The many tests of a patient waiting in patience

A Week to Fathom

What a weekend that was, or rather, let us consider the full week, because the thought of all that transpired is hard enough to fathom.

Fresh from the good news of my PSA having fallen to its lowest level, buoying my confidence in the radiotherapy for prostate cancer, I was having chest pains that led to my attending A&E first thing on Monday.

That was one unplanned visit to the hospital. The result was reassuring; it was nothing serious, just musculoskeletal pain that some bed rest could help.

Good News, Then Distress

Friday was the main day scheduled for my biannual monitoring at the Christie Hospital. Going there never ceases to be as impactful as it is critical to saving lives. It is a visit to a renowned cancer hospital to review my PSA result and discuss the attendant issues from radiotherapy.

That went well, so I stopped by Nando's for a meal and used the opportunity to call Brian. Halfway through my meal, after our call had ended, I had a choking episode. I won’t suggest this is a longer-term side effect of radiotherapy, as dysphagia, and I have not considered if it could have exacerbated it; I’ve had choking episodes going back decades.

Thankfully, I had enough napkins to contain the relief in bringing it all back up. Not a beautiful sight, and no one noticed I was in distress either. I cleaned up in the conveniences and returned home to lie down.

Saturday Takes a Turn

Whilst that should have resolved things, as I do usually have episodes of choking on food, this one was different. Some cereal before midnight did not go down, likely due to food impaction, an obstruction, or inflammation in my throat. I threw up in the toilet and decided to postpone my pills for a few hours.

The pills did eventually go down, and I had a lie-in for most of Saturday into the afternoon.

Getting up, I made a cup of tea. I thought I had drunk the full mug, but there was pressure in my throat and quite a bit of discomfort. I had to throw up again.

The tea came up with some mucous-like substance that fell to the bottom of the toilet bowl. That was concerning. I was about to return to A&E for another ailment.

A Night in A&E

Calling an Uber, I made it to the hospital soon enough, though as I alighted, I was sick in the bushes before being triaged. From then on, I was vomiting a thickened, mucous-like substance every thirty minutes or so into a sick bowl.

Just about two hours after arrival, I saw a doctor. She gave me a drink of water, which seemed to stay down. I have not vomited after that. I was then referred for a possible endoscopy and left in the Emergency Room for two hours.

Then another doctor called me in for review. We agreed on an experiment: I would have a sandwich and a drink, and if that stayed down, I was to be discharged for further outpatient review. If I could not keep the food down, it would mean hospital admission, nil by mouth, and a possible endoscopy on Monday to identify the obstruction.

The food stayed down, but it was left waiting for a few hours before I received an email notification; an after-visit message; it was sent 30 minutes earlier. Apparently, I had been discharged, and no one had bothered to inform me. I left the hospital over eight hours after arriving. It was almost 2:00 AM.

The Weight of Being Alone

I appreciate that these matters take time. Anyone attending A&E is busy juggling the precarity of their situation that brought them to the hospital with the need to keep others informed, especially if they are alone in that predicament, and that is just the way it is.

I have every reason to want a better situation, to be in a hospital with someone. Everyone else seemed to have someone with them, but as one person, you are a container of the reflexes of concern, anxiety, or even panic of others about you. You must wonder whether it is necessary to inform anyone during the crisis or only after it has passed.

There is an emotional toll involved in the desire for information and details. I have had calls whilst a doctor's stethoscope was feeling around my body, calls I have had to ignore.

My going to the hospital should be part of accepting that the right decision has been made and that I am in good hands. Not much can be helped beyond everyone holding their nerve, thinking good thoughts, and praying for the best outcomes.

Everything takes time, and the patient patiently waiting for answers and assurances, first for themselves before finding the form of words for dissemination to others who duly need to be informed, is probably the most impacted by it all.

A Google NotebookLM AI Podcast on this blog

Battling with my vulnerabilities to pain

The eye of pain

Quietly, I have been going about things as if it did not matter. I’ve been in pain for the past few hours, my right eyeball giving me such discomfort, and I am no wiser as to why.

I have placed a cold pad over it to ease the pain, and I would have taken painkillers if I was not already feeling so nauseous.

I cannot attribute anything to this uncomfortable feeling, though it does feel like I am coming down with something I do not want to yield to.

No glory in emesis

Thrice, I have been bent over the toilet bowl, ready for emesis, salivating a lot the first two times and then finally evacuating my guts the third time.

The horrid feeling is that if you are vomiting on an empty stomach, you convulse and retch, groan and contort without much to show for it. Nasty does not describe the feeling.

When the retching stopped, I poured a bowl of cold water over my head and appeared to calm down. The eyeball pain is still there, but I probably should just take a rest.

Have me in your thoughts. Good night!

Boldly tell your doctor everything

I tell it all now

There probably is a drug for every type of condition if you can articulate to your doctor exactly how you feel and your doctor is aware of that condition, to offer the best advice or medication to help with that situation.

During the time of my illness and the process of recuperation, I have learnt to be more open about the things I observe about my body, my feelings, my reactions and my comfort to my doctors; there is no time to be embarrassed about having to drop your pants and show them things.

With this kind of information, my doctors have sympathetically heard me and sometimes adapted or modified my medicine to help me get better and feel better about the medication I use.

Healing the pain

The two areas where I have benefited most from the management of my medication in relation to how I feel have been in pain relief and sickness manifested as vomiting.

I think by now we have gotten the reduction of pain down to just using an epidermal patch, which I place on the skin of my belly that releases 25 micrograms per hour of Fentanyl [1] into my body fat over 72 hours.

This required a little adaptation; the patch itself can easily come off, so my neighbourhood nurse gave me sheets of transparent plasters I could place over the patch to keep it fully adhered to my body – that advice came because I freely offered that information of discomfort, not knowing there was an easy remedy to the situation.

Stopping the throw-ups

As for vomiting, that has been brought on by all sorts of things, it was first with the morphine in the hospital, I was taken off that and given pills to handle the pain instead. A change in my medication brought on more vomiting, so I had to take suppositories to reduce the nauseating effects. In fact, the suppositories are still part of my daily medication as an antiemetic.

After my first chemotherapy, I had read up on the side effects and asked if I would have the antiemetic pills for that particular chemotherapy. I was given something similar, but by my fifth chemotherapy, it was not as efficacious as before. I was so horribly sick for days, unable to keep food down or take my medication.

So, at my last meeting with the oncologist, I mentioned this. It was important because it was based on my saying I was tolerating the chemotherapy well, that my dosage was increased from the initial 6 to 8 sessions, and no,w after my fifth, it looked like I was not managing it that well.

What the doctor ordered

The oncologist prescribed Emend aprepiant [2], which, with the other anti-emetic medication I already use, helps prevent chemotherapy-induced nausea and vomiting (CINV). It consists of three pills, the first large dose to be taken an hour before chemotherapy and for the two days afterwards.

Apparently, it blocks the vomiting signals from the brain rather than from the stomach, and I could almost say I feel the battle between my brain and stomach, where I know I would not vomit even though there seems to be every inclination to want to vomit – the wonderful power of chemicals in the body.

Looking through the side effects of using Emend is interesting because it literally has all the ones we know that chemotherapy sometimes causes, like hair loss, loss of appetite, itching and so on, but I must say, stopping the vomiting is probably the better trade-off in the circumstances.

As for drowsiness, well, I have been doing a good deal of sleeping all day, a good few of the pills do cause drowsiness in any case, but Emend is just what the doctor ordered – don’t be afraid to tell your doctor all the truth, it always helps.

Sources

[1] Fentanyl - From Wikipedia, the free encyclopedia

[2] Emend aprepiant

Seeing hospital meals again

Scoffing at utility

It might be congenital but that is looking for excuses, my mother when she was in Europe in the 1960s scoffed at the idea of the specialisation of chiropody but God knows today that having a chiropodist look at my feet would be of greater succouring benefit than a mother mopping her sick child’s brow.

And so, did one not a time scoff at the idea of being a dietician viewing it from the perspective of those weight loss diets or regimes that seem to plasticine-mould you into body beautiful that Michelangelo’s Mona Lisa or David would jump out of their eternal states of paint and sculpt in mortal envy.

The glories of hospital food

You learn, I had a visit from the hospital dietician the other day because it appeared I was not eating enough of my food.

The food choices are to reach the goal of either more energy or more bulk, that is where the sophistication ends, she did agree that hospital food was hardly haute cuisine, well, if you thought Michelin and hospital food, it would not be about stars but probably the chewiness of rubber in their tyres, OK, maybe that is a bit extreme.

No voice in choice

Anyway for all the integration that might be required of immigrants, losing your indigenous cuisine is probably the very last thing you will ever give up. There is a world of difference between Dutch cuisine and Yoruba food from the South-West of Nigeria, even so, there is enough of a difference between English and Dutch cuisines, and I seem to prefer those to the Dutch.

The presentation is a collage of dull colours that would hardly rival masterpieces of art out a kindergarten class, finger-painting and all.

A vulture pause will do

So we built round these courses of palatable disregard but not before I was reminded of the nursery that literally forbade eating between meals, these become lessons of life well learnt from childhood only to be debunked by professionals.

So Hiliare Belloc penned this rhyme for children and whoever had this at school was definitely scarred for breaching that rule.

The Vulture eats between his meals. // And that's the reason why. // He very, very rarely feels. // As well as you and I.

His eye is dull, his head is bald, // His neck is growing thinner. // Oh! what a lesson for us all // To only eat at dinner!

And you wonder why what is a coffee break should really be aptly named a Vulture Pause; nursery rhymes could be so unforgiving and graphic.

So, it is cornflakes rather than breads for breakfast, fruit salads in between and high-energy milk shakes for lates.

Sick as a dog

Now what I cannot understand is why over 6 hours ago I felt nauseated but the manifestation of seeing my food again took that long and by the time I finished this blog, I had been sick thrice already. Don't worry, I am sick-bag trained, no mess.

Is there a dietician in the house?