Six Days of Hospitalisation Hell

I have just endured the most shockingly brutal experience of my journey so far, at the hands of Royal Glamorgan Hospital, Talbot Green. I am struggling to put down in words the week I’ve just been through. I will attempt to do it in a diary format as it’s easier to see how the days unfold. I had my third cycle of chemo on Thursday 19th. The dose I was given was a 20% stronger dose than last time so I felt pretty wiped out pretty quickly.

Saturday April 21st

I woke up in the morning feeling unwell. My stomach tube was playing up and discharging at an abnormal rate. It looked infected. I didn’t want to risk putting any food down the tube. My wife rang Velindre Cancer Centre up to ask for advice about what to do with some of the post-chemo medicine which needed to be taken with food. My wife explained what had happened with the stomach PEG and Velindre contacted the on call GP. They wanted me to be checked over as I was already taking antibiotics for an infection in the PEG. The GP came, did a few spot checks and came to the conclusion that, for safety’s sake, I should be admitted to hospital as there may be an infection that the antibiotics taken to date weren’t dealing with. My heart stopped. These days the mere word hospital alerts all my defense systems and I instinctively put up a barrier that stops me being admitted. “There’s no way I’m going into hospital” I said. After what seemed like hours of cajoling by the GP he finally persuaded me that hospital would be the best place for me. I went under duress and arrived early afternoon.

I was admitted to the Medical Assessment Unit, who were apparently expecting me but put someone from A&E into my trolley bed. I had to sit in chairs for around half an hour until a bay and bed were free for me. I had my blood pressure checked which was OK. I was then hooked up to various machines; a venflon was inserted in my arm. These get more difficult as my veins are ruined from endless chemo and I find the whole process very distressing. I was put on fluids and monitored. After a few hours I was told I was being transferred to Ward 6. They would do their best to get me a side room as I was on chemo and my white cell count was compromised. This wasn’t to be though. I was placed in a general bay with five other people. This was the beginning of the road to hell. I slept for approximately two hours. Cathy had been in touch with my ENT consultant who was not on call that weekend and one of his team was sent to keep a check on my progress in the assessment unit.

Sunday April 22nd

They decided the only way to treat the infection was by stopping all food intake and gave me some very strong antibiotics via an IV line. I was already beginning to feel weak from lack of nutrition and the chemo beginning to hit home. By the evening my venflon failed in my arm and another was inserted in my left hand by my knuckles. It was all bandaged up so I had no hand movement at all. I fell into sleep when I could but was constantly woken up with machines and lights going on and off.

Monday April 23rd

My third day without food was beginning to take its toll. A combination of sleep and food shortage was making me irritable, washed out and very tired. There was no sign of the infection going. I was told today the swab of the site was clear and there was no infection present. I didn’t understand. Why was I in hospital in that case? I felt confused and depressed about the whole situation and wanted to go home. A patient left the ward and another was admitted. I felt envious. I wished it was me. I sleep poorly with so many thoughts running through my head. Cathy rang our hospital key worker and left a message asking if she could arrange for someone from ENT to come and see me and to try and get me moved to a side room as I was at such a critical point of my chemo cycle.

Tuesday April 24th

Was very tired this morning. Lack of sleep, food and constant movement in the ward was making me ill. The chemo was taking its toll and there was no sign of the stomach tube healing. I’ve was told that even though the swab was clear, my bloods showed there was something not quite right. Eh? I didn’t understand and was too tired to ask any further questions. The patient next to me was moved out and another brought in. My nightmare began in earnest as I found the new patient is incontinent and regularly soiled in the bed and on the floor. He was abusive to staff and and I felt sorry for them. Very slowly the smell of urine and faeces permeated the air. This smell then stayed around my bed constantly. The patient was a mere three feet away from me. I had to have the window open behind me even though it was cold. My joints ached constantly. I took five shots of morphine through the night to get me through. A consultant came in and told me I needed to stay on antibiotics for seven days. The horror of staying in hospital that long slowly dawned on me. I slept poorly again, this time with the constant changing of the bed next door. No sooner did the staff change his bed sheets than he soiled them again. They had no time for other patients as it seemed it was all taken up by this one abusive patient. My venflon failed in my hand during the night. All the IV fluid leaked into my hand and arm. By the morning it was up like a balloon. I felt like crying as I was finding it difficult to cope with all this.

In the morning another venflon was inserted in my right arm. Not too painful this time but I’d gotten to the stage of not caring.

My ENT consultant sent his registrar to see me as he had a heavy cold and didn’t want to risk passing it on. My keyworker was with him too. I had a lot of pain under my right ear and it was swollen and the right side of my face was aching and not moving properly. He thought I could have Bell’s Palsey so put me on steroids and spoke to the senior staff nurse about moving me to a side room.

Cathy came to see me in the evening, I was so low that I kept telling her to go home and was very irritable with her. I got quite tearful too so Cathy pulled the curtains around us, got onto the bed with me and gave me a cuddle until visiting was over. I could only have visitors for three hours a day which made time crawl by. I really missed my home and my family. Cathy appealed to the senior staff nurse again on her way out about getting me moved to a side room anywhere in the hospital. She was sympathetic and promised to speak to the bed manager to try and get me moved.

Wednesday April 25th

I tried a few sips of tea during breakfast but the stench of urine permeated my nostrils so much that I gave up and tried to sit as far away as possible from him. This was the first day I attempted some nutrition. I managed 100 calories. I had a long way to go. My chemo drug Taxol is now really hitting home and my body is wracked in pain. I take morphine regularly to try and combat this. It manages to work so it’s just a dull ache. I am never pain free. I am constantly weak and tired. When Cathy visits me I am almost beside myself. I simply don’t want to stay another day.

An infection had been identified in a patient on the ward. The person with the infection was moved to a side room. The ward was closed to further admissions. All visitors to the ward had to wear gloves and aprons to visit me, and I couldn’t even hold my wife’s hand when she came to see me. I was in a situation where I was suffering with chemo, my white cell count was low, my immune system was compromised and I was stuck in a ward which had been closed due to an infection. This was completely nuts. I could have died If I caught an infection now. Why couldn’t they move me to a side room? They couldn’t as they were full of people with infections. This was crazy and I began to feel that I would be far better off at home than here.

Cathy, her brother and his wife visited in the evening and couldn’t believe the stench coming from the bed next to me - we tried to make light of it but it had gone beyond a joke. I didn’t sleep at all. The usual bed wetting and changing next door put paid to that.

Thursday April 26th

I’d had enough. I started telling people that I was going to discharge myself on the Friday as I simply could not face another weekend here. All I managed to taste and smell over the last few days were urine and faeces. It was like a bloody farmyard. I was weak from lack of nutrition. I was in constant pain from the Taxol and constant morphine use was also beginning to take its toll. My bowel movements had changed so it looked as if I’d caught some sort of infection or the antibiotics had affected me. The concoction of drugs I was taking didn't help and my stomach was shredded from all this. I simply could not take any more. I’d had enough. The ward was still closed due to the infection. Two friends from Tenovus came to visit in the afternoon as well as Cathy. They were shocked and dismayed that I was in this type of environment. I told them that I would be discharging myself the next day whatever the medical advice.

My children visited in the evening. They could see that I was struggling. My daughter broke down in floods of tears and hugged me on the bed. At this time they decided to pull all the partition curtains down around every bed in the ward to change them. Why now? Where’s the dignity and privacy in all this? It was bloody disgusting. I felt so sorry for her.

Friday April 27th

I decided to go home no matter what. The doctors came round to visit. Everyone was in agreement that this wasn’t the place for me to be. I could come off the antibiotics as the wound site looked a little better. I feel that the week cost me dearly. I lost so much weight through not eating for four days. I felt sick from the morphine and all the drugs I’d been having. I was sick of constantly smelling urine all the time. I immediately sent a text Cathy to tell her to come and get me at 1:30, she wanted to come straight away but I told her to leave it till then so the parking was a bit easier. Cathy received a call from the ward to say to come and pick me up at 3pm to give time for my prescription to be ready. She told the nurses that she was picking me up at 1:30pm, and that if the prescriptions weren’t ready she’d arrange to pick them up later she just wanted to get me home too.

The sense of relief to get out of that living nightmare was overwhelming. No cancer patient should ever have to go through what I’ve been through. It’s scandalous in this day and age that this happened. There is no way on earth I’m going into hospital again for whatever reason. I would rather die at home.

Post Peg - Pre Chemo

Hywel

Actually, the title is a little misleading. Nothing is ever straightforward in my case and I couldn’t just have a simple surgical procedure to insert a feeding tube in my stomach.  PEG stands for Percutaneous Endoscopic Gastrostomy whereby a tube is pushed down your throat into your stomach to inflate it with air. As my esophagus is closed up so much they couldn’t get a tube down my throat, so the only alternative was to make an incision through my stomach muscles. To date, without a shadow of a doubt, the most painful op I’ve had so far.

Feeding time. Can't wait for the next romantic night out!

I spent four miserable nights in hospital counting every hour that went by to the time I’d be allowed home on Monday February 13th. It was so difficult watching everyone else on the ward eating normally whilst I only managed to get a few morsels of food down my throat coupled with the new regime of bolus feeding, which is feeding myself with a syringe via my new tube. A very strange experience and one I’m still not fully comfortable with.

I spent the rest of the week gearing myself up to a five night in-patient stay during my chemo treatment starting on Feb 23rd until a phone call on Friday the 17th changed all that. My head and neck oncologist and my lung oncologist had a long meeting on the afternoon of the 16th. The biggest problem every medical team involved in my case face is that still no one is really 100% sure whether my cancer is of the lung or head and neck. The one thing they’re positive about is that it’s Squamous Cell Carcinoma. The problem with facing a chemo regime is that certain chemo drugs target specific body areas better than others. The original combination of chemo drugs on offer to me - a concoction of Cisplatin and 5FU - is specifically aimed at head and neck cancers. After a long discussion the oncologists decided to offer me an alternative regime - a concoction based on Carboplatin and Taxol. This is aimed more at lung cancer but Taxol is also used to treat head and neck cancers.  I also had a good response to Carboplatin before - although it gave me a rough ride it did shrink my tumours significantly.

There are pluses and minuses to both regimes. The original would see me as an in-patient thereby taking some pressure off Cathy and allowing the medical staff to monitor me closely as I had such a violent response to the chemo last time.

My second option of Carboplatin and Taxol would see both drugs being infused over one day, then nothing for three weeks. No in-patient stays, and believe me there’s no place like home. The down sides of this regime are an increased risk of infection, that lovely drug Carboplatin will be seeping into my veins again (the one that caused my blood clot last time) albeit at a lower dose to start off, and the wonderful Taxol will definitely see me lose all my hair and eyebrows. It also means that Cathy will have to keep a close eye on me and alert the hospital if she thinks there’s a problem. I’m not very good at admitting there is a problem as she will happily tell you, but I’ve promised to try harder this time! Ah well, at least I’ll resemble what most people seem to expect a cancer patient to look like.

I had a long think about this coupled with the advice of good friend, Professor Gordon McVie, one of Europe’s leading cancer specialists - I’m lucky to be able to call on someone like him - and have decided on the Carboplatin and Taxol regime. It starts Tuesday February 21st.

I have to cope with this on top of trying to get over abdominal surgery and feeding myself through a tube. Happy days indeed.

Cathy

Poor Hywel.  Yet again a potentially straightforward procedure was not as straightforward as we’d hoped. We’d been warned the team might have trouble putting the feeding tube in endoscopically, but they wanted to try this option first. Boy were they right on the trouble.

Hywel had a four inch incision in the centre of his tummy where they put the tube in to blow air into his stomach and hold it against his abdominal wall, whilst another incision was made to the right where the feeding tube was pushed directly into Hywel’s stomach. There is a round plastic disk stitched to the outside holding the tube in place, and a small balloon filled with 5mls of water undertaking the same task on the inside. The stitches on the disk will be removed after two weeks so the stomach has time to adhere to the abdominal wall and stay in place. The balloon has to be regularly emptied and refilled to hold the pipe in from the inside. Hywel asks me how I will still find him attractive when he has a tube poking out of his stomach and a tongue that isn’t quite straight anymore? The first thing I see when I look at Hywel is my loving, warm, funny, gorgeous husband and I am just so grateful these procedures will mean he can be with us a little longer. I don’t really see anything else.

Hywel was in a great deal of pain after the op. I knew there was a problem as I’d been told he shouldn’t be away from the ward for more than two hours. He went down at 4.30pm and still wasn’t back by 6.30pm. The nurses rang the recovery room and I was told he shouldn’t be too long but they were trying to manage his pain before bringing him back. I felt so upset for him. He’d been through so much and it had been a really difficult decision to have the tube. He looked really pale when they wheeled him back on the ward. The sister told me he’d been given a maximum dose of morphine but was still in discomfort. She promised they would do their best to make him comfortable. He hadn’t been given any of his regular pain killers since early in the morning as he’d waited so long to go down for his op so I asked whether he could have any of those. He was given one other drug but they wouldn’t let him have any of the others on an empty stomach. I was allowed to stay with Hywel for an extra half hour after visiting as it had taken so long to bring him back up to the ward. I just held his hand and stroked his face until he relaxed a bit and I left him dozing and in a bit less pain.

When I got home Luke and Elliott were watching a film so I made myself some food and a cuppa. I got Elliott to bed around 10pm and finally went to bed myself. Oh my, the floodgates really opened this time. I cried non-stop for about three hours. I was exhausted after ten hours at the hospital and I kept seeing Hywel’s face looking so pale, frightened and obviously in pain. Being unable to take his pain away was hard. All the bad news we’d been dealing with over the last few weeks seemed unbearable when Hywel was in the hospital and I was alone in our bed. I finally fell asleep about 2am. I looked like I’d been in a fight the next morning! I also rang the school and kept Elliott home the next day so he could come with me to visit Hywel at 2pm and to let us both have more sleep. I phoned the ward and was told Hywel had been fairly comfortable overnight and had managed a bit of breakfast. In contrast, I spoke to Hywel who said the night had been rough and he’d only managed a mouthful of weetabix! Elliott and I visited and I returned on my own later. Hywel told me he’d never had so much pain from an operation before. He hated every minute of being in hospital this time and it was a real low point for him. He came home on Monday and has gradually been improving both physically and emotionally. A feeding tube takes a bit of getting used to. You need to try and get into a routine which is sometimes hard to stick to, as we’ve been receiving lots of visits from health professionals as well as family and friends. Once underway however, the process takes less time than I imagined and as long as I bring everything that’s needed in together and wash everything up straight after it only takes about fifteen minutes in all.

We had another big choice to make on Friday when the oncologists gave Hywel treatment options to consider. It seems when one big decision is made another confronts us. Hywel has opted for the new regime of chemotherapy as it will mean less time in Velindre hospital and more time at home. I’m quite nervous about monitoring him at home as he’s much weaker and more poorly starting the treatment than last time. I had to insist on contacting Velindre a couple of times last time even though Hywel didn’t want me to, and I’m worried this could happen again. He’s promised me he’ll alert me to any problems earlier on but I know I’ll have to watch him like a hawk. I’m hoping Hywel will manage a much lower dose and it won’t be as bad this time. We have booked a table at Tenovus’ Annual Ball on March 2nd (ten days after the treatment) which we are both really looking forward to so we will try and focus on Hywel being well enough to attend that. We are taking Hywel’s eldest children and their partners and some special friends. Our choir is singing at the event again and I am hoping to sing with them. Hywel won’t be joining in but it will be the first time he gets to listen to a proper performance.

Into the Valley of.......

After spending many arduous nights considering state of flux that is my future, decisions have been made. Firstly, I’m having a feeding tube placed in my stomach. I really can’t wait for this one. I’m so looking forward to the next romantic meal out with my wife when she can sample the culinary delights on offer at the restaurant, whilst I pop a bag of liquid that looks like paint into a machine and let the contents dribble into the tube which sits outside my jacket, before finally entering my stomach. I can picture the scene now; horrified onlookers thinking, "What the f**k is he up to?", whilst I can only drool at the smell and sight of what everyone else is having.


You simply don’t realise what a simple pleasure eating a meal is until it’s taken away from you.

All I can manage now is purified food, the odd cereal, soup and yoghurt. And these take an age to get down. The swallowing system is quite simple. You pop the food in your mouth, chew for a bit and then swallow. That’s it. For me? Well I pop the food in my mouth then I struggle to chew because the tumour at the base of my tongue is boring through the muscle so it sticks out to one side. every time I eat I tend to piss someone off standing to my left as they think I’m poking my tongue out at them. Then it has to pass my voice box which, is damaged again and my speaking is now back to square one. Having a paralysed vocal cord is bad enough, but it actually affects your swallowing as well as your voice so the food has to dodge these obstacles. Next up is my esophagus which is well and truly buggered. Every morsel that reaches this spot faces the same struggle as the poor salmon trying desperately to get upstream to lay eggs.


Eating is now a monumental task and while it is nice to be able to taste the food, I simply cannot get enough down me to satisfy my hunger. The pure joy of enjoying home cooked food, something I have always done due to Cathy’s amazing abilities in the kitchen, is now gone.


All this leads to my decision to undertake that journey into hell called chemo again. I sometimes ask myself, What on earth possessed me to take this decision after the horror trip I had last time? Well, if the chemo works the one thing they hope it will achieve is the shrinkage of the tumour in my chest, and the ones squashing my esophagus from either side. It may actually allow me to eat more normally again, but that’s a big IF. I haven’t thought about the effect of the chemo on the one on my tongue or the tumours in my spine. First things first eh?


This time there'll be different chemo drugs and I'm being kept as an in-patient for five days so they can watch over me, which I think will take the pressure off myself and Cathy. The chemo is due to start on February 20th but to me that’s a long way off. One step at a time and the first one starts with the feeding tube on February 9th. My eighth general anaesthetic. Wish me luck. Here goes......