Radiotherapy Round Two

Hywel

November 2010 and I was due to start another load of radiotherapy. Even though I had suffered after the first lot, compared to the chemo I had just finished I wasn’t fazed by this in the slightest. This sounds like a very blase statement but the truth of the matter is that I have been through so much pain and suffering the last few years that I had virtually become immune to any more the NHS could throw at me.

Radiotherapy planning is normally quite straightforward. A CT Scan with a dye injected through a cannula so that the physicist can see precisely where the beams are to be fired. This time I had problems with the cannula. My veins in the one hand were so shot from the chemo that they couldn't get the needle into the back of my hand at all. After 3 attempts they gave up and tried the side. Two failed attempts there and then they tried underneath my wrist. That also failed. Apart from the obvious that its incredibly bloody painful to have someone shoving a needle through the skin of your hand, having it done repeatedly was taking it’s toll. I was sweating so much that my shirt was soaked through with perspiration. My wife was getting increasingly worried as I had been in the room for nearly 45 mins and hadn't appeared for my scan yet. This was another low point in my life. You can only endure so much pain and I was at my wits end. Someone else from another department came along and finally managed to get the cannula in near my knuckle. At last I thought, no more jabs for me. Whilst lying on the CT Scanner bed I was then told that I would have to be tattooed with a very small needle as they needed some markers for the machine. I burst out laughing at that point. After all I had endured I had to have my chest and side poked around with!

I was having a radical regime which was hopefully meant to get rid of what they could see. It was on a different machine than last time. Because of the location of the tumors and as the field of treatment couldn’t cross the last one, my treatment would take place on a machine with a built in CT Scanner.

Planning done I was ready to start 4 weeks of intensive ‘blasting’. After a few days I found this regime of treatment intensely boring. Same journey every day, Sometimes a short wait for treatment, sometimes a longer one as one machine or another was ‘seen’ to. This treatment was also to be a hell on earth scenario and this time was nothing to do with the pain or suffering or, in fact anything associated with the cancer. This time it was the weather.

My treatment plan was every day. Monday to Friday for 4 weeks. If I missed a day I would have to have 2 sessions 6 hours apart the following day. Basically I couldn’t miss one. Toward the latter half of December the weather turned colder and the snow started. It got more difficult to get down there for treatment. On December 19th we had booked to see Mamma Mia in Cardiff with my daughter and friend. We decided to catch a train to the Bay and stay the night at my brother-in-law's. The next day I had to have treatment again and it was also my birthday. The following morning it was snowing heavily. We managed to catch a train near the hospital and walk to get my treatment. By now the snow was inches thick off the ground and my already poor walking skills became increasingly worse trudging slowly through the snow. I had my treatment and on leaving found that the trains from the nearest station had been cancelled. We trudged to the next station and caught a train to Pontypridd where we knew the bus service to home was still running. On arriving in Pontypridd we realised that the bus service we needed had been cancelled 5 minutes earlier. We were 3 miles from home, with snow everywhere and no hope of getting home. Eventually at the end of my tether my wife called a friend who managed to drive to Treforest (we had to catch a train back to Treforest) and picked us up a half hour later. We got home cold, wet and tired out.

Luckily for us a friend with a truck managed to drive us to the last appointment the following day. My treatment had finished, I had spent 6 hours of my birthday trudging around in the cold and now my throat was sore. As the effects of radiotherapy gradually worsens over time I failed to eat my Christmas dinner as I could barely swallow. There was nothing I could do about it. I had to grin and bear the next two weeks and wait for the pain and scarring to die down.

I realised mid January that I had lost part of my life, or any quality attached to it from September through until the end of December. No quality time at all. Now I was facing up to the realisation that another clinic was due mid March and another CT Scan to see if the radiotherapy had worked.

Cathy

Hywel had found chemotherapy incredibly difficult. Radiotherapy was something he'd experienced before so although we knew it wasn’t pleasant, it was a less daunting prospect than chemo. We went to the planning clinic thinking it would be a quick scan, discussion then home. Boy what a day! Hywel was taken off by one of the nurses to have a dye injected into his veins ready for a CT scan which would help them plot the radiotherapy beams. Ten minutes went by and though I was happily reading my magazine I wondered how long he would be. There was another patient waiting next to me who kept on and on about how long she was being kept waiting and complaining that she really needed to go for a cigarette. Nearly thirty minutes went by and I wanted to strangle her, plus I was really starting to worry about Hywel. “What now?” I kept asking myself. I wandered down the corridor to see if I could find anyone to ask. Just at that point, one of the nurses came out of their room and told me that it wouldn’t be much longer, they were having a bit of trouble getting the needle into Hywel’s veins and they'd asked a nurse from the X Ray department to come and help, who was on her way. After forty five minutes Hywel came out. He was really shaken and his shirt was soaked in sweat. My heart went out to him, and then I felt so angry I wanted to scream, after all he’d been through with the chemo he’d now had his hand butchered! Luckily the other lady had gone for her cigarette otherwise I think I would have snapped at her. Hywel was then called in for the CT scan. The scan was done quickly and we then saw the registrar who told us what to expect whilst Hywel went through his treatment. On the way home I told Hywel about the lady and the cigarettes and that I had wanted to scream at her. He told me that after all the problems with the needle in the cannula room he was told in the CT room that they would have to give him three small marker tattoos on his chest! We both started giggling at our shared stories which relieved the tensions of another difficult day.

The radiotherapy wasn’t too bad, just time consuming, especially on the days that the machines were swapped around because of problems with frozen cables. The weather had turned incredibly cold and it was regularly quite icy. The treatment plan was for twenty sessions Monday to Friday, finishing December 21st. Towards the end of the treatment the weather was getting worse and worse. 

On December 16th we had quite bad snow and it was impossible to get our cars out of our street. Luckily our friend Martin was able to drop us down and bring us back on the Friday - he lived on a main road five minutes walk away. On the Sunday (19th Dec) the weather was still pretty bad and we had booked to see Mamma Mia with Hywel’s daughter Carly and her friend. We weren’t able to get a refund on our tickets and if we changed to another night there were no seats together. We still couldn’t get our cars out, so we asked Martin if he could drop us at the train station. We arranged to catch the train into Cardiff and stay at my brother’s flat in the city centre after the theatre, that way we could get to Velindre more easily on the Monday. The show was great and we had a lovely evening with Carly and her friend Amy. Amy dropped us at my brother's flat and we had a couple of glasses of wine and a chat with them. 

The next day was Hywel’s birthday and I had taken a few little presents for him to open at my brother's in the morning. We rang Velindre to see if they could fit us in early. Snow was starting to come down heavily and although the trains were running OK we didn’t want to get stuck in Cardiff. Adam was home from Uni and looking after Elliott so we knew they were OK, but I was worried about Hywel. It felt like a bit of an adventure when we set off through the snow. We were dressed for the weather, but the snow was coming down really thick and fast and some of the trains weren’t running or were at best sporadic. We had a bit of a wait at Cardiff Central Station and managed to get to Coryton, which was a five minute walk from Velindre. 

The snow looked really pretty as we walked slowly through it, but Hywel was getting very tired and found it hard going. We still felt like it was a bit of an adventure when we arrived at Velindre and shared stories with other patients about how we’d got there but the novelty was gradually wearing off. We had to wait over an hour for Hywel’s treatment and the snow was still falling. We were told that trains had stopped running from Coryton, but that if we walked to Llandaff North train station (about a mile away) trains were still running to Pontypridd. Hywel’s daughter was keeping us informed of the trains and buses so we took another slow walk to the train station. It was packed but I did manage to wangle a seat for us, so we could have a bit of a breather. We got to Pontypridd and I rang the bus company who assured me the bus we needed was still running. We nipped into M&S on the way so I could pick up a birthday cake for Hywel and carried on to the bus stop. When we were on the stop a lady told us that the buses had stopped running. I rang the bus company again and was told my informer was right, the service had been suspended. We tried to get a taxi but they weren’t prepared to take us unless it was an existing booking. I had to ring Martin again to see if he’d come and get us. He asked us to get the train back to Trefforest and picked us up from there. We were both thoroughly miserable and the cold and wet had started seeping through even my furry wellies. “Happy Birthday Hywel”, I thought. 

Velindre were insistent that Hywel shouldn’t miss even one of his treatments but we still couldn’t get our cars out and Hywel was completely exhausted by the journey by public transport. I wanted to ring a friend who I knew had a 4x4, he wasn’t a close friend but I was sure he wouldn’t mind. We didn’t feel we could ask Martin again. Hywel was very reluctant at my request for help. We argued about it a bit but in the end I just rang the friend in question and explained the situation. He was delighted to help out and even took us to Asda afterwards so I could get a bit of shopping (which turned into a massive trolley full!) because our online delivery had been cancelled the day before.

Christmas came and went. Hywel had a really sore throat and wasn’t able to eat much of his Christmas dinner, but it was still enjoyable because all the kids and Hywel’s Mum spent the day with us and we knew that the effects of the radiotherapy would ease off over the next few weeks. There wouldn’t be any more treatment for Hywel to endure for some time and the next hurdle facing us in the near future would be a scan to determine the effects of radiotherapy on the cancer.