Big Decisions

Cathy

Hywel was discharged from hospital (in his words: “escaped from that hell hole”) on Friday April 27th 2012, weak as a kitten but quite vociferous in his opinion that he is never going back there again. I have been forbidden from ringing the GP if he is poorly and if ever he tells me off for making any small mistakes in sorting him out like putting water through his feeding tube a bit too fast or forgetting to have something in the right place for his feeding regime he says “please don’t send me back to hospital!” I don’t want to subject him to that horror again but it does put me in a really difficult position, I am not medically qualified to make judgements about Hywel’s needs and to be honest at times the responsibility frightens me.

The first week after Hywel came home was spent trying to get his feeding regime and pain management back on track. He slept a lot but we did gradually build his nutrition up to a reasonable level and his energy levels started to improve. In that first week Hywel had an exciting meeting with Tenovus about his music and a TV programme that he has been involved in; on Tuesday May 1st and on Wednesday  May 2nd there was a scan to see whether the chemo he’d been having had slowed things down. We had a meeting with his Macmillan nurse on Friday May 4th, where we told her about his awful hospital stay and discussed what alternatives there might be if he was poorly again. On Saturday May 5th two good friends of Hywel’s took him to an exhibition in Bristol. He was out for around six hours. The friends took a wheelchair and Hywel had his first day out without me in ages. He was not very keen on the idea of being in a wheelchair but admitted that he could not have managed the day without it so it was an ok experience. I went mad in M&S whilst he was out! Well, it was my birthday the next day so I thought it was alright to treat myself. The day of my birthday, Sunday May 6th, Hywel was so exhausted from his day in Bristol, he spent the day in bed. Luke, Carly and Jon had made a big effort for me which was really sweet of them. They came over at lunch time and set up a buffet and a birthday cake and sang Happy Birthday to me with Elliott, in both English and Welsh - our family tradition. A few friends popped in for short visits plus my Dad and his partner Jayne. Hywel was just too tired to join in, he stayed up in bed. So all in all it was a fairly quiet day. I tried to be enthusiastic but I don’t think I did a very good job of it as I was missing Hywel being a part of it. Hywel finds special occasions are just so hard to bear as they are a reminder of future occasions that he will miss out on. I felt the same that day, I didn’t want to be ungrateful, but I just wanted the day to be over and done with really. We had a quiet day bank holiday Monday May 7th then Tuesday May 8th was the dreaded results day.

We got to Velindre for Hywel’s 11:15 appointment and sat in the waiting room for a short time before being ushered into a side room for our consultation. We don’t know why we weren’t just left in the main waiting as we then waited about half an hour for the Doctors to come in. We saw our Consultant’s Registrar who just said that Hywel’s blood test results were good and asked how he was feeling about having his next round of chemo. Hywel said that he wanted to know the results of his scan before making any decisions about that. He was still trying to pick himself back up after the week in Royal Glamorgan so wanted to make a fully informed decision about his next lot of treatment. The Registrar went off to track down the results and we had a brief chat with the specialist nurse whilst we waited. Dr Hana, Hywel’s consultant, came into the room ten minutes later. She had the scan results, the cancer was continuing to spread and some new tumours had appeared. One in Hywel’s salivary gland which we had had our suspicions about, one under Hywel’s right arm, and one at the top of his collar bone. It was a real blow again. Hywel had endured gruelling treatment since January and it had had no effect on the cancer’s progression. We talked through what options there were now, Doctor Hanna thought it might be worth trying the other chemo drug that Hywel had had in 2010 - a drug called Gemcitibine- it would be a shorter infusion but he would have it twice over a twenty one day cycle - on day one and day eight of that cycle. Radiotherapy was also suggested for a future date for after the chemotherapy.

We had a quiet day the following day and managed to get Hywel’s food intake up to over 1600 calories so felt we were making some headway there. Hywel had started to feel a bit stronger after his hospital ordeal. On Thursday  May 10th we arrived at Velindre for a short infusion of chemo - we were at the hospital about two hours instead of the six hours with the previous chemo. We got home around one o’clock; by four o’clock Hywel had to go to bed as he felt dreadful, shivery and dog tired. That was it really until yesterday (Tuesday  May 15th) lunchtime. This new chemo knocked him sideways. He spent most days in bed. He was too weak to lift his head off the pillows some days. It was a real challenge for me to get fluids and nutrition through his feeding tube, he just wanted to be left alone and regularly told me that he longed to go to sleep and not wake up. The chemo took Hywel to a very dark place when he was awake, he was angry and quite abusive verbally, there was also a day when he sent the contents of his bedside cabinet crashing to the floor, that same evening he decided that he should be left alone to sleep downstairs and he wouldn’t allow me to help him take his medication. So I stayed upstairs out of his way and fell asleep, only to be woken by my son around midnight as Hywel was calling for me. I then had a load more abuse because Hywel didn’t know where his pain medication was - I’d left it all out for him in the kitchen but he didn’t have the strength to get it - and because I’d fallen asleep and not heard him call. This time I just helped him to take his painkillers wordlessly and slept on the other sofa in the lounge even though Hywel was insisting I should go back upstairs and leave him alone. I knew deep down it was the chemo causing Hywel to be so difficult and he was upset and deeply apologetic the next day. It was still really tough to have to deal with and I couldn’t help but feel upset and hurt by Hywel’s words and actions. By Monday Hywel was still in bed and too weak to get up. He said he wanted to wash but was too tired to have a shower or bath. I suggested that I could help him to have a wash in bed, he was adamant that he didn’t want me to bathe him. I suggested asking the district nurses to help but he was having none of that either, so somehow I managed to get him to undress and have a quick shower. He felt better for being cleaner but took three or four hours to get over the exertion.

That evening he said that he was not having chemo again he felt that the new regime was completely destroying his quality of life. We were both upset as he thought he was letting us all down but he just didn’t have any fight left in him. I told him none of us felt let down, that he has been fighting hard for the last five years and we don’t want him to feel pressured to keep on with a treatment that is so hard it is making what time he has left so full of anguish. We agreed that he should wait until the day before the next chemo to be sure he wanted to stop. Tuesday May 15th Hywel did maage to get up around midday as we had some friends and family visiting, but he was exhausted after that.

Today (May16th) he had to go for another scan at the Royal Glamorgan hospital. We left the house early as parking is difficult. There were no spaces left in the disabled bays but we did eventually manage to park up. We sat in the car waiting for his appointment time, several times Hywel wanted to forget the scan and just go home, but he went ahead with it. I’d contacted the ENT consultant that morning and managed to get Hywel fitted into a clinic straight after his scan. We wanted to see if anything could be done to stop Hywel’s right eye from watering and causing pain as the tumour in his salivary gland is causing some paralysis in his face and he can’t shut it properly. The scan was an hour late but we were seen pretty quickly by the ENT team. They were so good, they completely understood and were supportive of Hywel’s decision to stop the chemo, they agreed he needed some time to try and get his strength up through proper nutrition which would hopefully help him to feel better. Hywel has some ointment and drops to help his eye and in a few weeks he can have a short session of radiotherapy on the tumour in his salivary gland to try and control the symptoms of facial paralysis. Today has been a really emotional day to top off a really tough few weeks, as the decision to stop chemotherapy is a big decision and has not been undertaken lightly. This type of cancer is incredibly cruel, the hardest thing I’ve ever had to deal with in my life and I am just an observer so cannot possibly know what it is like for Hywel - he has shown such resilience, dignity and strength throughout his cancer journey, making his decision today is another fine example of this.