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.