it needs time to rest and repair. It’s still not easy though, and I would much rather be up and about doing all the things I used to do - and also having a glass of wine of course!

The other thing I’m finding hard to come to terms with is the way everything is so up-and-down. One minute I am fine, the next I feel dreadful. On the one hand, this is a good thing because one bad day doesn’t necessarily translate into a bad week, but on the other hand it’s very difficult to make plans (e.g. to meet a friend for coffee) when you have no idea how you will feel from one day to the next, or evening a morning to an afternoon. Thank you to all my lovely friends and family for being so patient with me – if it’s any consolation, I share your frustrations! 😉

Week 3 - Day 13

I have now done 13 radiotherapy sessions. I must admit, I’m not too comfortable pausing on this number for the weekend after my initial diagnosis took place on Friday 13^th but given I don’t have a choice I am trying not to think about it!

Only two more sessions until I get to the much-anticipated halfway mark when I can start counting down to the end. When I get to the ‘end’ I will, of course, feel incredibly relieved, but as I’ve said in previous posts, the end is not actually the end. The end of treatment simply means no more radiotherapy sessions. In reality, what happens is that the radiotherapy will keep cooking my throat for a few more weeks (or possibly months), so it will get worse before it gets better.

Unlike surgery, where recovery was pretty linear and I got a little better each day, I am finding with radiation that every day is different and even within each day things seem to go up and down. I spent most of yesterday afternoon in a complete daze on the sofa, drifting in and out of slumber. At that moment, I assumed that this meant the fatigue was kicking in and the next month or so would be similar every day. But I woke up today with a new lease of life, went through my treatment without any issues and when I came home I met a good friend for a lovely long dog walk in the sunshine. It was glorious and I didn’t need a nap the whole day.

Mask music of choice today was Salt n Pepa - I went right back to the 80s! 'Push It', 'Shake Your Thang' and 'Let's Talk About Sex' were all played while I was bolted down, and it took me back to some amazing days in Munich many, many years ago! Happy memories!

Unfortunately, the lovely afternoon quickly turned sour as dinnertime approached. My taste buds were last seen leaving the hospital sometime around 10am this morning, and my sense of taste is now sadly disappearing. I can only taste certain things at certain times, like a little salt on a chip, or the partial sweetness of ice cream. Often, I think I can taste something and my mouth starts doing somersaults in delight, but after about three mouthfuls all I can taste is disappointment – the taste evaporates completely and I feel like I am chewing on cardboard.

We decided to order takeaway tonight. In hindsight I should probably have opted for a something like a Pad Thai – nice slippery noodles with minimal chewing which would have been reasonably manageable. For reasons I can’t recall, we opted for a more generic takeaway. I ordered chicken breast with cheesy chips, thinking that the chicken would melt in the mouth and the chips would be soft and easy to eat. I managed a few mouthfuls of the chicken, but sadly could not taste it. This evening’s learning has been that chewing meat you cannot taste is quite an unpleasant thing to do, because you have the texture but not the flavour. It started to turn my stomach so I tried the chips instead. They were also too thick to go down, even dipped in barbecue sauce and washed down with lots of water.

At this point I was feeling very frustrated so I gave up. And then I did what any sane human being does when you can’t taste your dinner but you need to somehow get calories in - I got the ice cream out! Time to buy shares in Hagen Daazs everyone!

After dinner, I tried to watch a movie (The Batman) but slept through more of it than I actually watched, so I gave up before the end (there’s a theme here….) and took myself off to bed. At least there’s no radiotherapy tomorrow (although I am very keen to get number 14 done so I’m not hovering on 13 for too long!).

Week 3 - Day 12

Short post today because I quite literally have nothing to write about! I felt very tired when I woke up this morning and the tiredness hasn’t lifted the whole day, so I have spent most of it on the sofa. Having spent my life being a generally 'busy' person, I struggle with doing nothing and I’m feeling very frustrated that I haven’t managed to tick anything off my to-do list. But I also know that I need to listen to my body at the moment and rest when it’s telling me I need to rest. I received this advice today from someone who is a month out of treatment –

“Take time to rest, your body needs it to begin healing and eat as much as you can! Get used to watching TV, listening to music /podcasts and be kind to yourself.”

Guess I had better ‘get used to watching TV then! 😊

Lily Allen was the choice of music this morning – ‘The Fear’ of course when I was bolted down and then ‘Smile’ as I was finishing treatment - and yes it did make me smile.

I’m still eating (a lot) although am rapidly going off meat. The texture is just all wrong when you can’t taste it properly. Cheese is becoming my best (protein) friend and already I’m thinking of the magnificent cheese souffles I had post-surgery. They probably weren’t even that delicious, but as they were the first savoury food I had managed to eat after so many yoghurts, custards and shakes, they tasted absolutely divine. Tonight I enjoyed an alcohol-free Corona beer. Popping the lid off the bottle is probably the most 'normal' thing I have done in this otherwise topsy turvy world I’m currently inhabiting. Friday tomorrow – phew.

Day 11 - into the dreaded week 3

The 'dreaded' week 3 - most people say things go downhill quite rapidly from around week 3 or 4 so I am now braced for the worst. Today I’ve been going through lots of different scenarios in my head about how much of the radiotherapy I have left to endure. I’ve sliced and diced it every way possible to try to come up with a view that feels shorter and more hopeful. I have counted how many Mondays I’ve got (4). I’ve counted how many Wednesdays I’ve got (3), because having started treatment on a Tuesday, I now have fewer Wednesdays than Mondays or Tuesdays – that’s a more promising way to view it for a start (me over analysing?! never!). Next Tuesday I will hit the halfway mark, which means from next Wednesday I will be counting down to the finish rather than counting up to the half way point - also something to look forward to. While I find it helpful to try to frame it in a way that feels manageable, sadly the bottom line is that I can’t mould time to suit my needs, nor can I change it so that I have fewer days left than I have already done. That time will come, but it’s not yet. 11 days done, 19 to go.

I’m also pleased to report that the new anti-sickness pills are really doing a great job. Not only are they stopping me from feeling sick, but I have found they also help me sleep too. Last night I took one before bed and, where I would normally toss and turn for hours on end thinking about cancer and therapy and other such thoughts that torment me in the middle of the night, last night I fell straight asleep and didn’t wake again until my alarm rudely went off. Result! I wonder if I can keep taking these after I finish treatment?! The downside is that they also make me feel a bit drowsy during the daytime so I spent a good chunk of this afternoon on the sofa, but that could also just be radiotherapy fatigue. It all blurs into one great big blob of rubbishness.

The mask part seems to be getting easier too, or at least, I am getting better at focusing my mind. Today’s music choice was Queen so I was rocking the mask to ‘Don’t Stop Me Now’ followed by ‘Radio Gaga’ and hilariously ‘I Want to Break Free’ – made me chuckle as they were unbolting me for that one.

I am still managing to eat well, although rice was tricky this evening. I feel as though I have gone back to around 4 weeks post-surgery as my ability to eat is similar to that time. So far I definitely have not lost any weight, which is a very good thing, as every day that I manage to eat is a day further away from the feeding tube. If anything, I have probably gained weight because I am eating as though my life depends upon it – full meals with puddings and snacks in between. I am so afraid of losing my sense of taste that I feel obliged to eat everything I love now just in case I can’t taste it tomorrow! I don’t think that’s how I should be doing it, but it’s not doing any harm just yet. I might be in trouble if my sense of taste stays after all though!

Week 2 - Day 10 - 1/3 through

I have removed the word ‘disco’ from the title as it no longer feels like a disco, although music has become a key focus of the sessions. Today’s choice of music was Adele. I can choose the first song, after which they just play other songs by that artiste, so I started with Take it Easy On Me (it felt appropriate), next came Hello, then When We Were Young. These kept me pretty well occupied for the 15 or so minutes I was being zapped. Music definitely gives me a focus and helps me not to think about the mask. 

I have also tried really hard to change my attitude towards the mask. I have realised that I was thinking of it as the enemy. I was terrified of it, so much so that the mere thought of it resulted in a rising panic in my stomach and chest. So I gave myself a good talking to and am trying to see it as my friend - love thy enemy and all. Cancer is as much a mental battle as it is physical and it is so easy to become overwhelmed by it all, so the last thing I need is a panic-inducing mask on top of it all. So now my ‘friend’ the mask goes on and is there to help me, to focus the beams so that the cancer can be properly targeted. Yes, this monologic discussion goes on in my mind every day! I may need a psychiatric facility when the radiation finishes!

When I am bolted to the metal sheet, I usually keep my eyes closed for the duration of treatment, in case I start to panic. But I’m now starting to open my eyes a little, and what I see are 3 red lights and a green light. The room is mostly dark. And then the large Star Wars-type machine that moves up around me, like a planet orbiting the sun. Not sure if I would be the planet or the sun in this scenario, but it is pretty cold so probably the planet. I wish I could video it to share as it is a truly surreal experience, but sadly no one can come into the room while treatment is being administered (for obvious reasons).

I was lucky to have a 'Tuesday Treat’ today at the hospital too – my first ever reflexology session. Similar to the acupuncture, it was basically an opportunity to lie down in a dark room in peace and quiet, with a nice little foot massage thrown in. What’s not to like?! 

Eating is becoming noticeably harder, but I am still managing meals and liquids at the moment. I need a lot more water to wash down food as it gets stuck quite quickly now. I was given a prescription for some mouth gel for the ulcer and a new tube of Flamigel, which I put on my skin around the radiated area 3 times a day to try to minimise the impending skin burns. Seems to be fine so far but I am not sure when this typically kicks in. My bedtime routine now requires a significant amount of time (Rich can’t believe it's possible that I need more time to faff in the bathroom than I did pre-cancer) – I need to do 2 mouth rinses, each a minimum of 45 minutes apart, brush with a soft brush using a special toothpaste for dry mouths, apply a layer of gel to my neck and take my anti-sickness meds and paracetamol, if needed. Thank goodness make up is no longer needed. Well, it probably is needed to avoid causing nightmares in small children, but thankfully it's not permitted under the mask. Just as well as I have enough 'personal admin' to think about at the moment!

Week 2 - Disco Day 9

Today felt less like a disco and more like a karaoke booth. It was a tale of two halves. As soon as I got up, I took one of my new anti-nausea pills and then I went straight out for a woods walk with the dog, mostly to tire myself out a little in the hope that I might feel more zen in the mask. The pills must be bottled magic – I did not feel sick at all in the car and the journey passed uneventfully for the first time since starting treatment. I could not believe my luck. Not only did I not feel sick, but I even managed to look at my phone every now and then to find songs on the new playlist I have created to get me through this. I mentioned in a previous post that I have asked some friends and family to send me uplifting songs, or ones that inspire memories of fun times. The playlist is great – it evokes some fantastic memories and also makes me feel good. I’m still building it so if any of you have any suggestions pop them in the comments or send me a message and I will add to my list.

The meds are also meant to make me feel drowsy, so I was hoping this would help with the mask. Turns out I didn’t really need it today. The radiotherapy team can play any song I want so, feeling super-charged after the early dog walk and positive after the car journey, I requested David Guetta/Sia’s ‘Titanium.’ I’m not sure I’m feeling completely bulletproof just now, but the lyrics certainly made me feel stronger. I asked them to crank up the volume and I focused entirely on the song. I was desperate for a mic and a good sing song! Music is definitely good therapy - the amazing news is that I didn’t need to have the mask taken off until the end of treatment. This was only the second time in 9 days I have managed this, so it was a big accomplishment for me. I’m hoping I can do the same tomorrow with a different song - need to think of tomorrow’s song now! The journey back was also fine, I started to feel a little queasy by the time I got home, probably from the radiotherapy, but it was manageable. However, this is where the day changed gear.

I made myself some lunch. I had been feeling very proud of myself for still being able to eat everything almost 2 weeks into treatment, and today was no exception. Bacon and cheese tart with spinach and avocado salad, followed by a whole delicious ripe mango. Delicious! Except it hurt. My jaw is now starting to close up. I have jaw exercises I am doing a few times a day, but they are getting harder. So opening my mouth is a little tender. And now I have my first treatment ulcer, forming under my tongue at the back of my mouth, making chewing and swallowing pretty painful. Dinner was fried rice with bacon and egg and it was a bit of a struggle – I needed a lot of water to get it down and I couldn’t really taste it at all. I wanted to add a lot of soy sauce, but that would have been dangerous given my lack of taste. And to top it all off, it was painful. I’ve asked the team for some special mouthwash to help get rid of (or at least manage) the ulcer and I am hoping that as my journey so far has been far from linear that this doesn’t necessarily mean it’s downhill from here. Hopefully I will bounce right back up tomorrow – and long may the nausea-free car journeys continue!

(Btw I have added a ‘follow’ button to the blog so please follow for updates)

Imperfect Spa Time

We celebrated a 16^th birthday this weekend! Sofia wanted to go to the same lovely spa hotel that she went to last year, and we took 2 of her friends with us. When I had booked it a few weeks ago, I wasn’t sure if I would be feeling well enough to drive to the hotel (25 minutes away) or even well enough to go for the night. Thankfully, I have been feeling reasonably well this weekend. So far the only side effects I have are tiredness, slight loss of taste and a swollen throat. I know it is going to get a lot worse so I’m happy to have this time of relative normality. 

However, I can confirm there is very little joy in visiting a spa hotel during treatment for tonsil cancer. I was not able to use the spa facilities (no pool or outdoor wood-fired hot tub for me), nor have any treatments (massage and facials out of the question, pedicure just about allowed but no leg massage). To add insult to injury, I also can’t drink, so I had to watch forlornly as just about everyone around me in spa seemed to gleefully order several glasses of champagne, and corks were popped aplenty at dinner, while I sat with my sickly sweet mocktail trying not to scream, cry and punch them all. The final nail in the coffin was having to sleep in a springy plastic-sheeted kids bed while Sofia and friends took the master bed (it was her 16^th birthday after all) but then proceeded to stay up until 2am chatting, banging doors and generally being noisy teenagers, so I have returned from the ‘blissful spa break’ feeling broken. I may as well have been drinking tequila shots at an all night club in Ibiza. Frazzled.

All that said, Sofia had a great time and I would do it all again for that reason alone. Except maybe next time somewhere like Butlins, where they can be noisy all night. And maybe don’t bother with the fancy dinner. And maybe Rich can take them! But otherwise, it was perfect 😊

This evening, I have had another gift from Rich and the girls. I am being given one for each week of treatment, and this week I will be moving into week 3. The first week I was given a morse code bracelet saying ‘F*** cancer’ – very appropriate to start treatment. Last week an amazing Diptyque room spray in my favourite Baies scent. And then today I had a brilliant wedge pillow for when the mucus starts to come in thick and fast and I can’t both breathe and lie flat at the same time. So much to look forward to - watch this space! 

Week 2 - Disco Day 8

Today’s hospital visit was different from the others so far. I had a few appointments starting at 9am so the car picked me up at 7.45am which was an early start given how tired I am currently. Still, it was the promise of my first ever acupuncture session that spurred me to get out of bed – it bizarrely felt like the promise of some pampering! - after which I had my radiotherapy session and finally a consultation with my oncologist. That was the theory at least; the reality was a little different.

The acupuncture was quite enjoyable, probably because it was mostly acupressure, it being my first time and all. It basically felt like a nice massage. I did have 6 pins put into my legs. I’m not entirely sure what the purpose was, nor indeed the outcome, but it wasn’t too unpleasant. The whole experience was overall positive but that may have just been because I was in a darkened room, in peace and quiet, with someone doing something positive to me, rather than trying to cut, burn or poison me!

I left the acupuncture session feeling more relaxed than when I had arrived, all set to be brave for my radio session and not ask them to take the mask off, when a radiographer explained to me that the machine had broken down and they were waiting for someone to repair it. My heart sank. I asked how long. They said the repair guy lived quite far away, but was on his way already. If they couldn’t repair it within a few hours, they would instead send me to the radiotherapy department in Milton Keynes. I heard this and wanted to cry. The last time I had visited Milton Keynes was for my work induction training some 21 years ago and it had involved a lot of partying. This time would be unrecognisably different – not to mention having to spend more time feeling unwell in the car. I took a seat and hoped it wouldn’t come to that.

After some time, I saw the oncologist for my weekly meeting and she gave me some new anti-nausea meds to try on Monday. Apparently they will also make me drowsy, which could work well for the mask too. She is pleased with how I am doing so far, still eating 3 meals a day (and the rest!) and still able to taste some foods. My neck hasn’t yet started to redden which is also positive, hopefully helped by the gel I have been prescribed to slather around my right ear 3 times a day. She tried to understand why I’m still struggling with the mask, telling me that nothing bad would happen while I was in the mask. Of course I know this – and I am very aware that my fear is not rational. But I decided to try those words as a mantra today.

When I came out, I was told the machine had been repaired – hoorah! – and they needed 45 minutes to run all the necessary checks. This was music to my ears as it meant I wouldn’t need to endure any additional time in the car. They also told me I would likely be first to go in. I didn’t like this part as much. I immediately thought of the rollercoasters at Alton Towers – in the past, when they have broken down, I have always thought I would never want to be the first on when they restart them. This felt the same – I did not want to take the risk of it breaking down again in the middle of the session and be stuck in the mask for any longer than needed. Thankfully, 40 minutes later, I was informed another lady would be ahead of me as she had another appointment to go to, so I was saved! Phew.

I finally got into the session and was feeling pretty determined not to have the mask taken off today. I asked them to turn the music right up, and talk to me continuously and practised my oncologist’s mantra over and over. Nothing bad will happen, nothing bad will happen, nothing bad will happen… I got through it all in one attempt which was a huge relief, although it almost went awry when the machine stopped for longer than usual at the halfway point. I was about to go into meltdown when it started again and could barely contain my relief – well, I had no choice as I obviously can’t move in the mask but I can smile to myself.

Music plays a huge role during treatment, as well as the staff themselves. I have a favourite radiographer, a lovely bright blonde-haired lady with a very gentle demeanour. She really does her best to put me at ease whenever she is there. Today, when the treatment started, Whitney Houston’s ‘Higher Love’ was playing, and afterwards Taylor Swift’s ‘Gorgeous’ came on. Chatting to me through the speaker in the middle of treatment, she told me how much she hated Taylor Swift. Then, when the treatment came to an end, she said “and that’s the end of the treatment Sarah, hereby ending both your pain and mine!” 

Week 2 - Disco Day 7

I read a quote on a Facebook post recently – a fellow cancer sufferer’s oncologist had to told her to consider her mindset and “think about the fact [she] could have very few side effects instead of assuming the worst case scenario. So [she] did!” While I really believe in the power of the mind, I am also quickly learning about the power of radiation, so while I am trying hard to make it a case of mind over matter, the physical realities seem to have a different path in mind. Rich brought me a cup of tea in bed this morning. It tasted like dishwater, so I – very reluctantly - had to tell him not to bother bringing tea for the time being, despite really wanting a cup of tea. My taste hasn’t completely gone, but things are starting to taste odd and water is tasting very metallic. I can’t taste my morning toast either so I may need to think of an alternative breakfast for now. Coffee is more appealing than ever, with its strong taste, so long may that continue. 

I felt quite nauseous again this morning and considered walking the dog before treatment to see if it helped. In the end I was too lazy/tired and couldn’t drag myself out of my warm comfy bed, especially given we seem to have been plunged into autumn overnight, but I enormously regretted this as I ended up getting caught in the torrential downpour this afternoon and poor Oscar and I got absolutely drenched. I keep wondering how I can get myself into a daily routine as I function so much better with some structure (yes, I’m still a toddler!), but I’m quickly learning that cancer doesn’t allow routines, nor does it allow you to make plans so it really is one day at a time.

The car journey didn’t start off too well when the driver asked me where I worked. When I told him, he replied that his brother-in-law also did a similar job, but he had been made redundant around 8 years ago. He thought that the stress of the job was responsible for his untimely death. I assumed he must have had a heart attack or similar, but he then proceeded to tell me he had died of cancer. Really not helpful given I was on my way to a cancer treatment centre!

After that unwanted exchange, I managed to catch up with an old friend (old as in long-term, rather than in age!) who I haven’t chatted to in years and we had a fab chat, which both passed the time and helped distract me from the nausea – plus it was lovely to hear all her news after so many years, and countries in their case. 

The mask didn’t go well today, I had to have it taken off twice before I managed to settle enough for the treatment. I’m not entirely sure why, I just felt a rising panic in my chest every time they bolted me in. By the 7^th session, I would have assumed I would be used to it but seems I have a way to go. Might need to start practising my breathing again!

To cheer myself up, on the way home I listened to a French & Saunders podcast called ‘Titting About’ – yes it’s really called that. It’s like being in a room with the duo making fun of themselves, each other and generally laughing a lot. They say laughter is the best medicine and it seemed to work on this journey. They ended the ‘school’ pod with some jokes:

Why did Adele cross the road?

So she could say hello from the other side!

Sorry, I couldn’t resist that one.

I’ll finish up by saying a(nother!) huge thank you to all my friends and family for your ongoing support. After publishing this blog last night I have had so many amazing messages and calls. I am so incredibly grateful for such amazing friends and family.

Week 2 - Disco Day 6

Day 6 - I am 20% through - and starting to feel pretty tired. I felt awful on Friday, with a very tickly throat and nasal 'drip' so slept terribly, and thought this was the beginning of the end. But I woke on Saturday morning feeling okay and was pretty much fine over the weekend - phew. 

I was back to it on Monday morning and the travel sickness was awful again, so I saw a doctor who prescribed some anti-sickness meds, so I am now trying those and they seem to be helping. The car journey is just horrible, I am highly tempted to drive myself as I don't feel sick that way, but I'm told I soon won't be able to drive due to tiredness and pain, so it seems pointless starting it now. The doctor also prescribed a whole goodie bag of meds - soluble paracetamol for when I can no longer swallow pills, special toothpaste for people with no saliva, and a mouthwash also to help a dry mouth. I am also rinsing with something called Healios twice a day, a tip I found online from my US counterparts, who swear by it. It's over £200 a pot in the UK so I am very lucky that my lovely sister-in-laws between them managed to buy some in the US and bring it over. Fingers crossed it works. 

I am still getting used to the mask. I was fine the last 2 days, but had a 'moment' today and had to ask them to remove it again before we got started. I've started to get into a rhythm whereby I have to close my eyes when they are putting it on, otherwise I get into a panic. Once it is on, and they have taken the photo, I can then open my eyes and see what the machine is doing. It's like a mini spaceship that moves up my right side, pauses at the top, then moves back down again. I can see my own reflection in the machine when it's above my head, which is quite a bizarre sight. As soon as the machine stops, they come in a unbolt the mask. I have a burning question in my mind, namely - if there were a fire and everyone deserted the building and left me, would I be able to push myself out of the mask through brute force? I am desperate to ask the staff this question, but as I am so frightened that the answer will be 'no' I am saving it for the very last session, once they have unbolted it. If the answer was yes then I wouldn't panic nearly as much as I do - but it's not a risk I can take in asking until it's all over! 

Today I came home and was exhausted, fell asleep on the sofa for an hour (anyone who knows me well knows I don't usually do naps!) then had to drag myself up to walk the dog. I felt like a zombie the whole walk and it didn't have the 'wake me up' effect I was hoping for. I have a feeling I will be spending a lot of time on the sofa over the coming weeks so apologies to Rich in advance for being completely unhelpful at home!

Week 1 - Disco Day 3

10%! I am 10% of the way through my radiotherapy journey. It has become a little easier each day to get into the mask and not have a massive panic attack. It seems to be better when they continue to talk to me throughout. Yesterday, they put the mask on, then off they went to the little room, leaving me for what felt like an hour (that was actually probably only 30 seconds) without speaking to me. The problem with being bolted down to a metal table in a solid thick plastic mask with no contact with a person for more than 30 seconds is that you can’t help but panic that something has gone wrong - somebody has maybe had a heart attack, or there’s a fire, and they’re all suddenly busy worrying about getting help for the person who is dying or getting out of the building, and in the meantime they’ve left me bolted to the cold metal table all by myself. Clearly, I’ve been watching too many disaster movies, because in reality all it would take would be for them to find a funny cat video on YouTube and they would all be suitably distracted while I’m bolted to the metal. I have to say it’s quite amazing what goes through your brain during these moments of being restrained. The mind can really come up with some fantastical ideas. Maybe this is where my novel will finally be born?

I saw the oncologist today, as well as the dietician and the speech and language therapist. They weighed me so that they can make sure I don’t lose too much weight throughout treatment. The looming threat of the dreaded stomach tube weighs heavy on my mind - I am going to try to avoid it at all costs, even if it means pushing soggy toast down my throat in great agony. A new friend I have made who is also going through the same treatment said that by the time she got to week 3, she was pretty much living on McDonalds cheeseburgers and Capri Suns, as everything else tasted disgusting. Not ideal I know, but a few Golden Arches would be significantly better than a feeding tube in my stomach.

I have been given some gel to apply to my throat and neck to help minimise radiation burns to my skin. On the first night, I wasn’t entirely sure where I was meant to apply the gel – should it go just to my tonsil area near my ear, or all over my neck? One side or two? Today, I asked the oncologist about the levels of radiation going to different parts of my head and neck to guide me. I had originally asked the radiographer, who had told me it was about 60% on the right side and 40% on the left. This didn’t seem to be very right-side focused to me, which is why asked my oncologist instead. She said it was more like 20% - 30% on the left side, which sounds much better because I am hoping to be able to still eat with that level of pain on the left side. We also talked about swallowing exercises that I need to do every day, multiple times a day, to keep my neck jaw and throat from seizing up due to the treatment.

The car journey home was a struggle yes again. I really do need to find a way to overcome the travel sickness otherwise it’s going to end up being worse than the radiation itself. It didn’t help that my driver spoke to me the whole way home, chatting and wanting to know how I noticed I had cancer etc. I would point him in the direction of this blog so I don’t have to keep updating him every day but then he’ll read that I said he’s annoying - #awkward.

When I got home yesterday, all I wanted to do was collapse on the sofa but, as the girls are still off school, my afternoon didn’t remotely resemble a sofa afternoon. Luckily S had a friend over and they had decided to cook us dinner – result! The downside was that they decided to make pasta from scratch so the kitchen looked as though somebody had exploded a flour bomb in the centre of it, and they were bits of pasta hanging up in all sorts of places. Music was blaring the whole afternoon. Mum had also come to visit, which was lovely. Both girls had dental appointments in the afternoon. It was lovely to see my dentist again because the last time I saw her was when she took a photo of my tumour and sent it to Swindon for analysis, kick starting this entire journey, so I am eternally grateful for her help in that regard. Dinner was delicious, and mum and I had a small drop of champagne each. I figured I might as well enjoy the good stuff while I still can, as it will be a while before any champagne passes my lips again.

Now I have two blissful days off radiotherapy before going back again on Monday. I’m somewhat dreading next week as it’s my first full five-day treatment week (I only did three this week). I’m hoping that will be someone uneventful rather like this week and that any side-effects that I do have won’t start until closer to week three or four. In the meantime, I’m trying to keep active, taking the dog out for a walk, taking the girls to their hair appointments, and I’m hoping for Friday night on the sofa. The trickiest thing currently seems to be finding the balance between taking time to process the reality of what is actually happening to me and just keeping busy, so that I don’t have too much time to think about it.

Week 1 - Disco Day 2

Session 2 is done - only 28 more to go! I have to say I’m feeling slightly more upbeat today than I was yesterday. I think yesterday the realisation that this is now my reality hit me hard – after a week of eating and drinking and just enjoying myself poolside on holdiay, I realise I had spent the last week not necessarily in denial, but also not really thinking about what was to come, or at least not really taking it seriously. This seems to be the thing with cancer - you know it’s serious, you feel you should be processing your feelings but you keep going because you have no choice. It's also the greatest irony of cancer that most people (including me) feel absolutely fine when diagnosed, and it's the treatment that makes you feel very unwell, and that's when you are pushed to your limits mentally.

My wonderful therapist said to me before surgery "Please hug yourself tight in any low moments and listen kindly to what you hear in the low moments. Those thoughts and words deserve time and space' - very wise words indeed which I heeded through my recovery from surgery. For now, though, it's one foot in front of the other to get through this and I will deal with the mental/emotional aspect afterwards.

There’s no denying yesterday was tough. It didn’t help that I also felt quite car sick. Now I am starting to get a feel for what I need to take with me to the sessions, starting with some hard-boiled sweets to help with the travel sickness. I mentioned to the lady in radiotherapy that I might need to rent an apartment close to the hospital for the last few weeks to avoid the car journeys. She suggested some travel sickness bands might be a cheaper option. She has a point.

Today, however, felt slightly better. I still had a panic when the mask went on, even though I was calm at first and was trying to convince myself I would be okay, a few minutes later I decided that I needed to have the mask off for a few moments to gather myself. The lovely staff removed the mask, I took a few moments to breathe and they put the mask back on very slowly again, bolting down a little bit at a time until I felt more comfortable with it. I have to say the team are really lovely and very understanding of any quirks that come up, or in my case mild panic about being bolted down to a table.

Today’s session seemed to go very quickly. They did the photo, removed the panels and then the machine started to move over my head, then back to the side. I think the other reason I feel better today is that after the session I had a consultation with a wellness consultant employed by the charity Penny Brohn. They work in partnership with the hospital for cancer patients to make sure that the patient is looked after, but not just from a physical perspective – that’s for the doctors to sort out – but from a whole person perspective. This is something I also look at in my working life, so I know a lot about this field, and especially its importance in someone’s wellbeing. I am very fortunate to have been offered acupuncture, reflexology and relaxation sessions to help calm me before my radiotherapy sessions. I am taking them up on every single offer as there is no doubt this is a very difficult time and I want to make the most of all of the support I am offered. It does mean that my sessions in Oxford will be longer but, with the car journey being as long as it is, it will probably be good for me to spend a little more time at the hospital before getting back in the car in terms of reducing nausea.

Today in the car I decided not to read my phone at all, nor read any messages, because I felt so unwell yesterday when I got home. Instead, I listened to an audiobook. This is the first time I have ever listened to an audiobook. This is because it’s the sort of thing I imagined doing when my eyesight was so bad that I could no longer read, but here I am in the back of a car having an audiobook read to me even though my eyesight is perfectly good (for reading at least). I chose to listen to ‘Not that kind of love’ co-written by Greg Wise and his late sister Clare Wise. Greg’s sister Clare died of cancer a few years ago and Greg was a guest on one of the ‘You, Me and the Big C’ podcasts with Deborah James, Rachel Bland and Lauren Mahon. During her illness, Clare kept a blog about her journey and, as she became too unwell to blog, her brother Greg took it over and subsequently turned into a book.

What I love about this book is that despite its harrowing content – tracking Clare’s journey through cancer and ultimately to her untimely death – it is very funny. Between the uplifting podcasts I listen to and this book, I am learning that you can find moments of happiness and humour within the cancer space. This can be a very difficult concept for people to get their head around, especially for family whose job it is to worry endlessly about you, because really, how can cancer be remotely positive?! This is often because people are either afraid to talk about cancer at all or they want to talk about it from a perspective of pity for what you are going through, and if you try to make a joke they often struggle with the humour due to the severity of the situation. But we need humour in our lives to counteract all of the negative stuff, so it’s great to read a book where there is plenty of humour, despite the awful and seemingly endless treatments.

As I go through my own cancer journey, I plan to try to find something positive and something funny every day to keep me going. I’ve already asked my friends to give me songs that either remind them of good times with me or songs they have found uplifting at a difficult time and I’m turning this into a playlist for me to listen to in the car (when I finish my audiobook obviously).

So here I am 7% of the way through my treatment (who’s counting?!) and trying hard to look on the positive side. How about tomorrow I will be 10% of the way through – that’s positivity!

I’ll end by saying the wellness consultant I saw today really helped me to see why I’m doing this. I had explained to her that I was given the choice to have adjuvant therapy or not, and I have found the choice very difficult and I continue question my decision every single day. If the doctors had told me I had to have surgery and radiotherapy, then I would accept it because that was what the doctors were telling me I needed to do to survive. But because I was given the option, I have found this decision extremely difficult. When I discussed this with the wellness consultant today, she very helpfully said to me that this treatment is a relatively short period of time during which I will feel poorly, but that afterwards, when I am living my life, l will be able to look back and believe that I made the right decision, and I will be happy I did so. It was good to hear it from someone like her because she sees this every day, and I felt better for her endorsement.