a glimpse from the attic

Sandra

This is Pete writing, Sandra's husband.

It is with great sadness in my heart that I have to write that Sandra passed away just before 9am on Sunday 13 May.

She was very peaceful and she was with me, her Mum and her brother Mike at the end.

This blog is a testament to Sandra's amazing life - her achievements, her friendships, and her unceasing positivity and passion for life.

High tea

Another video message from Sandra - click here

Trip to the pier

A video message from Sandra - click here

extreme tiredness

Hello. Just checking in with you all. I've been so so so so tired this cycle - sleeping is the new cool. I do it a lot - mostly during the day. Annoyingly, I've had some restless nights - I think the anti-sickness steroids I've had to take are to blame.

I did have a good birthday on Saturday, inbetween sleeps. PP and I had mini Victoria spongecakes to celebrate. I've really enjoyed opening your cards and presents over a nice extended period of days when I've had the energy - thank you all so much for bringing cheer to my sleepy days. X

tea in the North Laine

On the occasions that I do feel up to going out we try to make it a special treat. So here I am having tea in the North Laine the other week. Click here to see me enjoying my cuppa!

a dab of paint

I haven't painted anything (except bedroom walls) for ages. It was great to have an afternoon of it the other week. Yes, I know the actual tulips are a different colour to those I painted...

Koa Wing creations

Check out my swish Koa Wing craft labels. If I put them on anything I make for myself or for any of the Koa Wing family they will double up as name tags - what value for money. Just like being at school again.

Thank you, Anna and Brighton Vox!

I was sad, really sad not to be able to make last night's Brighton Vox fundraising concert - but I heard they sang beautifully and raised nearly £400 for Macmillan Cancer Support! Brilliant! Great organising from Anna and support from others, and thanks to everyone for generously giving their time, energy and cash on the night - you're all so wonderful. Big Hugs! (photo taken by MD on his cameraphone)

bowel cancer information

OK, so only now am I only vaguely starting to feel ready to find out more about my illness. I think this is only thanks to all the love and support I get from PP and my family (my in-laws as well as biological), and also from having counselling sessions with the Macmillan nurse counsellor and also making a new friend in L who has breast cancer and is of similar age to me with a good perspective on life and good sense of humour.

I also wonder whether you, my friends, are feeling ready to find out more, too, or whether you have already been looking things up. I think I will point you in the direction of a few relevant sites that might be useful:

Cancer Backup is a very useful site with good information. There's also a section about 'Talking to someone with cancer' that you might find helpful. For me, the part about keeping in touch is great - I love your cards and letters, and as before I still prefer these to emails or phonecalls as they are less disruptive to both PP and I. www.cancerbackup.org.uk

Macmillan Cancer Support have an excellent website. You may already know that Macmillan are a brilliant organisation. They have helped me, PP and my family from the time of my diagnosis to now: the brilliant colorectal cancer nurse specialists MD and KD whom I am still in touch with; the district team based at the Martlet's Hospice (LC the Macmillan nurse is brilliant, and so is my complementary therapist MC); and the Macmillan nurse counsellor AA based at the Sussex Cancer Centre. Without these people's support I'm not sure I would be coping that well. www.macmillan.org.uk

Beating Bowel Cancer have some useful links. I'm hoping to be part of their national patient voices group. www.beatingbowelcancer.org

Bowel Cancer UK are a campaigning organisation for improving bowel cancer care and raising awareness. www.bowelcanceruk.org.uk

Cancer Research UK are probably the most well known cancer charity in the UK. Their website is also packed with useful patient information. You may remember my blog entries from summers 2004 and 2006 - the annual Race for Life is an all-women 5km fundraising run. I know KW, LW and VC have signed up for this year's run. Perhaps others might, too? There are other runs and fundraising ideas for the other cancer charities, too. www.cancerresearchuk.org

A concert in aid of Macmillan Cancer Support

Brighton Vox Community Choir

plus

Too Many Strings

are holding a concert in aid of Macmillan Cancer Support

at St Margaret’s Church, Rottingdean

on Sunday 18th March

at 7pm

£4/£3 concessions

Join us in a concert of joyful folk and contemporary song from England and around the world, supported by some of the finest folk musicians in the Brighton area.

The concert will be in two halves with a break in the middle when the audience may purchase drinks at the bar.

www.brightonvox.org.uk
www.stmargaret.org.uk
www.macmillan.org.uk

extra time

Here's me on the seafront last week before going in for my chemotherapy session. Click here for my latest video message. As before, my lips don't seem to be in synch with the audio. This isn't a new Police Academy type talent but a technical fault of some kind.

I got back home that day to find two wonderful parcels from NP and LC - thank you!

casting off

Click here for my first video message.

Fat Tuesday

Happy Mardi Gras everyone! Particular hello to B in Sydney who is doing the communications for Sydney's 2007 Mardi Gras season, and to dear W in Uruguay who missed Brazil's Rio de Janeiro carnival and then missed a lot of the Montevidean carnival because of the bad weather! Awwww!

Anyway, get those pancakes cooking!

Music to have chemo by

Went in to the Sussex Cancer Centre for my next dose of Oxaliplatin the other week. Part of the ritual is to have a cup of tea and a packet of cheese and onion crinkly mini cheddars from the WRVS teabar. This happily reminds me of tea breaks at work and prepares me nutritionally for my drug. Yes, it does.

PP and I had a good crack at the Guardian quick (or not so quick) crossword (an idea poached from M who did the same thing with her partner when she had chemo). I have also discovered that there is some music which is particularly suitable for listening to whilst my arm slowly starts to hurt more and I slip into nausea and fuzzyheadedness. Here is a list of 'Music to have chemo by'. If you ever have to have chemo, I recommend:

Babe you turn me on (Nick Cave and the Bad Seeds)
I heard you looking (Yo La Tengo)
Jackson (Nancy Sinatra and Lee Hazelwood)
No scrubs (TLC)
My mistake (Chimp)
Movies of Myself and Crumb by Crumb (Rufus Wainwright)
Neighbourhood # 1 (Arcade Fire)
Girlfriend in a coma (The Smiths) (a bit dark...)
You should know (Assistant)
Don't steal our sun (The Thrills)
Messiah ward (Nick Cave and the Bad Seeds) (also dark)
Sunshowers (M.I.A.)

By the end of the infusion I feel sick and woosy, so gingerbreadmen, mint humbugs and hot chocolate does the trick.

cold treats

Starting my next chemo cycle tomorrow... I have decided to make the most of my better days by eating ice cream or sorbet every day before I have to avoid all things cold. Yesterday was Cookies and Cream, the day before was mango sorbet, and today will be caramel. Not a bad life, eh?

Snow all over the UK today, though not on the south coast. No snowmen for us, then.

Cuckfield

This week PP and I drove up to Cuckfield - it's about 15 miles from home. PP was born there, so it was nice to have a look round and also to visit my friends' craft shop. Felt like a kid in a candy store - they have a lot of interesting stuff there, and they also run stained glass workshops and card making and knitting clubs. Have already nearly finished a little scarf out of some lovely yarn.

By the way, did you know it's Woolly Hat Week this week?!

One ring...

It's finished! I'm very chuffed with my first silver ring.
M said, 'Remember the process - cut, hammer, shape, then set in fires of Mordor'.

Blogger/Picasa are playing up - apologies for the absent photos in earlier posts - I'll try and fix them sometime.

aspirational magazines...

V & T got me a subscription to Marie Claire for Christmas - they know my taste for aspirational magazines... March's issue came in the post today - with an Ollie and Nic brolly - ace!

Only trouble now is wrestling the mag off PP...

Su Doku madness

In a sad attempt to keep my brain cells a little active, I have been giving Su Doku a go. So far, it's driving me bonkers, and I'm not even doing the 'Expert' or 'Advanced' puzzles as the photo suggests - just the easy ones!

Thanks, E for the book!

Look at the snow!

Creme Eggs in January?!

Who's complaining? Yummy! Thanks, PP! X

lovely flowers

I love flowers so much - when I was in hospital (or these days I prefer to say 'the clink' or 'the can' for some reason) and shortly after, I was barraged with beautiful flowers. It became a daily experience - the flat was like a wee florists. Then the flowers stopped arriving and things seemed sparse again. Until the last few days when I've had another lovely run of petals - thanks to M, V, V&T and E! Thank you so much. X

hammer time

Yesterday evening I went to my first metal jewellery class. I almost didn't make it cos I was feeling very tired. PP convinced me to pop along, at least for a little while, and I'm glad he did because I had a brilliant time. The tutor is excellent, and the group is small enough for us to all get a lot of individual attention. It was really fun annealing (blow-torching), quenching, hammering (the room sounded like a Stomp rehearsal), measuring, cutting, filing, bending and pickling (yes, pickling... using 'safety pickle' to clean the metal of dark oxides and grime from heating and handling). I've almost finished my first ever silver ring! I'm not sure if I'll be able to go to all the sessions, but my aim is to at least finish this one piece in ten weeks. Here it is:

hair and underwear...

My pals Luke and John of Nizlopi fame were supporting jazzer Jamie Cullum on his European tour when they heard the news of my diagnosis. Luke's gf Kate suggested they write me a song, and she filmed it on a wee handycam. Sadly, later that evening the camera was stolen, and I had wondered whether the footage would someday anonymously turn up on You Tube...

Luckily for me, you, and the whole world, Igor, the French production manager, also filmed the song, and Luke sent it to me last week. He's given me permission to post it on You Tube and share it with you. So here it is (sorry if your browser is showing it all spilling over to the right - for some reason blogger doesn't obey my HTML!):

P.S. I have black hair and I like wearing pants.

National Portrait Gallery

PP and I went to the National Portrait Gallery on Friday to see the David Hockney Portraits exhibition - it was ace! We also popped into the Chinese Families in Britain exhibit - had a go on the etch-a-sketches...

prickly fingers and toes, horse pills and tiredness

I am starting chemotherapy in three-week cycles. I'm going to have six cycles and a CT scan and see what my oncologist has to say.

I go into the cancer centre for an infusion of a drug called Oxaliplatin - although the actual drug infusion only takes two hours the whole day is taken up with waiting for the hospital pharmacy to make it up with extra drugs I need (steroids and anti-sickness medicines) in sterile conditions, talking to the nurses about the treatment and checking my blood results from the previous day, eating sweets and drinking tea and hot chocolate, chatting to PP. By the end of the infusion I have for the past two occasions felt 'woosy' and nauseous so I've had to hang about while it subsides. My eyesight is also affected - I get a strange 'blacking out', a bit like when you get up too quickly and there's the weird black fuzz, but in slow motion. It's a bit disturbing but it's only occasional so far and lasts for just two or three days after the infusion.

Me getting my Oxaliplatin infusion

Once I get home I start a 14 day course of Capecitabine - three horse-pill sized tablets twice a day. It isn't so bad - I'm getting used to the routine, the tiredness, nausea, weird prickly hands/toes with the cold (most are side effects of the Oxaliplatin), but it's a great feeling when the fourteenth day is approaching and I can see the packet emptying. I'm still taking my post-operative medications for pain - morphine and paracetamol, and two good anti-sickness tablets. So the drug regime looks something like this each morning and evening:

Day 14 is coming up, so I'm going to make the most of it before I have to go in for the liquid again.

Back on the Blog

I’m back. For now, at least. For some time I had considered deleting this blog: I certainly hadn’t thought of starting a new blog, yet alone continuing this one, but somehow it feels right to return to this one. I hope this will help me (and maybe some of you) in the future. Feel free to add your comments - I’m sure they will be added to the no doubt plentiful spam comments I will receive. I can’t promise to blog a lot or respond to questions and comments – my energy is limited and my time is valuable.

Right, let’s briefly catch up on past events…

Since doing the Race for Life in July plenty has happened… Trying not to be too flippant about it, the very major things were: (1) I handed in the complete manuscript for my first edited book, (2) I was ill and off work for weeks and what we thought might have been some strange tropical disease turned out to be bowel cancer, and (3) I got married!

(1) The Book

After working hard on an edited anthology of wartime Mass Observation diaries from October 2005 to June 2006, I sent off the full manuscript to KS at the Folio Society. Since then, it has been checked and copy edited, pictures have been selected and proofs made. I’m sending my copies back next week. We’ll see a finished version in the coming months – it will be available to buy from the Folio Society in June – friends can get copies through me - let me know!

http://www.foliosoc.co.uk/

(2) The Cancer

I had stomach cramps for some weeks, and August, September, October were months filled with vomiting, pain and sleepless nights. PP was working full time in a new job and nursing a sick partner at home – it was not ideal. I had a brief spell in south London with my Dad and younger brother A (Mum was in Mauritius and China seeing family), during which I had some great chats with my Pa.

I also spent many occasions on the phone to my GP, who referred me to a gastroenterologist at the local hospital. While waiting for an appointment I spent a lot of time waiting in doctors’ waiting rooms, having blood tests, poo and wee tests, trying different anti-sickness medications, all to no avail. There was even a short spell at the A&E department which didn’t help to shed any light on my mystery disease.

Once I did get to see a consultant gastroenterologist, he examined me and ordered numerous tests to be completed within four weeks – comprehensive blood and stool tests, chest x-ray, ultrasound of my abdomen, gastroscopy and colonoscopy. I didn’t get to experience the last two tests because the week before I was due to have them I was called in for an urgent CT scan because my ultrasound had shown some ‘shadowing’ on my liver. The CT scan showed a tumour obstructing my bowel and secondary growths in my liver.

The next day I was admitted onto the digestive diseases ward at the local hospital and the following morning (Thursday 9 November) I had an operation to remove the obstruction. I stayed in hospital for twelve nights.

Shocked, upset, numb, stunned, scared, dumb-founded – a rollercoaster of emotions and thoughts ran through me, PP and our families. I was so very lucky to be cared for by the excellent staff on the ward who kept me feeling positive and looked after me with such care and humanity. I can truly understand why people develop Munchausen’s syndrome, the people are so lovely…

I also got moved to my own room with a sea view! En suite bathroom, fresh towels and bedding every day - like being in a hotel with drugs on tap! The only let-down was the food - you'd think being a ward full of patients with 'digestive diseases' that they might have tried harder. Sadly, not. Packet soups, limp salads, overcooked food and jelly and ice cream. It was sad cos the people bringing the food round were very sweet and kind, and I always accepted with an embarrassed smile... Thank god for build-up drinks - I recommend the chocolate milkshake ones.

Oh, and that first overboiled, dark brown cup of tea after being Nil By Mouth for a couple of days - blissssssssssss! Better than morphine.

PP helped me to send an email out to friends while I was recovering from the operation and I asked people to write to me with their news. It was a great comfort to read the letters – to my delight there were many – and the dedicated keep the epistles coming these days.

The best thing that happened while I was in hospital is PP asking me to marry him - I said 'Yes', of course!

I'm now undergoing a course of chemotherapy to slow down the growths on my liver. There’s clearly much more to say about this and life with the big C - more will follow with inevitable photos.

(3) The wedding!

PP and I got married on 1 December 2006. It was the most wonderful day of my life, ever.

Future posts on 'How to Organise a Super White Wedding in Just Two Weeks' to follow...

http://www.peteandsandra.co.uk

The Stroll For Life

Here's me sauntering along to the finish line today, in the sweltering heat. Thanks so much to everyone who sponsored me. If you haven't sponsored me and would still like to, you can go to my online page here www.raceforlifesponsorme.org/skw, for another two weeks or so, or send me a cheque payable to "Cancer Research UK" to my home address before 14 July.