When I first wrote this it was all negative and left me depressed let alone anyone who might read it. So I’ve added the bright moments too.

The surgery I went through on October 27 was major and in fact the worst of the three big HNC surgeries I’ve had in 2009, 2014 and this year. I was lucky to have it because the tumour in my throat was almost inaccessible, I can’t have any more radiation and I’m 75. A big surgery with a thigh flap was the only way to go. Both my forearms, which would have made better flaps, had been used before.

Trying to put my finger on the cause or nature of my discomfort, I don’t want to miss out the moments of comfort. I’ll list them here before doing the bad stuff again.

Second surgery on my inner cheek was almost as big but easier because I didn’t have a tracheotomy. It was still hard. It was February, the hospital was particularly hot and I suffered greatly from thirst. I felt so uncomfortable I told people not to visit as they distracted me from just “getting through”. My youngest son came from England to look after me post surgery but of course under Covid this time he couldn’t even visit. I was in hospital a week, recovered, then had to go back in for a small top up op where I had my two front teeth broken, woke in pain and felt miserable for the rest of my stay. When someone gave me Oxynorm for pain after a few days, the discomfort melted, I had a few more doses but after that I had more comfort and a better attitude.

This time I was in hospital for two weeks but ended up back in the ward after four days because I got an infection in my leg. That led to a two day stay. I’ve been home now for 4 to 5 days and only in the last few days have I been able to shake off the hospital discomfort.

Let’s look at the good things I had going for me:

  • Excellent consultant and team
  • They do morning AND afternoon rounds now so you get extra reassurance.
  • A lot of the team knows me because of my charity work and there was that friendly familiarity
  • The nursing is excellent. It’s very technical with the trache and all my wounds but they could all handle it and they all tried to be kind to this restless patient.
  • I knew the CNSs prior to this and that helped a lot.
  • I had a large single room for the main part of my stay.
  • The Allied Health staff made enjoyable inroads into my days in the second week.
  • I had my son on standby or visiting me or even at one time coming in while I was distressed.
  • When I had Oxynorm for pain it also reduced the horrible discomfort and I could be cheerful for a while. Had many great conversations.

I really dislike the train wreck feeling a person gets after having an all day surgery. Intensive care for the first couple of days is okay. You have one to one care and the full effects of all the drugs are not yet apparent. Once on the ward discomfort and misery sets in. It’s hot and there are tubes everywhere. I even had a central line in my groin. Tracheostomy – no talking. They want you to be mobile of course but you have to gather up your drains and pumps and stuff to take a few steps and this time I must have made some risky manoeuvres (I can remember only one) and the exasperated nurse ordered a “watcher” for me. I thought it was only overnight but no, it was 24/7 and at one stage I had two of them watching my every move – one was a student. I don’t know why it drove me mad but it did and I finally made a forceful point and watchers were sent away. I feel awful to have hurt them but after that I felt a bit of relief from the worst reaches of hell.

Was I in pain? Not a great deal but I felt all over agonising discomfort that meant I had to draw on every atom of strength I had. I counted spots on the ceiling, recited poems to myself, prayed to a god I don’t believe in. This discomfort persisted in the absence of normal pain until a few days ago. Much less than earlier of course.

When they tamped down my pain relief, they gave me Oxynorm which isn’t the strongest pain reliever but in 2014 and this time had a magical effect on my discomfort. Oxynorm seems to separate you a bit from your body. If you’re in pain it helps you observe it painlessly and for this discomfort it just melts it away for a couple of glorious hours. After a while they were reluctant to give it to me because of its addictive properties and the fact I’m already on the maximum dose of sleeping pills. Somehow these two things are related.

I’ve written before how the trache adds to discomfort in so many ways. The warmth of the humidifier in a hot room is awful too. (I’m a very hot patient!) I was also extremely thirsty and spent time constructing a fantasy mountain spring water bottling plant in my mind.

After 7 or 8 days the worst of the big drugs (anaesthesia etc) wears off and one’s head is clearer. Weekends are pretty awful but during the 2nd week there was a lot going on: speech therapists, swallowing, physio, dietitian. This was good but the first major test I had was down in radiology where I had a swallowing or leak test to see if fluids would go down the wrong way; to see if the flap leaked. It was super-traumatic. I was coughing, bleeding from the lips and my gown was all open at the back. I didn’t remember how to tie up a gown until just before I left, incredible for someone who has been in hospital so much. I had to swallow some foul tasting contrast, hold it in my mouth and then swallow – all this in front of an X-Ray screen. It was the first liquid I’d had since the op and there was no way I could hold it in my mouth and it all went down the wrong way when I swallowed.

The staff were dressed in garish “leads” or lead aprons and of course radiology is in the pit of the hospital so I really felt I had descended into a surreal hellish landscape. To top it off none of the orderlies seemed to want to take me back and lying in your hospital bed you feel like a sack of spuds as you linger in the bays waiting for someone to push your bed back.

A week later I had a similar test with staff I knew and it was nowhere near so bad. Not hellish at all. Only a minimal improvement in swallowing, however.

I actually enjoyed the time with the speech therapists and physios. There’s a procedure where the physio does a big suction of the trache and it’s quite a shock to the system. My blood pressure skyrocketed but later I had a speech valve placed on my trache and I could talk which made life less hellish by a long shot. My speech is difficult for me with some letters hard to say now but people seemed to understand and I really don’t care. Just get me well!

After two exquisitely uncomfortable weeks I went home as mentioned before only to somehow dislodge the drain in my thigh, water got in, and an infection ensued. I was back to hospital on the Monday for a checkup up which turned into a 6 plus hour wait in a chair for a CT scan in my usual discomfort which had not gone away in spite of my few days at home. I had to be admitted again, there was no bed … After a long day I was so glad to have a corner of a ward and a bed but after a little while the inability to get comfortable even flat on a bed set in. All went pretty well from there though. No trip to theatre but a bedside procedure to suck the infection out of the wound and to “irrigate” it. They had to poke things into the leg but I didn’t look and one nurse held my hand so I could talk quietly to her while the poking, pushing, suctioning and irrigating went on.

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What is this discomfort? Part of it is back pain and that troublesome left buttock that always hurts on a hospital bed. Part of it seems to be mental. It could be because I don’t know how to really relax my body? I thought it might be caffeine withdrawal but my 2nd tiny surgery in 2014 resulted in it after I had been home. I feel stifled in hospital because there is no fresh air. I found it very difficult to get comfortable enough to hold a book up but with enough Oxynorm I could do it and I finished a difficult book in hospital.

I’ve got a long road to recovery ahead of me but the discomfort left me a few days ago. My back is still weak and aches at times but the overall ghastly feeling has gone or I wouldn’t be able to sit on the sofa with my feet on the coffee table and the laptop on my knees!