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.

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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.