Wednesday, April 30, 2008

Last Thursday UCH visit

Last Thursday I drove Mum and dad to University College Hospital in London for an appointment. Dad's myeloma is rampaging away atm, and neither Worthing or Hammersmith Hopsitals can give him any treatment. The drug he hasn't tried is called Velcade, and is recommended by NICE for the first relapse only because it is so expensive (£30,000 + per course). One dr at Worthing has obviously trawled around and has found out the UCH will give it to dad! So this was his first appointment. We weren't sure what we were going for, an assessment perhaps? Would they say today whether they would give it to him?

My BIG worry for the day was driving into Central London and then finding somewhere to park. UCH is just off the A40 - same road as Hammersmith but further into London. So I went round the M25 and along the A40. It didn' look very much further after Hammersmith, but it took us 1 hour! By fluke I managed to drop them off at the door of the building they wanted, and drove away to find a car park. I did find a little garage, (NCP), where you drive the car into a lift and they park it for you! (It was to cost £33 for 6 hours!!!) By this time I felt quite sick with nerves and had a headache, so I stopped in a Starbucks for a coffee before walking back to the hospital.

Mum and Dad were still waiting, so I went into to see the Dr with them. She was really nice and went through Dad's myeloma history. She said that he wpould indeed be able to have Velcade, and recommended a regime of 2 days per week, I week off. That's slightly better than the normal regime, which is 2 days per week for 2 weeks, 1 week off, and will be more manageable as we will have to go up there for the treatment.

She suggested a blood transfer, and thought he might have to stay in overnight, but the support nurse came and said they could do it in a couple of hours if we started now! We folloe=wed her downstairs to the day ward, and Dad was immediately hooked up to the machine! (WOW! Such efficiency compared to Worthing and the blood transfusion las t weekend!) This procedure exchanges the blood plasma for an artificial one, because the myeloma produces very large proteins that cause the blood to be viscous and thus causes poor circulation. WOW! Dad should feel better immediately! Actually, he didn't but that might be because of the stress of the day and the fact he hadn't eaten or drunk anything!

Mum and I left him on the machine and went to get sandwiches. There are several supermarkets on the next corner (Tottenahm Court Road) , so we went in Tesco Express. We took them back and ate them with Dad, then went for a walk down TCRd, and looked in Habitat, and had a cup of tea in a cafe. (loads of coffee shops nearby too - and the British Museum is on the next corner so I know where I will be going next time I take them up!)

We were ready to leave about 6pm. The drive home wasn't too bad compared, we were all very relieved to have got the day over and done with! At least we will know where to go next time, and the staff at UCH are sooooo nice and of course efficient!

I dropped Mum and Dad off at 8.30ish, and was really glad to have a large glass of wine waiting for me at home! PHEW!

As I write this some days later, I feel really positive about these trips. I think it will be very hard for Dad, but can see that he feels hope now, and is therefore much brighter in himself. Mum is happier too. Andrew is taking them up this Friday for another blood transfer, so he will be able to see where it is they go. I am so impressed with the hospital, it really is top hole, second to none! Let's hope the treatment works! But, whatever happens I do think that we have given Dad the very best chance possible, and we'll do all we can to help it all run smoothly.

Tuesday, April 29, 2008

Scrap your day - 25th of each month

I am really looking forward to doing this. Shimelle has challenged us on UKS and her website ( to scrap one day each month for 1 year. She has picked the 25th, which is great, because it is Chrsitmas Day AND my birthday!!!

So we started last Friday, and I took my camera with me everywhere. I want to blog about my day here. I got up at 7.30am, showered, ate breakfast (2 weetabix) then went for a dog walk, straight down the beach. I took quite a few photos, especially of the roads round and about. The tide was low, and we walked along to the yacht club. When we got back, I tidied up a bit, and Anglea and Sarah came for coffee. (I always worry about tidying before they come, because thy're houses are both immaculate!) I have wanted to take a photo of them for ages for my scrapbook, but don't have the nerve to ask them!! (Don't know why!) Today was going to be the day. But Angela turned up straight from the gymn, a bit pink and still in her gymn clothes. She told me she felt a bit embarrassed in front of Sarah. Well of course, Sarah turned up looking absolutley gorgeous and immaculate! So I didn't have the nerve to ask!!!! Instead I took pics of the empty coffee cups. We chatted about Angela's recent holidya to tenerife, and the fact that her son ahs come back from extended skiing in France - no not longer skis! but a two month working holiday - sounds like he had a wonderful time and maybe has caught the travelling bug? Wonderful as he is the one who had menigitis last November. I spent quite a bit of time offloading my stressful day yesterday when I drove Mum and Dad up to UCH for Dad's treatement, but more of that later. I guess that's why I don't blog so much -I can off load to friends both in person and online! Sarah doesn't get a word in much!

Lots of chat and 2 mugs later, they left, and I drove to meet, Lynda, Pam and Chris at Tides cafe in Goring for lunch. We have a lunch date on the last Friday of each month. These are my NCT friends, that I met at coffee mornings when Nicholas and Lucy were babies. We didn't see much of each other for quite a few years, but have started meeting again, and it is great! I had jacket potato with tuna, and an orange juice, having already had too much coffee! We chatted about Pam's visit to an auction that morning, she had bought a Victorian dress and some fans. Chris told us how much she has enjoyed her year off work(her gap yearLOL) and might have next year off too! I of course spent ages telling them about yesterday's drive to London! I don't think Lynda got a word in!

We didn't stop for too long, and when I got home, I spent some time on the computer, catching up with forum chat, and scanning in the old photos of me as a little girl that I am scrapping atm. I have decided to scrap the actual photos, as I wouldn't know where to keep them otherwise, but they are a bit damaged by having been in a 'magnetic' album for years.

Tea was chicken in a sauce (jar) with vegetables. Lucy wasn't in for tea, in fact, I picked her up from school and took her straight over to Tom's. They went to Chichester for a meal with Tom's friends. She has been earning money from me for a while for this! And tonight she caught the train home so we didn't have to go and pick her up.

Maurice came home, ate his tea, then we walked Merlin through the park. I did a bit of scrapping when we got in, making the book for this project. I decided to follow Shimelles' ideas pretty much fully.

At 8pm I watched Gardeners World with my glass of wine and packet of low fat crisps! GW is on for 1 hour atm, and is quite good, I am particularly enjoying Joe Swift on his allotment. Nicholas came downstairs (from his computer) to watch Have I got News for You with us. Very funny! I went to bed quite early because we need to get up early on Sunday because Lucy is playing volleyball at Bath Uni, u16s championship!!! Although I didn't tuen the light off until nearly 11pm because of reading! I am just finishing The Diplomats Wife, and have to say it is a really good read!

Monday, April 21, 2008


Forgive this long post, but I couldn't decide which pages I liked best, so they are all here! This is my 'Scrapbooking Matters' minibook, from a Big Picture Scrapbooking class ( I ordered the book from the States ( It's gorgeous, but didn't half cost alot!!! It worked out atabout £17!!!!! The Who, When and Why pages are chipboard, and the letters are cut out of the chipboard. I have painted them, and then backed them with double sided patterned paper. The What and Where pages are acetate. I painted the brown and blue stripes then stamped the titles with my new Autumn leaves alphabet stamps.

I really enjpoyed doing this book, and it made me think about why I scrapbook in particular! It's great getting the email prompts every day. At the moment I am getting Shimelle's 'No place like home' prompts, but I haven't done anything crafty with them yet. I have just printed them out and they are in a big pile to do later. I am looking forward to starting them, as the home theme ties in nicely with my 'everyday things' scrapbooking this year. I have also signed up for a Little Red Scrapbooking class on journaling, and have received a really scrummy kit, but more about that later!

Wednesday, April 02, 2008

patchwork dog

Here's my little dog that I made on Sunday! I went with burn (Angle on Tanda and various other forums) to her friend Freda's house in Newhaven. I haven't done patchwork really for a very long time, so it was great to do it with someone to get my mojo going! We had a fabulous day, talking, laughing and sewng - very gentle and relaxing. Just can't wait to do it again!
My dog (must find a name for itLOL) is made from an old packet of Laura Ashley patchwork pieces. I do like the colours, very spring like, but they don't go in any room of my house! I suppose they are of ther 1990s, and a bit old fashioned now.

Tuesday, April 01, 2008

Birthday goodies!

My little pile of presents. I have used my BIA to make 1 book so far! I need a bit of practice. I have eaten the Roses already, and played the Duffy CD loads of times! The map is for our holiday, we are staying in a cottage in Dorset and walking the coastal path. Nicholas is coming with us but not Lucy, she is going to Spain with Tom's family. The book underneath is Monty Don's Around the World in 80 gardens. A really stunning new tv series. Can't wait for ther DVD.

Here are all

my cards and ATCs out on my dresser in the dining room. Thsoe scruffy cardboard 12 x 12 drawers you can see sit on top of plastic drawers, and hold a small proportion of my stash!