Eighteen months ago I took one vitamin tablet and one anti-histamine, both over the counter and not on prescription. The only reason I went to see my GP was every three years for routine smears and the occasional minor problem. Roll the clock forwards and at one point during my treatment I counted about 50 medical interventions I was having to do each day. These are difficult to keep track of to start with, and even more difficult to actually schedule into the day at times. Before I started treatment I set myself up a tick list for the week, I only actually used it in the first week but figured it would be useful to my husband if he had to take over issuing my medicines.
I had been prescribed Omeparazole a year ago to prevent reflux, just in case this was the cause of the irritation in my throat. Now that I had a PEG tube it was even more important to take something to manage the stomach acid and I had been switched the Lansoperazole fast tabs. In the first few weeks I was fine melting these on my tongue, by about week three though my mouth was getting too dry, so I had to dissolve it in some water and swallow. Eventually, when I was wholly dependent on my PEG I swilled it down the tube, trying to keep it moving as they don’t fully dissolve. I’m back on swallowing a partially dissolved one now and then swilling the cup again to get the dregs. This is my first pill of the day, getting my stomach ready for the rest and so my day starts at 5.30am to have this. Most days now I also take the dog out for a walk whilst I wait for this to settle, it gives me a good hour before I have anything else.
Next up is the analgesia. This has been in various forms over the duration of the course of treatment and recovery. I am currently down to paracetamol in the day and co-codamol at night (that is mainly for my rheumatism rather than throat pain though). As with all medicines these need to be easy to swallow or put down the PEG, so are soluble. Once you progress onto the co-codamol or morphine it is essential to also start taking a laxative. We have enough to contend with. I got caught out initially and ended up going 5 days. I broke the golden rule and headed to Dr Google for advice too as this happened at about 9pm on a Saturday night. It was one of the most unpleasant experiences of my life when I finally rectified the problem after a two hour struggle. Without being too graphic I was glad of my the disposable gloves in my husband’s Covid safety kit for work! Different hospitals prescribe different options, but don’t bother with an over the counter option if you can help it, Lactulose made no difference for me. Once I was in a routine one sachet of Movicol a day worked for me. Like most of this though, we all react differently, so work out what is best for you. At my peak pain I was wearing 2 x 12mg/hr slow release Fentanyl patches and changing these every 3 days. One tip is to put them on a part of your arm that doesn’t bend too much, I lost a couple of patches by putting them too high up my arm. In addition to the patches I was taking 2 paracetamol four times a day, plus up to 10 ml Oramorph top-up for break through pain. To be honest, this was in the three weeks post treatment and I was floating in and out of sleep in a morphine cloud. It worked for the pain, but I needed to break from it to help manage the fatigue a little once I felt up to it. Some days this still wasn’t enough for the pain in my mouth, I didn’t have oral thrush but it sting like hell at the back. I was told to have 2 dispersible aspirin in warm water, gargle them and spit it out. This worked really well. Some of the best pain management advice is to take it by rote, don’t sit there waiting for the pain to kick in and then take it. In order to manage this and not lose track, especially overnight, I ended up setting alarms for all my pain relief on my phone. I have absolutely promised to change the tune when we are through this. To start with I was worried about the disrupted sleep, but to be honest I got back to sleep quicker doing this than lying there in pain when I needed a tablet.
On top of the actual analgesics I was also prescribed Difflam mouth rinse (or similar) to numb my mouth 15 minutes before eating. This helped lots, be careful to leave it the 15 minutes though and check the temperature of food, you don’t need to burn your mouth any more than the treatment does for you! I tended to need a mouthful of water to rinse the flavour away before starting to eat. At one point I was also taking an additional antacid and oxetacaine 30 minutes before food. This helped reduce reflux later in the day and provided some additional numbing to the throat. 12 weeks post treatment and I don’t need either of these any more, which makes it easier to eat out as I have less to carry and schedule in for mealtimes, likewise I am less precious about what time meals are ready at home and there are less timers and alarms ringing so I don’t forget and my mouth is ready on time.
Mouth hygiene is essential if you are to avoid oral thrush. By all accounts this stings like crazy, so far I have managed to avoid it. I have always been a Girl Guide when it comes to teeth cleaning, the only filling I have is because someone left a baking bean in a homemade quiche that cracked the back of a tooth. I think this helped. Morning and night I use the Duraphat high fluoride toothpaste, I have this on prescription at the moment and have been told I need to use it for the rest of my life to help my teeth keep their strength. I understand to buy it is about £15 a tube, and much smaller than most commercial toothpastes. However, it dispenses a narrow amount that is more than sufficient, so you probably get as many goes out of it as a regular tube. I do have to add water and rinse at the moment given how dry my mouth has become. Both morning and night and after every meal I have a post meal swill of Flourigard mouthwash. This has proven tricky at times, out of all my prescription items it has been the hardest to get hold of. I managed to some from Amazon when the pharmacy was struggling. They did get me an alternative, but unfortunately it had alcohol in it, so I couldn’t use it. I also managed to get a very similar Flourigard to my prescription from Amazon so have been using this. I have tended to stick mainly to drinking water and only about 10 weeks post treatment re-discovered chocolate as a snack, so keeping my mouth clean between meals hasn’t been too tricky.
Part of the mouth hygiene problem comes from the dryness in your mouth, leading to sores and ulcers. Again, there were various options prescribed to help with this. I had Caphasol tablets, BioXtra Gel and two types of saliva spray and GelClair was added to the mix part way through treatment. I was told to rinse with the Caphosol four times a day to start and build to ten if my mouth got sore, even though I had an ulcer from the end of February to mid-June, which at its worst ran the full right side of my tongue, I only actually managed to fit in the ten times on two or three days. I stopped using it for a while but have found that now I am eating a wider range of foods, some quite high in sugar I am getting a very dry mouth overnight at twelve weeks post treatment; a Caphosol last thing at night does relieve that quite a lot. About week two into treatment I found my mouth getting quite dry and I started to use one of the saliva sprays. One apparently contains pork fat, so isn’t suitable for everyone. Despite being vegetarian I did try it, but much preferred the other. I actually found drinking water much better most of the time, but never set off to walk the of without a bottle of spray, which I do use and it saves carrying water with me. I also keep a bottle in my bag if going out anywhere, being caught out with your tongue sticking to the roof of your mouth isn’t a desirable situation to find yourself in. I found the gel really useful with my ulcer, especially last thing at night, post Caphasol. I also rubbed it on my gum where I had had the most extensive surgery. Once the ulcers really took hold during treatment my consultant radiographer also prescribed GelClair sachets, these were great and you can swish it around once mixed with water and it coats your ulcers much like Bonjela. You just need to remember not to eat or drink for 30 minutes to an hour afterwards. To be honest it was the waiting times before and after each treatment that made it virtually impossible to fit everything that had been recommended into a day, and confusing as to what the best order to take everything in would be.
Having been fitted with a PEG (makes me sound like some old banger of a car!!) I also had to flush that out twice a day, even if not being used. This to be honest doesn’t take long, hook up and have the 50ml of fresh water in the syringe to drain through. I was advised to do this by gravity rather than use the syringe. I only needed to resort to the syringe a couple of times when it absolutely wouldn’t move, a quick squeeze along the tube normally managed to move any slight stubborn blockages. It only took me a few days at the beginning to get used to seeing what I had eaten make a re-appearance in the tube a very short while later. A couple of weeks after having the PEG fitted I also had to start to advance and rotate it every day to ensure it didn’t fuse with my stomach. To keep in sterile swabs for this I cut up a couple of my granddaughter’s old muslins, they did the trick. We had a bucket of Napisan to put them in before washing in batches and a bowl to put the next one in with boiling water to sterilise it. It was annoying the number of times I would head into the shower and run back out again to grad a sterilised swab to clean around my stoma. I struggled in the first few weeks with a lot of discharge from my PEG stoma, all my clothes were covered in it, one of the reasons I often worse a loose scarf was to cover any mess when I was out. As a result I then added in prescriptions for antibiotic tablets, which I took for a week, antibiotic cream to apply around the stoma and then longer term barrier cream to prevent and seepage from burning my skin if it contained stomach acid.
Skin care is also vitally important. I lovingly referred to my radiotherapy as tanning sessions, I was once frowned at when I checked into the ward and said ‘tanning session’ when asked what treatment I had come in for. Come on, we are allowed some strange humour to get us through this nightmare surely! As previously mentioned I was using all non-scented and sensitive skin products on my hair, face and skin. I added the Aveeno creams to this, one as a body lotion and the another moisturiser was also prescribed, however this came into its own post-treatment. I applied the Flamigel religiously, to my neck, collar bone and bald patch as it appeared. My husband had to help at the back, we did this morning and night and then I did my best too after every radiotherapy session. It did the trick though. Backed up with 3 weeks of Polymem roll my skin barely shows any signs of the burns from treatment. Yes, it is a little thin and does itch at times, otherwise providing I protect it from the sun all is good. I use factor 50 if I will be outside on a bright day, cover my neck with scarves and have the most ridiculous looking floppy sun hat, but who cares – it does the trick. That is one thing this experience has taught me, I really don’t care so much what other people think, I can go out without doing my hair and make-up if I want, it really isn’t on my priority list anymore. The Polymem was a bit of a faff to get used to, a good tip I was given was to make snips along the edges, it sits better on your neck. I was also advised to lightly dampen it on the skin side before applying it. It did bring a lot of relief to a very dry, hot, and itchy neck. My radiographers helped me fit a clean one post treatment every day until I got into a routine with it.
Add in the medicine and tablets I picked up at the end of chemo days, steroids and anti-nausea which had to be taken morning and night for two days.
Making sure I followed these routines, in addition to the physio exercises to keep me swallowing needed planning into the day like military precision. As I have said, setting alarms helped keep me on track. My husband is now on first name terms with our local pharmacy having collected carrier bag after carrier bag of medicines for me. Add to this some unbelievable frustrations with getting hold of what was needed. At the outset the GP was fantastic and prescribed everything on the list, but they weren’t all set up for ordering via the app to get repeat prescriptions. I ended up having to message via the app and ask for what was needed. All too often I would get some items, not always in the required quantity, some items were missing and there was usually something I hadn’t asked for (mostly saliva spray that I have still not finished a bottle of). Many of the items being prescribed are quite specialist, so need to be ordered in. This wasn’t a problem at the hospital as they are used to it. However, when ordering through my GP it could take 2-3 days for them to approved and send to the pharmacy, then another 2-5 days for items to come in. Add to this the fact that depending who was working in the pharmacy they didn’t always check everything was handed over. I lost count of the number of times I would say to my poor husband ‘where is the’, and he would go back to collect it – I did give him lists of what needed collecting in the end. Whilst I was having treatment we managed some of this by asking the hospital to prescribe. This is when we got used to the blue prescriptions that could only be used at the hospital pharmacy, usually with a 30 minutes wait. About a week or two after treatment ended we hit peak problems over this. Between the doctors not prescribing things, or only five days worth and the pharmacy struggling to get hold of what we needed we were getting desperate. My poor husband was at his wits end, I needed the meds to cope with the pain and try to swallow, and he was facing the prospect of having to do a two hour round trip to the hospital to get what I needed. I sent a rather tersely worded message to my doctor. Thankfully this time it was my actual GP who picked it up and not a locum, he called us at home and sorted it all. He understood the frustration. Despite the odd difficulty getting hold of things from suppliers the issues were resolved, to the extent we now had too much of some things!
