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/