Ulcers

Mouth Ulcers and The End of Chemotherapy

godley93, , , , , , , , , , , , 11 Comments

The Chemotherapy Diaries

Bedbound and Down

I thought I’d left my abusive relationship with mouth ulcers in the past… the mouth ulcers had another thing in mind. They decided to come back in force and ruin my victory lap week with the mop-up treatment. Rather than being excited about reaching the end of my journey with chemotherapy, I spent the past week in bed, struggling to eat, and even struggling to talk.

The issues started last week on Monday. It seems strange how they form, and I’m not sure if they form differently on chemotherapy, or if I just haven’t had enough in my life prior to being on treatment for cancer to know, but it seems to be different to how I remember it. I know I’m about to get mouth ulcers because my mouth just starts feeling strangely sensitive. All of a sudden, a hint of paprika in a tomato sauce results in my cheeks and tongue feeling hot and irritable. I’ll sit there after the mildest of chilli meals and find my mouth pulsating with discomfort.

“I think more mouth ulcers are coming,” I announce to my wife, with a combination of bitter amusement and familiar disdain. The sentence sounds like a naive plot thread in a horror movie, where the protagonist announces that they’re happy that they live in the safest town in their country, minutes before a gang of weapon-wielding maniacs descend on it with masks on and a vengeance against middle-class bullshitery. In my case, I use the word ‘think‘ as a sign of optimism that perhaps the ulcers won’t materialise, and that my mouth may just be a little sensitive that day. Usually, I wake up the next day to find that optimism to be entirely unfounded, and the ulcers have spread themselves throughout my mouth in the most awkward and painful of places.

This time was particularly bad, though. I couldn’t even drink water from Tuesday to Friday without it causing my mouth to sting so intensely that I’d question whether the government had replaced the local water source with hydrochloric acid. It was Thursday night that I decided to finally call The Christie hotline and report the problem to my oncology team. I was still taking the chemotherapy tablets twice a day at this point and had been for my last infusion on the Tuesday, when it had all started to kick off, so the chemotherapy was rife in my system.

Before the final infusion, I reported the problem to my nurse during the standard pre-treatment survey. She had manoeuvred one of the large extendable lights attached to the wall behind the bed into a position to investigate the contents of my mouth.

“Oh, the back of your mouth is very swollen. Your tongue looks very painful too. They are rather excessive, aren’t they?”

“Yeah. I’m struggling to talk because the ones on my tongue are constantly scraping against my teeth towards the back of my mouth. Opening my mouth is hard because the ones at the back of my cheek strain when I do.” You’re probably reading those sentences in too normal a fashion for how I was enunciating my words at this time. Imagine someone with a lisp who, for whatever strange reason, also can’t open their mouth properly, reading the sentence to you. Looking back, it makes me laugh quite a lot, but I didn’t see anyone laughing around me at the time. What a waste of a painfully funny situation. Another rather funny event that occurred during my final infusion was me receiving a foot massage.

I’d had a minor breakdown at treatment during my first session of the final cycle, and the nurse had referred me to the hospital’s Macmillan team. The next week, during session 2, one of their specialists had come to visit me to talk me through techniques to implement when I’m feeling overwhelmed, as well as services that her team can offer to patients. One of these services was a foot massage during treatment, which is said to help lower the effects of nausea, which I was experiencing in abundance during my sessions at the hospital.

It wasn’t actually the treatment itself causing this, but the smell of the ward. I think it has finally happened that I now associate the smell of antiseptic cleaning products with the horrible effects of chemotherapy, and the experiences familiar to me during the delivery of treatment at the hospital. These include, and I apologise in advance for the amount of toilet-based issues listed, but it is the reality of being on chemotherapy: chronic diarrhoea, blood in my faeces, throwing up whilst sitting on the toilet, sweating profusely, the room spinning around whether my eyes are open or not, going white as a sheet, and my extremities freezing solid, so I cannot bend, or even feel them, which is incredibly painful and irritating.

I declined the foot massage that week, stating that it was a nice gesture but that I am nearly at the end of my treatment, and that I’d made it this far without them, so I’d soldier on. The Macmillan representative was so lovely. She encouraged me to accept it and said that it is really therapeutic, but I felt far too English and awkward about the whole thing. Also, my feet are the part of my body that I am most self-conscious of, as I used to run a lot of ultra-marathons, which isn’t usually indicative of nice-looking feet. Mine certainly fall into the category of ‘That guy likes to run marathons’, and I haven’t even run one for well over a year.

But, during my interview at the start of session 3, cycle 3, the Macmillan representative had come back to see me, and it just happened to be during the nurse’s inspection of my mouth.

“Other than the mouth ulcers, have you had any other symptoms that have been bothering you?” the nurse asked.

“I’m still struggling with nausea, and just generally feeling wiped out. I really struggle to get out of bed at the minute, and I barely leave the house at all,” I replied.

The nurse turned to the Macmillan representative and said the following:

“Do you think we can give him a foot massage to try and help his nausea?”

I’d been rumbled. Had these two planned this? What a deviant, awful, lovely pair of people. How dare they assassinate me with their good nature. How am I going to wriggle out of this one?

“That’d be great – are you Ok with that, Dan? I know you weren’t so keen on it last week,” the Macmillan representative said to me.

Both their eyes were locked on mine; I felt the weight of expectation.

“Ok, sure. That’d be lovely. Thank you,” I said, defeated, and still struggling to pronounce my words properly because of the mouth ulcers.

If you are on treatment and are offered a foot massage, I only have one thing to say to you – do it! The Macmillan representative used the electric remote on my chemotherapy chair to elevate my legs straight in front of me, then placed herself at the end of the bed. She put a lovely white towel under my feet and curved the ends of it around each ankle. She then proceeded to cover my feet in ACTUAL OIL, and softly massaged my feet, whilst chatting to me about everything that was getting me down – acknowledging the trauma that I have been through, the difficulty of the cancer that I am fighting against, and how hard it must be to readjust to my present life, compared to my old one.

The whole experience was absolutely wonderful, and it really put into perspective how important the work is that Macmillan do. What an incredible organisation and, in particular, what a wonderful individual she is. I wish I could shout her out by name in this post, but I’m not sure how ethical that would be, so I won’t. I hope this gets back to her somehow so she can read how much I enjoyed the experience, and how grateful I am for it. Anyway, this post has turned far too positive, lets get back to my week of hell with the mouth ulcers.

As I said, I spent Tuesday to Friday mostly in bed, consuming very little in the form of food or water, and struggling to do much more than sulk. Talking was very painful, and no amount of the hospital-issued mouthwash, or Iglu gel that I put on the ulcers to try and relieve them, was doing much to alleviate the issue. I was still taking the chemotherapy tablets throughout this time, but I was feeling incredibly weak and sick, and I decided it had all become too much. I’d taken to sleeping on the bathroom floor a few times during these 3 days as I was getting such bad abdominal pains and bouts of nausea, that I was worried I wouldn’t make it to the toilet in time from my bedroom if I stayed there. A few times, this proved to be a good idea, and I learnt that my favourite place in the upstairs bathroom was assuming the fetal position on a small rug placed in front of the radiator.

One time, I had been rudely woken up by my wife banging on the door, telling me that dinner was ready downstairs. Dinner? Can one not assume the fetal position on the bathroom floor in peace these days? Unbelievable. I can’t eat anyway – what good is dinner to me?

The Christie hotline wanted me to go into the hospital to be reviewed, as they were worried about a few of my symptoms. My temperature was 37.7, which is right on the border of ‘high risk’. A high temperature can be the earliest sign of infection, so patients are advised to regularly check their temperature whilst they are receiving chemotherapy treatment. The advisor was worried that some of my mouth ulcers may be infected. On top of this, the fact that I was struggling to consume liquids, and had been suffering from bad diarrhoea all week, added to their concern.

I was pretty sure that I didn’t have an infection, though. My theory about the high-ish temperature is that I was taking the reading using an oral thermometer and that my tongue and mouth were very swollen, which would probably be skewing the temperature reading. I didn’t feel like I had any symptoms of flu, which usually indicates that the body is struggling with fighting an infection, and none of the ulcers looked infected to me.

It was nearly midnight at this point, and The Christie is nearly an hour away from me. That would mean an hour to get there, a few hours there having blood tests done, and being put on routine fluids, and then another hour back home. If I was genuinely concerned that something bigger was going on, I would have been happy to do this, but I wasn’t convinced that it was. I gently refused and asked if I could arrange to see the GP the following day instead. The representative reluctantly agreed but said that she would call me back an hour later for another temperature reading, and if it remained the same or increased, insisted that I would have to either go to The Christie or to my local A&E to be checked out. The suggestion that I may go to my local A&E over The Chrstie made me giggle.

“If I need to go anywhere, I’ll come to The Christie. I’m not stupid enough to go to my local A&E anymore – I’ve made that mistake a few too many times over the last year.” That thought cheered me up momentarily. Who would voluntarily go to an A&E in the UK? They’re notorious hell-holes where, if you manage to get out within 5 hours of arriving, you feel like you’ve been blessed by the gods. At A&E you are treated like a problem; I’d rather book a plane ticket to be seen at The Christie than drive to an A&E that is 20 minutes away from me. The overall time it would take to resolve the issue would still fall in favour of The Christie anyway, even if it included navigating airport security, sitting through a flight, the awkward bag collection on the other side, then the mandatory coffee stop before leaving the airport. I once sat in A&E throwing up for 9 hours before speaking a single word to an actual doctor, and that was during my recovery from major surgery last year.

An hour later, my temperature was 37.4. Good, it was dropping. She was happy to let me stay at home, so long as I got an appointment the following day.

In the morning, The Christie hotline diligently called me to see how I was getting on. They had been far sharper than I had that morning, as I had had one of my typical chemotherapy mornings, where I could barely move a limb for how bad I felt.

“Hi, Dan. It’s the hotline here – we wanted to confirm that you have an appointment to see the GP today?” The advisor asked me.

I broke out into a thousand excuses, but the central point was – no, I didn’t book an appointment, and it was now 10:30, and all appointment slots will have probably gone. She asked me to try to get one, and then get back to them once I either had an appointment or learnt that I could not get one, so they could help to arrange an alternative.

Lucky for me, I called my GP and explained the situation, and they offered me a slot at 17:00, only available because a patient had cancelled. I assume that this patient had originally accepted the appointment, only to realise that it cut into their Friday night pub time, which had convinced them that whatever was wrong with them really wasn’t that bad and that it is probably normal for men to have dry testicles that are covered in flaky skin. No idea where that came from… you’d think I was projecting, but I promise I’m not… Anyway, I snapped the appointment up but was concerned that the advisor on the hotline would not be on shift anymore by the time I had seen the doctor, so I wouldn’t be able to report back the outcome of the appointment. Rather than proactively do anything about this concern, I returned to my position under my quilt, falling in and out of sleep until the fateful time came to attend the appointment.

The GP looked at my mouth ulcers and confirmed that none of them looked infected, but said he would give me some steroid mouthwash to encourage them to clear up quicker. He then looked at the results of a recent blood test I’d had at the GP, due to some standard screening procedures for diabetic patients, which I am.

“One of your liver functioning tests is rather high – are you a big drinker?” The GP asked.

I sat there stunned for a second before responding, trying not to sound too condescending or annoyed.

“Erm, no. I believe it is due to all the chemotherapy I’ve been on. I have pancreatic cancer.” I couldn’t help but be a little stern in my tone.

“Oh, of course. Sorry,” he responded, before talking to me a little about how the treatment was going, and how long I had left on it. He was a nice guy – it had probably been a long week.

The steroid mouthwash lasted for 5 days and seemed to do very little. My mouth ulcers are still going strong, though I am managing to eat more. Some recipes I’ve taken a particular liking to are overdone pasta with homemade pesto, a mild daal and, of course, soup – a classic ‘I’m ill and everyone should feel sorry for me‘ meal.

On a more positive note, I woke up today feeling better than I have in weeks. Instead of being greeted by a piercing headache and heavy limbs, I woke up at 8:00am and felt… kind of, Ok? I’ve gotten so used to the first feeling that I wake up to being anguish, as if I spent last night downing straight vodka from the bottle before being hit by a double-decker bus, that anything remotely more positive than this feels like a breakthrough.

In the Wet Leg song ‘Ur Mom’, there is a break in the song where the singer sings the following lines:

Okay, I’ve been practising my longest and loudest scream
Okay, here we go
One, two, three

She then proceeds to scream for an impressive amount of time. It is very random, fun, and the sort of tongue-in-cheek thing that you start to expect from their music after listening to a few of their songs (the song ‘Chaise Longue’ is a prime example of their lyrical good humour). I like to think, if I had written the song ‘Ur Mum’, I would have channelled my anger at mouth ulcers whilst producing that scream. It brings me some pleasure to imagine that was her inspiration as I listen to the song, but it almost certainly wasn’t.

So, to finish off this post – fuck you mouth ulcers, and fuck you, chemotherapy. You can both do one forever. I’m hoping that I am done with you for good, but live in trepidation that my oncology team will tell me that I have to resume taking the chemotherapy tablets until the full course is complete, which would mean another 5 days of tablets to come. I’m purposefully avoiding calling the hotline back to tell them that I’ve completed the course of steroid mouthwash given to me by the GP, as I am assuming they will advise me to now continue the course of chemotherapy tablets.

Can I just say “no” at this point? Will 5 more days of pills really stop whatever may happen from happening? I seriously doubt it. It would give my mouth ulcers more opportunity to thrive, though, and they only need half an excuse to kick off a violent party in my mouth. They’re still at it now, even after 5 days of steroid treatment. If anything, I think the steroids just encouraged them.

Who’s side are these oncologists on, anyway? I’m starting to think they’re funded by mouth ulcers.

I’ve told myself that I have to call the hotline this afternoon to talk about whether I have to resume the treatment, like a real adult. It is so hard not to ignore your problems when ignoring them does, kind of, make them go away.

Chemotherapy Returns: A Tale of Tiredness & Ulcers

godley93, , , , , , , , , 6 Comments

The Chemotherapy Diaries

Back in the chemotherapy fog…

As I lay on the sofa a few nights ago, the TV show I was watching ended. After a few minutes of adverts, a sound I dreaded came on… The news was beginning. I couldn’t see the remote around me, and I was feeling worn out from the chemotherapy. It’s becoming more regular for me to fall asleep on the sofa involuntarily, my personal signature of chemotherapy. I’d been in and out of sleep on the sofa for a few hours at this point. The sound of the news starting, with the summary of all the goings-on in the world and the familiar music, struck me awake, but not quite awake enough to get up and find the remote. I lay there for ten minutes or so listening to the headlines, feeling any enthusiasm and positivity I had for the world drain from my being.

I salute anyone who frequently and voluntarily watches the news. Although I think it is good to be aware of what is going on in the world, it really can bring you down. The list of awful events just reinforces this cynical idea I have in my head that there is a lack of cohesion between almost every force in the world. It leaves you feeling certain that we’re all doomed, and rightfully so. It is a feeling that I just can’t face when I’m already wrestling with the negative effects of chemotherapy. After those ten minutes, I mustered up the energy to push my body off the sofa and looked around the room to find the remote. I saw it on the other sofa. As I pressed the off button on the remote and deadened the life from the TV, I breathed a sigh of relief. Not today, I thought to myself. I’ve got my own battle to focus on. My battle against sleeping every second of every day. I’d been losing it that day.

It made me wonder whether news readers have to compartmentalize themselves from the things that they are reading every day. When it is your job to read that these 50 people died here and that this war rages on there and that there is a potential famine on the horizon in this country, do you just read the words and not process their meaning? Perhaps they are too focused on getting through the thirty minutes that they are on air to really consider the meaning of what they are saying. Maybe they attend parties and roll their eyes as everyone expects them to reel off line after line about how terrible that flood was last week, and how the death toll rises with every day that passes. The whole world becomes work to them, as everyone assumes that their favourite pastime is to discuss the headlines they report every day. A little like expecting an accountant to want to do your year-end accounts at a party because they must have gotten into accountancy as it was their passion – right?

Like the imaginary news reporter I have created here, I find myself struggling to consider the going-ons with chemotherapy this time around. During the first week, it was because nothing was really happening. I had my 30-minute infusion at the hospital and was surprised to learn that it really is just that – 30 minutes of infusion, then home. It sounded too good to be true, so I couldn’t believe it before I saw it with my own eyes. During Folfirinox, the chemotherapy I was on before my surgery, I would spend a good 5 hours at the hospital undergoing the infusion of various bags of chemotherapy drugs. This time, upon learning that I would only be required to do a single 30-minute infusion, and then take tablets every day, I couldn’t believe my luck. Week 1 reinforced this feeling that luck was finally on my side – it seemed that I’d sail through this treatment schedule and be clear of all of this cancer stuff. That is great for me, but it left me feeling dry in terms of content for the blog. There wasn’t much to report, and I don’t want to just continue blasting every nurse who takes blood from me every week; although, the nurse who did my blood test before my first treatment week did make my arm hurt for 3 days… These blood-suckers just can’t resist roughing you up sometimes.

The tablets that I have to take every day aren’t pleasant, but they felt much more manageable than an extended infusion at the hospital. I have to take 3 tablets, twice a day. I was getting into a routine of having the first 3 after my breakfast in the morning, then taking the second load after my evening meal. Because I had extremely bad mouth ulcers during my first phase of chemotherapy treatment, I’ve been conscious of not leaving the tablets in my mouth too long before washing them down with water. I’m sure that has no weighing on whether you get mouth ulcers from them or not, but I’ve convinced myself that it does, so the most stressful part of taking the tablets in that first week was getting the tablets down fast enough without nearly choking on the water. Other than that, it felt pretty simple. Onto week 2.

Week 2 is where the more ugly side effects started to reveal themselves. The infusion was all good again. “I feel like I’m being let out of school early because it’s been snowed off,” I quipped to the others sitting in the chairs around me in the hospital, as I picked up my stuff and left after another seamless 30-minute infusion. It genuinely felt like that; before I’d settled into reading a book or listening to an audiobook, the pump would be making its familiar alarm noise signifying that the cycle was complete. It catches me off guard every time – I just can’t believe it has really finished that quickly. Wonderful.

I was starting to notice that I felt a lot more tired in week 2. The chemotherapy tablets were starting to really mess with my stomach when I took them too, so I was starting to resent having to take them. I’d be eating my evening meal and trying to enjoy it, but every other bite came with another warning thought – “when this is over, you’re going to have to take those tablets again,” I’d say to myself. It puts me off my food as if it is the food’s fault. I know it isn’t, but it is nice to blame something. A few times, I’d totally forget that I needed to take them after eating, only remembering as I climbed into bed. That meant taking them on an empty stomach, which only seemed to make the symptoms worse. I’d swallow them and sit in anticipation as I wait for the sick feeling to come, the pains in the abdomen, the need to run to the toilet; it just wears you down.

The tiredness was getting worse too. I was starting to need twice as much sleep to be able to focus on anything. I’m working full-time now, whereas I didn’t work at all during the last 7 months of chemotherapy treatment. This cycle is definitely more manageable, so I don’t think that it is necessary to go off for the entire time again, but trying to do full days whilst on chemotherapy is hard in my experience so far. Your brain power is just shot – trying to focus on something for a long time is hard, and I get a lot of headaches on this new chemotherapy regime. When you have a banging headache, the last thing you want to do is sit staring at a screen. I’ve started having to take more regular breaks instead, and I’ve been starting a little later in the morning, but it all brings this feeling that you aren’t doing enough and that you should be forcing yourself through those tough patches. That brings a whole new world of anxiety to deal with alongside the already tough symptoms. It was about to get worse, though…

Towards the end of week 2, I started feeling something that I had been dreading. Mouth ulcers. My god if there is one thing I have learnt from going through all of this chemotherapy, it is that I absolutely hate mouth ulcers more than anything on this planet. Why oh why is my body’s default reaction to these toxins in my body to start punishing me even more in the most sinister and annoying way possible. I’d really love someone to explain to me why mouth ulcers are a thing, so I could simply shout “fuck you,” at that individual before throwing the glass bottle of Diflam mouthwash, issued by the hospital to help tackle said mouth ulcers, directly at the nearest wall, followed by a public protest of me licking up all of the green residue until none remained. The mouthwash doesn’t seem to do anything to actually tackle the ulcers themselves, it just numbs your mouth enough that you can’t feel how painful and annoying the ulcers are temporary. Although that relieves some of the symptoms, it does little to actually tackle the problem. I’ve lost faith in those little glass bottles issued by the hospital and engage in them with the same enthusiasm as a gazelle does a lion, as they catch eyes across the watering hole.

On Thursday, I went to Manchester to do some recording for the wonderful charity Pancreatic Cancer Action. They asked if I wanted to be featured in a video they are creating, to be released during Pancreatic Cancer Awareness Month – November, the same month I was diagnosed; another dark nod from the universe, grinning its ugly teeth at me. “Oh, Dan’s aware of pancreatic cancer,” I imagine the universe saying last November as it sat awaiting my diagnosis. Some people only think the universe is against them… I have proof that it is. Anyway, my wife Anna came along with me. Before our recording time, we grabbed some brunch together in a cafe, and I took my chemotherapy tablets. All was well, and the lunch was lovely. As we arrived at the filming location, I started feeling a bit worse for wear, and I was getting some cold sweats, and a sickness was building in my stomach. I was starting to feel bad. I kept my composure and made it through the recording. After that, my plan was to go to Huddersfield to see my best friend Luke. Anna had a work meeting, so she set up camp in the building where we had been recording. I grabbed the keys from her and made my way back to the car to grab my bag. By the time I got to the car, I was overwhelmed with the sickness. My head was spinning, and I was having to wipe sweat from my forehead with my sleeve. I meekly climbed into the back seat of the car, fashioned a coat into a pillow, and lay there with the car door slightly ajar in case I needed to throw up. I fell asleep like this, only to be woken up by Anna returning to the car about an hour later. It was official – I was back in the swing of chemotherapy. It was exactly how I remembered it.

So, as I started week 3 on Friday with the starting gun 30-minute infusion, which marks the start of a fresh week in the chemotherapy cycle, I was not feeling too enthusiastic. My family have been unlucky enough to bear the brunt of my negativity so far, as they are the main ones who are in earshot of my tired complaining, so I decided it was finally time to spread the weight of my complaints across a wider network. That network started with the nurses at The Christie, who I finally informed at length of the sickness I was getting when taking the tablets, and the constant tiredness I was experiencing. The tiredness seems like a pretty standard-issue symptom, and their remedy for that was more sleep… Reasonable, but my unreasonable brain wasn’t happy with it as a solution. I hoped they’d start dishing out speed tablets or give me an NHS-funded Costa card to start drinking coffee by the pint load – hospital orders, paid for by the taxpayer. For the sickness, though, they advised me to start taking anti-sickness tablets an hour before eating, and then see if that stops the sickness from arising when I take the tablets. They advised me that if this doesn’t work, they can issue stronger anti-sickness medication, as the one I am currently being issued is quite low-duty. I don’t like learning that I’m getting the low-duty stuff. Give me the good stuff; I’m not here to play games.

That was on Friday. Today is Sunday, and I find myself writing this after falling asleep on my bed for 3 hours in the early hours of the afternoon, after eating lunch and immediately feeling sick to my stomach for doing so. I think I’m going to need to make that call and get those higher-strength anti-sickness tablets. I’m still not sure what I’ll do about the tiredness, but starting Friday next week is my first rest week, so it should get better from there. All I need to do is repeat this 4-week cycle another 2 times, and then I’m free. 3 weeks of a single weekly 30-minute infusion, followed by tablets twice a day for 21 days, then a week off. It can’t be that hard right? I did double this length of time last time, on much more toxic chemotherapy. The mouth ulcers are still far better than they were at their worst last time, but they started mild then too… Time will tell, I guess.

Like my imaginary news reader, I find myself back at the mercy of my trade – regurgitating events on a page, and struggling to comprehend their meaning. Every second you experience a negative symptom, you struggle, but you understand that this is all part of the game, and there is little time to do much more than grit your teeth and push through to the next milestone, whether that be the next meal, infusion, or rest week. The words do little to alleviate the struggles because you’ve already wrestled your way through them. This is me living to tell the tale, and I’m still grateful for that, even if I do find myself co-existing with a legion of mouth ulcers. They did not have my permission to exist, and we shall never live harmoniously. I’ll continue drinking the Diflam mouthwash by the bucketload and, most likely, continue to be disappointed by the results.

Anyway, I’m going back to sleep. I’ve been awake far too long writing this.