One year on...

Just a note to apologise for not updating the blog for a long while. It is wonderful to know that so many people do keep checking it and I hope that re-reading Sophie's posts has brought a smile to your face as it does for me on hard days.

We have a video Soph recorded for this blog that we never got to upload, which I'll put up later today if I can make the tech work! For now I just want to thank all of you who have already contacted Mum, Dad, Iain, Kofi, Cali, Jag and I to let us know you are remembering Sophie in an extra special way today - one year on from her sudden passing on 14th December 2009. There are lots of cupcakes being made which is great as I think we all need a little sugar rush in this cold weather.

If you have any special memories of Soph you'd like to share please do post them here - it is always wonderful for us to hear other treasured memories from friends.

Light a candle, say a prayer, eat a cupcake, tell everyone special you love them.

Thank you. Alex. xx

Two teams running 10k and 5k for Sophie - please sponsor us!

Thank you to all of you who have donated so generously in Sophie's memory. We have over £7000 on her Macmillan page, which is an incredible sum that will do such a lot of good for everyone affected, directly or indirectly by cancer.

All of us have been coping pretty well thanks to the incredible support of family and friends but we are now ready for some positive action in Sophie's memory and to continue to support her two favourite charities, Macmillan Cancer Support and Cancer Research UK.

Therefore, Kofi, Cali and I are running, with Sophie's friends Gemma, Scott, Iain, Angela and Carly, the BUPA 10k in London on 31st May for Macmillan Cancer Support.

Mum is also tackling a running challenge with her wonderful friends from Bruton, Caroline, Bridget, Denise, Julie and Deborah. Running as 'the King's Ladies' and they will be fundraising for Cancer Research UK. As well as running the 5k race they are holding a number of fund-raising events (including tea parties, mufti days at school etc) in Bruton and Wanstrow so do get involved!

We are hoping to get the total for Sophie above £10k so if any of you would be kind enough to sponsor us yet again we would be immensely grateful! Both links are below so thank you in advance for your incredible continued support.

http://www.justgiving.com/10k-for-Sophie

http://www.raceforlifesponsorme.org/rosieparr

Thank you.

Alex.

A LIST OF THANK YOU'S

Thank you to each and every one of the 600plus people who braved the rain, sleet and snow to join us for Sophie's funeral last week.

It was truly a celebration of her adventurous life and a testament to her remarkable strength, humour and love that so many of you came to share the day. For us, it was as positive an experience as such an occasion can be and we were so very proud of Sophie and grateful for all the support from the community, school, friends and family.

Thank you also to all of you who brought cupcakes, brownies and other goodies in Sophie's honour. She would definitely have approved of the sugar overload in the Mem Hall!

Those that we didn't manage to devour were shared out to the elderly residents of Sexey's Hospital, the almshouse in Bruton; and with the doctors and staff of Bruton Surgery.

Finally, thank you to all of you who have so generously donated to Sophie's justgiving site for Macmillan Cancer Support. We are rapidly approaching £5000; a staggering sum, which she would have been ecstatic about! Thank you for this tribute to our darling Soph.

Alex. xx

Sophie's Funeral

Sophie's funeral will take place at 12noon on Tuesday 29th December 2009 at the Church of St Mary the Virgin in Bruton, Somerset. All are warmly invited to wear a dash of something bright and colourful.

Family flowers only please - we would be grateful for any further donations to Sophie's memorial page for Macmillan Cancer Support through the link on this page. If you prefer not to donate online, the funeral directors, W.J. Trotman can also take donations:
W.J Trotman
Ashdene
Frome Road
Doulting
Shepton Mallet
Somerset
BA4 4QQ
Telephone: 01749 880271

After the service a reception will be held in the Memorial Hall at King's School, Bruton where cars may be parked. The school is immediately next to the church. There will be a private burial in our village of Wanstrow before the family joins the reception.

Mum has suggested that we have a special table for cupcakes, 'rocky road' and any other goodies that guests might care to bring to share in Sophie's honour.

Thank you all for your love and support.

Alex, Malcolm, Rosie, Iain and Jag.

Sophie Julia Margaret Parr - by Alex, big sister.

As many of you already know by now Sophie had a tough few days at the end of last week and unfortunately she went into Intensive Care at the Whittington Hospital in Archway on Sunday morning and passed away soon after midnight on 14th December 2009. We are all lost without her but trying to look ahead the way she always managed to.

This blog was a really important way of Sophie managing the news of her diagnosis, coping with the pain and worry and showing off her talent for writing, her incredible, quirky sense of humour, her deep hatred of bananas and her magical sparkle that made her so special to all of us.

A special thank you to Audree for helping her to create it and thank you to all of you who read, commented, emailed or spoke to her about how much you liked it. She was thrilled with all the positive feedback and had great plans for the blog and for her future.

We wanted to at share the happy moments of Sophie's last week, which include the fantastic party she and Cali held in their flat on Wednesday 9th December and which gave her so much fun and laughter. I've uploaded these photos below.

We also have a video Sophie had recorded and planned to upload here so we will put it on soon. In true 'Sophie-style' her planned 30seconds turned into nearly 20minutes but she really enjoyed making it and was looking forward to developing a TV show with her wonderful Kofi one day.

Many of you have already donated to the Just Giving page Sophie established for Macmillan and we will turn this into a memorial page soon. If you would like to make a donation in her memory we would be hugely grateful.

I will post details of her funeral as soon as I can but it will likely be the week after Christmas, (28th Dec onwards) and will be at St Mary's church in Bruton, Somerset.

If any of you would like to contact me in the mean time please do email me: aknotay@googlemail.com

If you would prefer to write, the family will all be at home for the next few weeks:

Pear Tree Cottage
The Street
Wanstrow
Somerset
BA4 4TF

Thank you all for your love and support and for sharing your memories of Sophie with us. It is helping us through this incredlbly difficult time to know how much she was loved by so many people.

Alex.

Sophie's Party - 9th Dec 2009 part 3

Sophie's Party - 9th Dec 2009 part 2

Sophie's Party - 9th Dec 2009

WAITING GAME - Tue 8 Dec

This afternoon I met with my lung consultant, Dr Popat (!) and came out of the appointment feeling a lot confused after a heck of a lot of big medical words. Despite being told that I'll either be starting chemo this week or next week, it now turns out there'll be a bit of a delay, which is annoying as I was psyching myself up to start chemo soon. Dr Popat explained that because I fit into a certain category as a young, non-smoking woman, it's possible that my cancer growth has abnormal genes. If I am an abnormal person (i'm sure Ally will be delighted to have this officially confirmed!) then there is a drug called Iressa which can be taken orally as a tablet and it might be able to 'switch off' the cancer growth, which sounds pretty good and might be a more preferable alternative to chemo. So in 2 weeks I'll find out whether I qualify as abnormal, and maybe I'll start Iressa action. Otherwise Dr Popat will go ahead with chemo. Macmillan have a few more details about how Iressa works:

"On the surface of many types of cancer cell are structures known as epidermal growth factor receptors (EGFRs). The receptors allow epidermal growth factor (a protein present in the body) to attach to them. When the epidermal growth factor (EGF) attaches to the receptor, it causes an enzyme called tyrosine kinase (TK) to trigger chemical processes inside the cell to make it grow and divide.

Iressa® attaches itself to the EGF receptor on the cell and prevents the receptor from being activated. This stops the cells from dividing. Iressa® therefore has the potential to stop the cancer cells from growing. It works in a different way from both chemotherapy and hormonal therapy."

So there are still some big decisions to be made about my treatment and I have another 2 weeks of waiting ahead of me. I feel nervous about my symptoms getting worse, I feel upset at the thought of having treatment so close to Christmas and I feel frustrated and helpless that we can't start fighting the cancer now.

Saying that, the next fortnight would probably be a good time to look into complementary therapies like massage, acupuncture and meditation. Hopefully when the time does eventually come for treatment I'll be more mentally prepared to find a happy place and any recommendations in this area would be much appreciated!

Finally I just wanted to thank everyone for all your fab comments on my blog...I'm really getting a lot personally out of using this creative space and I hope you'll stay with me on this long, eventful journey and you continue to enjoy what you read! xxx

WEEKEND FUN - Mon 7 Dec

Vroooom! On Saturday Ally and I hit the shops in the wheelchair. Then my wonderful housemate from uni, Dr Helena came to stay and we had lots of fun watching X-factor (JOE TO WIN JOE TO WIN JOE TO WIN) and yesterday we ransacked Homebase and bought Jag's first Christmas Tree! Pretty ain't it! Still needs something on top though...

LOSE MY BREATH - Sat 5 Dec

HIT ME! It's not even 11am and the day has not got off to a very good start. Struggling as ever with my UFO sized antibiotics this morning I got a tablet stuck in my throat which was bad enough, and then in the frantic choking that followed I managed to miss my mouth completely and instead pour orange squash up my nose. Then in the shower I got some rather large chunks of exfoliator in my eye (cue highly unattractive wailing) and then in an attempt to calm down I turned on the radio and Charlotte blinking Church was singing Panis Angelicus (cue more highly unattractive wailing). Bad things happen in 3's don't they, a bit like my tumours I guess!

I didn't sleep at all well last night, hence the grumpiness. As my Daddy would say I am behaving like a grumpfuttock today. I challenge you all to add this wonderful word to your daily vocabulary! My breathing has started to get more painful and very shallow so I had to sleep sat up with my head propped up on the majority of pillows in the Notay household, which sounds very luxurious but really wasn't very comfortable. Also lying on my sides or my front really hurts...my organs feel like they're fruits ready to drop off a tree! I'm definitely feeling more aware of where the tumours are so I really want to get chemo started asap now. My doctor called yesterday and thinks that the most likely origin of the cancer is in the lung, although I'm still mystified as to how I've got lung cancer. Answers on a postcard please! So the goal for today is to chin up and get some fresh air outside and stop grumbling and coughing like Mutley!!

A GOOD DAY - Thurs 3 Dec

I had such a good day today. I went back to visit my fantastic ex-colleagues at the Royal Philharmonic Orchestra in Clerkenwell for lunch and then revisited the office for a cup of tea and a catch up with the RPO crew, who I miss very much indeed! Then I caught a taxi to Ally's office in Baker Street, spent a bit of time being put to work proofreading before I decided to venture out on my own for the first time in about a month!! I took the bus from Baker Street, down a very busy Oxford Street over to see Kof in Tottenham Court Road. I know it doesn't sound like much but I have been so dependent on others recently and I felt very proud of myself for taking the bus down Oxford Street during full-on Christmas shopping craziness! My chest was hurting a bit so I had to make sure I walked slowly and calmly but it was a real confidence boost to get myself around without other people's help. I'm sure my lovely Mummy is panicking as she reads this (sorry Mum!) but I felt I gained back a sense of normality which I haven't felt in a while. Back in Reading now for the weekend and looking forward to catching up with more friends before the chemo begins.

ONE WEEK IN - Wed 2 Dec

So one week after my diagnosis and it is really sinking in now that this is not going to be easy. We spent last Thursday and Friday at the Marsden speaking with the doctors. They are keen to work out the origin of the cancer (they're not quite sure yet) as once they've done this they can find the most appropriate chemo drugs and target the cancer more quickly. And this Monday and Tuesday I was back in for some more tests which were pretty horrible. For the EDTA test I was injected with a small amount of a radioactive chemical and then I had blood tests at 2, 3 and 4 hour intervals. This measures how well my kidneys are functioning and flushing out the drug. I wasn't glowing by the end of the day but my arms were getting nicely bruised. My veins also seem to be retreating, sensible things, so finding one that's willing to give blood is proving more difficult and making me more nervous every time I need a blood test but Cali was great at distracting me and we kept talking about travel plans while the doctor did his thing. I hate it when they tell you every detail, makes me very squeamish!

Yesterday I had a bronchoscopy...basically they stuck a wire down my throat and got some samples and footage of the tumour in my chest. I had to fast from midnight before and wasn't allowed to eat or drink anything until 2 hours after the procedure which was not nice as I am a grumpy moo when I'm hungry. Poor Kofi! I was injected with a sedative which was meant to relax me but I felt quite panicked with a tube down my throat and was spluttering quite a lot. The worst thing though was that they sprayed anaesthetic at the back of my throat and it was BANANA FLAVOURED! I HATE BANANAS!! I'm laughing about it now but at the time it was miserable! So it didn't get off to the best start but the doctor said they got everything they needed and I've spent the last 24 hours resting and trying to soothe a very sore throat and nasty cough. Nice to have a hospital free day though.

I've received some beautiful emails, texts and good wishes from so many people, many of whom I'd lost touch with, so I've made a folder in my hotmail account called 'Amazing People' and all the emails are going in there so I can read through them on down days. I still don't have a date for chemo and am feeling apprehensive about it, and especially worried about the side effects but it's the biggest step to fighting the cancer so I am trying to keep sunny side up and looking forward!

MOVEMBER - Sat 28 Nov

This weekend was a celebration of all things hairy - I let my mane go a bit mad and my brother in law Jag embraced his inner Mexican bandit with a sombero-tastic 'tache, in aid of Movember which supports Prostate Cancer and demonstrates that fighting cancer isn't all doom and gloom, it can be fun too! This picture is keeping us all smiling and you can take a look at some mightily impressive mo'bros here: http://uk.movember.com/

DIAGNOSIS CANCER - Wed 25 Nov

Diagnosis Cancer is nothing like Diagnosis Murder. Dick Van Dyke is not skipping down the halls singing ‘Chimchimeree’ (although may I take a second to suggest this to the show’s producers?), as far as I know there was no questionable murder mystery taking place in the wards (although smiley Geoff in Ultrasound with the ridiculous bow tie did look a bit suss) and that sense of inane boredom particular to daytime TV was definitely lacking. Diagnosis Cancer, Episode 1 was shocking, scary and very surreal. There were tears from the mother, awkward silences from the Doctor and a feeling from the patient that this was all happening to someone else, not me.

I’d been having really bad pain in my shoulder since September which I thought was muscular tension since it felt like a trapped nerve and I was planning on seeing a physio at some point when I had enough pennies in the bank. Have you seen physio fees lately?!! But at the beginning of November I started to get chest pains and had difficulty breathing. After a quick visit to Alcohol & Emergency, a chest x-ray revealed that I had a growth on the right side of my chest and since then the past 3 weeks have involved an impressive array of tests to try and work out what the problem is. After establishing that I didn’t have TB or pneumonia the Doctor confirmed today that I have 3 malignant cancerous tumours, one on the right side of my chest, one hiding behind my heart and another on top of my right kidney.

To be honest, after so many tests, deep down I was expecting the Doctor to confirm this was cancer. But on a positive note, I also feel sure deep down that everything's going to be fine. I've been more concerned with other people's reactions, perhaps so that I don't have to confront mine. I've already felt all sorts of emotions, at various times strong, scared, positive, confused, excited about opportunities this will bring and the chance to help others, worried about my friends, family and boyfriend Kofi, reflective but best of all, I feel surrounded by incredible love and support from more people I could ever imagine and I know that this will get me through.