Cathy
Hywel stopped his chemo four weeks ago. He continues to deteriorate and spends a lot of time asleep. He only gets out of bed for a few hours a day, but when the song was released he got up to be interviewed for the local paper on May 21st and also to go to Radio Wales on May 23rd. He was interviewed along with myself and Rod about the song and it was played on the radio for the first time. It was a really emotional and exciting experience. In the afternoon of that same day we went to ITV Wales to have a look at the final rough edit of the TV programme, again, that was an amazing time. All the people involved were there to welcome us and Greg the producer read through the narrative whilst it played. It was hard to watch but also wonderful as it will be a reminder of what an amazing man Hywel is when he’s no longer here with us. Here’s a link to the TV programme:
Hywel was completely exhausted after the promotional interviews and the emotion of the programme and went to bed on Wednesday night, where he stayed for a few days. The recent heat and humidity has also made him very restless. It has been a really sad time as Hywel’s deterioration seems to be very rapid at the moment, my strength has been really tested and I have had a fair few days in tears. In just twenty minutes, the TV programme shows the quite dramatic decline in Hywel’s health. As I have been with him constantly since last December his weakening health has felt quite gradual to me, but seeing the programme shows that it was only a short while ago that Hywel could speak and smile without a problem whereas now it’s a huge effort just to sit up.
On Sunday May 27th, Hywel’s feeding tube blocked. I read up on what to do and managed to unblock it by putting warmed carbonated water through it. On Monday 28th it blocked up again, I’d managed to get a few pain killers through and a bit of water beforehand. I phoned the specialist nurse who told me to keep trying to put fizzy water through and to use a push then pull technique with the feeding syringe to try and unblock it, but this didn’t work and we were referred to Velindre hospital where the specialist PEG nurse changed Hywel’s tube. We were advised that one of the medicines Hywel was taking (lansoprazole - fast-tab) was the likely cause.
On Tuesday May 29th Hywel had a clinic appointment to see his oncologist. His MRI scan had not shown anymore tumours in his head and neck area so it was agreed that a single dose of radiotherapy to Hywel’s salivary gland tumour could help stop any further facial paralysis. He was prescribed an alternative medicine to the one that blocked his tube - Ranitidine. We were then told to come back the following day for Hywel to be scanned and marked up ready for his radiotherapy.
That evening I did a buffet tea for all the kids as we were going to watch the broadcast of our TV programme. The kids had taken part in it and it would be the first time they’d seen it. As we were having our food, about half an hour before the programme was due to start, there was a knock on the door. ‘Who’s that now?” I thought a bit annoyed as we were just about to settle down together. Elliott answered the door and it was my son Adam - he’d travelled home from Warwick University as a surprise so the whole family would be together to watch. What a lovely thing to do, we were both very touched. Elliott had been in on it too and kept it quiet! Carly’s boyfriend Jon joined us too, so seven of us sat down together to watch. There were a lot of tears but we were all really proud of the programme and really felt that it had been put together very sensitively. Twitter and facebook went mad after the programme had finished with loads of lovely supportive messages. It was hard to keep up. Hywel’s been unable to respond to everyone as he just keeps sleeping. I’m not really up on Twitter but I’ve tried my best to reply to as many as possible.
On Wednesday 30th May we were at Velindre by 10:20. We had a long wait for Hywel’s appointment, then he was sent for a scan, and we had another long wait to see the consultant again. At 12:00 we were told that Hywel could have his radiotherapy at 13:30 that day if he was up to waiting. Hywel wanted it done so we wouldn’t have to come back again. He had a big blue square drawn on his face with a marker pen (not quite as pretty as the black arrow people on the eye ward but still attractive!) and we had to wait for his appointment time. I didn’t have any of his feeds with me or pain killers as we were only expecting a short visit. The Velindre dietitian brought us a syringe and some food and found us a room. We then had to wait in outpatients. Hywel got called in at 14:10 for his radiotherapy. By then he was beyond exhausted, falling asleep and in a fair bit of pain. I couldn’t wait to get him home, I think we should have left it til another day in hindsight. Hywel was quite rough upon returning, he had an upset tummy and his face was really red and swollen straight away. I rang Velindre to check whether it was normal to react immediately. They said it could happen but to call the GP if we were worried. That wasn’t going to happen, Hywel wouldn’t let me, just in case he got sent to hospital again! He managed with painkillers, sleep and fluids.
On Thursday May 31st the palliative care Doctor came to see Hywel and prescribed some new medicines, which I have taken delivery of today (Saturday 2nd June). They include some steroids to try and help with Hywel’s energy levels in the day and some muscle relaxant for the night time to help Hywel feel less restless.
Yesterday (1st June) Hywel had some Reiki and our Macmillan nurse called in. He seemed a bit more with it in the afternoon and we watched some TV programmes together. He had a restless night again but slept from 6am til 11am today, was awake for about 3.5 hours and is asleep again now so I’ve been catching up on e-mails and written this blog.
We are going to try and get some more radio stations to play Hywel’s song this week. I’ve written to Chris Evans at Radio 2 and Steve Wright Sunday Lovesongs, also on Radio 2. Others I have contacted include the Love Songs Programme on Swansea Sound and our local radio station GTFM. So if any of you readers have any contacts in radio please try and get Hywel’s song more plays.
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