Submarines in the harbour

Done it then. The prescribed treatment for my throat cancer and inflamed lymph nodes was three sessions of chemotherapy in Elda and thirty three sessions of radiotherapy in Alicante. Today I had the last session - everything finished. The medics tell me that I'll still feel sick, not be able to eat through my mouth, continue to have skin peeling off my neck, and whatnot, for a month or two yet. My next appointment with the oncologist isn't until 11 November (not at 11am) and the next time to speak to the ear nose and throat people who did the original biopsy isn't until mid December. But, for the moment I won't have to get up at 5.30 am to be ready for the ambulance to take me to Alicante every weekday and nobody is going to poison me with vile chemicals or bombard me with particles for a while.

Of course nobody has suggested what will happen if it hasn't worked. I don't know whether they wade in with more of the same or if they give it up as a lost game and just do the occasional round of chemo to hold it all at bay for as long as possible. Along the way I have lost a fair bit of weight and one of the consequences of that was that they needed to make me another full face mask to use for targeting the x-rays (or whatever rays they bombard me with). That meant a second CAT scan and the doctor in Alicante commented today, that when they had done that second scan, the swelling in my lymph nodes had subsided significantly - I think that was a sort of snippet of good news. 

I don't feel well. I'm not really in such a bad way though I suspect I smell badly. More than anything I feel a bit sorry for myself. I feel cold even when it obviously isn't. I haven't drunk or eaten anything for a whole month now. In fact, at the cinema on Tuesday evening there was an advert for Coca Cola. I'm not a  huge Coke fan, it's OK, but, as I was watching that advert I'd swear my tongue was hanging out and I could imagine the taste. I do keep trying to eat or drink. I have a spoonful of yogurt or a mouthful of tea and instead of the expected, pleasant taste I find myself spitting out the acrid fluids and spending the next 10 minutes doing a Barney Rubble impersonationation - urgh, urgh. I'm told to expect another month or two feeding through the stomach tube which often makes me vomit or if it doesn't actually make me vomit it makes me wretch and cough and spit and curse the creation of humankind. 

Sleeping is good except that the downside is the state of my mouth when I awake. I've learned that my best bet is to do nothing. No water to lubricate my throat, no brushing my teeth, no mouthwash. Just wait for an hour or so until my mouth is a sort of acceptable cauldron of terrible tastes and then have a go with the brushing, gargling etc. If I don't throw up in the process then that's a definite win. And, just to finish off my neck has started to peel. If you've always lived with factor 50 sun protection you won't understand this but the old style holiday suntan was to peg yourself out, when you got your fortnight off, until your skin turned bright red. You'd try to ameliorate the pain with camomile lotion (long before after sun treatments) but, if you'd overdone it you'd pay with blisters and boils on your skin full of liquid. As those burst your skin would peel off leaving various coloured blotches. The radio has done something similar but the effects have only really shown up big time in the last couple of days.

And that's just me. Living alongside someone who goes to bed at 10 pm, who hasn't done a stroke in the garden or been shopping or done any of the other tens and tens of household upkeep and maintenance jobs for six or seven weeks and who doesn't want to go to get a drink or a meal or to a fiesta must be a little wearing to say the least for my long suffering partner.

Eat up your gruel

I wasn't going to do this again. Not for a while. In fact I have a very slight blog ready to go about ambulances, but a number of people have asked or sent me messages so, I'll do my best to make it short and sweet. Yet another update on me and throat cancer.

Nothing has changed in the treatment stakes. I've now done 25 of the 33 sessions of radiotherapy. An ambulance collects me from home and deposits me back here a few hours later. It can be as few as four hours from start to finish and as many as six and a half. The treatment takes about twenty minutes and the rest of it is waiting or travelling time and the occasional medical Q&A. Yesterday the ambulance from Alicante brought me home via Biar. Locals can gasp and chortle. 

I've done two of the three chemotherapy sessions. The third and, hopefully, final session is on Monday 14th provided that there is no medical reason for not going ahead - apparently things like anaemia, lack of platelets, reduced kidney function etc., can make the process unsafe which is why I have to get a blood test a few days before to check that I'm up to it.

This morning I got a bit of a pep talk from the nurse at the radiotherapy unit. She seems to be the person charged with keeping an eye on me. Her main concern is that I am losing weight. In fact my face had thinned out so much that the original "death mask" that they use to strap me to the table and to target the rays, was no longer up to the job. I had to have a new mask made and a new CAT scan done so they could pinpoint the tumours in relation to the new mask. We had a bit of a chat about this weight loss. As I pointed out I'm still hardly skinny - teetering on the boundary between overweight and obese using that Body Mass Index system. The nurse guffawed when I told her that. She checked. She seemed genuinely surprised when I was right. I explained, in Spanish, about the English word moobs. It didn't stop her though. She wants me to "eat" more. Now I haven't actually eaten anything since 19 September. Since then I have been connecting a squelchy plastic bag full of some all in one food supplement to the tube that comes out of my stomach. The bag is hung on high and it just drip, drip, drips into my stomach. the original plan was for three feeds a day, 600 calories a go. I've now been told to go for four feeds a day. It's a laborious process and the food stinks but I'll do what I can.

Actually saying the food stinks is something else. Cooking food, kitchen waste bins, the porridge residue in the plug hole etc., smell absolutely disgusting. Maggie tells me that things are no more smelly than normal though she says I have fetid breath. I'm not surprised. Nowadays I go to bed early, alone, in the guest room. I get to sleep easily enough but however long I stay asleep, till the first time I wake up, is usually the major part of the sleep I'm going to get. From there on in it's just tossing, turning and maybe a bit of snoozing. When I wake up, at say 3am, my mouth is lined with mixtures of phlegm, slime, and blood or snot tinted gobs of something horrible. Then again, someone has lined my mouth with sawdust. So I'm choking on dust and something as slimy as that Creature from the Black Lagoon at the same time. I can try to brush and mouthwash my mouth back into action but, if any of the liquids, including the "medical" mouthwash which, if it were sold in a standard size whisky bottle, would come in at 85€, touches the back of my throat I am wont to retch and throw up on the yellowy liquid I put into my stomach. It is a singularly unpleasant experience. 

The radiotherapy people are adamant that the majority of my problems are being caused by the whole body treatment which is chemotherapy. They accept that the radiotherapy has reddened my skin caused quite a lot of exfoliation but not much else. And that was the point of the pep talk from the nurse to tell me that with my only real complaints being my throat, a fair amount of throwing up with a bit of side grumbling about the ringing in my ears and how the lowering of my blood pressure makes me wobble, literally, from time to time, I was getting away with this almost consequence free so far. So, my lad, buck your ideas up and make sure you lose no more weight.

"Yes, Lourdes", was all of my reply.

Something for the Palace Gates

My sister said that my nephew reads my blogs. He's just about to set off to Colorado because his new wife has a job there. So here's one to send him and her on their way.

Just for those who haven't been keeping up, I have throat cancer. The Spanish healthcare system is looking after me. However, because the Region of Valencia is being run by a very right-wing local government, one of the insidious little side effects seems to be that lots of patients are being passed for care in the private sector. I suppose they natter as they play golf together. Of course, I may be completely wrong. It may be because the private hospitals have more capacity or because they're doing lots of two-for-one offers.

The private hospital is for the radiotherapy. The thing where they strap me to a table and direct particle beams at the cancer in my throat and neck. The idea is that the rays damage the bad cancer cells but that my other cells are strong enough to fight back. Or at least that's how I visualise it. I could well be wrong.

The public hospital, the one in Elda, is where I talk to an oncologist who has decided on the treatment, and it's also where I have to go for three sessions of chemotherapy. Chemo involves using a drip to put some sort of poison into my veins. Again, I understand that the idea is that they kill bad and good cells alike, but the good cells can recover and the bad ones can't. I haven't Googled any of it. I'm just trying to do as I'm told.

The people in the radio place are perfectly nice, but the chemo people on the Day Hospital do their best to be incredibly "up". They say nice things to everyone. Very co-operative, odd sense of humour and very nice hair were my piropos for today.

I'm just an outpatient, I don't have to stay in hospital long. The chemo takes longer; it was about three hours today and four hours last time. The radiotherapy takes no time at all. For purely logistical reasons, I drove myself to Alicante this morning. I got there before 9 am and I was away to get to Elda before 10 am, and my underground parking ticket only cost 55 cents.

Normally an ambulance comes and gets me. For most of we patients, it's much more minibus than ambulance, with four seats in the back with space for a wheelchair and someone on a stretcher. There are the two seats in the front too. Sometimes it's a Magical Mystery tour with a pickup in Monóvar, Elda, Novelda, Monforte etc., and sometimes it's been a more or less straight run. Last week I had two trips that were more like taxi rides. One or no stops. Other times the journey can take two or three hours each way with lots of stops. I very seldom travel with the same people. I have to get up before six to be ready for the ambulance.

People who see me say I look well. That's because, so far, my hair hasn't fallen out and the skin hasn't stretched, leaving me with cadaverous sunken cheeks and a sallow complexion. My mouth is a total disaster area. It's lined with all sorts of foul-tasting mucus, and I often think I might throw up. I've given up eating by mouth simply because everything tastes disgusting. I drink water and tea (which tastes worse than the stuff they give you in bars) and then I drip feed some stuff like baby gruel or Complan into the tube that comes out of my stomach. My ears are very loud too, and I get tired even thinking about doing the weeding, but I'm still driving, still doing light jobs like cleaning the toilets, changing beds and doing laundry. Maggie, though, as well as the stress of my being ill, is taking an unfair share of the household work, particularly as I've stopped shopping and cooking as well as the garden.

So, I think that's it. The wedding plans are moving slowly as Maggie waits for documentation that will start the mad dash to get the rest. I'm still planning to book up one of the Imserso Pensioner's holidays tomorrow, and I have another blog nearly ready to go. It's taking a while because it's a bit weak. This one took the time to type it. Very fast.

The photo is from a local paper in 2020 but it is Elda

So how're you doing?

I left the last blog when I had done two or three sessions of radiotherapy down in Alicante at the private Perpetuo Socorro hospital. The chemotherapy in Elda still hadn't started because I am, apparently, veinless, and they couldn't find a way to get their chemicals into my blood.

On Thursday of last week, they sorted that out by installing more permanent access to my bloodstream via a probe that leads to bigger, better veins in my chest. The same day, they spent four hours, first pumping saline into me, to make sure I was hydrated, and then pumping in some chemicals which, in my layman's understanding, are designed to be powerful enough to kill off nasty cancerous cells but not quite violent enough to kill me.

It's all a bit of a faff. Lots of the days have been exceptions for one reason or another, but the process is something like this.

I am scheduled for 33 sessions of radiotherapy. There is one session on each working day. I did number five today, so by my reckoning, that will take me through till mid-October. The radiotherapy directs X-rays, gamma rays, high-energy electrons, or heavy particles (and I have no idea which) at the specific area where the throat cancer is. I wait in a pleasant enough waiting area with free coffee and Kiss FM radio until they call me in. I take off my shirt, and they strap me onto a table with a mask over my face to help with targeting and to keep me from squirming around. It's not horrid but it's not something I'd choose to do for fun—not being a Tory MP. It doesn't hurt; there is no particular sensation of heat or anything, and it leaves no marks or redness. It takes fewer than twenty minutes from shirt off to shirt back on. I am told that from about the tenth session it will close up my throat, making it difficult for me to eat or drink, which is why, a couple of weeks ago now, they put a plastic tube directly into my stomach.

The chemo is done in a single session during the day. There's no overnight stay in Elda hospital. The place is a suite of recliner-type couches, a couple of big armchair-type chairs, and a couple of beds. Medics in purple pyjamas are here, there, and everywhere. They try to keep it all very jolly, all first names and a lot of laughing. Usually, people are given a bit of a choice as to which they prefer between bed, chair, or recliner, but the basic idea is that you get comfy, and then they hook you up to drips that first hydrate you and then do the poisoning of the cancer cells—different people get different concoctions. I think I have two more sessions to go, at least in the first phase. Next time around, I have to get a blood test a couple of days before they do the chemo session, and I think that also involves a consult with the oncologist.

So, neither of the actual treatments is particularly unpleasant, and both places are friendly and as un-grim as they can be. The problems come with what they do to you. And what the treatments do to people depends on what you're being assailed with and how you react. Currently, my effects are a very, very loud ringing in my ears, which makes me almost deaf in noisy situations. Most things taste very different and I've been unable to eat lots of stuff simply because it tastes horrid. My head aches most of the time, my mouth is lined with fuzzy felt, and there's a general feeling a bit like mild pins and needles throughout my entire body. My guts spend most of the time rumbling and gurgling, and I go from rushing to the toilet to wishing I could. I'm supposed to keep hydrated, which, apparently, means drinking water. Especially at night, that has a very unsettling effect on my bathroom habits and means that I'm not sleeping very well at all. The list of possible things to come—from skin eruptions to vomiting to total deafness—goes on for nearly 20 pages of A4. Going bald only gets a single phrase.

There are also a number of inconveniences. The port sticking out of my arm hurts a little all the time and has to be kept dry in the shower which makes for fun. I mentioned the feeding tube too. That still gives my guts an occasional twist so that I wince, but it's also a constant, unpleasant, presence. The feeding tube has to be redressed every day and washed through with clean water. At the moment I do that after I've showered. When my throat closes up, I will have to use that tube to eat. The method involves a squishy plastic bag loaded with some liquid-type mush which drips through the tube directly into my stomach. The feeding will take 45 minutes, and the tube will need to be cleaned and redressed after every feed. They also want me to push water through the tube twice a day. I reckon the feeding and dressing will take over three hours per day.

Combine that tube feeding with the ambulance. At the moment, an ambulance comes and collects me at 8 am every morning—a routine that has to be changed to get the blood sample done before a chemo session, and a routine that will have to be amended when the chemo is on the same day. Ringing the ambulance people is not one of my favourite tasks because it always gets complicated—an informal Spanish test. It takes me a while to get going in the morning as it is. When the time comes that I need to feed myself through the tube, I reckon I'm going to have to get up at 5 am every day to catch the ambulance, and it'll bring me home a bit before 2 pm. That's a lot of faff for a twenty-minute session.

So, so far, nothing terrible has really happened. I felt very sorry for myself over the weekend after the first chemo, but I seem to have bucked up today. I suppose too that even if everything goes to plan, if the treatments work, it's not going to be all over in a few months. There'll be tests and check-ups and procedures to remove ports and tubes and so on for months, and probably years, to come.

I'm not going to have many other experiences to blog about for quite a while, but people do keep asking.

And so it begins

So, we left the story with me in hospital, being fed on gruel and camomile tea, having had a stomach tube fitted. The hospital kicked me loose on Monday with only two scheduled appointments for the week at that time: one with a nutritionist and the other with a cancer doctor, an oncologist—both in Elda. Because not everyone has the advantage of living in Culebrón, I should say that our local health centre in Pinoso (5 km away) is linked to Elda Hospital (25 km away), but sometimes, for specialist services, patients are sent all over the place. The hospital I'm going to in Alicante for the radiotherapy, Perpetuo Socorro, is a private hospital about 55 km from home.

The nutritionist was a bit of a hoot. She gave us a box with 30 tubes to connect my stomach feeding tube to a pouch full of a Complan type food. That box was bulky but light. She also gave me a scrip for the feeding pouches, and the bloke in the chemist offered me a sack trolley to take those to the car. He also showed me how much they would have cost but for the health system—€768.

The next stop, with the oncologist in Elda, was make or break. She was subbing for my doctor, who's off on holiday. As she shuffled papers, when she wasn't quite sure what sort of cancer it was, etc., I rather cut across her and asked the one important question: has it spread? Is there metastásis/metastases? If the answer were yes, there would be no radiotherapy the following week; if the answer were yes, the €768 worth of sloppy food and the feeding tube were all a waste of time. If the answer were yes, then death was around the corner, and all the clinicians could do was to hold it back a bit. The answer was no. Relief a go go.

So now all that remained was to get started on the radiotherapy in Alicante and the chemotherapy in Elda. There were lots of criss-crossed phone calls, quite a lot of them taken as I drove across windswept Teruel Province in the car. The private hospital's appointments don't show up on the state system calendar that is used by the local health centre, the hospital in Elda, or the ambulance service, who I will be using to transport me up and down the road to Alicante. Appointments were made and unmade, but in the end, we had times for the radiotherapy, and when that was done, I was told to simply turn up in the chemotherapy unit at Alicante hospital, and they would get me started on intravenous chemicals when I arrived.

The radiotherapy was easy enough, at least the first time. They strapped me to the bed wearing a big fishnet design facemask, played soothing plinkety-plonk piano music backed up with tweeting birdsong while a big Space 1999 thing blasted me with Flash Gordon-type death rays. I didn't feel a thing. They have promised the pain for later.

I turned up at chemotherapy in Elda. We were instantly on first-name terms. They set about cabling me up and couldn't find a vein to get one of the needles in to direct the chemicals into my bloodstream. They tried with different people, people who do this every single day of their working week, and they tried five times without success. Eventually, two very pleasant blokes turned up with one of those ultrasound scanners—jelly on belly, ah, it's a boy—things. They're called ecografías here, so don't be surprised if I say eco. With that, they were able to see the veins in my arms and the needles as they were introduced. The veins collapsed the first twice, but it was third time lucky—or so they thought.

They hooked me up to some saline; again, I may say suero, but I didn't know. I thought it was the cancer-combating chemicals. My arm started to hurt; I was a bit surprised—drips are usually painless. After maybe twenty minutes, it was hurting a lot, and when I stroked my arm, I realised it was swollen. I'd sort of associated pain and nasty potions. In fact the vein had collapsed, and the saline was dribbling into my arm turning it into some sort of human sausage. A nurse squeezed some of it out, but six hours later sitting at the computer, there is still a steady drip of saline from my arm.

I'm going to have to reorganise the ambulances so that on Thursday I drive myself to Alicante for the radio and then on to Elda to get something called a Picc Port fitted, which is a sort of more permanent entry to plumb me into the drips. And that's where we rest.

____________________________________________

Just a couple of related things. Thank you to the tens and tens of people who have offered good wishes and practical help. I apologise for not always responding. The other thing is about the delay in seeing me. I have to say that I see nothing unreasonable about the delay outside the fact that the health service doesn't have enough capacity, probably because paying taxes is not a popular thing. I haven't come across lazy or indolent staff; I don't think anyone has screwed up or let me down anywhere. The initial referral took a long time, but I told the GP about a sore throat. She couldn't really refer everyone who went to her with a sore throat to a specialist every single time. The people who got to see the specialist in front of me presumably got there because their GPs saw something more urgent or because they'd waited their turn and got to the head of the queue as they should, as I did. I would be very unhappy if I were the queue jumper denying treatment to someone else.

Anyway, I'm well and truly on the treatment conveyor belt now, so fingers crossed and on to whatever the next thing is. Expect more blogs.

Buenos días, this is Elda Hospital

Last June, that’s June 2023, I went to the doctor and said that I had the sensation of a lump in my throat. She felt around a bit, said it was probably nothing, but asked for a consult with a specialist from Ear, Nose, and Throat. In Spanish, that’s otorrinolaringología, and I’ve already got into the habit of saying otorrino, so that’s what I’ll probably use from now on. The request for the consult was ordinary priority.

It took nearly a year for the otorrino to see me - May 28th this year, in fact. He shoved a camera up my nose and down my throat and recognized the potential for throat cancer straight away. He dropped some pretty broad hints to me as well. Doctors though, very seldom, give bad news until their experience is backed up with test results. He set the ball in motion. He ordered an MRI scan, a resonancia, and things started to move. 

For the resonancia, the thing where you lie down in a big tube that makes a lot of noise while you try to stay stock still, the state system bumped me down to the IMED private hospital to speed up the process. That happened on June 26th, and I went back to the otorrino on July 18th. He had the results from the resonancia then and he showed me the images - lots of little tadpoles and shapes moving around on a screen - but he didn’t have the technical report to go with the images. Even reportless he knew what he was looking at. He told me that the otorrino department had some pre booked slots in the operating theatre for biopsies and that he would get the biopsy done on July 31st. Before then, I had to go to the specialist centre in Elda for blood tests, an ECG to check my heart and a couple of x-rays. In fact he booked those simple tests in for the next day, the 19th. A few days later, on the 23rd, I was back with the monocolour pyjama people for pre-op stuff, to talk to the anaesthetist. She told me that my blood pressure was high - dangerously high. I started to worry that my brain might spring a leak before the cancer got me. The blood pressure problem opened up a whole new swathe of appointments at the local health centre which have been running alongside the cancer stuff. Now I take blood pressure tablets.

The biopsy was on July 31st at Elda hospital. Despite being a small operation it was done under general anaesthetic. I had to take off all my clothes, put on some sort of over-feet covering made from a blue plastic sackcloth and a sort of shower cap as well - also blue. I was expecting one of those gowns that are open at the back but instead they gave me some sort of plastic underpants to wear - maroon coloured I think. Then I waited, for what seemed quite a while, my modesty and saggy belly, covered by a white sheet. In the next bay a young person screamed bloody murder. Eventually I was wheeled to some operating theatre. They put a mask over my face and the next thing I knew, Maggie was by my bedside, and I was back where I’d started. They said I could go home. I chose to get dressed first.

The next day, I met the otorrino again. He explained that the meeting had nothing to do with the biopsy. It was simply that he was going on holiday the next day and he had just got the resonancia report which showed some sort of abnormal growth, not only at the base of my tongue but also in a lymph node. It was time to pass me across to oncology - the cancer people. The unsaid became said. He stressed that it was still possible the biopsy might show the growth to be benign, but his experience told him otherwise, and that if he didn’t set things in motion before he went on holiday, it would delay things by weeks.

I went to oncology on August 14th. The doctor seemed like a solid sort of bloke. He made it very clear that I have a malignant tumor at the base of my tongue, at the entrance to my throat, with some extension into the lymph node on one side. He outlined a treatment using radiotherapy and chemotherapy. He described the horrors that this would entail - the vomiting, the closing up of my throat, my hair falling out, etc. He told me that I would be unable to eat, and so they would put a catheter in my stomach so I could be fed directly. He told me how I would lose hearing and may well go deaf. He managed to explain, without brutality, that small things like mouth infections and particularly infection around the catheter could be life threatening. The best bit was yet to come though. He explained that the treatment, with radiotherapy and chemotherapy, was about a potential cure but there was a corollary to that. If the cancer had spread, then the radiotherapy would be pointless, and instead of looking for a cure, they would simply be trying to hold back the time that I would die.

And that’s about where we are. I’m going to talk to the radiotherapy people about their treatment, which is going to be every working day for the whole of September. I also have to speak to a dietician, presumably to talk about how to keep me from starving when I can’t eat by putting things in my mouth. I’m also waiting for the date for the TAC, CAT scan in English, the test that will show whether there is metastasis, whether the cancer has spread to my lungs or bones for instance. I’ve talked to the ambulance service about taking me down to Alicante every day, and I’ve told a few people how this is all panning out. Now I’m telling anyone who reads this blog.

At the moment, it’s all unreal, of course. I feel no worse today than before I first mentioned this to a doctor thirteen or fourteen months ago. They have not yet attached the leeches, poured poisonous chemicals into my veins, or zapped me with lethal death rays. All that’s to come. I can’t actually imagine the horror of it all. I can't imagine how this is affecting Maggie but I did write a short email to the town hall asking what the process is for getting married. The grim reaper will reap but maybe the taxman can be held at bay for a while. And still, there is the possibility that the TAC will show that the reasons I’ve been hobbling and grunting when I bend my arm too much is because I have cancer in my bones. Then the radiotherapy will be pointless, and I’ll be on a more certain and quicker road to the death that awaits us all - our little life Is rounded with a sleep.

Not that it's exactly a plus, but I am getting to see lots of medical installations and talking a lot of Spanish, both on the phone and in person. Although I suspect that my language learning may soon be terminally truncated by forces beyond my control.