Acalendrical Anxiety

Time seems to be passing really quickly since treatment stopped. Through treatment, it felt as though I was grinding agonisingly slowly through each day, minute by minute, painful second by painful second, but now treatment is over, time seems to have accelerated. It is almost 3 weeks since treatment stopped. That is half the time of the treatment itself (although I can confirm it felt a lot longer when I was going through it). It is probably because my days continue to be unstructured and (in theory) I have nothing to do but focus on my recovery. I looked this up recently – unstructured time. There is actually a thing called ‘Dimanchophobia’ (or at least, according to author Douglas Coupland it is a ‘thing’) which apparently is:

 “Fear of Sundays, not in a religious sense but rather, a condition that reflects fear of unstructured time. Also known as acalendrical anxiety. Not to be confused with didominicaphobia, or kyriakephobia, fear of the Lord's Day.”

Acalendrical anxiety. There certainly is a diagnosis for everything. In my case, I’m not just Dimanchophobic, I think I’m ‘Semaineophobic’ as my lack of structure permeates my entire week. I’m also experiencing a little cabin fever. I am fortunate in that our house has plenty of space so I’m not confined to the same room day in, day out, but my eyes still witness the same scenery every day and, combined with my lack of independence due to not driving, it is taking its toll on me.

Thank goodness for the daily dog walks, although even those have become a chore now that winter is almost upon us. It’s not particularly cold, in fact, it’s the opposite for this time of year, but it is very wet. I left the house in sunglasses today and ended up completely drenched from the torrential downpour that hit me halfway through. Endless grey skies and rainy days mean gallons of mud, soggy clothing and a general feeling of dreariness. I had originally been pleased to have my treatment going into winter because I felt I wouldn’t have the feeling of missing out on the summer. Now I am starting to think that recovery in 25 degree sunshine might have been a lot more enjoyable.

I am probably feeling more worn out this week because the girls have been on half term for the past 1.5 weeks, so my recovery has been put somewhat on the back burner. Not because the girls are not sympathetic or helpful, because they are (well, at times, when reminded!), but simply because having a teenager and a ‘tweenager’ at home 24/7 is not peaceful, no matter how delightful said children may be. This has been highlighted by the fact that Rich took them away for two nights on Thursday and Friday, so I was left on my own to enjoy some rare and blissful solitude – just what the doctor ordered (if only peace and quiet could actually come on a prescription). It made me realise that is what recovery should look like. I only had to think about myself – well, myself and the 3 pets. The pets are fairly low maintenance. Thankfully they don’t shout from a different toom demanding something be brought to them or ask where the top they took off and dumped on the floor in a heap is. There are no timings or deadlines to adhere to, apart from feeding time and medicating our gorgeous but sadly epileptic cat. I could have done without this because it meant having to set an alarm both mornings, thereby removing the rare opportunity to have a long lie in. Still, none of that really prevented me from relaxing and enjoying some true downtime, which was really lovely. It’s back to school tomorrow, so I will have my days free once again, although as Rich works from home, I still don’t get any peace as I can hear him on seemingly endless work calls each day. If only I could soundproof the office, I would finally have peace, but in the meantime I guess I just need to crank up the TV volume.

In terms of my recovery, things continue to be very up-and-down. I have to say that by week three I was expecting to be a lot more stable, but this doesn’t appear to be the case. I was feeling reasonably okay on Friday so decided to push myself on the eating front, trying first some pizza and then an alcohol-free beer. I had thought the tomato sauce would burn – it certainly did after three slices – but I am glad I tried. I also thought the beer would sting but it didn’t at all. For the first time in months, I felt almost like a normal person having a slice of pizza and a beer on a Friday night.

The next day, however, I paid the price. The little blister that I have had under my tongue for some time seemed to have grown so much overnight that it covered around half of the underside of my tongue. This is so incredibly painful, and has meant a few backward steps on the eating front since Friday. On the plus side, the pain in my throat is getting gradually better. As with most pain, it feels worse last thing at night and first thing in the morning, but it is infinitely more bearable than the ulcer. 

In theory, at the moment, I seem to have an enviable 'clean' lifestyle. No caffeine, no alcohol, no meat (also no fun, but that’s another story). However, this view is missing the fact that I am pretty much living on cake and puddings! Delicious, but definitely not a long-term solution and I will need to wean myself off this soon! Fruit and veg are still too acidic, but I am very much looking forward to getting back to more regular eating. Bizarrely, water is also now tasting odd, sort of sweet and syrupy. I have heard of so many people experiencing this through treatment, but never 3 weeks later. My taste is also changing on a daily basis - cake that I could taste yesterday has zero flavour today. Recovery is most definitely not linear.

Ultrasound

Another weekend has come and gone, and things are very much still the same. It’s funny, we hold the end of treatment as such an aspirational milestone, and it certainly is, but I am quickly learning that it does not equate to the finish line. I recently read a blog post that said the “last day of treatment is the first day of the next chapter - survivorship.” It is easy to feel discouraged now that treatment is over and I don’t feel any better, but the key seems to be to continue to take things one day at a time, little step by little step.

All that said, I am pleased to report two small improvements, namely, my nose no longer bleeds and my gums are no longer agony when I brush my teeth. Small wins! Sadly there is no change yet in the agonising burning pain at the back of my mouth, so eating continues to be a challenge. 

Fatigue is still very much dominates my life. I am still not managing to do a great deal beyond walking the dog, laundry and taking care of myself (meds, rinses, gels, etc.). Friday morning I got to road test the new waterproof trousers Rich had bought for me. I can confirm they are indeed waterproof! It absolutely poured down on my walk, but I was bone dry in a waterproof coat (borrowed from my daughter for DofE), waterproof trousers and wellies. I was, however, absolutely baking, so lesson learned is to wear lighter clothing underneath.

It was back to Oxford on Friday for my check up with my oncologist. I have not missed that drive! Thankfully this time it was Rich driving so I could sit in the front seat like a big girl. I am also still on my anti-sickness meds for the opiates, so these came in handy for the journey. I also haven’t missed the hospital. I saw two of my radiographers at reception, who thanked me again for the chocolates and told us a story about one of them removing the seal from around the tub, taking out all of the Snickers bars, and then putting the seal back on, so the others thought they had a dud box with no Snickers! I probably could have just bought him a few Snickers bars if I had just told me! In a strange way, it was nice to see them again, probably only because I was safe in the knowledge that I didn’t have to go back into the radiotherapy room and put the dreaded mask on again. They were very patient and kind to me and for that I am very grateful.

The appointment with my oncologist went well. She was pleased with my progress, in the sense that I didn’t get any worse after treatment ended, when the majority of patients do, and she assured me that in another few weeks I should gradually start to feel better. I was signed off from the Speech & Language team as they are pleased that I have managed to keep eating, my jaw opening is good (it clearly pays to do the daily exercises! Although I will admit I forgot some days, and others it was too painful, but I mostly tried), my saliva looks okay (a bit lacking, but nothing catastrophic) and my swallowing function is fine. This was all very pleasing, both to the doctor and to me. I also asked a critical question – when can I have spa treatments again. She estimated December, which is something to look forward to. She also said my taste should return fully in the next 8 weeks or so. Hopefully in time for a full Christmas roast!

She examined my neck and felt the palpable node I had mentioned. She said she wasn’t concerned about it, but she would refer me for an ultrasound, more to put my mind at rest than hers. I was extremely lucky to get an appointment same day, but it meant we had to wait an hour. We decided to leave the hospital to get some lunch, so headed to the nearby M&S Food Hall. Such a treat! It is so hard to browse the aisles and look at all the tempting food, knowing I can’t eat most of it. I did manage to stock up on a few ready meals that I think I can manage to eat at least some of, as well as some delectable custard-filled choux buns and cheesecake. It is going to be a challenge to wean myself off these delicious puddings when I’m back to eating normally again.

It was then back to the hospital for the ultrasound. The sonographer was a head and neck specialist and was really helpful in explaining the reason the node might be swollen. Apparently, we have 600 lymph nodes in our body, 300 of which are in our necks, because this is the main point of entry for infections (mouth, nose, etc.). I had 19 removed during my neck dissection, so the one that I can feel is likely doing the job of the missing 19 in terms of fighting infection, which is why is it a little swollen. Like my oncologist, he also said it was probably nothing to worry about, it’s very small (3mm) and he couldn’t see anything untoward on the scan. He also mentioned something called a ‘hilum’ which is normally seen on a non-cancerous node, but he couldn’t see one on this particular node. The lack of hilum can, but does not in itself, indicate metastasis. However, in this case it is more likely to be because the node is so small.

I was told to let them know if I notice it getting any bigger, otherwise my MRI and PET scans will be in January and they will check it then. I felt very ambivalent about the outcome as I left the hospital. The doctors were nothing but reassuring, but having just been subjected to two rounds of brutal treatment for a stage 2 cancer, it's hard to not worry when something isn't right. I suspect my takeaway from the scan was very different from Rich’s. I’m guessing it’s something like this:

What Rich heard: The node is likely to be reactive to the inflammation in the oropharynx but it’s currently too small to tell. It’s very likely nothing to worry about, but keep an eye on it. It will be fine.

What I heard: It’s too small to tell, so it is possible that it could be cancer, especially as it doesn’t have a hilum, but we won’t know until it grows bigger, by which time it might have spread to your lungs. Come back in 3 months.

Of course, he didn’t say any of this, it was all in my mind, and I am, of course, going to try very hard not to think about it over the next few months. Easier said than done though. I just wish there could be a definitive test they could do now to truly rule it out.

In other news, Halloween is fast approaching so Lily kicked off the horror theme this evening by making a Halloween cake. She did have a bit of an accident while making it though, as a piece of the glass mixing bowl shot up and lodged in her cheek - ouch! Makes a nice change that it's not my blood I see! 

(NOTE: no children were harmed in the making of this cake)

Recovery Week 2

It has now been one week and one day since my last radiotherapy session. I (sort of) tried to celebrate yesterday to mark the one-week point. It was a gorgeous sunny day, so I met a friend for a coffee in town, followed by a walk with the dogs around the park. It was so lovely to get outside, feel the sun on my skin and enjoy a drink that was not prepared in my own kitchen. I even tried a blueberry muffin, and managed at least half of it as long as I chased every mouthful with water. It is strange how self-conscious I felt, though, eating and drinking in public for the first time since treatment. At home, if something burns, I can shout or groan and throw away the offending item, and usually just make myself a new, less painful version, probably after a quick lie down to recover. In a café or restaurant, I obviously can’t do this, so it was quite nerve-wracking to try it. I am pleased to say it went well, so that was quite an achievement.

I had walked into town and back again, as well as the park walk with the dog, so I was pretty tired by the time I arrived home, but it was too late to nap as the girls got home from school shortly after. I had a really nice day, but I paid the price today. The combination of the long walk, the angst about the coffee and the lack of afternoon snooze really wiped me out and I have struggled to function today. This will be quite hard to believe, but I was even more tired than usual! It doesn’t seem to matter how much I sleep at the moment, it’s just not enough. There may be a Guinness world record coming up if I continue this way.  

Other than the tiredness, which seems to be constant, most of the other side-effects are still very intermittent, as they were through treatment too. I can feel pretty well one day, but awful the next. I can’t say I have yet seen any actual signs of ‘recovery’ in the past 8 days, but I guess it is still early and hopefully some of the symptoms will start to ease soon.

In the meantime, I’m continuing with my TV bonanza. Bake Off last night was incredibly difficult to watch. I wouldn’t say apple cake is a favourite of mine, but I desperately wanted some after watching last night’s show! So much so, that I almost made one today, but that required energy, which I don’t have, so I settled for a shop-bought crumble with custard instead (but couldn’t eat the fruit as it burned, so I basically ate the crumbly part – still nice, sort of, because I can only partially taste it). 

It's a good job I've got this one to keep me company on the sofa every afternoon and evening - he is living his very best life!

The burning in my throat hasn’t subsided at all yet. I think that is the part I am most looking forward to easing, so that I can eat a wider variety of foods again, and so that I can start to reduce the amount of morphine and codeine I am taking.

Nose bleeds have also been on and off. Thankfully off again today so that saved a lot of toilet paper this morning. Mucus is also inconsistent. Some days it is awful and I am grunting and coughing like a 90 year old who has smoked for life, coughing up blood and phlegm and sometimes things that seem to resemble internal body parts. Other days I barely notice it. The dizziness, however, seems to be pretty constant, so I will definitely be raising this with my oncologist on Friday. I can’t stand up at all anymore without everything going black, even if I have a tummy full of food and am well-hydrated.

I haven’t even started to think about trying to deal with the emotional aspects of all of this. All I can think at the moment is that I am bored, so bored, but I don’t have the energy to do anything or go anywhere. Even a coffee in town tipped me over the edge! I am hoping this coming week might see some signs of progress, but I was warned that it could be a few more weeks of things staying the same, or even getting worse, before they get better. This is so hard to process mentally – after going through surgery and all that recovery entailed, then the 6 weeks of gruelling treatment – I just want to start moving forward, even tiny steps in the right direction. Maybe for this week it’s the nosebleeds, so I’ll take that, and hope for something else next week. 

Recovery Day 5

It has now been five days since I finished my treatment. That time has mostly passed in a fog, each day blending seamlessly into the next, time punctuated only by my medication schedule. The only distinction I currently have between a weekday and a weekend is that the girls are off school on a weekend but, with half term rapidly approaching, they will soon be off school for 11 days. During this time, I suspect the blurriness will become increasingly worse. It is amazing how easy it is to fill a day doing, well, not very much at all. Previously, I would have been awake/out of bed for the best part of 16 or 17 hours each day; now it’s amazing if I manage to be out of bed for 12 hours.

What is also amazing is that I seem to be able to find things to write about even when I have nothing to write about. I started thinking about this post as I sat down at my computer and immediately thought I have nothing to say, because I have done nothing remotely exciting. I have managed to watch a disproportionate number of TV shows with the theme of a murder resulting from an extramarital affair. I haven’t consciously chosen this topic, however, there seem to be a lot of them available and I can’t resist a good drama. They also pass the time very easily without any brain power required. So far I have watched The Secret with James Nesbitt and this week, Candy, which involved an axe murder so was pretty gory in parts.

I am still managing to take the dog for a walk every day and I’ve been lucky that the weather has been mostly fine, even sunny at times. Autumn is now in full swing, and the woods are an array of beautiful colours, ranging from bright reds, yellows and oranges, to browns and some remaining greens. I know I shouldn’t consider my treatment in terms of timing, but I can’t help thinking it has worked out well (if there can be such a thing), as we are now in autumn, the leaves are falling from the trees, the temperature is dropping and the days are drawing in and getting darker - a perfect time to hibernate! Whereas in summer I would resent being indoors and sleeping a lot, at this time of year it feels okay, even right that I should be hunkering down and getting myself into recovery mode through the winter. I hope to emerge from all of this in the spring like a new butterfly, having left the cocoon of cancer behind.

(stunning colours - not my house by the way!)

That said, I am already thinking ahead to the coming months - the run-up to Christmas - and what I might be able to do in that time to cheer myself up. I would love to get to London to catch up with friends, enjoy some lunches out and maybe see a show. See more of my family who I haven't seen in ages. Finally have those long overdue spa weekends with my good friends. Coffees, long dog walks (thanks so much for the book Helen!) and cheeky glasses of champagne with friends locally. Unfortunately, I can’t really plan anything at the moment because I don’t know how long it will take before I feel well enough to do these things again. For some people, recovery takes a few weeks, and for others it can take a lot longer. As far as I can tell, from speaking to those have been through this, it really is very up-and-down, so one week I could be feeling fine and the next week the fatigue could come back and hit me with a vengeance. This makes things very hard to plan – although I have no doubt I will find a way somehow!

In terms of symptoms, I haven’t seen any significant changes over past five days, other than the dizziness which continues along with the nausea and fatigue. I am wondering if the dizziness could be due to low blood pressure, so I will ask my oncologist about this when I meet with her on Friday. The pain remains the same, as does the mucus and dry mouth. The positive side of this, of course, is that I haven’t got any worse (yet!). Although I have reverted to cheese soufflés and rice puddings rather than more challenging food after the pain I had following the fish supper on Friday. Rich cooked a delicious-looking paella for dinner tonight. I tried the rice and peas, but sadly the chicken and chorizo are still a step too far. He washed it down with a large glass of Bordeaux red, and all I could do was have a good inhale - it conjured up happy memories of wintery Sundays, in front of the fire, after a nice roast. I will add that to my list of things to look forward to.

Unproductive!

Three mornings have now passed since radiotherapy stopped. The first morning I couldn’t sleep late because our cleaner comes early on Wednesday morning and I also had a meeting with a psychologist from the hospital. Yesterday and today, however, I have managed to stay in bed until around 10am, then got up and walked the dog, before coming home to a lazy afternoon on the sofa with a cheeky snooze thrown in. Wednesday afternoon I managed a mammoth almost-three-hour nap, but yesterday was only half an hour, because I was woken up by the girls getting home from school and Lily demanding that I wash her hoodie ahead of non-uniform day today. Gotta love the notice they give you for these things.

I was warned that things would get worse in the weeks after treatment finished. I took this to mean the pain would get worse, but actually, so far, it seems to be not just the pain that is worse, but I seem to be getting new symptoms too. For example, I have now started to feel dizzy, particularly when I stand up from sitting or lying, which makes it hard to be upright for more than a few minutes. The mucus is now coming thick and fast, so I need to spit quite frequently, and my throat is more sore than it has been to date, even after I have taken meds. On the plus side, my nosebleeds seem to be easing up and there’s no longer blood dripping from my nose constantly.

The strange thing is that since I’m no longer going to Oxford every day and therefore have more time on my hands, my brain is telling me I should be doing something productive. I desperately want to start pottering around the house, sorting out drawers and cupboards, cleaning rooms, anything to keep busy – but my body is telling me otherwise and I have zero energy. I was meant to go for a coffee today with a good friend, but I had to postpone it because I felt too dizzy and tired.

On the one hand, I am fully embracing this new 'doing nothing' lifestyle. It has been a very long time since I’ve had the luxury of being at home with nothing to do. Don’t get me wrong, I have a to-do list as long as my arm, and a million things I could be getting on with around the house, but none are urgent. So I am trying instead to ignore the need to be productive and instead prioritise my recovery. This is pretty hard for somebody who has grown up in an environment where productivity is celebrated and rewarded – we have been brought up to believe we can achieve whatever we want, so to stop trying feels wrong. Even when the children were tiny and I pottered around the house all day seemingly doing ‘nothing’ – babies are the best time-wasters - at least I could justify to myself that at the end of the day, I had kept a tiny brand-new human being alive. But this just feels so decadent, even though of course I know it’s not, and that it’s actually essential for my recovery.

After surgery, I had the good fortune to be able to watch two weeks of Wimbledon – the entire tournament. Every day at 1:30pm, I lay down on the sofa, switched on the TV and watched the tennis for the whole afternoon. I didn’t feel even a tiny bit guilty because it’s something I’ve always wanted to do but have never been able to, because I have always been working. It’s a shame there’s no winter version of Wimbledon that I could tune into to get me through the next few weeks. I seem to have exhausted most of the series on Netflix, Prime, Disney+, Channel 4 and BBC iPlayer, so if you have any good recommendations please let me know! Thanks to everyone who has sent me movie recommendations too.

I am still taking most of my calories in shakes at the moment because eating is both painful and tiring, but I am trying to have some solid food for dinner. Tonight the girls had fish and chips from the local chip shop, so I tried a piece of fish with some mushy peas. The batter was a challenge and chips were a definite no-go, but I did manage the lovely white fish and peas, washed down with lots of water. I paid the price afterwards as it burned for hours, even after taking morphine. Lesson learned is that I’m probably not ready for normal food yet, but I am still glad I tried as it was so much nicer than a shake!

Looking ahead, I feel what has changed in the last few days, since treatment has finished, is that I am finally starting to realise that it is over. I can breathe again. It just didn’t feel real at first, and it almost felt too scary to even acknowledge it, because it has all felt so long and difficult. I know it will all improve vastly when the pain starts to lift and I can eat normally again, although that is still at least a few weeks away. Small steps each day.

Into Week 7/Week 1 Post-Treatment

I wasn’t sure whether to call this week 7, as the radiation keeps cooking me so technically I am still in treatment, or week 1 post-treatment, because most doctors seem to refer to it this way. So I called it both.

After feeling quite flat yesterday, I had half expected to wake up this morning and feel a belated sense of joy; possibly even a little bit back to ‘old me’ (not in the age sense, although this whole thing is certainly making me feel very old!). Sadly, that wasn’t the case. I felt exactly the same, but more tired. How is that even possible?!

Yesterday, I was overwhelmed with messages of support. It was so lovely to have so many people wish me well now the treatment is finished. It is hard to explain that the journey is far from over. I don’t want to sound negative, and of course I am SO happy to be this far through treatment, but many people think that the end of treatment means time to start getting back to normal (this is also what I thought at the start of all of this – let’s get it over with so I can get back to my life). I am quickly realising that none of this is as simple as it sounds. My hospital team shared a paper with me today - ‘After the Treatment Finishes - Then What?’ by Dr Peter Harvey, Consultant Clinical Psychologist at Leeds Teaching Hospitals Trust. Dr Harvey examines why most people don't feel the expected elation at the end of their treatment - "You will have been looking forward to the absence of something unpleasant rather than the eager anticipation of the arrival of something pleasant." So true.

Dr Harvey believes the recovery process from cancer can be divided into three distinct phases – recuperation, convalescence (love this one, I might need to go to Brighton for a few months, sit on a deckchair wearing a headscarf and enjoying the seaside air!) and rehabilitation. He argues that each of these needs to be done properly in order to truly recover, and that trying to get back to ‘normal’ can be more of a hindrance, because “once heard, the diagnosis of cancer can never be forgotten. Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you have cancer your life changes irrevocably.” 

These words really resonated with me. He also gives the rather amusing example of a lady who, “once she had completed her treatment for her breast cancer asked for help to '.. sort out her job, her marriage and her cancer - and in that order.' After eight sessions, she had decided to change both job and husband.” I am not sure I’m looking for quite such a drastic change in my life, but the whole diagnosis really does make you want to review your life and what you want from it. Perhaps because your mortality is called into question, it makes you realise how short life really is. Sounds so cliched I know, and I probably thought the same before this happened, but this is all food for thought for me at this stage.

Here is the link to the paper in case you are interested:

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

I am conscious I’m sounding very melancholy today! It’s probably not helped by the fact that I recently noticed an enlarged lymph node at the base of my neck, near my collarbone. It has been there for about two weeks. When I first noticed it, I assumed it was just reacting to the radiotherapy and would go down soon (although remember I thought that about my tonsil tumour). I asked the doctor at the hospital about it last Friday. He took a look and said it was probably nothing to worry about, but suggested that I speak to my oncologist, so I have an appointment for next Friday. Back to Oxford – hoorah! I had been hoping to at least have two weeks away from that place! I am sure it’s nothing to worry about, but having been through five months of hell, complex surgery and a gruelling radiation schedule, of course I can’t help but worry.

On the plus side, the mask, the car journeys and the whole radiation process is already starting to feel like a distant memory. The sun was shining for me on my walk this morning and I’m still very grateful that I have been able to get through without a feeding tube. Morphine is now my best friend, although I’m told we will go our separate ways in two weeks or so as I wean myself off the opiates. I actually ate some vegetables today – a root vegetable gratin followed by tinned peaches and extra-creamy custard. It felt so good to be putting something good into my body rather than another shake or crème caramel! I still can’t taste anything though so it’s still not an enjoyable experience.

My nose seems to be bleeding more frequently. I forgot to take a tissue on my dog walk this morning and my nose was running the entire time, so with blood dripping down my face I must have looked quite a sight. Maybe I’ll try that again on Halloween.

The mucus also seems to be getting worse. It feels a bit like having a bad cold, except what comes out of my throat is a weird combination of phlegm, blood and very limited saliva, so that when I try to spit, the offending material just hangs from my mouth and refuses to leave without some physical help. Maybe this could be a new superpower - a bit like Spiderman, but with mucus instead of webbing? I wonder if it is strong enough to allow me to swing between buildings…

I’ll finish with a photo of all the beautiful flowers I have received - my kitchen looks amazing, full of gorgeous vibrant colour!

Week 6 - Day 30

It is over! Treatment has now finished. My first ‘official’ confirmation of cancer was early May, so I have spent the last five months waiting for this day; thinking about how to get through it in one piece without having a breakdown. During this time – through both surgery and radiotherapy - my life has been on hold, with the focus of each day being on the next test, scan or hospital visit, or perhaps waiting for results and next steps. After all of that, it would be reasonable to expect that today I would be feeling super happy, elated and relieved. Strangely, I feel none of those things. I feel the same as I did yesterday. I suspect (hope) that the relief will come in time, but as nothing has technically changed and my pain and exhaustion levels are the same, I suppose today wouldn’t really feel any different. I also suspect the reality hasn’t yet hit me properly, but that will come in the next week or so. All that said, I no longer have to deal with daily long journeys, stinky drivers or the horrid mask. Hoorah. There are definitely positives to be celebrated.

It was very hard to get up this morning. I didn’t sleep well as I kept dreaming about being pinned down in the mask. At this stage of treatment, I should be able to give Princess Aurora a run for her money in the sleep department, but last night my mind was just too active. I had the nice older gentleman drive me today. No aroma in the car thankfully, but he is the one who always asks me directions, then proceeds to take the slowest route and I end up late. No surprise, the same thing happened today so I missed the first half of my reflexology appointment. After the last two were cancelled last week, this was quite disappointing, but I managed 30 minutes so it wasn’t so bad.

I went straight in for my final radiation session afterwards. Music choice for my final day was ‘My Way’ by the big man himself, Frank Sinatra. The end is not just near, it has arrived! I actually opened my eyes for most of the treatment, taking in every last detail just so I could happily forget it all as soon as I had left. Boy was I happy to see the last of that green light staring at me. I plucked up the courage to ask my question that I have pondered since day 1, namely, would it be possible to physically break out of the mask once bolted down? The answer was yes, but it would take a heck of a lot of strength. I'm still glad I waited until the last day to ask this. I took a tub of Celebrations chocolates to say thank you to the radiographers, then I practically sprinted out of the door, holding my friend-foe the mask, with a plan to hang it outside our door for Halloween. The two of us sat in silence for the journey home (the mask and me, not the driver).

Towards the end of last week, I had felt quite emotional thinking about today. I had thought that since I had mostly kept my emotions at bay to get through treatment, that it would all come flooding out. I thought I might feel sad about saying goodbye to the team who have looked after me. I thought I might feel overwhelmed at the prospect of it being over. I felt none of those things; I just felt oddly numb. My eyes were as dry as dust. The only thing I felt was a desperate need to escape the hospital, get in the car and go home. On my way out, the receptionist asked if I had anything nice planned to celebrate. Maybe a double milkshake?!

I took the dog out in the woods when I got in, which was lovely because the sun was out and it was a glorious day to be outside. When I got home, I took my meds, had a shake and then collapsed on the sofa for the afternoon with the pets. Oscar (the dog) does not like the mask at all. He wouldn’t stop barking at it and I can’t say I blame him. I did manage to get a photo of Lily modelling it though! 

By the evening, I had had enough of liquid food, so I pushed the boat out and tried dipping some warm ciabatta in a 3-cheese bake. It was surprisingly okay, so I went a step further and had rhubarb crumble and custard for pudding. I could only really manage the stewed fruit, but it’s the first fruit my body has experienced in weeks so it is probably doing somersaults inside. It was disappointing not to be able to taste any of it, but as long as it’s not meat I can cope with the guesswork of taste. As soon as the meds start to wear off though, the pain kicks in again and that’s the end of food for the day. Still, I am really happy to be able to say I managed some solid(ish) food on my final day of treatment. I actually felt full for the first time in weeks!

I still feel I have been very fortunate to have escaped many of the serious side-effects this treatment usually brings. I don't have external skin burns, I have minimal hair loss, I am still eating and drinking and I don't have too much mucus. At the same time, I have severe mouth and throat burns, hardly any saliva or taste, nausea, a very dry throat and the worst fatigue I have ever experienced. 

So that’s it. Treatment over. Now time for Bake Off again and then bed. I’m going to keep the blog going through recovery to track my progress - as I mentioned, I'm told the next two weeks will be the worst before I start to get better - so please keep checking in. I promise to make it about more than just my sleeping patterns 😉

Week 6 - Day 29

I set the alarm early this morning with the intention of taking the dog out for a walk before treatment, as I have been doing most days, but when it rudely awakened me at 6.45am I could not move. Every part of me felt like stone. I felt utterly exhausted, even though I had gone to sleep at 11pm. Seven or eight hours sleep wasn’t enough for student me and it’s clearly not enough for radiotherapy me either. A quick glimpse at the weather told me that the sun was coming out later in the day, but it was cloudy and rainy at that moment. This was enough to justify hitting snooze, so I went back to sleep and was rudely awakened for a second time 45 minutes later. Still, that’s half a blissful sleep cycle so I’ll take it. I decided to walk the dog later.

A quick bowl of soggy Rice Krispies and many meds and mouth rinses later, I was in the car for the penultimate day. The car journey was pretty unpleasant today. There was a stale smell in the car, despite the fact that it was pristine, that made me feel nauseous again. I wasn’t sure if I was being particularly sensitive or whether the aroma was real, but either way I asked the driver to crank up the air con so that it at least felt fresher in the car. He resembled a bouncer – bald, burly and brusque – and not a word was exchanged the entire journey, which is, of course, not a bad thing as conversation with strangers is also not top of my priority list, so a relief for both of us.

When I was sitting in the waiting room, a lady came out of the treatment room, relieved, it appeared, having had her final treatment. She was greeted by her two adult children who had been waiting for her. There was hugs and congratulations all round, and when asked what she had planned, she replied she was going for a lovely lunch and a glass of champagne. Oh what I would give to be able to go for a celebratory lunch tomorrow.

Music today was ‘The Greatest’ by Sia. Also known as ‘I got stamina’ which was why I chose it. I am definitely having to dig deep this week to keep going back to the hospital. I was even tempted to stay in bed this morning and just not bother with the last two appointments – I mean, surely all those micro cells have been eliminated by now?? - but I figured that wouldn’t be a wise move in case they said I had to start all over again.

The theme of exhaustion continued in the car on the way home – I slept – and again when I walked through the door. I hit the sofa and slept for almost three hours. I am like a newborn baby! Who knew it was possible to sleep this much?! The downside of that was I missed taking my meds and having lunch, so when I finally awoke I was in a lot of pain and absolutely ravenous. I have to wait about half an hour after taking meds before I can eat to allow them to take effect, and I couldn’t be bothered with the effort of actual food so I made a Complan chocolate shake, which I couldn’t taste but still burned, so it wasn’t hugely successful. It does have plenty of calories though, and I followed it with my new favourite pud – a Waitrose Caramel Panna Cotta. These beauties are quite small but pack in a lot of calories and I can even taste a little of the caramel – result! - plus they slide down easily. I did manage scrambled egg on toast for dinner as I'm keen to keep trying solid food. Couldn't taste a thing but it went down, along with a lot of water.

I continue to receive so many thoughtful messages and amazing gifts from my lovely friends and family, from beautiful clothing and pampering bath products to gorgeous candles and stunning flowers. I feel so lucky to have the best support group. I know it sounds so cliched but I really would be struggling now without all the amazing support I have received, so thank you all again.

And now, on to tomorrow. The final treatment. It sounds so exciting, and of course I cannot wait to be free of the long journeys, stinky cars, annoying drivers and the horrid mask, but the unfortunate reality is that things are set to get worse, not better, over the coming weeks. I have known this from the start, so I am braced for it, but it doesn’t make it any easier. According to the NHS:

“Pain and soreness resulting from radiotherapy may continue for up to 8 weeks following treatment. This pain and soreness may worsen in the short term i.e. in the first 10 to 14 days, but will improve as the weeks progress.”

The cumulative effects of the radiation carries on working long after treatment ends, and the peak is apparently at around two weeks. My oncologist has told me the worst of it should be over within three weeks, but of course each person is different. So whilst tomorrow is a cause for celebration – maybe I will treat myself to a different flavour shake! – I’m not going to be popping corks anytime soon (too sad!). Right now I will be grateful if I can manage a Christmas glass of fizz!

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.