Peaches and Sake

The pruritus that I have been whining about for the last wee while is now out of control. No part of my anatomy escapes the haunt of the itch, and the haunting is incessant. I spent the last ten minutes scratching my palm, whilst devising a method for the removal of my nose. As it has lost all olfactory function, and as it refuses to halt any itching, it simply needs to go. Unfortunately, I am yet to develop a rhinoplastic solution, as no thought will stick for longer than five minutes without a distracting itch arising. Five is, perhaps, being generous. Argh, if you’ll excuse me one moment, an unavoidable itch has developed between my second and third toe, and the imploration for a scratch is too difficult to refuse. Have you ever tried denying your third toe? It does not end well. There seems no resolution to the torture except a solid scratch. I have tried moisturisers, both chemical and natural. I have tried oils, oatmeal, antihistamines, three different kinds of soap-free soap. Hot showers, cold showers, mineral baths, distractions, mindfulness, even tearing up tissues; nothing soothes the itching. Despite maintaining military length fingernails, rips in my skin are beginning to show, and finger imprints are appearing in the form of bruising.

I have delved into the science, of course, and have concluded that the lymphoma is to blame. Itchy skin (pruritus) is a well documented symptom of Hodgkin’s Lymphoma; 15% to 30% of patients report it. There is scientific speculation that the malignant Hodgkin’s cells, which are known to secrete a bunch of cytokines, are secreting a few that aggravate the nerves under my skin. Cytokines are cool. They are chemicals released by the body to inform cells, particularly blood cells, where to go and what to do. How do your neutrophils know where to be to fight that bacterial infection? How does the bone marrow know to increase white cell production? Because of cytokines. My rogue B-lymphocytes release fun cytokines that encourage fevers, rigors and itchiness. The tumours in my neck, the nodes the size of a Roald Dhal peach, they must be releasing increased itchykines. (Just so you know, and to ensure that I am not lumped in with the fake-news crowd, ‘itchykines’ don’t exist. I made the term up because I like puns and biological science at a cellular level. Lame, I know. And what with this disclaimer and all, I have really disrupted the flow of this post. Yet, ‘itchykines’ remains an unofficial non-thing. I’m sorry about that.)

Oh and those neck nodes I mentioned? Yeah, they’re pretty big now. Mr Peach has remained firm, and a node beneath my jaw (submandibular) has ballooned over the past week. I now have a puffy face with a droopy eye, and there are facial areas that are numb to the touch. Like my entire left ear. Ironically, this numbness does not provide itch immunity. Instead, I am numb to the rasp of my fingernails, resulting in an ear itch that seems eternal. My hair has almost returned, except for a bald strip that divides my skull. The previously endearing circular patch at the rear is transforming into a rattail. What with the lumpy neck, awkward hairdo, swollen face, and continual scratching; I am the cretin you fear on the bus.

I spend a lot of time pondering. Some of these ponders find their way to this blog, but most are confined to my head or my journal. I’ll share these latest thoughts, although it is possibly unwise to do so. Currently, I am struggling with the concept of time. How much I have left, how best to utilise it, how much I am sapping from those around me. No matter how I spend my time, I feel guilty about it. It always seems that I could be doing something more meaningful. It always seems that I am achieving nothing. At night, scratching away, I reflect on the past day, my memory spectacles clouded by guilt and regret. I don’t know how best to spend my hours, and I worry that I am not making the most of the time I have left. Whatever the most means. 

A few weeks back, before my face puffed up, the haem team ordered a CT scan. I found this amusing. Mr Peach has been growing since January. I knew my tumours had not reduced, a glance at my neck could confirm that, so a scan seemed unnecessary. Aside from my inflated neck nodes and irritating skin, I was experiencing no other disease symptoms and my energy levels were improving. Given that time is a concern of mine, and given my health was stable, Mike and I thought it might be an opportunity, perhaps our only opportunity, for an adventure. We'd been murmuring about Japan since January. It was now March, springtime, perhaps the cherry blossoms would be in bloom. We ran through my medical concerns. How fast could my health deteriorate? What was the worst that could happen? These questions are rhetorical; the harbingers of dwell. Impossible questions that no one can answer. We scrapped this approach. If it were not for the lymphadenopathy we would have booked our trip without hesitation. Instead, we sought medical advice. 

I have four medical liaisons, two in Wellington and two in Nelson. We surveyed them all. It was an interesting situation. Not one would commit to saying yes, but nor would they refuse permission. They were desperately trying not to deny us. Someone may have said ‘unadvisable’ at some stage. It was the distance from New Zealand that concerned them. There were no issues with Japan as a destination, nor my ability to handle the 11 hour flight. But they were worried that if drastic circumstances arose, 11 hours was a long time to delay medical intervention. To complicate matters, the CT scan revealed just how large Mr Peach was. And that he was compressing my jugular, and forcing my larynx to the right; a widespread issue globally, it seems. Apparently, jugular obstruction is not a major issue. There are a network of fail-safe veins that bypass the occlusion without any drama. The risk was the carotid artery. If old Peachy continued to grow, he may compress the carotid artery, and that could lead to a stroke, which would not be much fun in Japan. Their immaculate healthcare system is simply too expensive for uninsurable invalids who happen to be tourists in their country.  

We stewed and dwelled and researched and stewed some more. At some point we realised that we had expended so much fucking effort, that there was no way we could back out. Flights to Osaka were booked, four days prior to departure. I had intended to keep Wellington in the dark. I felt the trip would just worry them, and no consultant needs extra stress. Unfortunately, he called an impromptu meeting to discuss the CT scan, and I ended up confessing. Surely this is a common issue, I asked, you must have patients travelling all the time? No. Not often are his patients healthy enough to consider travelling. I am quite fortunate. Immunotherapy is not going to cure me, but it does allow an uncomplicated trip to Japan. Medically speaking that is; everything else in Japan is entirely complex. It is a country of confused fun. Our decision to travel could be deemed reckless despite our hours of consideration. Would you have gone? I remain unconvinced that travel is the best use of my time. I enjoy it, I enjoyed Japan, I enjoy our jaunts into the New Zealand countryside, travel excites me. It injects me with pseudo-vigour and happy fun times. But my gratification is not the sole purpose of life. It aides no one but myself. Well, perhaps travel is better than nothing, which is often where my ponders lead. 

Totally worth the risk

Mr Peach is in his final days. Radiotherapy is scheduled for the coming week and I will enjoy watching him rot. I am hoping for a vast reduction in neck size, and a cure to this incessant itchiness. I am also yearning for a shoulder massage. Massages are difficult to book, you see, when you have lumps where you ought not. Something to look forward to, as daily tasks become progressively harder, and the nerve pinching progressively worse. Oh, and I assure you that the movement of my voice-box is purely anatomical. I remain the outspoken anti-corporate, meat-free, green-voting hypocrite that you all adore. If I do not have my ethics, I do not have anything. 

Communicating with other worlds

Guys, guess what? I have some hair. Three weeks ago, I began to sprout horns. Triangular scruffy horns, positioned as one would expect on a creature of the netherworld. The beginning of a Dantean descent; Hell’s initiation package delivered to me via hair growth. It certainly looks comical. I guess these two patches received less radiation than the rest of my head. I also have a thin band of scruff along my hairline, about the shade of a five-o’clock-shadow. This scruff links my two triangles. Faint, yet evident. The rest of my head remains bald, although I am promised that there is one patch, the size of a coin, growing on the back of my skull. Perhaps this is my halo. I say the rest of my head is bald but that is not entirely true. There are a few brave follicles shooting their hairs upward, and these hairs stand erect upon my head like little antennae trying to communicate to another universe. Maybe this is where the triangles fit in. They are too precise to be theological, astronomy must be the answer. Maybe I ought to read some L. Ron Hubbard. Oh no, what am I thinking? Another look in the mirror and it is obvious. Two triangles and a thin strip, obviously I am growing cat ears. I look like I’m a member of Josie and the Pussycats, wearing a headband with feline ears on it. Or Minnie Mouse ears for the slightly younger audience. Perhaps I will reincarnate, perhaps I will become a cat. I know I have discussed this theory before. It isn’t satan or aliens that await me, it’s cats. I’ll start singing Memory now. 

Whilst I am on the subject of hair, my sister-in-law Janine is shaving her head next week as part of Shave for a Cure. If this had all happened two years later, I may have been cured, and in two years time, someone else might be. This is in part due to the work performed by the Leukaemia and Blood Cancer Foundation. My life has certainly been prolonged by medical research. So if you feel inclined, please support her. I, personally, am looking forward to a little family regrowth challenge. Although, it isn’t really fair as I have a headstart of four months and a healthy dose of Prednisone at my advantage. I suppose I would be disqualified; steroid usage is frowned upon in any competition. 

In other news, I have some rather choice cervical lymphadenopathy going on. Throughout my illness, my lymph nodes have expanded and contracted as they have deemed appropriate. This is classic with Hodgkin’s; the nodes tend to overreact during an infection. Problem here is, I appear to be infection free, yet these nodes are not contracting. One neck node is about the size of a peach, and all his buddy nodes have decided that the swell thing to do is expand. I have used a fruit analogy but in reality these nodes have a tactility of stone, impeding the movement of my neck. They make it difficult for me to toss my hair back over my shoulder, which of course I do frequently given my minxish nature and full head of hair. But aside from the restricted movement and the disconcerting aspect of a summertime fruit protruding from my neck, the swollen lymph nodes do not seem to affect me that much. Although I must say, it is nicer for one's tumours to be hidden. There is nothing like seeing a patchy neckless monster reflecting back at you each morning to make you feel content with the world.

I am also incredibly itchy. This is an early symptom of Hodgkin’s lymphoma and I remember being itchy when I was first diagnosed. It is odd, because other than the giant neck nodes, I have no other Hodgkin’s symptoms. I am pain free, have a healthy appetite, and a stable weight; I just have a need to scratch all the time. And at night my feet drive me insane. So that is a fun new development, and I bet I look super cool scratching my nodes in public. Other than that, I have been feeling pretty good of late. Really, I am only complaining about being itchy, so that must mean that things aren’t too bad. 

Oh, and if you haven't picked up on my subtle links, you can sponsor Janine by clicking here.

Sharpening one's senses

Argh, mornings. Mornings are hard work. I am aware this statement is no grand revelation, insightful breakthrough of the mind, or epiphany; I have never liked mornings and I imagine about half of you out there would agree with me. But, currently, mornings aren’t worth getting out of bed for. Except that I am forced to. Pain has again arrived. Right sided rib and lumbar pain this time, restricting possible slumber postures to a mere two. Tactical Sevredol intake no longer seems to help; pain is winning the war on opiates. After a night locked and rigid, morphine levels diminishing, well mornings become unbearable. Pain wakes me. I rise, perhaps dress, then collapse, breathless, back upon the bed. Breakfast is impossible. Coffee, also. And I am just a dreadful person to be around. To say my fuse is short would be a gross understatement. It is morning now.

I am aware of my cantankerous nature. I work hard to bite my tongue, to try and diffuse my irrational agitation, but I tell you pain makes social interaction pretty difficult. I have no patience or tolerance or compassion, and I despise feeling this way. I preferred being brain numb and sympathetic than alert and cranky. A tourist, on a walking trail just ahead of us. My pace is that of a sloth; there is no chance that anyone will hold us up. We have nowhere to be, no reason to rush. This particular tourist, on this particular day, seemed fond of taking photos. She stopped, often, her phone in front of her face, snap, snap, snap. A sandy track through the manuka trees, a manuka tree, farmland, a cow, a stile, a stone. Snap, snap, snap each time she stopped. She never held us up. She had no impact on me, nor anyone around me, yet I was fuming. Then the pointlessness of my anger aggravated me further. I wanted to scream and cry and tantrum and rant. It requires too much energy to be angry. I can’t go wasting energy on minor incidents that have no ramifications on anyone else in the slightest. Outrage is pointless. It is hardly an emotion, it is a reaction, and an unproductive one at that.

Snap, snap, snap

Chronic pain seems to do that to me. The pessimist emerges. I concentrate on what I dislike, rather than what I like. I place fault at the feet of those around me. It is not the tourist who has caused my anger, I have caused it. I am on the verge of an eruption, the pain needs to be stopped. So another trip to Wellington, attempting to eradicate the pain, again, with radiotherapy. There are many types of pain, and most I can manage. Often, pain passes. That is how I tolerate  it. I know that it will pass, and I will feel good when it does. The pain I am experiencing now has been progressively worsening since December. It doesn’t go away. It is dulled by morphine, but always a small portion remains, chipping away at me. The radiation team suspect that the Hodgkin’s lymphoma cells are now inside my ribs, slowly expanding the bone, and that this expansion is causing the pain. Which is how it feels to me; like someone is trying to inflate each rib, coupled with a nerve pinch.

My appetite since the TimTam incident has not been great. I am not sure why this is. It could be disease, I certainly have some gnarly neck nodes at present. But, to be honest, I do not wish disease to be the reason. I am opting for denial. So, I shall look for other excuses. Mainly taste, I think. Since the November head radiotherapy, my taste has been lacking. I can recognise the six base ‘tastes’ and a few specific foods, but not much more than that. Fortunately, I can taste strong coffee as ‘coffee’, but I can’t taste any subtleties. I can barely taste beer as ‘beer’. It is not worth taking me to Garage Project at the moment. Occasionally, I find myself craving a dish that I know I shan’t be able to taste. This seems odd to me. It appears I can activate taste receptors within my mind but not in reality. Initially this lead to disappointments, further tantrums. But I no longer submit to these cravings. Still, the tantrums tend to remain. There are dishes and drinks that do taste exactly as expected, Coke, unfortunately, being one. Sometimes it is a relief to eat something and have it taste precisely as you remembered. Often, I am just left disappointed. I guess this is what global food corporations thrive on. A consistent bland taste.

Also, I have no sense of smell. Like I cannot smell anything. Again, this is side effect of the brain radiotherapy, so I’ve been unable to smell for about twelve weeks. You’re probably aware of the time frame. I do keep harping on about it. Anyway, it is unlikely my sense of smell will return. It is a peculiar feeling, having a core sense wiped out. Granted, smell would have been my choice, if I’d had a choice, I know I am fortunate. But I do feel a little dull, like I am missing more than just my sense of smell. Perhaps its absence will enhance my remaining base senses, and I will be a superhero again. Yes, again. Ok, I may have a Marvel complex. Actually a Whedon complex is probably more accurate. Like anything that vanishes, I did not realise how much I relied on scenting until I could do it no longer. I have had to adjust how I cook; watching the onions sauté rather than spinning around once they’re fragrant. This is on those rare days when I happen upon the energy to cook. And to be fair, I cannot tell you how palatable my creations are because I cannot taste them. It may be best for me to forgo cooking. My laundry abilities are also hampered. Either I must recall what I have worn and when, an unlikely prospect, or new systems are required for detecting dirty clothing. The old sniff technique is no longer valid. Dr Urbino’s affair remains secret. Florentino never gains his true love

Appetite, ah we’re back to appetite. Smell seems to contribute much to appetite. Perhaps I require bells to stimulate salivation as I no longer have my onions. Oh shit, my onions, I forgot my onions. Hmmm, well, I am sure there is a recipe out there that calls for blackened onions. No, no, don't worry, I'm not cooking. I know much better than to blog and fry. An inability to smell also impacts on food storage. I have never been one for expiry dates. But now I cannot smell if the hummus or milk, is foul. I just blissfully use it. Perhaps this is the cause of my nausea.

There are positives to an absence of smell. Public toilets, long drops, neither are a bother. Except I need to look a little closer before rushing on in and settling down. I guess pungent smells are meant to repel, to alert, to let one know that something is amiss. Smoke, gas, heat, petrol, biological fluids; all void in my nasal cavity. A little disconcerting, again when cooking. However, another positive, at least my nausea no longer feeds-back upon itself. Why the nausea? I do not know. All I know is that it isn’t smell related, but it is rather frustrating. I have become accustomed to vomiting in public, much like I was when I was eighteen. Except now it is daylight and I simply remove my hat, receiving compassionate glances rather than condescending snarls as I hurl into a garden.

So this turned out to be one giant moan. I do, once again, apologise for that. I guess I could claim this as an update of radiotherapy side effects, but really we all know I just felt like bitching. As usual. But writing this post has been helpful. I’ve realised that I probably ought not to cook dinner tonight.