After all the Excitement

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 23^rd. 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:

http://www.itv.com/news/wales/2012-05-30/wales-this-week-do-not-go-gently/

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 27^th, 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. 

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.

2012 - Look What January Dragged In

Hywel

Well, the shit hasn’t just hit the fan, it has covered everything and is slowly working its way down the wire. One oncology clinic has opened up a whole new world of worry, despair, anger and all the associated negative words cancer conjours up.

What I love about cancer is its ability to draw a veil of comfort across you from time to time only to swiftly pull it back as if some sick video game. The veil brings with it pictures of respite, no operations or treatment and as normal a life as you could expect with this disease. As soon as that veil is removed the stark horrors of reality come crashing down on you again with unimaginable force. 

Having survived one oncology clinic with brutal news that the cancer looks as if it’s spreading in my chest, closing off my esophagus and is in my my tongue, the future looks very bleak indeed. A subsequent oncology clinic brought the news of a potential spread into the thoracic spine. Well, I suppose, why have one thing to worry about when you can have three? 

I had an operation on Tuesday January 17th for the team to remove biopsies from my mouth, tongue and esophagus. This was my seventh general anaesthetic in the last five years but when I went into theatre it didn’t bother me in the slightest. Why? Because this time I had so much else to contend with that being knocked out for a couple of hours was the last thing on my mind. 

Luckily I slept fairly well that night as I cope with the anaesthetic quite well, and the following day went home to wait another week for the results. Thursday morning I tried to swallow a tablet and I nearly choked to death. Cathy phoned the hospital and back in I went for a camera down my throat to see what was going on. Whilst on the ward I managed to squeeze in an MRI on the spine - multitasking quite well I thought. 

I was now faced with being unable to swallow solid food of any kind and my tablets would have to be crushed or supplied in a liquid solution. Luckily I could have morphine patches and some things come in an oral form, so only two crap tasting tablets spread over my breakfast cereal. 

We’re only a few weeks into January and not only have I stood in front of a fast moving train once, I’ve been hit by it repeatedly. 

Where does all this leave me? Well, next week I have two clinics which will decide what the future holds, if any. A sobering thought to keep me on my toes. 

The Mayan prophecy seems to have come true in my case. 2012 is my year it seems.

  

Cathy

Unfortunately the results of the scan were a real blow. Hywel has been finding swallowing more and more difficult over the last few months and as well as a CT scan for his chest and abdomen he was referred for a barium swallow. The barium swallow involves drinking a solution which tastes a bit like Gaviscon and is the same gloopy texture. A series of X rays are then taken which can track the flow of this stuff through the esophagus. This was undertaken on January 6th and Hywel’s clinic for the results was January 10th. I went to the hospital with him and waited whilst the test was done. Hywel came out looking a bit shell shocked. The radiographers had shown Hywel the X Rays and there was a considerable narrowing of his esophagus - it being only slightly wider than a vein in one place. We were forewarned there was a new problem. 

The news was as bad as could be. The CT scan and barium swallow showed a strong likelihood cancer was causing the esophagus to narrow. It had also shown up a suspicious area on the tongue. Hywel asked for a prognosis and was told it could be as little as 6 months, possibly longer, as he was in good health apart from the cancer. It was a huge shock. We had been living in a bit of a bubble for the last few months without any treatment to contend with and no imminent results. The bubble exploded with that news and again Hywel has been immersed in the world of cancer treatment. Since the day of the results we have spent more time at the hospital for clinics, tests, scans and operations than we have at home. When we have been at home we have been faced with telling our loved ones and friends the news and the snowball effect of this with the resulting texts and phone calls. It is lovely to know how much people care but at the same time it is exhausting. We try and grab as much quiet time, just the two of us, but that is tinged with so much sadness and an overwhelming sense of loss. 

Since results day we have made ourselves get out of the house a couple of times. We spent a few hours at Ogmore by Sea, and also in Garw Nant which is in the Brecon Beacons. Hywel finds being out in a natural environment good for the soul, it seems to help him find some inner calm. Whilst Hywel was waiting to have his op we spent time attempting to cheer ourselves up by making lists of good things - all the places we have been on holiday both alone and with the children, and all the concerts and shows we have been to. Hywel bought a Lego Millennium Falcon and has spent some time building it with Elliott this last week. It is lovely and at the same time heart wrenching to watch and listen to them working together. We are still hoping there will be some good news at next week's clinic, that they'll be able to do something about Hywel’s swallowing and that some of the areas which look worrying will be fibrosis caused by the radiotherapy rather than the cancer taking over. We try hard to hold onto some vestige of hope. I feel helpless again, as if somehow I have failed to protect Hywel and the kids, although I know deep down that I am not to blame, it is the fault of this vile disease.