Cautiously optimistic

Just a quick update on my throat cancer. For new readers, during the summer, I got to see an otorrino (Ear Nose and Throat specialist) and, after a few tests he said I had a throat cancer. He passed me to an oncólogo (Cancer specialist). They ordered up a few tests, decided that the cancer was just in my throat and lymph nodes and set me up for a course of 33 sessions of radiotherapy and three of chemotherapy. The radio sessions were in Alicante and the ambulance service took me there for most of the sessions. The chemo was in Elda. Along the way I had a picc port installed in my arm so they could take blood from my veins and put other liquids in. They also put in a PEG tube so I could put "milk shake" type food directly into my stomach when my throat became too inflamed to eat through my mouth. There have been a couple of snags along the way; I ended up on a hospital ward for three or four days because I kept throwing up and the dehydration was damaging my kidneys, but, generally it's been plain sailing.

The last of the sessions of radio or chemo was on 19 October so going on two months now. In the past few days I have seen the oncólogo, the otorrino, nurses in the chemotherapy day centre and a nutritionist. 

The oncólogo didn't really have much to say, but he wasn't worried about me either. He had a good feel of my neck and said he was pretty sure the lymph nodes were no longer swollen. He's going to order a CAT scan and I'm back to see him in about a month. He did say they could remove the picc port from my arm which was taken out by the perpetually cheerful nurses in the chemo day centre. They were also very nice about my Spanish. With the picc gone I was able to have a shower this morning without a plastic sleeve on my arm to protect the dressing for the first time since the beginning of September

The nutritionist said it was about time that I started to eat solid food instead of just feeding through my stomach. She only actually wants me to eat things like rice pudding, custard, creme caramel and the like. I do as I'm told and I've eaten a couple of those things today. They taste odd because my mouth is still slimy but I ate them alright.

The otorrino put his camera up my nose and down my throat and said "I don't see the lesion today that I saw in the Summer". He said my throat was still inflamed from the radio, which I think was to add a bit of caution to his earlier comment. He doesn't want to see me again till March.

And the problems I still have, as an effect from the treatments, are that my mouth is either bone dry or covered in horrible, foul tasting mucus nearly all the time, that I get tired quickly and that I feel dizzy quite often. Not exactly serious concerns. So, not so bad at all.

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.