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.

Waiting

Cathy

Once again I am home alone whilst Hywel is on a hospital operating table. He had such a good week following the Tenovus Ball we were starting to look forward again and daring to think about going away for a short break not too far from home. Hywel has managed to get his tube feeds up to four a day, has eaten a little bit of soft food and enjoyed cups of tea now his taste improves whilst the effects of the first infusion of chemo wears off. On Saturday we went out in the morning for a drive in the new car Hywel has treated himself to, and his daughter Carly came over at lunch time to spend some time with us. Hywel had some soup and I made Elliott hotdogs. I used the small tinned hotdogs that are soft and mushy and asked Hywel if he wanted to try a bit of one. He had a really tiny piece which he chewed really well before swallowing, but it got stuck so he spent the next half an hour wretching, trying to eject it from his throat. Then all afternoon he felt as if something was stuck, and if he tried to drink anything he was just bringing it up again. After this had been going on for a couple of hours Carly and I suggested it might be an idea to go to A&E to see if they could help him dislodge it. Hywel was adamant he wasn’t going there as he would be surrounded by loads of illness and infection right in the middle of his chemo session.

By 6pm the situation hadn’t improved so I persuaded Hywel to let me at least make a phone call to let A&E know his concerns to see if he could avoid the waiting area. One of the Doctors said they would try to see Hywel quickly - as long as no major traumas came in in the meantime - but that even though there was a risk of infection it was important for him to be seen.

We got to A&E around 7pm and there were only five people in the waiting area. We were amazed - during my last couple of visits with Elliott the waiting area has been packed and we have spent four or five hours there. We speculated that everyone was out celebrating Wales’ victory over Italy in the rugby and Saturday night TV was keeping people away. We were seen very quickly and Hywel was referred to the ENT ward. He was put in a bed and given muscle relaxing injections and some Diazepam to try and relax him more. He was angry and upset that yet again he was facing another set back. He'd made plans to go out with some friends to an exhibition in Worcester the next day and he would now miss out and be spending more time in hospital. He was angry with me because I had given him the food which caused the problem, and he wished he'd just stuck to soup and liquids and accepted that that was all he could manage. He had been eating a bit of mash potato with corned beef and gravy a week or so ago so we had thought a soft hotdog sausage would be a similar consistency.

The buscopan injection didn’t make any difference, he could still feel the blockage and he couldn’t swallow any water. He was admitted and told the injections would be tried again in the morning and a decision made from there.

I asked my friend June to sit with Elliott when I realised we were going to be a while, she then stayed on so I could take an overnight bag back to the hospital. It was 11pm by the time I returned and it took me twenty minutes to find a way in! I dropped the stuff off and left after a quick chat with nurse practitioner who told me it was likely Hywel would need surgery to remove the blockage.

Hywel was less angry the next day but exhausted by all the wretching and not being able to clear his throat. They had tried the injections again in the morning but to no avail. His consultant spoke to me in the afternoon as he was on call that weekend and said he still hoped that the food might dislodge itself but that Hywel was on the morning list for surgery if it didn’t.

I sat with Hywel through visiting in the evening. He told me all he wants is for the surgeons to stretch things enough for him to be able to share a cup of tea with me when we drive down to Ogmore to sit by the sea. He will use his feeding tube as much as he can and stick to just soup. I spoke to Hywel at 9am this morning and he was gowned up and waiting to go down. It is now 11.30am and I am waiting for a call to tell me how it went. I’ve tried ringing the ward a few times but haven’t got an answer yet. Will let you know how it goes.

Spreading the Word

Coming off stage after my speech at the Hilton Hotel March 2010

After giving up teaching in April 2008 I was left in a void, struggling without something meaningful to do. Cancer charity Tenovus phoned me up one day and asked whether I’d be interested in speaking briefly on the radio about the effects of heating bills and the impact upon cancer patients. I had never done anything like this before so I thought it would be a great idea to get the message across to a wider audience. The radio interview very quickly became a TV interview with BBC Wales and that’s how my new role as Tenovus Ambassador started.



With Jackie and Laurence Llewelyn-Bowen

I’ve never had a problem talking about my cancer. I know some cancer patients do which I fully appreciate, but I've always felt there are so many barriers which remain between the public’s perception of cancer and the reality. In my own small way I've tried to dispel some of the myths surrounding the treatment and given advice on how to overcome some of the many pitfalls that people encounter during the course of their illness.

Over the last four years I have spoken on Radio Cymru, BBC Radio Wales, S4C, BBC Wales, ITV Wales and at quite a few public events. I get very tense and nervous beforehand but I always feel fine once I start. I don’t know why, it’s just the way I am.

The BBC Wales documentary following the Sing for Life choir was a very uplifting experience,  not just for myself but for all concerned. Even being on stage at the Hilton in Cardiff in front of 200 people, and being filmed by the BBC delivering a speech alongside Jackie and Laurence Llewelyn-Bowen didn’t worry me too much. I felt it important to convey, not just my feelings, but the feelings of others I had known who were in a similar situation at the time.

Speaking with Claudia McVie at the Senedd.

I felt very strongly about my question and answer session with Tenovus Chief Executive Claudia McVie at the Senedd (the National Assembly building) this year when speaking in front of the First Minister Carwyn Jones and Health Minister Lesley Griffiths. Those were the ideal times to tell people how I felt and had benefitted from the wonderful work that cancer charities like Tenovus do.

It was a great privilege and honour to speak at the Tenovus St. David’s Day Dinner at Sophia Gardens this year. My nerves were literally shredded before I took to the stage in front of 500 people but my talk went down very well. I just hope the small amount I say will touch someone and make them feel that all the good work people do in the field of cancer research really does help.

It’s been a privilege to meet some wonderful celebrities over the years who have given their time freely to help further this cause and I hope I will carry on doing this for as long as I possibly can.

Having dinner with Rory Bremner. Tenovus St David's Day Dinner, Swalec Stadium, March 2011

The last time I was in hospital having an operation was November 2nd 2011. Even whilst lying wide awake on an operating table with my neck open to the world my consultant told me how important it was to talk as openly as possible about cancer and it’s many effects. He told me this as he felt it would also break down the barrier between people like himself and the first time cancer patient bravely taking that first step into the unknown.

Cancer is an awful thing to have but I feel it deeply important that people who want to discuss it can do so without the stigma felt by the mere word itself. Understanding palliates the paralysis that the word cancer causes. As many have said before me, ‘Cancer is a word, not a sentence’.