Maybe I was extremely naïve, maybe I just hit peak information overload at some point, maybe I could only look so far ahead. When I was first told I had throat cancer I went off the scale to the dark side and thought that was it, worst outcomes flooded my thoughts, once I started to get more information, I leapt back to the other end of the scale thinking “six weeks treatment and a bit of recovery, I’ve got this!”. The truth lies somewhere in between.
In various appointments I was aware that there would be some time needed to recover, there would be short, medium, and long-term side effects that I would need to medicate or navigate my way through. I honestly believed though that by the summer things would be back to normal, hence the naivety.
About halfway through my chemo-RT there started to be talk of the two weeks after being harder than treatment. In my mind I related this to recovering from the tonsillectomy and how I had been warned to expect peak pain around day 7, which had generally played out to be true, then miraculously feeling much better just a few days later. During the last week of radiotherapy, I found swallowing, talking, etc. getting more difficult. On my final day the hospital was like a ghost town – essential treatment only on Good Friday. The nurse who was overseeing my radiotherapy that day talked us through the discharge notes as we waited in the corridor. She gave me one of the best pieces of advice – “take as much pain relief as you need, drift off in a morphine cloud and sleep for the next two to three weeks”. She was bang on. As we left the Deansley centre, there was a huge sense of relief as I rang the bell. This was swiftly followed by overwhelming exhaustion on the way home. We had made it, time to hibernate.
When recovery actually starts is debatable. Technically should day one be the first day after treatment? This had been my thought to start with. In all honestly, I recommend to people now that this is the in-between time, the dark days. Recovery in my view starts on the first day the fog starts lifting.
So, day one of the in-between started pretty much as the previous weekends had, happy not to be trekking to the hospital. Breakfast was slow and steady, taking longer than it had a couple of weeks earlier. Lunch was when reality struck, halfway through my pancake I just could no longer swallow. I had coughed and struggled, then realized it just wasn’t going to happen and hit the Ensure. By that evening drinking Ensure was just too much, so PEG feeding it was to be. So much for enjoying a wedding anniversary meal together – this was the first night for a few weeks my poor hubbie ate alone. He loves cooking but became the king of ping and ding as he just lost the desire to cook for one. I also had my last decent drink of water for a couple of weeks that day.
On the Sunday I was down to struggling to swallow about 10 sips of water a day, I had the comment ’just keep trying to swallow a bit of water every day so that it comes back’ running over and over in my head like an earworm. I ached, I was tired and slept for about 18 hours a day. I was waking every couple of hours to keep the pain relief topped up with paracetamol, oramorph and aspirin gargles in addition to the fentanyl patches.
By about day 3 or 4 my sinuses went into overdrive. I was producing inhuman amounts of mucous / phlegm. I was going through one to two boxes of tissues a day, trying to clear my nose and sinuses. Think of the worst head cold you have had, multiply it by a large number and add some more. I have likened the experience to having developed a superhuman ability to produce snot, endless production and of gorilla glue strength / stickiness. I was quite honestly drowning in the stuff. I was pumping 3 litres of water a day through the PEG and by the end of week 2 able to take 10 sips of water at a time, rather than spread over a day. Even so, this stuff was relentless. Eventually my CNS suggested trying a nasal douche – this was hideous to start with but brought huge relief.
At some point in week three I have a vague recollection of talking with my husband and telling him the two weeks since treatment had finished seemed so long. He pointed out it had actually been three, yes, I had lost a whole week in that morphine cloud. At this point I thought it was time to try and pull myself out of it a bit. I started getting up for longer, stepped outside of the house, and tried to get out for a bit of a walk. Unfortunately, by this point I had lost the chemo bounce and I was getting stiff again and my hands and feet had started swelling. The arthritis as it was soon to be diagnosed was holding back my recovery a little.
I think it was around this time that I started to try and drink some of the Ensure, to get myself slowly less reliant on the PEG. This contributed to peak mucous, they always say not to have too much milk when you have a cold – I guess it was similar. I was getting better at this point. I started to measure progress in how many sips it took me to drink the Ensure, I think it may have started at about 30. By about 6 weeks post treatment I had got this to 13 – strange how we measure the milestones. This gave me the confidence to try and eat. I started with one Weetabix, soaked in lots of milk. It took me 90 minutes, lots of pain relief and determination. I posted the empty bowl on Instagram. 6 months earlier I had been able to stuff most of a 14-inch pizza down in one meal, no longer so.
Gradually eating became easier. It is an unbelievably restrictive diet – nothing sharp, dry, acidic, spicy. Everything was like flavourless slop, with the odd bit of sawdust thrown in. I took some pictures of the inside of my mouth – it was grey, dry and wrinkled – no wonder food just felt awful. Some of the staples I had managed during treatment just did not appeal. Even 7/8 months on I can’t say my appetite has returned. Lots of savoury food just doesn’t appeal and I cram in the chocolate some days just to keep my calories up before my next clinic weigh-in. Then clean my teeth so they don’t all rot and fall out.
By the time I went to my first post treatment clinic I was starting to feel better. Tired, but I was able to talk. I had stubble coming though at the back of my head and when I was told I could use my usual shampoo and wear make-up I was delighted. It was great to go out and look and feel like me again. Going to the hairdressers for the first time in 8 months (cancer in Covid times!) was such a treat. By this point I’d lost 3 stone and despite all the treatment was looking really well. The new blonde locks gave me a real spring in my step. Now the recovery for real was starting.
