Waiting

Cathy

Once again I am home alone whilst Hywel is on a hospital operating table. He had such a good week following the Tenovus Ball we were starting to look forward again and daring to think about going away for a short break not too far from home. Hywel has managed to get his tube feeds up to four a day, has eaten a little bit of soft food and enjoyed cups of tea now his taste improves whilst the effects of the first infusion of chemo wears off. On Saturday we went out in the morning for a drive in the new car Hywel has treated himself to, and his daughter Carly came over at lunch time to spend some time with us. Hywel had some soup and I made Elliott hotdogs. I used the small tinned hotdogs that are soft and mushy and asked Hywel if he wanted to try a bit of one. He had a really tiny piece which he chewed really well before swallowing, but it got stuck so he spent the next half an hour wretching, trying to eject it from his throat. Then all afternoon he felt as if something was stuck, and if he tried to drink anything he was just bringing it up again. After this had been going on for a couple of hours Carly and I suggested it might be an idea to go to A&E to see if they could help him dislodge it. Hywel was adamant he wasn’t going there as he would be surrounded by loads of illness and infection right in the middle of his chemo session.

By 6pm the situation hadn’t improved so I persuaded Hywel to let me at least make a phone call to let A&E know his concerns to see if he could avoid the waiting area. One of the Doctors said they would try to see Hywel quickly - as long as no major traumas came in in the meantime - but that even though there was a risk of infection it was important for him to be seen.

We got to A&E around 7pm and there were only five people in the waiting area. We were amazed - during my last couple of visits with Elliott the waiting area has been packed and we have spent four or five hours there. We speculated that everyone was out celebrating Wales’ victory over Italy in the rugby and Saturday night TV was keeping people away. We were seen very quickly and Hywel was referred to the ENT ward. He was put in a bed and given muscle relaxing injections and some Diazepam to try and relax him more. He was angry and upset that yet again he was facing another set back. He'd made plans to go out with some friends to an exhibition in Worcester the next day and he would now miss out and be spending more time in hospital. He was angry with me because I had given him the food which caused the problem, and he wished he'd just stuck to soup and liquids and accepted that that was all he could manage. He had been eating a bit of mash potato with corned beef and gravy a week or so ago so we had thought a soft hotdog sausage would be a similar consistency.

The buscopan injection didn’t make any difference, he could still feel the blockage and he couldn’t swallow any water. He was admitted and told the injections would be tried again in the morning and a decision made from there.

I asked my friend June to sit with Elliott when I realised we were going to be a while, she then stayed on so I could take an overnight bag back to the hospital. It was 11pm by the time I returned and it took me twenty minutes to find a way in! I dropped the stuff off and left after a quick chat with nurse practitioner who told me it was likely Hywel would need surgery to remove the blockage.

Hywel was less angry the next day but exhausted by all the wretching and not being able to clear his throat. They had tried the injections again in the morning but to no avail. His consultant spoke to me in the afternoon as he was on call that weekend and said he still hoped that the food might dislodge itself but that Hywel was on the morning list for surgery if it didn’t.

I sat with Hywel through visiting in the evening. He told me all he wants is for the surgeons to stretch things enough for him to be able to share a cup of tea with me when we drive down to Ogmore to sit by the sea. He will use his feeding tube as much as he can and stick to just soup. I spoke to Hywel at 9am this morning and he was gowned up and waiting to go down. It is now 11.30am and I am waiting for a call to tell me how it went. I’ve tried ringing the ward a few times but haven’t got an answer yet. Will let you know how it goes.

You shall go to the ball.......

Even though you feel like crap. That wasn't in Cinderella.

Well, the big day for me had finally arrived. The Tenovus Annual Charity Ball. An important event on the calendar and an opportunity to fundraise as much as possible to help with much needed services to combat this evil disease. I have just spent the last month going through hell. It has been four weeks since my stomach PEG was fitted and four weeks later I still have an infection in the wound. This isn’t helped in the slightest by having commenced chemo two weeks ago, plus my immune system is shot to bits at the moment. The minute my antibiotics come to an end I’m back on another lot.

I have also begun to realise the huge social implications of not being able to eat normally. They really are massive and have an enormous impact on my life. This is something I struggle to come to terms with. The simple pleasure of eating a meal with my family or friends, or going out for a meal has now disappeared and again I have to adjust my life to cope with it. It’s incredibly difficult to go to a function complete with five course meal knowing that firstly I cannot eat any of it and secondly I have to watch everyone else enjoying theirs!

Day five to ten on chemo was, as I expected, bloody awful. My body was so racked with myalgia that even heavy doses of morphine didn’t touch it and I spent a long time in bed doubled up in pain. Thankfully the worst was over in two days and began easing. Having to cope with this and an infection in an open wound in my stomach really made me feel like giving up at times. It was no life for me and I felt so sorry for Cathy and the kids who had to witness it. But, like before I grit my teeth and grind my way through every second of it, trying to think of some nice things to look forward to, like the Tenovus Ball.

Myself and Cathy at the Ball

March 2nd arrived and I had been looking forward to this event for a long time. I didn’t feel too bad during the day so I dressed up smartly in my dinner suit. Cathy had her hair curled and put on a new dress, and we both made our way to the Coal Exchange in Cardiff. We had booked a table for ten people. Ourselves, my eldest two children and partners and some very special friends. It was a lovely evening. I had been asked to say a few words in a short question and answer session and even though I was facing three hundred people including Rob Brydon and Lawrence and Jackie Llewelyn Bowen I was unfazed by it. I feel it’s extremely important to be given the opportunity to speak publicly about my cancer experience in the hope of breaking down some of the myths and barriers that surround it. Our choir were also singing at the event, so Cathy took part in the performance. Sadly I was unable to perform with the choir as my voice is a problem for me again since my surgery six weeks ago.

Myself and daughter Carly

There were times throughout the evening that I found hard going. I tried some of the soup but that was a mistake and I spent the next half hour in the toilet bringing it all up again. Ah well, worth a go I suppose. I had some special friends travel down from Scotland to be with me. I say special because I had never met them before but we had got to know each other over the last twelve months through Twitter. It was a pleasure and an honour to meet Heather and Stephen and it felt as if we’d know them for ever. Luckily we were able to meet the following day and chat for hours without me having to struggle to make myself heard. Can’t wait to meet them again. Lisa Derrick was there as well. We didn’t know each other a year ago but without Lisa this blog wouldn’t exist and she has given her time and effort to help build, promote and forward it without hesitation. For that I’m extremely grateful. June Bowen Jones was there for me, minus her husband Martin unfortunately, two people who have been unquestionably supportive since the beginning of my cancer journey. My two eldest children, Luke and Carly were there with their partners Eloise and Jon and it was lovely to have all these people who have meant so much to us together for the night.

By 11pm I was feeling shattered and it was time to go. It had been a hard evening for us all emotionally, and for myself a physically and mentally draining one, but I was so glad I made it there, I wouldn’t have missed it for the world.

Family history of cancer can be an evolving story

By Shari Roan, Los Angeles Times / For the Booster Shots blog

1:12 PM PDT, July 12, 2011

Family history is an incredibly helpful tool for doctors trying to determine a patient's risk of cancer. But one family history intake will not suffice. Rather, family history needs to updated every five or 10 years, according to the authors of a new study.

Researchers at UC Irvine looked at thousands of adults with a personal or family history of cancer and found that many changes in one's family history of breast, colorectal and prostate cancer occur between age 30 and 50. Based on their findings, the authors suggest that a patient's family history (of first- or second-degree relatives) of cancer be updated occasionally.

Family history is often used to determine how often a person should be screened for various types of cancers, the authors note. People with an increased risk due to family history may need to undergo more screening or start screening at a younger age.

"Family health history data are more likely to be collected at the initial clinic visit and are not adequately updated during follow-up visits," the authors wrote. "If a patient's family history is not updated during early and middle adulthood, the opportunity may be missed to intervene with earlier or more intensive screening that maximizes the likelihood of detecting cancer at an early, treatable stage."

The frequency of cancer screening tests has become a topic of debate in recent years as medical experts try to balance the benefits of screening against the potential risks and costs and move to personalize screening recommendations. With the increasing use of electronic health records, it may become easier to efficiently update family history records, said the author of an editorial accompanying the study. But how much family history matters when personalizing cancer screening recommendations is not clear.

"[M]uch needed evidence about the population health benefits of early and intensified cancer screening according to familial risk has yet to be developed," wrote Dr. Louise S. Acheson of Case Western Reserve University School of Medicine.

The study is published in the Journal of the American Medical Assn.