If you are at all easily offended or squeamish skip this post, you can’t complain later that I didn’t warn you! If you are at the start of your cancer journey hopefully this will give you an insight to some of the delights you have coming as it feels like an alien force has taken over your body. At times I honestly haven’t felt like I smelled or looked like myself. There is no time to be precious about any of it either, you just need to learn to go with the flow – as does everyone around you in some respects. I haven’t been sure how to approach some of this – should I go in chronological order or start at the top and work my way down. The latter might be better, just in case you are a little squeamish so you can test the water before I get into the really gross bits (then again, that depends on what grosses you out most).
Let’s be honest, this is head and neck cancer – tonsils in my case, so it would be impossible for there not to be some impact on this part of the body from the treatment. Annoyingly, so much happens in this area you just can’t hide away from the side effects either and they can become unbearably annoying at times.
My primary site was my right tonsil with secondary in a nearby lymph node again on the right side of my neck. This meant that my radiotherapy was targeted in these areas, but also needed to cover my sinuses, the area surrounding the tonsil as the margins weren’t clear after the tonsillectomy, and lymph glands in my neck, around my collar bone and top of the lungs.
So, starting at the top, my sinuses and nasal region took a real bashing. I normally suffer from hay fever / a dust allergy and take a daily antihistamine to help manage this. Since my teens I have regularly had problems with my nose, with snuffling and the sense I can’t breathe clearly. Nothing has ever been picked up as the cause. Cisplatin doesn’t tend to make all your hair fall out, but it can thin it. It didn’t cross my mind that included nasal hair, which reduced my natural defences against the hay fever a little. I might have gone through this in February / March when it was quite cold, but the house looked like a florists at time. I had previously loved lilies, but they just go straight to my sinuses now. From the first week of chemo I noticed I was getting a runny nose in my right nostril, especially when eating and for a while afterwards. A day or so later and this eased. It just meant I always had to have tissues to hand at mealtimes. As I progressed through the six weeks of radiotherapy my nose produced more and more, with me constantly having tissues to hand. The worst though was post treatment. I quite honestly felt like I was drowning in my own mucous. At this stage I was completely reliant on Ensures through my PEG and started to wonder if I had developed a lactose intolerance, but just had to try and power through it. I was sleeping upright with a stack of six pillows, had a fan and humidifier in the bedroom to help with airflow and moisture, but was struggling to breathe there was so much. My CNS had advised me to steam from a mug of hot water three times a day, at the worst point I was doing this hourly, even taking a flask of hot water to bed so I could do it when I woke in the night. As we all know, radiotherapy kills off our salivary glands, leading to very dry mouths, so mouth breathing at night was on my try to avoid list. This was easier said than done as no matter what I tried I could not breathe through my nose at times, this was due to what seemed at the time like gigantic (3cm long) blood clots I would blow out my nose and have some relief until the next one formed. Initially I was worried, until my CNS reassured me not to. These continued for about 3-4 weeks as my nasal cavity healed from the radiotherapy. By about week 3 post treatment I was desperate when I had the weekly call from my CNS. She advised nasal douching and sent me the information on it, I quickly ordered a kit from Amazon as I was about to ask someone to chop my head off. Its not a task to be taken lightly, I read the instructions a few times as I was somewhat wary. Its not at all a pleasant experience, squeezing water up one nostril, via the sinuses out the other, I had to fight my instincts and breathe through my mouth so as not to drown myself. Thankfully it worked and I felt some relief in my sinuses from the first time, and only actually needed it about three times. I wished I had tried it sooner.
Moving slightly down and back from my nose to my mouth and throat. Until you are forced into this awareness, you really have no awareness of how often you swallow. Add to that the amount of saliva you would normally produce. This is one of the body’s great defences, helping start digestion and protect your mouth. Once you find your salivary glands slowly being killed off the thicker mucous in your mouth starts to build up. It takes on a white, foamy consistency and can hang around in there for ages because you can get to the point where you have to consciously tell yourself to swallow and get the throat muscles working (or at least I did). The dryness in your mouth also reduces the natural chemical balance. Along with the bashing from the radiotherapy the dryness can lead to ulcers. I had a particularly persistent one from about week two of treatment in early March through to about eight weeks post treatment at the beginning of June. At its worst this ulcer ran the full right side of my tongue, I could feel it constantly and it made it hard to eat and do my tongue stretches. Thanks to this I went off soups, smoothies and very liquid foods as they sloshed around and made my ulcer sting. Soft foods that I could chew a little at my left side were much easier. I was using everything given to me to try and help reduce the discomfort: Caphosol to gargle, up to ten times a day at its peak; Difflam, to numb my mouth for eating; Bioxtra gel and Gelclair to coat the ulcers. Maybe it was this regime combined with the Flourigard mouthwash and Duraphat toothpaste that meant I thankfully never suffered from oral thrush. I really do feel for anyone who has this on top of everything. The mucositis was grim, there is no way to flower that up, and it lasted until about ten weeks post treatment for me. At time it was difficult to brush my teeth, but I am lucky in that I was able to continue, in a fashion. I am yet to visit my dentist yet post treatment to see if there is any obvious damage to my teeth and gums. I am (16 weeks post treatment) starting to get a bit of trismus, so am adding more exercises into my daily routines to try and combat this. I am still careful with mouth hygiene, I always have mouthwash and Caphosol in my bag to clean it after eating when out. I am grateful that I never completely lost my salivary glands, although what they manage to produce is less and thicker. I never walk the dog without saliva spray to hand and keep a bottle in my bag when I am out, just in case my water runs out. The only time I get a really dry mouth is overnight, I wake with my tongue stuck to my mouth so swish water around as soon as I wake. This does mean more toilet visits through the night, but that is a small price to pay. Losing some of my salivary glands lead to one of my stranger side effects, when I eat really sweet things, especially chocolate I come out in a little sweat over the bridge of my nose. It took a couple of times for me to realise there was no coincidence to this, a little research later and it transpires it relates to loss of salivary glands that are near the back of your jaw. At least trying to avoid that is helping me stop reverting back to the pre-cancer chocoholic I was!
Moving down slightly to the throat. This is a huge target area with our treatment. It started getting sore by about week 3-4 of treatment for me. Swallowing was becoming a little less instinctive and I needed to make more of an effort to eat, and drink a lot more water to help it down. Post treatment the mucositis had really taken hold. There were times that I would find blood in the mucous I was spitting out. I had been told to expect this, so as long as there wasn’t a lot I just monitored it. This comes from the burning and healing process in your throat I believe. It really is essential that you do the exercises advised by your SLT, these will help you to keep eating. I managed to keep going all the way through treatment, only to crash completely the very day after. I was half way through lunch and realised I could no longer swallow. Eating had become slower and more difficult over the previous week, but it really surprised me. I kept up with my exercises as best as I could, but in the three to four dark weeks post treatment I struggled. When my throat was at its most damaged I was only managing about ten sips of water a day. My consultant radiographer had said to keep sipping water to avoid long term problems, so I did my best. I set myself the challenge of building from one sip at a time to five, then to ten, and so forth. By week four I felt ready to try some food. One Weetabix took me about 90 minutes to eat, but I made it. This felt like such a huge victory and was my first step on the long road back to eating. I am managing three small meals a day, some snacks and supplementing still with Ensure sixteen weeks post treatment. This isn’t really down to the swallowing, more the dry mouth, strange sense of taste and sensitivity to different food textures. I am pleased that I can down an Ensure in six sips and properly drink not sip my water again.
Staying with the throat areas brings me to voice. A croaky voice was one of the symptoms I had shown pre-diagnosis. One hearing I was a teacher my SLT was about to tell me I had to take time off during and post treatment until I reassured her I had already made the same decision. Without my voice I am not sure how I would do my job, protecting it and nursing it through treatment and recovery has been a must. I love the peace and quiet when I am on my own, but love a good old natter when with friends, so any chance that this simple pleasure could be confined to my past spurred me on to protect my voice. By about week three of treatment I was scheduling my video chats with family and friends so that I didn’t speak too much each day. My husband would come in and scowl at me to tell me time was up after a while. We got used to sitting in the quiet as I rested my voice. Post treatment I couldn’t really talk for about three weeks, with it gradually strengthening. I reverted to a mini white board for conversations with my husband and wrote out all the information I though my CNS would need ahead of our weekly phone calls for my husband to relate. It is coming back now, and I can merrily chat away, raising my voice to speak to someone in another room is something I try and avoid and if I have chatted too much I can tell. Thankfully my work has been great, I have been told by my SLT once teaching again I need 10 minutes voice break in every hour. For my first year back, I am only teaching smaller sixth form classes in lower ceilinged rooms, hoping that this all helps to nurse my voice back. My advice, rest well and repair well.
I guess the radiotherapy hitting the top of the lungs contributed to the next delightful side effect, excess amounts of phlegm. Again, this really took hold post treatment, between my nose, mouth and lungs I was getting through a box and a half of tissues a day, blowing, coughing and spitting. It can be really annoying, some days I felt I was choking on it. With the muscles in your throat damaged, bringing it up is as difficult as trying to swallow, not an attractive sight or sound when in company! The key, which sounds gross is to check on the colour of it. If it looks at all green (not the usual) then you need to contact your doctor as it indicates infection. A little spattering of blood can be expected because your throat is healing, and the coughing may slough off some dead skin. Sitting in the waiting room at the doctors in the Covid era I did feel I had to explain myself to the receptionist and fellow patients if I started to cough. Everyone is so paranoid of other people coughing now I was so self-conscious.
Anyone debating whether or not to follow the general advice of having a PEG fitted or similar may be put off by the next section of this entry, but I will start by saying that no matter how much I hated it to start with I will be forever indebted to my PEG. When I was first told about it I was freaked out, the idea of having some tube sticking out of me horrified me. I was no longer going to look like me was all I could think. My husband has a college who has a J-PEG and will have it for the rest of her life, the advice we both received from them was a great help. I decided to trust the experts and have it, better safe than sorry. Due to all the damage in the throat, they cannot be fitted once you are a couple of weeks into treatment, hence they organise for it to be done beforehand. My first problem post op was not being able to sit up. I had a colleague arranging an elective c-section at the time and thought to myself – why? Next came the ‘tummy snot’. I had a lot of leaking from my stoma, it quite honestly looked like snot oozing out, with the odd bit of blood. I had it swabbed and was given antibiotics and an antibiotic cream. This helped a bit. I cleaned the stoma regularly, a few times a day when it was at its most troublesome. It was a bit embarrassing when I was having radiotherapy and I found myself apologising, they were great as usual and took another swab to check the antibiotics had worked. Over time it did ease, and I only get a slight leak every now and then. I didn’t know how to ‘wear’ it either. It had been taped to my skin initially and I got some micropore to do the same, but after a couple of weeks my skin was getting sore. On the forum others had tucked the end into bras, my Abbot nurse advised a waistband of button loop, and I tried a belt. In the end I found it easiest to wear leggings and just tuck the end in the wait band. This led to less pulling, my skin wasn’t damaged, and I could actually forget it was there fairly easily. I also started wearing big loose shirts over a camisole, or scarves to protect my neck form the sun / cold, but also to hang over the PEG site. This covered any bumps in my clothes and concealed any leak marks when it was bad. It is important to ask for a barrier cream as the site around the stoma can get a little sore. I did start to use the PEG occasionally for feeding during treatment, but mainly in the last couple of weeks for medication as there was only so much Movicol and Paracetamol I could drink down without getting queasy. Then recovery day 1 struck and I became totally dependent on the PEG for all food, liquid and medication. This went on for about four weeks and took nine until I no longer needed it at all. I am now stabilising my weight as it dropped off too quickly in the first couple of weeks after I stopped using it, so hoping that next time I see my consultant we can discuss removing it. I want to cuddle my granddaughter and play with the dog without worrying about catching it. I am also long overdue a good old back massage and can’t have one until I can lie on my front again. I no longer hate the PEG though, it is part of me now and it sustained me in my darkest hour, how could I hate it?
I did warn you not to be squeamish, so here we are now. As they say what goes in must come out, or not when you are taking codeine or morphine. When I was a student I worked part-time in a care home, the residents tended to be on lots of medication and some were incontinent. I think that was the first time I noticed what I describe as ‘poorly wee’, or rather the smell of it. Cisplatin definitely made my wee stink, no other way to describe it. I have always been a water drinker, to the point that I pass clear urine for most of the day. I think this helped me with the chemotherapy, my kidney functions were good all the way through. It wasn’t until my swallowing collapsed that I really started to check the colour of my urine and pour enough water into my PEG to keep it straw coloured. All the way through chemo, and then in my weekly phone calls this became something I needed to feed back on. Each Monday as my hand was cannulated and results discussed I had to confirm how much, often and dark I was urinating, then how often, easily and the consistency of my poo. Thankfully everyone in the room had the same conversation so you soon get used to discussing your most private bodily functions with and in front of complete strangers. Even on the forum you will notice that whenever codeine or morphine get mentioned they come with a Movicol chaser warning. I cannot stress the importance of that enough. After my tonsillectomy I went five days and ended up with impacted constipation. It was most unpleasant, and I had to refer to Google for assistance on a Saturday night having been stuck (literally) for two hours. Warning though, the Movicol makes you smell too. Luckily, we have two toilets. Air freshener was banned because it irritated my throat too much and an open window only helps so much. You need an understanding family around you, as you can’t schedule in your visits to the smallest room once the medicine kicks in. Also be prepared for having no early warning system, when it takes effect, you may need to just go. It became quite normal to have really hard and completely liquid stools in the same day. Once I started eating again, with one of my meals being Weetabix, I found that even when I had dosed myself off the Fentanyl and Oramorph onto co-codamol I was able to finally ‘go naturally’. To anyone who hasn’t been there you really can’t appreciate how important a step this was into becoming well again. I still get the occasional stomach gurgle that tells me to find a loo in the next ten minutes, but that aside once I got myself off the meds it has been good to return to normality.
So, sixteen weeks post treatment most of my fluids and functions are back as they were before I knew about the cancer. The only area of trouble remains my mouth and the lack of saliva. This is a tricky one at times to explain to friends and family. To everyone you look normal and well. It takes quite a bit of explaining that it could be years until I can dig into my old favourite meals, if ever. But, there are worse things I could have to deal with. I am here and finally feel I can say I feel relatively well.
