It’s a glorious Sunday morning. I’ve been awake since 6am. I slowly pulled myself out of bed and headed downstairs to what has become a routine of gauging how my mouth, throat and neck are feeling, along with the rest of my internal workings. It’s a bit like starting up an old pc, it seems to take ages – yes, it’s like logging on for me – on a slow computer!
I haven’t slept too well during the last few days as I’m finding that I need to sit up rather than being able to lie on my side comfortably due to restriction and congestion in my mouth and throat.
Comfort is an important word, here. You lose that sense of comfort we take for granted. You suddenly find yourself uncomfortable and you long to be comfortable again – at ease, if you like. These things become powerful thoughts & motivators to get you back to the way you were before – and not soon enough!
I have adjusted or reduced the medication I am on for a few reasons – I’m not sure but there’s a balance somewhere – It’s not a case of fine tuning but more of a “suck it and see” approach.
Even as I type this, I am struggling with a small glass of water with an added syrup laxative, shaken but not stirred, of course – down the hatch!
My day revolves around trying to eat and drink. You’d think that would be straightforward – what’s the fuss? The big deal? I find Thursdays to Sundays are generally difficult days following the long day of chemo each Thursday. I have a few days of eating a little and also taking my dietary shakes, via my feeding tube, to keep nutritional content up; packed with protein, but they lie heavy yet that’s ok.
My beard is falling out where I am being radiated – that’s a shame, I must say.
My phlegm has turned to glue and backs up in my throat and mouth and I’m constantly clearing the back of my throat which is dry, and rough. The normal act of swallowing is just unpleasant along with my salivary and taste glands which have been blasted too leaving me with a stomach churning metallic odd taste and sensation which all adds to the withdrawal of hunger and appetite along with regular bouts of gagging due to the cumulative effects of the above.
The accumulative effects of radiation are also making my skin tingly around my neck and shoulders, becoming hot and sore which I’ll manage as I go along.
So, it’s a struggle for me this week, it’s painstaking and ,as stronged willed as I can be, still difficult along with the fatigue and the lack of proper sustenance.
There’s a chap at the hospital who I started talking to and we’ve exchanged numbers and will hook up when we are both ‘normal’ again for a good meal at some point in the months ahead. He is finishing his treatment this coming week, so he is 2 weeks ahead of me. He has been quite an inspiration and has been giving me little tips about things to watch for, and how to look after yourself – he is a real trooper; Thanks Vic!
There’s an anxiety attached to this on the more serious note of not losing too much weight and not having my treatment delayed. I have lost weight and you see it around my face – my mask around my jaw has loosened and adjustments have to be made. I had a review with a radiographer on Friday which was reassuring and positive though – uplifting.
Some days, I sit perched on my bed looking out onto the world, passing by. I am there with my thoughts, in my own solitary world and that’s ok – I think about the passage of time and being in a temporary space that’s just not conducive to being part of that world, outside of my bedroom window – I’m not ready yet; accepting to rest and recuperate as much as I can, as much as I need to.
It’s a sort of self imposed solitary confinement – me, myself and I. I think part determination and part accepting of my circumstances without getting too bogged down with the circumstances.
I know I am in the process of being treated but it is easy just to reflect for a few seconds, as I enter the hospital, or sit perched on my bed having that lovely feeling of being ‘healthy’- catching yourself and saying, “I am feeling pretty damn good today” – I look forward to that moment.
I joke as I watch my family tuck into their meals – it’s one of life’s pleasures. Those little rituals and the enjoyment of being satiated with good food and drink.
All I ask of them is to frown and moan whilst they’re eating, not to please enjoy their food, in front of me – it’s very off putting and distracting, you know!
I love a Byron burger strawberry milkshake – my daughter, Sophie, who lives in London, was at a Byron burger restaurant yesterday and sent me a pic of the ice cool, thick, and sweet strawberry shake still in the jug it was mixed in – yum. Hopefully, by the end of the summer that will be on my to do list!
On the subject of food, surprise surprise, I was listening to an audio on meditation. Cut a long story short, ham sandwiches were mentioned and it reminded me of the legendary fresh ham sandwiches my grandma used to make. Freshly baked, white bread with a little crust, very thinly sliced with a tasty layer of butter and ham fresh off the bone cut just right with a dash of mustard – heaven!
My grandfather also grew the sweetest and crispiest tomatoes in his green house which would add to the afternoon tea delight – I would like to recreate these moments, as best I can in the months ahead – perhaps little bench markers for me to get to a sense of normal, and healthy again.
I still have a sense of smell which is bitter sweet I have to say. The fragility of my stomach and mouth connection can make certain smells nauseating. I can walk by some fresh flowers and still smell their subtle scent!
I am a breakfast man, first and foremost – the most important meal of the day. I grew up on ready break, and have been a religious porridge devourer without fail every morning for as long as I can remember although now I can’t remember the last time I wolfed a bowl of porridge! Odd! Several months ago perhaps?
Here I sit with one and half weetabix, bland with a splash of sugar, haven’t eaten sugar for years like that either, and I sit and take slow mouthfuls over about 45 minutes – painful for me. I am normally a wolfer not a picker, I’ll be honest – although I am in no rush, I know that, at the moment.
I sound like I am really moaning and groaning – yes, I think I am, but I am here to share with you a little something of what’s going on – the highs and the lows, which is life and the human condition.
I do feel like the sick dog that just wants to lie down in his basket and sit it out until I feel better.
Until the next time – woof!