Living Beyond Breast Cancer Teleconference

Monday, August 20, 2012

Free teleconference "Breast Reconstruction: Considering your options"
Featured is Dr. Frederick Duffy Jr., plastic and reconstructive surgeon at the Texas Center for Breast Reconstruction. Register at or by calling 610 645-4567. The time is from noon to 1 p.m.  (EDT).

CEU units are available for licensed social workers.

WORD on Prostate Cancer

Friday, August 17, 2012

Greetings All!

We would like to invite you to view and share the “WORD on Prostate Cancer” educational video! The following video was produced at the University of Florida in partnership with the Alachua County area to educate Black men about prostate cancer.

Please feel free to forward the following to your colleagues.

Shannon Pressey, MS
Research Programs Coordinator
Pharmaceutical Outcomes and Policy
College of Pharmacy
University of Florida
Office: 727-394-6162
Fax: 727-394-6014

Cancer Survivorship Conference

The Florida Society of Oncology Social Workers presents
Cancer Survivorship: Shaping the Direction and Future of Patient-Centered Care
September 13-14, 2012
Fort Lauderdale
CEUs available
Keynote speaker: Mary Ann Burg, PhD, LCSW
Visit www. for online registration

Cancer Connections Meets August 22

Join Cancer Connections at Hope Lodge at noon on August 22, 2012 for a presentation by Gwen Carriere ARNP, and Mary Hill DNP, of North Florida Regional Medical Center.  Gwen will speak about a day in the life of a newly diagnosed cancer patient and the role of the cancer program coordinator.  Mary Hill will discuss the role of the oncology nurse navigator, and how she helps patients both in and out of the hospital.

Your RSVP is needed by 5 p.m.  Monday the 20th if you wish to be counted for lunch.   A $3 donation is requested. Last minute attendees are welcome, but please bring your own lunch, as food is prepared based on notice given by 5 p.m. Monday.

For more information or to RSVP:   Barb Thomas at

Hywel's Final Week

Tuesday, August 7, 2012


On June 28th Hywel had a very difficult night and woke with a very sore throat. He wanted me to have a chat with the Doctor as he was afraid to ask when he might be able to go home. The Doctor told me Hywel had a chest and throat infection. He said that he was not well enough to go home at the moment and that because of how weak he was it might be an idea to get my son Adam back from university quickly and that we should prepare ourselves for the worst. They were going to start giving Hywel antibiotics which might help him to feel a bit better. I phoned my Mum who lives about forty five minutes from Adam’s university and asked her to collect him and bring him home. Adam packed up his stuff and they were home by 3.30pm that day. Adam came in to see Hywel and then stayed at home with Elliott that night and I slept at the hospice on a reclining chair that was close enough to Hywel’s bed for me to hold his hand all night.

I told Carly and Luke the Doctor had said they should take some time off work so they came to Y Bwthyn on June 29th. This meant Hywel would not be on his own whilst I popped home to take delivery of a hospital bed, so that if the antibiotics worked well he might still be able to come home. 

I was away for about two hours. I got back to Y Bwthyn and when I gave Hywel a kiss and said hello he looked straight through me and didn’t say anything. I was a bit surprised and asked how he’d been. The kids said he’d been fine and had just been having a joke with Carly’s boyfriend Jon. I went really close to Hywel then and tried to talk to him again, he didn’t move and I could feel a searing heat emanating from him. He was looking straight at me now but was unable to speak - the heat coming from him was so intense it seemed to transfer to me and made me feel quite odd so I called the Doctor. She came in and started talking to Hywel and asked if he could see her, he then started to talk a little and said that everything was blurry but he could see her lips moving. The nurses and Doctors said they were going to leave us alone now and we all thought this was it, that Hywel was slipping away. He closed his eyes and slept, and Luke, Carly and I just held his hands and chatted quietly to him. The heat died down and he slept a while then woke up a bit later and was a little bit more with it. The Doctor told me that he may have had a slight stroke. His temperature was very high so he was given some paracetemol and that seemed to help. Hywel kept asking what had happened to him and I tried my best to explain. He kept saying how strange it had all felt and asked me what had happened to him several times. Luke and Carly didn’t want to leave after that, and Adam and Elliott also said they wanted to stay.

We made the hospice our home from Friday June 29th until Wednesday July 4th when, sadly, Hywel peacefully slipped away with myself and all the children with him.

The staff at Y Bwthyn, without exception, were the most caring compassionate people you could ever meet. They gave Hywel such tender loving care and helped him achieve a pain-free, calm, peaceful and dignified death.

Donna Lewis and her husband Martin along with Tim, who had been the guitarist in the band when Hywel played drums for Donna, came to see Hywel on Saturday 30th June and the staff helped him to be awake and well groomed for their meeting. He had been determined to meet Donna and they spent twenty minutes chatting. Donna then spent time with the children and promised Hywel that she would keep in touch with me in the future.

On Sunday July 1st Hywel woke up in the evening to watch most of the European cup final with me, Adam, Luke, Carly, and her boyfriend Jon. He was making us all laugh with his dry remarks about the behaviour of some of the footballers.

On Monday July 2nd, Hywel’s strength seemed to ebb away when he woke. We again thought he was slipping away and he told us he thought he’d be going soon but would watch a film with us all later.

Hywel didn’t wake all day on Tuesday 3rd and the nurses again withdrew and left us, but Hywel seemed to be restless as if there was unfinished business. I read the last chapter of Wind in the Willows to him, as I had been reading him a chapter a day for some time which he had told me he found soothing. He went through another night with a fair few agitated moments.

On Wednesday morning when Hywel still seemed to be restless, I decided I would ask his Minister Owain if he could somehow bring his Mum to the hospice to see him. He told myself and Owain a week earlier that he didn’t want his Mum to come to the hospice, but that was when he thought he might go home.

Owain must have dropped everything he was doing as ten minutes after I’d texted him to see if he could get Nansi to us I had a message to say he was on his way.

So Nansi got to see Hywel and say her goodbyes. She left and it was just me, Carly and Luke in the room. Another hour passed and we didn’t know what it was that was stopping Hywel from letting go.

Carly thought we should play her Dad his songs. So we played some of the songs he had written with Rod and then we played him Always it’s You.  As soon as the first bar of the song played, Hywel’s breathing slowed down and became much quieter and gentler and as Adam and Elliott joined us in the room, he stopped breathing and was gone.

We were all incredibly sad, relieved that the pain and suffering was at an end and at the same time deeply moved by the way Hywel had chosen to leave us.

We’ve had so many wonderful tributes about Hywel given to us since he died as Hywel touched and inspired so many people. It was a difficult decision to write down and share the experience of Hywel’s passing with you, but he has been so candid and honest about how he lived with his cancer that I thought I owed it to him to share with you his dignified and gentle death.

Hospice Care


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.