Student Days

Rather than having the anticipated effect of aging me, this treatment seems to be taking me back in time to my student days. On Friday night, I slept for eleven hours. I don’t think I’ve slept that long since before having children, so at least sixteen years. And given I am eating cereal for dinner these days too, I feel like I am a throwback to my 1990s self. Next I will be sporting a perm and loafers and taking my laundry home for my mum to wash.

Saturday was a really tough day. The blister under my tongue had become more painful, along with a sore at the back of my mouth which hurt every time I swallowed. My nosebleeds seemed to be getting worse too. I was simply standing in the kitchen and suddenly blood started dripping from my nose. The biggest issue I had on Saturday, though, was constant nausea. Despite taking two lots of heavy-duty nausea pills, it just wouldn’t go away. Radiation sickness is a known side-effect of treatment and all I can say is that I am grateful that this has come so late, although of course it would have been preferable had it not come at all.

Needless to say, given all of these symptoms, I didn’t really do much on Saturday. It was almost lunchtime by the time I got out of bed after my mammoth slumber. I really fancied French toast for breakfast so Rich made me a version with soft cheap ‘plastic’ bread (sourdough is out of the question at the moment), which I then had to drown in maple syrup to make it edible (not because of Rich’s cooking of course, but because otherwise it would have been too dry to swallow). I washed this down with a lukewarm milky decaf coffee. Yes, I am officially alcohol-free, caffeine-free and fun-free. But I did manage a whole piece of bread.

Lunch felt more difficult. I tried smooth peanut butter on toast again but as my saliva is now so limited, it was impossible to swallow without a mouthful of tepid tea for every bite. As much as I’ve been reluctant to rely solely on the shakes because I want to keep eating, so that my jaw keeps moving and so that I keep swallowing solid food, I think I’m getting to the point where it’s just too difficult and for a few weeks I may need to just rely on the shakes. They are really not pleasant though, sweet and sickly, with a thick gloopy texture, so I want to consume as few as possible.

I had to force myself to take the dog for a walk on Saturday afternoon, and I felt quite unwell all the way around the woods. I usually enjoy my walks, they are my sanity, but this time I couldn’t wait to get back home to lie down again. And it’s that time of year, so Saturday night was a 2-hour Strictly extravaganza with Lily performing live in the living room!

Today has been better. The nausea subsided and I felt more ‘normal’, although I have now forgotten how it feels to be normal. I met with a friend for a dog walk and it was lovely to hear some normal conversation. It is strange to think life continues around me whilst mine is on hold.

Week 6 - Day 28

It is finally Friday. In the words of Marks & Spencer, this is not just any old Friday, this is the final Friday I’ll be doing radiotherapy. In fact, I can also mark off the final Wednesday and the final Thursday, so just one Monday and one Tuesday to go now. It’s starting to feel achievable – just two more sessions. Although even with those remaining, today felt like the beginning of the end, as one of the radiographers said she is off work next week so this would be the last time I see her. You would think that would be music to my ears, but it was a surprisingly emotional moment. I am, of course, beyond excited at the prospect of finishing this hellish treatment, but at the same time I am in a routine where I see the radiographers every single day, and they have really looked after me (even though I dare say behind my back they are cursing my music choices!). It is amazing how quickly you can get used to a structure and seeing people, so from Wednesday, when I shall be blissfully lying in bed, extremely happy about not having to rush out of bed or be anywhere at a particular time, I will probably also feel a bit ‘lost’, if that is the right word.

I made a little calendar at the start of treatment and I have been marking a big black X through each day. Here’s how it now looks. It feels so surreal to be so close to the end. If only I could have a glass of champagne on Tuesday to celebrate! 

I opted for another mellow song today – ‘Chasing Cars’ by Snow Patrol. I mostly chose it because it mentions lying down quite a lot, which I seem to be doing an awful lot of at the moment. 

Quite incredibly, I am still managing to eat solid food. More soggy cereal for breakfast, a little bit of pea and asparagus risotto for lunch (my stomach would have been doing somersaults to be given a vegetable for the first time in weeks) and scrambled egg on heavily buttered toast for dinner. Plus puddings of course, to keep my calories up. I won’t pretend it is easy, and I can only eat straight after I’ve syringed 5ml of liquid morphine into my mouth along with 2 paracetamol, but I’m amazed I am still eating (as is my oncologist, who I also saw today). 

My taste is almost completely gone now, so bland foods are best as they don’t have much taste in the first place. Saliva is continuing to evaporate too and my throat gets very dry, very quickly, but I still have a little to work with and I’m trying to drink two litres of water every day which is meant to help. My neck is still okay, no external burns, just the comedy hair loss at the nape of my neck. And my jaw is now getting harder to open fully, so I need to keep doing my jaw exercises because there is a risk of developing trismus or 'lockjaw' - basically where the jaw doesn't open properly. This is a side effect of treatment, so it's critical that I try to manage this now. 

Tiredness is really the main challenge at the moment. I get up early to walk the dog and go to my appointments, but I always fall asleep in the car on the way home (woke myself up today with a big snort – oops, sorry erratic driver) and then when I walk in the door I am like a zombie, so I have a lie down. I drag myself upright for lunch and meds, then back to the sofa for the rest of the afternoon. When I am not actually asleep, I am thinking about being asleep. It is all-consuming! Strangely, it isn’t a whole-body tiredness like you get with the flu – my limbs don’t feel heavy at all, but rather a mental tiredness where my eyelids feel as though they have weights sewn on and my brain is unable to focus on anything. So I apologise if you have sent me a message lately and have had no response. I am finding it challenging to think clearly, even for a simple message reply, but I will get back to you soon.

And now, it's back to the sofa for my evening shift before retiring to bed for what I hope is a very long sleep. Having struggled with weekends for the past five weeks, the fatigue means this one is now very welcome and, for once, I shall be looking forward to Monday morning (and Tuesday) to put those final crosses in the boxes.

Week 6 - Day 27

Last night I decided I had had enough, so I took myself off into town to a local restaurant where I ordered steak and chips, washed down with a delectable (large) glass of Malbec. Oh how I have missed tasty, delicious food! The meat melted in my mouth, and the chips were crispy and salty on the outside, soft and fluffy on the outside. And the wine….Sadly I woke up before dessert arrived.

I am pleased to say that the sun came back out today and it has been far more positive than yesterday. The weather seems to make such a difference when there isn’t much else to focus on apart from treatment. Yesterday was so grey and rainy, whereas today there were blue skies and sunshine. The early starts are becoming increasingly difficult given the fatigue is really now setting in. I set the alarm for 6:45am, struggled to eat some soggy cereal and then took the dog out for a walk. I learned after breakfast that it is now even painful to burp! It was scarf-and-gloves cold outside but the fresh air certainly helped to wake me up. The main reason for getting up so early and taking the dog out before treatment was so that when I came home I could just hit the sofa for the afternoon. I missed my sofa time yesterday as both girls were home for an inset day, so today I wanted to make sure I prioritised my slothfulness. Well, that, as well as resting, gathering my thoughts and letting my body try to start healing.

It was very crisp and cold on my walk. I have pounded the ground of the woods in all weathers, through good times and bad, and the changing seasons never cease to amaze me. It is now very clearly moving into winter. The ground is carpeted with autumnal colours, leaves of all shapes and sizes from the myriad of huge trees. It’s amazing to think that I started this treatment in August, when it was still summer, everything was still in full bloom and I went walking in shorts and a t-shirt. Nature has a very good way of showing you how quickly time passes, even when it feels slow at the time.

Today was a largely uneventful day. I am quickly learning that uneventful is a good thing when you’re going through radiotherapy. I had a(nother) new driver today. I’ve probably now had six or seven different drivers. This one asked me which route was best to get to the hospital. Why do some drivers do that? Isn’t that their job? I pointed to my pillow and explained that I mostly have my eyes closed for the journey, so I have no idea which way we normally go. He was the same on the way back, providing a running commentary on which roads were closed and why he had chosen a particular route. I wasn't rude enough to tell him that I don't care where the next set of temporary lights may be, but I did make a big show of putting in my air pods and did my very best to ignore him.

Music today was ‘Fix You’ by Coldplay. I usually try to choose upbeat songs when feeling tired, but today I was in the mood for something more mellow. Also because the line ‘stuck in reverse’ felt fitting. Actually, it feels pertinent for the past two years of my life but that’s another story. 

I can’t quite believe that I only have to put that ghastly mask over my face three more times, although right now that feels like the highest mountain of all to climb. I am starting to open my eyes a little more now that I feel more comfortable; trying to take in what it feels like and what’s going on around me. I'll try to summarise it - so, I lie on the cold, hard metal 'bed' with a sheet of blue medical paper over it. There is a plastic piece I put my head onto and a foam under-knee support block, so I have to position myself as best I can onto those. I pull my hair out of the way, pull my t-shirt down over my shoulders and the team ask me to confirm my name, address, date of birth and the area being treated, to check I am the right person. The mask is then laid over my face. They then ask if I am ready. I say yes, so they start closing the bolts, one by one. The mask becomes suffocatingly tight; thank goodness for the hole for my eyes, nose and mouth. My lips feel as though they are being squashed and I cannot move my upper body at all. The lights are then switched off, and the red lights come on. There are three in total, one in front and one either side of me. They are on black boxes suspended from the ceiling that resemble screen projectors. There are also four bright green spotlights beaming down. The bed is moved around and up and down until I am in the right spot, two panels are pulled out either side of me, and the team leave the room. This all takes around five minutes. When they have done a scan to check everything is in the right place, one of them comes back in to push the panels away, then leaves again. Everything is controlled from the other side of the wall, which is where they sit when I am being radiated. The machine then starts up - there is a single green light in the centre of the circular machine, and I can see my reflection in the shiny silver window. It moves over my right side and stops just left of my head, waits about 40 seconds, then moves back down my right side. That part takes less than five minutes. One of the team then comes back to unbolt me, lowers the bed and I am free. And breathe. 

One of the quirky things that happens almost every day is that as soon as they put the mask on and start bolting me down, I develop an itch somewhere on my head, usually around my nose, but sometimes also my eyes. It’s that sort of feeling where you know you have a loose hair touching your skin - it’s very tickly and you know something is there, but you can’t quite locate it. In this case, of course, I can’t itch because the mask is immovable, so any itch has to be mentally blocked out. I am amazed at how the human mind can mentally remove a physical itch. This is a skill I have developed over the course of treatment. When treatment first started, I would always give my nose and eyes and a good rub before they put the mask on to make sure I had removed any stray hairs. It then became a running joke that I was channelling my inner Nadal and was developing some pre-mask rituals. 

When I got home today I went to bed for 2 hours. I think I slept, but the cat kept coming in to ‘check’ on me and the dog was barking a lot, but I must have managed to some rest. I got up only because I needed my meds, so I hauled my sorry self downstairs, dosed myself up and then fell onto the sofa. I didn’t even bother trying to eat lunch, I drank a shake instead. I definitely feel more tired today than I have any other day so far. But I am now 90% of the way through treatment so it’s certainly to be expected. 

After yesterday’s gloomy post, I have had so many thoughtful and encouraging messages of support, I felt quite tearful today (in a good way of course!). Without wanting to sound like a scratched record, I am so grateful to all my lovely friends and family supporting me through this awful journey. You make me smile every day, so thank you❤️

 

Week 6 - Day 26

Today has felt like an emotional rollercoaster. Nothing drastic or dreadful happened, but it seems my emotions are starting to go haywire now that I’m approaching the end of treatment. I’m finding even the smallest issues harder to deal with. It's as though I have been going through the motions physically to get through the gruelling treatment schedule, but I haven't allowed myself any emotional space to process what was happening, because that would have been too much on top of the physical aspect. But as treatment is coming to an end, those emotions are starting to sneak, unexpectedly, back into my daily life. I wasn't sure whether to post anything today given how much I resemble Eeyore, but I want to be honest, especially as this blog may be read by others who have been newly diagnosed and want to know what to expect. So it's warts and all I'm afraid! 

To start with, I had yet another morning where my schedule was changed at the last minute. I had been told that my reflexology had been rescheduled to today, straight after my treatment. I arrived on time, but I wasn’t called until 20 minutes later, the time my reflexology was due to start. The radiographer said not to worry, the reflexologist would flex her time to accommodate me. After I had finished treatment, however, I was told there had been a double booking so my reflexology was cancelled. To a normal person, on a normal day, this would not have been an issue at all, but to me at that moment in time, it felt like a lot. I was too tired to complain and besides, there are people in the waiting room who are a lot worse off than me so I am happy to let them have the reflexology if it helps them. I just couldn’t help wondering why I was bumped, rather than someone else, especially as it wasn’t the first time. As I say, for ‘normal me’ this would not have mattered, but I just find it so unsettling when they keep changing things. It takes so much effort and courage to psych myself up to get through each day so keeping to the schedule feels important.

I did manage to invite Kenny and Dolly into the treatment room today though and when it finished, The Gambler came on afterwards so I had a little private karaoke session in my mind (I think everyone would prefer it that way in future too!). Even that didn’t really cheer me up today though. I am just having one of those days where I feel fed up. I am fed up of the long car journeys, fed up of the waiting room, fed up of seeing the inside of my eyelids for hours every morning (I close my eyes in the car on my way to treatment, I close my eyes in the treatment room, then I close my eyes again on the way home). I am even fed up of listening to music. I couldn’t find anything appealing to listen to on the way home. I ended up putting on some classical music (I settled on Beethoven's Moonlight Sonata) and fell asleep for much of the journey. I’m also fed up of being so tired!

I was tempted to have a meal replacement shake for lunch today because eating now feels like the most enormous effort. Nothing tastes good, the textures are all wrong and it hurts. I was concerned that resorting to a liquid lunch – sadly not the fun champagne-fuelled kind - might just compound my feeling so jaded, so I forced myself to try some mushroom ravioli. I had to coat them in olive oil and parmesan to give them an inkling of taste and help me to swallow them. I did not remotely enjoy any of it. I also ate the remaining scone with more clotted cream, and the cats are now my best friends forever because I was more than happy to offload some of the cream into their little mouths. 

Pain has become slightly worse today, exacerbated by a nasty blister under my tongue. Think new shoe blister, only in your mouth. Saliva is definitely deserting me and I am constantly thirsty (also hungry and tired, see above). The mucus is increasing but still no spit bucket needed. It’s also an effort to fully open my jaw now so I need to remember to do my exercises more often. It is definitely getting hard and there is worse to come, but tomorrow is another day and hopefully it will be a more positive one. 

 

Week 5 - Day 25

Week 5 is a wrap! I was actually looking forward to this morning – I had a blissful hour of reflexology booked before my treatment. This did mean an early start, but it would be worth it for some proper relaxation, and I would be feeling nice and zen for the radiation itself. However, rather like yesterday, this morning brought another unfortunate start - this time a burst water main near Oxford which resulted in a road closure, added another 45 minutes to the journey and meant I had already missed three-quarters of my appointment when I arrived. Not to worry, they said, because your reflexologist isn’t here either so I’m afraid it’s cancelled. Oh. So glad I forced myself out of bed at such an ungodly hour. I went straight in for treatment instead and then it took another hour and a half to get home. I honestly never want to see the inside of a car again when this is over. 

Music today was chosen by my lovely friend Carol-Ann, who messaged me yesterday suggesting 'What's Up' by 4 Non Blondes. I can totally relate to 'trying to get up that great big hill of hope' at the moment, not to mention the line 'I am feeling a little peculiar'. Just realised I forgot to mention music yesterday. After all the disruption, I was thrown on my music choice as I had wanted a good karaoke song for my last week, but then I felt a bit embarrassed asking the strangers in Windsor for 'Islands in the Stream' so I chickened out and opted for safer Adele 'Someone Like You'. Then when I ended up staying in Oxford, I was all flustered, forgot my original choice and stuck with Adele. I think Dolly and Kenny will still be making an appearance this week though, don't worry ;-)

I took the dog straight out for a walk when I got home. For the first time, it truly felt like an effort to make myself go out rather than collapse on the sofa, so it was more of a crawl than a walk, but the dog was happy nonetheless and I felt better for the fresh air after spending another 3.5 hours staring at the back of a car seat headrest.

I was concerned that last night’s fish pie failure would mean I would be moving onto meal replacement shakes today, but I did manage my usual soggy Rice Krispies for breakfast, and then a heavily buttered peanut butter sandwich for lunch (smooth of course), washed down with lukewarm tea. It all sounds so delicious doesn’t it? Bet I am making you hungry with all this talk of gourmet cuisine. Afternoon snack was nice – some vanilla Hagen Daazs blended with Speculoos syrup (thanks Steve and Ellen!) to make a sort of milkshake type thing. A good one for the arteries. Dinner was a chicken and ham gratin, but I have come to the conclusion that meat is now officially off the menu. When you can’t taste it properly, the texture is just wrong. I managed a small amount, but gave up and had a some soggy cornflakes and soggy cheerios instead. It feels like being a student all over again, minus the beans and toast.

My neck is finally starting to go a little red but I am still hoping I can avoid serious skin burns until the end of treatment, because I can’t imagine how painful it would be to continue to radiate onto existing burns (although this is what is happening in my throat). It would be like getting badly sunburned, and then going back out for another day of tanning. Ouch. I have lost a small amount of hair at the nape of my neck, sort of like a comedy 1980s undercut (not noticeable thank goodness as my longer hair covers it!). The fact that I’m at the end of week 5 and these things are only just happening is positive. Many people suffer from these side effects far earlier, so I guess I am lucky in that regard. Pain levels remain the same (manageable with pain meds), other than when I eat, which is when it sky-rockets. Mucus is about the same too. Thankfully no spit buckets needed just yet. 

This is the fascinating thing about radiotherapy and the duration of treatment – I had expected all of these side effects to worsen over time, and indeed they do, but sometimes quite slowly, and sometimes they plateau or even get better before they get worse. The worst symptoms today have been dizziness and nausea. I am no longer sure if my anti-sickness meds are making me feel less sick or more sick when combined with everything else I am taking. I certainly don't feel normal, definitely not on top of the world, as The Carpenters would say, but still standing/walking/eating (just about) which feels quite miraculous given what I have put my poor body through. I am currently touching a lot of very solid wood.

I'll finish today's post by saying another huge thank you to all of you for taking the time out of your busy days to read this blog and to send me your lovely, kind, heartwarming messages of support and encouragement. I can't always reply straight away but it is so nice to hear from you all. Going through cancer treatment can certainly be a difficult time, so it is lovely to hear the pings on my phone reminding me that there is life outside of this isolating world of treatment. I am so looking forward to the time when I am well enough to start living my life again and seeing my lovely friends and family.

Week 5 - Day 24

Today’s session was 9.15am (earlier than usual) so the erratic driver picked me up at 8am. Topic of pointless conversation today was a billionaire client of his who apparently gets stressed about needing the toilet on long car journeys, and who only tips £2. The only tip he’ll be getting from me will be to tell him to stop providing passengers with unsolicited information about his life.

Things got even better when I arrived at the hospital to be told that the internet was down. The radiotherapy machine can’t operate without a working internet, so my early appointment came and went and I was still sitting in the waiting room. At 10am they took me into a little room to tell me they didn’t know when the internet would be back up and running, so a car would take me to Windsor for my treatment instead. Oh joy. Better than Milton Keynes I suppose, as the journey home is shorter at least. It wasn’t the best start to the week though. Going to a different centre with different staff is quite a daunting prospect. I can currently just about get through the daily mask ordeal because the staff know me, they know how to calm me and they know when to put the music on – and how loudly to play it. We are now in a routine and it seems to work. The Windsor staff would know none of this. This made me feel very apprehensive, but I didn’t have a choice, so I had to tell myself to just go to Windsor and take it step by step. As none of the Oxford staff were going to be in Windsor with me, I also had to take my mask in the car, so it was put into a clear plastic bag and sat in the footwell next to me. I wasn’t looking forward to looking at it for the next hour; there was a strong possibility I might ‘accidentally’ stamp on it.

We had only been in the car five minutes when I realised I had forgotten to pick up my prescription, so I asked the driver to turn around and go back to the hospital. At reception, I overheard one of the staff members saying the internet was now back up. This was music to my ears and I immediately asked to have my treatment there instead of Windsor. Initially, I was told no, I still had to go to Windsor because it was now scheduled and it would still take an hour before the machine would be working again. I would prefer to sit in the Oxford waiting room rather than spend another hour in the car, so after much discussion, they agreed to fit me back in to the schedule in Oxford. This was a huge relief and, despite another hour of waiting around, I was very pleased to stay on familiar territory.

This all meant I got home 2 hours later than expected, so rather than the dog walk I had planned, I went to sleep for an hour instead. It’s amazing how tired I have become. As many of you know, I have always been a pretty amazing sleeper – if there were an Olympic sleeping category, there’s a good chance I might have qualified in my younger days - but this is far beyond what I am normally capable of.

After my little catnap, my mum arrived with some goodies for me and the girls, which was a lovely treat. Dinner was fish pie – I managed some of it but eating is definitely getting harder now, not to mention completely losing its appeal. Everything burns, even after the morphine, and when I do manage to get some food down, I can’t taste it so it’s a very odd experience.  The creme caramel desserts are still sliding down nicely, so I may be on a pudding diet very soon! 

Goodbye (good riddance) September

Well that was possibly the longest September ever. I can’t even begin to tell you how happy I am that it is finally October. October is not normally a month that I particularly look forward to but, for obvious reasons, this October couldn’t come quickly enough. And now here it is, at last, meaning there must be fewer than 11 days until the end of treatment.

After hearing me complain about how long, boring and empty my weekends have become through treatment, Rich very kindly surprised me yesterday with some tickets for the Saturday matinee of ‘The Girl on the Train’ at our local theatre. Unfortunately for Rich, he couldn’t join me because Saturday afternoons are filled with exciting tasks such as driving the girls to dance/gym/work, and since I spend my days in a morphine-induced haze, I am no longer safe to drive (frustrating, although I could certainly get used to being chauffeured!).

So I went to the theatre with my lovely friend Jules. It was such a treat to feel ‘normal’ again, although it did make me realise quite how far from normal I actually am at the moment. For a start, it was quite an effort to have to make an effort - I found it exhausting simply getting dressed into something other than one of my 5 stretch-neck t-shirts and putting on a minimal amount of make-up. I had to make sure I had taken all my meds so I wasn’t caught short. I was also slightly apprehensive about going out in public. The only place I venture to these days is the hospital, so the only people I interact with are the car drivers and the hospital staff. Feeling significantly under the weather doesn’t really lend itself to socialising - partly because I feel so awful, not just with pain but with all of the unpleasant side effects of all the drugs, and partly because I don’t really have very much to say (those who know me well know that this is a rare occurrence!). I go to treatment and I come home again, and that’s about all there is to my life currently. This also makes it all the more difficult to see people living normal lives while we go through such turmoil as a family.

Thankfully, Rich had bought matinee tickets which felt more manageable in terms of staying awake than an evening performance but, in the end, this earlier performance didn’t make any difference. I still spent most of it trying to stop myself falling asleep. Don’t get me wrong, the show itself was good, but it is mostly set in darkness and, coupled with my cocktail of strong medication, it was a real challenge to stop myself nodding off, despite sitting upright on a seat with no headrest. I tried eating some Haribo during the interval. They burned. I drank water to put out the fire. I persevered, thinking the sugar would be a good boost, but alas, it felt as though there were tiny weights glued to each of my eyelashes and I spent the second half trying to keep my eyes open. All in all, it was lovely to escape these four walls, but it did make me realise I’m probably not as ‘well’ as I think I am. I wasn’t capable of doing much when I got home, spent the evening on the sofa and slept for more than 10 hours that night. Who knew that being driven to a place where you sit down in darkness for 2 hours and then driven home again could be so exhausting?!

Today was slightly more mellow. A nice lie-in, a dog walk, family catch ups, some boring chores and I even attempted to eat a roast. It wasn't entirely successful; it all tasted so odd. It's difficult to describe. There is some taste, but it's not taste as I know it. I managed to eat some well-cooked carrot, and the Yorkshire was easy too, especially coated in gravy. The meat, roasties and kale were sadly all too difficult. One day, I will eat - and enjoy - these foods again, but for now they are off the menu. The food wasn't the main focus today though, because all day, in the back of my mind, I have been wishing the day away so I can get on with next week and get this whole lengthy, unpleasant treatment over with.