Week 5 - Day 22

Some days I feel I’m doing reasonably okay in the circumstances, but then I catch a glimpse of myself in the mirror and have to double take. Today was one of those days. I have been ‘fortunate’ to avoid chemotherapy, so I still have my hair, eyebrows and eyelashes. I do not need a head covering. Thankfully, my neck is not yet burned or blistered. In fact, apart from my neck scar, you wouldn’t know I was being treated for cancer. For all intents and purposes I should look pretty normal, at least externally. But when I think back to what ‘normal me’ looked like, it wasn’t this. I haven’t worn make-up in month (no make-up in the mask, and what’s the point in going to all that effort just for the pets?!), the right side of my face is puffy and I have a big Frankenstein style scar on my neck. My nose is constantly dripping blood due to the irritation, so I have an attractive bloody crust around my nostrils. And don’t get me started on the eye bags! I only ever wear jeans and hoodies – these are like my new radiation uniform - because they are comfortable and warm, and also from a practical perspective it’s easy to remove a hoodie for treatment. I wear the same t-shirts every week. I either need to change into a hospital gown each day for treatment, or I can pull the shoulders of my top down so the mask can fit properly. I really couldn’t face the idea of changing into a gown thirty times, so instead I trawled through my wardrobe to find five t-shirts that are either wide-necked or v-necked and that I don’t mind being stretched over my shoulders. I now wear these same tops on rotation every week. You, too, could be sporting 'radiation fashion' soon because these very same tops will be available to purchase at our local charity shop in approximately 8 days. Grab yourself a special bargain! In addition, I have to slather a special gel over my neck and throat 3 times a day to minimise skin burns, so my hair is usually stuck to my neck and it looks as though I haven’t washed it in weeks. So – tired, puffy, greasy, bloody-nosed, scarred and wearing the same clothes. It's a great look! I can only imagine what the hospital staff think of me. I just keep telling myself I am sure they have seen a lot worse.

Given the physical state of me, it’s probably just as well I don’t have any energy to go out and socialise. One month into treatment, though, and I am really missing my old life. I dream about going out for dinner and being able to eat, drink and chat normally. Or going to the cinema and munching effortlessly on popcorn, or popping out for a coffee and not have to drink it lukewarm and chase it with water, because even milk is 'thick'. I have been told by some wise ladies who have been through this awful disease that you should expect this type of cancer to take a year out of your life. Given it has already taken 5 months, I can easily see how it can take many more months to recover. Our mouths and throats are fundamental for so many basic human functions - eating, drinking, speaking, breathing - so to have this area frazzled with radiation is truly brutal. It is no surprise that recovery is a long, difficult road - our taste buds, saliva glands and the various sores and ulcers all need time to heal. The vicious circle is that the mouth is usually very efficient at self-healing, because our saliva is anti-microbial and enables the healing process, but without saliva this healing process can’t happen. I’m lucky to still have a little bit of saliva at this stage, but it’s starting to get more and more dry. 

Pain is staying at around the same level, in that the pain is constant but mostly bearable as long as I keep on top of my medication. Eating is still the most challenging part of the day, so I have come to dread mealtimes and feel relieved when it is over. I am still managing to eat – soggy cornflakes for breakfast (bizarrely these are easier than softened Weetabix or porridge; I would have thought the opposite) and then the cheese soufflé made a guest appearance for lunch today. I also managed part of a warm scone with jam and clotted cream, washed down with lukewarm tea this afternoon. It would have been delicious if I had been able to taste it I'm sure. Dinner was lasagne. I had forgotten about the tomato sauce in a lasagne, and just a sniff of a tomato-based dish is enough to light the throat fire, so it wasn't very successful. I finished with a creme caramel, which slid down very easily even though I couldn't taste it. Never mind, calories are calories. Evenings are always the most difficult meal, and I have a 'Sunday-night-feeling' before dinner - I know it's coming but I wish it were still the weekend. 

Water is starting to taste a strange now. Again, I have been expecting this, but had hoped I might be lucky enough to avoid it. Dehydration is, of course, very serious, so if water becomes unbearable to drink, there is a risk I would end up back in hospital having fluids intravenously. I have already stocked up on many different flavours of cordials and squashes in the hope I can continue to keep my fluid intake up. A few people had also recommended coke or ginger ale to break down the mucus, so I tried this but I may as well have poured neat alcohol down my throat. It was agony! Maybe they are better attempted during recovery - one to add to the list. 

Music choice in the mask today was 'We Are Young' by Fun. I was reminded today that I am young to be going through this, with the average age for a cancer diagnosis in the UK being 66. I have had my diagnosis almost 20 years earlier than average. Having youth on my side (yes, yes, it's all relative!) hopefully means I have a physical advantage in terms of being able to get through it, but also a mental advantage. There is so much of life left to live, I'm not even 50 yet and my girls are still young - this all makes me even more determined to remain positive and do everything I can to get through it.