Hospice Care

Tuesday, August 7, 2012


Hywel had his new medication, but the steroids made him feel very jittery and the other stuff didn’t really agree with him. Reiki seemed to relax him and we arranged for this to happen again on the 15th of June.

The next couple of weeks were tough for Hywel. He was very sleepy but didn’t settle well as he was not able to get full relief from his pain. He spent most days in bed and managed just a few hours downstairs in the evening watching a couple of things on the telly.  The occupational therapist called on the 11th of June to see if there were any aids that would be of help but didn’t feel there was much that needed to be changed in the house. Hywel can still manage to get up and down stairs slowly and the bathroom is really close by. 

On June 12th Hywel had an oncology clinic to review his radiotherapy treatment. We had a letter telling us to go to Velindre hospital for the clinic and I rang ahead to check which part of the hospital we should go so I could make sure we parked at the right entrance. Hywel insisted on driving us there as he hasn’t been in his car for a few weeks. It was a nerve wracking experience as I didn’t really want him to drive, he had done very little other than sleep for the last two weeks, but he was adamant that he was fine to do so. We got to Velindre in one piece only to find the wrong hospital had been written on Hywel’s letter. We should have been at a hospital 25 miles away. The receptionist was very apologetic. I asked her to make sure a message got through to Dr Hanna to let her know there had been an error and we hadn’t just failed to turn up. She promised to send a message and told me to ring the following day to get another appointment. We drove home and Hywel went straight to bed as he was exhausted. He told me that he was not in any hurry to drive the car again.

At 5:45pm that evening I had a phone call from Dr Hanna herself asking if everything was OK as we hadn’t attended the appointment. I explained there had been an error and that she should have had a call to let her know. Dr Hanna felt dreadful about the mistake. It wasn’t her fault it was just a mix up. I told her that Hywel’s face was OK after the radiotherapy, he was extremely tired a lot of the time and that he had a lump deep in his calf that he had wanted to tell her about which was quite painful. Dr Hanna said she would arrange a scan and that we would have a phone call with a date. The next morning, on the 13th of June we had a call from Dr Hanna again. She had arranged for Hywel to be scanned that afternoon to check whether there was a clot. We headed down to Velindre again - I drove this time. Hywel had the scan immediately. No clot showed up and an appointment was to be sent to us for the 26th of June. Dr Hanna rang again in the evening to say she had seen the scan results and there wasn’t a clot but she would check Hywel’s leg at the next clinic but to get in touch again if it was causing a lot of pain.

On June 14th Hywel’s Minister brought his Mum to see him for a short visit. She is 87, very  frail and gets a bit confused at times. The visit was short but went well. Hywel was pleased to see her and she enjoyed seeing him but was quite tearful. I tried to steer the conversation to everyday things as she was a bit lost for words and we all had a nice chat about some of the things she had been doing lately. Hywel was exhausted after getting up for his Mum. We also saw Jane the Macmillan nurse in the morning who wanted the GP to check Hywel over as he was having a lot of pain still and had a few other problems. Hywel’s blood tests had shown a slight drop in red blood cells but not enough to necessitate a blood transfusion. The GP came out in the afternoon, he decided to increase Hywel’s morphine patch and wanted to read up on some medications that could help Hywel with some of his other problems resulting from not being able to swallow anything anymore.

On June 15th Dr Hanna rang again, she was still feeling bad about Hywel missing his appointment and had realised that she didn’t live far from us. She was working at home that day and wondered if it would be OK to call. Hywel was due to have Reiki that morning so we arranged for her to come in the afternoon. I put the phone down and it rang again immediately. It was Jane our Macmillan nurse, a bed had become available at the local hospice and she wondered if Hywel would like to come in so that his pain management could be properly reviewed and he could be monitored whilst a new regime was trialed. She told me to discuss it with Hywel and she’d ring back in 15 minutes.

Hywel was a bit unsure, but this had been discussed as a possibility a couple of weeks earlier and he’d thought it was a good idea then, but unfortunately there were no beds available at that time. I reminded him of this. We had also been told that Hywel would have his own room. Hywel agreed, but was worried about Dr Hanna calling. I managed to get back in touch with her and she said she’d come to us at midday instead. I told Jane that Hywel would like the bed when she rang back and she asked that we get to the Hospice - Y Bwthyn (Welsh for The Cottage) by 3pm.

So Reiki was cancelled, and Dr Hanna visited at midday. She thought a short stay at Y Bwthyn was a good idea. She checked Hywel’s leg and said although it was very rare to have a tumour in a muscle, she thought it was highly likely that the lump in Hywel’s calf just that - Hywel “had never been a text book case” she said. She was going to arrange an MRI scan, but would give some radiotherapy without one if the lump became more painful or larger.

Dr Hanna left and I got a bag packed and Hywel’s medicines and feeds organised and we arrived at Y Bwthyn for 2:30pm. I managed to get hold of my Dad and asked him to come to the house when he could so he could keep Elliott company, give him some tea, and stay with him until I got home.

Hywel seemed to relax as soon as he saw his room. It was a far cry from the hospital ward where he had spent his nightmare week. The room was light and airy with plenty of space for visitors. There were two big windows with views across the valley and trees all around, and he had his own toilet. The Doctors and nurses were attentive and immediately reviewed his pain medication. They told Hywel they felt he would need to stay for at least a week and asked how he felt about that. He said he really didn’t mind how long he had to stay just as long as they got his pain under control.

It was a huge relief for me too as it had been such a strain trying to get Hywel’s medications to work for him, and seeing that even giving him everything we had at home was never quite enough to stop him hurting. I relaxed a little for the first time in a few months and the first night he stayed at the hospice I slept really well and so did he.

It is 25th June today. Hywel is pain free, but he is still finding it difficult to sleep. The new drugs make him hallucinate a little and he has quite vivid dreams. The Doctors want him to stay a little longer to try and get the balance of painkiller and relaxation right before he comes home. His blood test results today show that his body is slowly deteriorating and though we do not know how long Hywel has left the Doctors don’t think it will be many more weeks.

Donna Lewis, the lovely lady who sang Hywel’s song, is coming to visit Hywel later this week as she is home in Wales visiting her family so he’s really looking forward to that and hopefully by Monday, Hywel’s pain management and sleep regime will be good enough for him to come home for his final few weeks.

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