Monday 4th December 2006

6.12am: Complete bitch staff nurse on tonight. She arrived at 11pm last night to take my obs. Didn't reply when I said 'Hello' amd asked how she was. No ID tag. Wrote my obs down on scrap of paper instead of chart. Thought she'd wandered down from Mental Ward. She had to take my obs again - blood pressure unusually high (as I'm in so much pain). Nurse 2 turned up and said lady next door desperate for loo but was hooked up to IV and she's not qualified to unhook drip. I asked Nurse 2 if lady was desperate in a way to hint that she could take my obs while Bitch Nurse attended to IV. Fell on deaf ears. She took obs and as BP so high Nurse 3 suggested I have them taken again at midnight. Nurse 2 said she'd do it. I whispered to her 'Good. Come midnight that really will determine if she'll be turned into a pumpkin, or if she is one already.'

This morning I woke up scratching right leg. Had pulled off cotton gloves in sleep. Was in lot of pain so buzzed for painkillers. Bitch Nurse arrived. Asked politely for painkillers. She just grunted and walked out. Nurse 3 brought them in and I asked her if I could have commode as even hobbling 20m to toilet is too painful at mo. Bitch Nurse wheeled it in with all the social grace of a slug.

When I'd eventually managed to get on commode, pee and then get back into bed I buzzed for someone to take it away. Bitch Nurse slimed in and slithered out again. 10 minutes later I felt bit sick so buzzed for an anti-nausea tablet. Bitch Nurse opened door: 'Yes, Philippa. What do you want now?' I explained and she slid off again. Nurse 3 arrived with tablet and said: 'God. I'm going to kill that nurse in a moment.' I replied that she was horrible. I didn't think I'd been too demanding, everyone else is SO wonderful - I mean way beyond the call of duty amazing - while she couldn't nurse a cardboard box. Horrid, horrid, horrid.

Should be Mum's Birthday today but she's postponing it 'til I get home. Means no cake - bugger.

Was lovely to see Rebecca yesterday. We had chat about everything and nothing. Well it's obs time again so I'll lie here listening to Tori and wait for Bitch Nurse to chug along in. Wonder where I can find a huge salt grinder?!

Sunday 3rd December 2006

6.45am: Really good night's sleep despite raging storms outside and emergency situation inside. Blocked out sounds by listening to CD - Regina Spektor's 'Mary Ann and the Gravediggers and Other Short Stories' which I asked Mum to buy for me on Friday. Gorgeous sleeve notes - bit like Ed Gorey's Unfortunate Orphans or whatever it's called.

Skin feels better. Feet feel less explodable. Have been prescribed 2000mg a day of Flucloxacillin though, which I hate as it makes me feel really ill and vegetative. Still - it works and that's the main thing.

Oli drove down from Chelters to see me yesterday. So nice to see him. I feel so lucky to have all these friends willing to drive for hours just to see me - feel v lucky indeed.

Angela arrived at same time as Oli. She's coming again on Monday. Writing up her PhD at home is quite boring for her and also getting used to living with her Mum, after being away for 3 years, is proving a little testy. Think she'll come in most days - mutual mercy mission.

Julia and Jo (PGCE tutors) sent me a lovely card and 3 novels to read while I'm here. They all look really good: Ali Smith's 'The Accidental,' 'The History of Ukranian Tractors' (or something) and Meera Syal's 'Anita and Me.' So kind and thoughtful. Have just started Philip Pulman's 'Northern Lights' after receiving about a million recommendations. It is really amazing so far but how children read it I'll never know. Don't know if it's because I'm zonked, but some bits I re-read and re-read and still can't get my brain to warp round.

Rebecca's coming to visit again today. Will be so cool to see her again. I just hope my hobbling and gripping, for dear life, onto anything remotely grippable in the attempt to walk doesn't distress her too much.

Have been using mobile in room just to text people has made communication so much easier, and a LOT less knackering.

Lauren might drive down to see me tomo. Must ask her to bring PGCE student contacts sheet. I'm just so popular - they're all sending me cards and I must thank them. God - it's so hard being this popular and modest all at once...think I deserve a cuppa. Speaking of which they're late bringing the trolley round. Tut, tut...QUICKER!

Saturday 2nd December 2006

The Killers are releasing Christmas single with proceeds going to benefit AIDS in Africa. Tipped to be No.1. Bloody hope so - particularly as f*cking Cliff Richard and Daniel O'Donnell are releasing a duet!

Mmmmmm...GORGEOUS Nigella and phallic chillis...now Jamie O and Sainsbury's...this truly will warm your cockles - not your Taste the Difference Butternut Squash B*LL*CKS!

Friday 1st December 2006

Terrible night. Feet, ankles, left leg (near knee) and bottom infected really badly. Each time I managed to get feet propped up on pillows my bum would be in agony. Woke up about 3 and felt really sick. Felt that collar of my t-shirt was wet and my stitches were starting to ooze. Panicked big time. Called nurse and was vomiting into cardboard bowl while she tried to apply a pad to my neck. Cried loads and explained that was scared of getting results. Nurse was so lovely and made me a cup of tea. Was too paranoid to go to sleep. Thank God Daisy bought me in her old Cd walkman and I asked Mum to bring in my Tori Amos boxset...got me through some dark hours...although when '1,000 Oceans' came on I got a bit freaked as I think it's a song I'd have played at my funeral. Due to this I ended up calling Mum at 6am and asking if she could come in at 8am. She did and by then I had calmed down a lot but was still in SO much pain.

Palliative care counsellor (Linda) came and talked to Mum and I, and I was able to voice my concerns that Mum doesn't want to get upset in front of me and I don't want to get upset in front of her - but I think we HAVE to...or we're going to have a nervous breakdown - was v good to speak to someone outside situation and yet who is trained and well-informed.

Consultant came round at 10ish. Still no conclusive results. They think I have Hodgkins' but there are 4 types - one of which is lymphocytes depleted (which only really occurs in the elderly) and that's what they think I have which makes treatment a bit more tricky. They're now saying they'll have definite answer Tuesday and I may have to have an Autograft Stem Cell procedure thing done - depending on Bone Marrow results. Consultant says he knows it's frustrating but it's vitally important to get treatment right from start so it's better to take longer at mo, rather than have to go back and do all this again because they guessed the appropriate treatment.

Dad then arrived. Needless to say Mum and I were in bits. I can see now that Consultant is completely right and I would far rather they take their time and get treatment bang on, but at time was so frustrating as had prepared myself for news this morning and yet still in limbo. I just wanted to know. I can cope better then when I know what I'm dealing with, but this not knowing is seriously DOING MY EFFIN' HEAD IN!

All the nurses (especially Michelle and Becky) were so lovely to us all - made us all tea, made my neck dressing a bit more comfy, even got me a salad to eat once I'd had a nap as I wasn't up to eating the lunch that had jsut begun to be handed out. Nurses are magical creatures. Crap hours, crap pay and let's face it - a lot of metaphorical and literal crap to deal with and yet they're still so shiny, caring and kind. F*cking Government needs to pay each one a million times what they're on now.

Day got better after I'd had solid one and a half hours sleep - went to shop and cafe in wheelchair, ate dinner, watched first 'Jam and Jerusalem' episode on PSP and skin's lot less painful. Am now on 2 different IV antibiotics, Piriton and Ibuprofen. Feet already lot less swollen. Taken photos on camera phone as there is no way I can describe how utterly repulsive they look.

Am looking forward to second episode of 'Jam and Jerusalem' - humour is truly the best medicine and the greatest form of strength.

Rebecca, Angela and Henry are going to visit me over the weekend, which will be what I need to give me a bit of normality.

Linda will pop back on Monday to talk about the weekend and how I'm feeling about stuff. It's SO good that they offer that, but I have to say that doing this journal is best therapy. Even if I just stick in photos or articles or quotes I like that particular day, it's a form of expression and I think expression is vital, vital, vital at this juncture.

Wednesday 29th November 2006

F*CKING HELL!! The Bone Marrow biopsy absolutely killed. Have never experienced anything so painful. Local anastethic did bugger all. Dr A had to press down really hard on my hip and practically drill needles into me. I think I nearly broke the nurse's hand I was squeezing. Dr A said I coped really well though, although I'm going to be in pain for next couple of days as bone was well covered and he thinks he's traumatised the muscles. At least it was all over in 5 mins.

Results will be back at 5pm tomo but then all consultants are going to have meeting about them (and I assume other peoples) tomo in Guildford at 6pm so I won't be told til Fri morn.

My feet and ankles are seriously painful, swollen and itchy. They look like they're rotting from the inside out. Have been put on antibiotics for week via PICC-line. First dose was this evening. Weirdest sensation...like melted snow being flushed through your arm.

Daisy came to visit today. Haven't seen her in 3 years. Was so wonderful to see her. She's often in hospital herself as she has ulcerated colitis which will be with her for the rest of her life. Was so good to talk to someone who understands what it's like to be so ill that you can't even face texting somebody. All my friends have been AMAZING and I know they're concerned but they just don't get the fact that I could barely walk to the toilet next to my bedroom, let alone engage in an hour's conversation. Daisy wrote me the following survival guide which hits nails on head perfectly:

'Dearest Pippin,
or perhaps I should refer to you using your new title of Yoda. Sorry if this is a bit wobbly. I'm attempting to write on the train.
Here's my brief 'How to get along OK in hospital' guide (although I'm hoping that hospitals in your area are nicer than mine - and that's quite likely judging from the difference between South West and South East trains):
1. Get your own room (hooray!)
2. Sleep on a towel if the mattresses are plastic
3. Have millions of books/magazines
4. Plenty of music
5. Try and keep positive, but allow yourself shit days. (Shit days=uncontrollable silent crying).
6. Smile and say thank you to doctors/nurses/cleaners/porters - it's good to keep them sweet and it also makes you feel good.
7. Write. This is especially good, especially if you can't sleep. It also helps when you need to think or on the other hand if you need to distract yourself. It also helps with the surreal thing, and when you come home it helps to re-read and write more when you're dealing with the fact that everything hasn't reverted to normal just because you've left hospital and are now at home. Also, you could sell what you've written - especially the drug-induced bits - and make pots of money...Daisy'

Laura's coming to visit me tomo and hopefully Lorna too.

Alli came in while Daisy was here and said that today was last of surgical procedures...touch a blemmin' forest! Have been through so much in last 10 days, but I know now that I'm a really strong person and if I can cope with this then I can conquer anything. It's going to be a journey, but there's nothing like a journey to change life experience.

Tuesday 28th November 2006

Bone Marrow biopsy will take place tomo around 11am. Local anasthetic in hip then needle in to take blood and then another to take piece of bone. Am quite apprehensive about it.

Thought we'd have results back today but Alli (the lovely registrar) came and said that I'm a pain...I'm proving to be complicated. Apparently results are not clear cut Hodgkin's Lymphoma so they need to do more tests on sample, which should be back by Thursday. Am starting to worry that I'll have really bad prognosis and as it turns out that it's linked to my itchy skin (which I've had for 3 years on and off) am really concerned that it's gone untreated for too long and my chances are therefore greatly slimmed.

Marilyn and Lucy visited today. Marilyn bought card which everyone from EIHMS had signed and they'd all clubbed together and got me chocs and a book token. I left over a year ago and am still popular, which is really reassuring and given me the confidence boost I need.

Lauren drove down and bought me the stuff from my room that I'd asked for. She's so lovely. Really hope I can go back to the house at least one week out of every four.

Antonia's just left. She's v stressed at work and started having panic attacks. Made me realise (more than ever) that when I'm better there's no way I'm going back to teaching/choosing a stressful career. I just want a part-time job to earn enough to pay rent, bills, etc and spend rest of time writing this biography and seeing bits of the world...actually enjoying life rather than getting sucked into what society expects.

This waiting is awful. I don't want to die. I feel (deep in my gut) that I'm going to get better, but waiting for these results (particularly as they're now complicated to get) is torture.

Monday 27th November 2006

PICC-line inserted by f*ckwit radiologist who gave me the all clear after Ultrasound on Friday 17th Nov. That's biggest problem - shock. All clear one day...2 days later - given every test under Sun and told have lymphoma - the big C. But it's the Gucci of cancers...only best for me. Highly treatable, v high survival rate. Feel like strapped to front of train moving 1000 mph.

They cut my neck open Thur and cut out tumours to test and diagnose which 1 of the 100 lymphomas it is. Having blood pressure, temperature and pulse rate measured every 4-6 hours. All staff so lovely. Probably start Chemo this week and have 12-14 sessions over 6-8 months. Might lose hair. Might balloon in weight. Might make me infertile. V surreal at mo. Feel v calm. Want to research and write biography of Dorothy (Edwards) when not having treatment. Results back tomorrow hopefully. Been bought a PSP. So cool. Plenty to do...play PSP, read, write, draw and all friends are visiting - some travelling ages to get here. Feel weirdly lucky - like I've been given chance for a better, more positive and fulfilled life. Day of CAT scan results - when they said I had tumours in neck, chest and abdomen (so pretty f*cking awful news) was day I felt my new life had begun. Too surreal to put down. Been spitting and coughing out phlegm for most of today...attractive! And the people mill and rush round like ants...

Not scared anymore. What will be, will be, but I know I'm going to get better. Things are progressing now where they were previously static slipping back to worse. Apparently after first chemo my skin will clear completely and never itch again...bliss...BRING THE BUGGER ON!

Wednesday 22nd November 2006

CAT scan. Had to lie in a similar position to this: (sketch by Tracey Emin). Imagine the figure to be wearing her grottiest pyjamas and with a bloody huge and painful canular stuck in the bend of her right arm and it's almost identical.

Sunday 26th November 2006

Essentials to have in hospital:

1. Lip balm
2. L'Occitane Hand Cream
3. Liz Earle body wash
4. Toothbrush and paste
5. Fantastic novel
6. Journal and pens
7. PJ's
8. HUGE knickers!
9. Suckable sweets
10. Small change
11. Puzzle book, comics and chav mags
12. Spectacles
13. Squash
14. Towel
15. Slippers
16. Pashmina
17. iPod
18. Hand mirror

(This is f*cking madness. I'm on another plane of thought. I've got the 'C' word...the taboo...and yet I'm so relieved to find out why I've felt so so so ill. Weirdest thing. Auntie Denise and Mum; Letty and Nicole; Angela are due to visit from 3pm onwards. V v v tired today).

Friday 24th November 2006

Text message to send to everyone:

I'm in Frimley Park Hospital where I've got my own room. Had CAT scan on Wed. I have Lymphoma - cancer of the galnds but as there's 100 types of it I had a biopsy on Thur so they can diagnose completely. Will prob start Chemo next week. If you want to visit it would be lovely to see you. Can't use mobile in hosp but have own landline. I feel ok...all a bit surreal! Pip x