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.