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.