Scratched raw

I am living in a state of perpetual agitation. Ok, so it is probably not perpetual, as in forever, but it seems perpetual during this period in my life. The agitation I feel fails to cease, thus I am terming it perpetual. It arises from my physical complaints. An itch at the back of the skull, oh and now at the temple. An ulcerous pain both sides of the tongue, the lips, the gums and the rear of the mouth. A foot itch again, then one on the knee. And the nose that itches incessantly. An itch on the palm, which requires two hands. Oh no, that nose has started to bleed, as has a small patch upon the knee. A nerve pinches the neck and a vertebrae. And now an itch on the thumb, which requires two hands.  

I wish the itching would stop, so I could think about something other than myself. 

Constant agitation, distraction, frustration. My futile days seep into sleepless nights. I find it impossible to sleep, yet I cannot keep my eyes ajar long enough to read a paragraph. Especially old droopy left eye, who has been hijacked by a group of rebel nerves; a mess of pinched fibres that I have long lost authority over. Often I try to read; the book perched between my chest and the cat, lights ablaze, eyes closed, wondering how the characters from 1920’s Spain got to a spaceship, and then to infinity and beyond. Poor writing Mr Hemingway, I must say. When this occurs, which is pretty much any time I opt to read, I genuinely believe that I am reading the story. I fail to grasp that these gross irregularities are my imagination. And my imagination sucks. I mean, bullfighting on a Battlestar? It sounds like an obscure way to dodge the animal rights laws, or the plot from a Philip K. Dick story. Perhaps I am guilty of imaginary plagiarism.    

As this post attests, writing is difficult. Reading, as I have said, is impossible. Conversation? Conversation is onerous, more for my interlocutors than myself. Agitation, frustration, distraction. I am on edge. I am defensive. I am trying, rather hard, not to snap or bite or to allow my frustrations to overpower me, and become the problems of others. I am not succeeding. I am irritable, irrational. Not only have I succumbed to the itch, I have succumbed to my emotions. And I cannot figure out how to control them, how to notice them, before they takeover.

Mr Peach is out of control

I have completed radiotherapy for my neck. By the time it was scheduled, all my neck and shoulder nodes were firm and swollen. Again, I needed a radiotherapy mask, to prevent any movement whilst the rays did their thing. This mask was large, encompassing my head, neck, and shoulders. It put pressure upon my chest when I inhaled, and to be honest, it was pretty uncomfortable. The entire experience was uncomfortable. At least I have no scent, so the disconcerting smell of overheating electronics was lost on me. I think this is my sixth radiotherapy round, and I am yet to adapt to it. I mean, it is far better than chemotherapy. A million times better. But it still knocks you around, it is still disagreeable. And it is difficult to remain motionless when one has a chronic itch. 

This mask is then clamped to the bed

For me, fatigue is always a side effect after radiotherapy. Someone likened it to the fatigue of a new mother. Well, I have never been a mother, and if my ability to cope with radiotherapy fatigue is anything to go by, it is fortunate that I will never be one. As this dose was directed at my neck, I was warned about aggravation to my throat lining, a bit like sunburn. This happened during my first radiotherapy round, back in July, and I survived on Fortasip and canned spaghetti for a week. Although unpleasant, it was manageable and the benefits from the radiation had kicked in so it seemed a worthwhile trade-off. This time, I was prepared for oesophageal sunburn but I was not prepared for oral mucositis. 

What is oral mucositis? Good question. Basically, a bunch of uninvited ulcers burst into my mouth shouting “We’re here! And we are not going away! Oh and darling while we’re here we simply must discuss your interior decorating. This gummy pink look is so mainstream, what we need is white, cream and ochre. Right, strip the walls, and the floor, and that strange papilliform mezzanine thing, strip that too.” It is like my oral cavity caught alight and the flames were doused with sulfuric acid. My mouth is destroyed. Ulcers everywhere, the linings of my lips, the perimeter of my tongue, the entire width and length of my left cheek. Oh and anywhere that controls movement; my oral frenula are dotted with ulcers, like strings of fairy lights. But they don’t look pretty. My tongue is amusing, if you can see beyond the ulcers. All the taste buds have gone, except for a tiny patch in the top righthand corner, so my tongue is this smooth pink rubber blob. It can’t even detect the texture of food.  

The pathophysiology behind oral mucositis, in Liv’s words, is that the radiation damages the DNA of the epithelial cells within the mouth, stripping the gum lining, leaving the tissue beneath raw and exposed. The DNA damage triggers an immune response (cytokines), and the immune cells form a protective white layer around the exposed tissue. This will remain hanging about until the gum cells get around to repairing themselves. So, cool process, but when most of your mouth is ulcerous, uncool result. Currently, my mouth burns and I can barely open it. My chapped lips have a tendency to fuse together, or stick to a beverage receptacle. My cutlery options have diminished to a mere teaspoon. The pain within my mouth is constant and it tastes sour. That must be the only flavour my imbecile buds can detect. With time, and immaculate oral hygiene, the ulcers will heal. Until then, I am reduced to a near liquid diet and an infant toothbrush. My brush has a kitty and a hippo on it. Oh and alcohol-free mouthwash is imperative, unless you wish to reignite those old flames.

There has been a significant size reduction to the quarrelsome lymph node, and his pals seem to be following suit. These are the first visible tumours that I have had zapped, so I was interested to see how quickly they would recede. Two weeks after radiotherapy and I have a discernible jaw line. I have not seen my jaw in a while. The core of Mr Peach remains, the nerves are still pinching, and my left collar/shoulder area is tense and tender. I feel I may have lost all bicep strength. All evidence supports a successful radiotherapy session. Except that the pruritus is out of control. Last week, I removed my shoe at a restaurant table because the itch was unbearable. I’m one classy lady. Systemic itchiness is ruining me. I cannot sleep, I cannot relax, I can barely think, and  I mentioned the irritability earlier on. Pretty much the only solution to paraneoplastic pruritus is to remove the neoplasm, the tumour. As that has not helped, other remedies need to be considered, systematically added to my medical cabinet and monitored to find the appropriate solution. I’ll be scratching for a while yet. 

Each time a new challenge arises, a new symptom, a new complaint, I assess the situation as an independent event, cooperating with treatment regimes and possible side effects. A common thought propels me; “It will all be better when…” When my hair grows back. When my backache stops. When Mr Peach disappears. When my mouth heals. When I overcome my fatigue. When I stop itching. This is, of course, fantasy. I may manage to vanquish an ailment, but another will just as soon arise. This is not a case where things get better.