The Big C Journal

Monday 25th Feb 2008

2009-11-12T06:28:00.000-08:00

WOOHOO!! K came to visit yesterday. Parents really liked her and loved having Marlene for afternoon. Don't think it will take any time at all for them to get a dog now. When K went to collect M she wouldn't leave Dad's side and he kept waffling on at her about walks you can do nearby. SO embarrassing...she's not going to know what you're going on about Dad...shut up!

She loved the Tweety Pie and M on rollerskates drawings I'd done for her. She bought me 2 Diva mags, a Paint-A-Mug set and her Dalmatian Jasper bracelet, which looks like a Flinstones bracelet but has healing properties specific to Geminis and removes negative thoughs.

We went to hospital cafe, had proper tea, walked round hosp grouns, went back to cafe, came back to my room and chatted for hours. Canular was hurting and thought it might be blocked again. When they started to do drugs rounds she said she'd better get going and asked if I was OK (think I looked quite anxious about canular). Replied I was OK and was she? She then leaned in slowly. I leaned in slowly and we (FINALLY) had our first snog. Was quite simply the best ever. She said "You've gone bright red." I laughed and said "So have you! What took you so long?" She replied "What took YOU so long?" Snogged again, then she left. She'd been here for 5 hours! Then I had my obs done. Pulse rate high. BP sky high and temp up whole degree! Mum then arrived and was gushing bout how lovely K is and how she adores M who fell asleep and snored on her lap while she watched TV.

K called at 10pm. We talked til 11. She apparently took wrong exit off A23 because she was daydreaming bout the day. Am REALLY happy. Everytime I see/talk to her it's like minutes...the time just flies. It's so easy with her. Cannot WAIT to see her again, so hope I get to go home today and get the chance to go back to Brighton on Fri cos she's dogsitting for Paula and Laurie this wknd so she won't be able to come here.

Who knows what will come of this...all I know is that I haven't felt like this for YEARS...and it feels fantastic. The old Pip is back and I'd missed her.

Daisy's back in hosp. Her stoma's stopped working and she's now on liquidised diet. Asked Dad to copy M Boosh CDs and send them to her. It's vital to be able to block out sounds from other rooms here...even more so on a General Ward. So if I get out I'll copy and send a load more new stuff. This treatment WILL work for me and her treatment WILL work for her. It''s just so frustrating to not be able to plan anything because things can change so instantly for both of us. At least we both understand what each other is going through, perhaps a little more than other people do and it's helpful to be able to get each other through it.

Saturday 23rd Feb 2008

2009-11-12T06:22:00.000-08:00

Registrar came round yesterday morning and said that when my antibiotics finish on Monday, i can go home. I'll need to take tablet antibios for a week and carry on with the GCSF injections but otherwise, apart from coming back 3 days a week for bloods, etc, it'll hopefully be OK.

Bored now. When you feel terrible (as I did on Sunday and Monday) then it's fine...but I feel well now so it's really fucking dull. Drawing, writing and listening to music is just about keeping me sane...just.

Dad bought in 'Make the most of your time on Earth' travel guide yesterday. Helps me think about all the places I want to go and how much I want to see (and photograph) when the ninjas have kicked this shit disease to pieces.

Canular was replaced last night, as the 72 hours it can stay in were up. Nurse who did it this time was so gentle...didn't feel a thing. Phew...was bricking it! Need to have another central line put in but Registrar wants the 3 holes I've got inbetween my boobs to heal over first. Think they're going to tranquilise me with Medazalan this time...it's just too stressful!

Wednesday 20th Feb 2008

2009-11-12T06:08:00.000-08:00

Much better day today! Last night quite traumatic. Lauren and Mark had only just turned up to visit when the canular in my left hand stopped working so I needed a new one. Nurse tried to put it in my right hand...so painful and poor L had to hear my screams. However, they managed to get it in near my elbow and it's a lot better.

Potassium levels back to normal so no more vile drink. White blood cells rising and inflammatory markers down. Infection clearing so all progressing now. Just the fear of the next line going in now.

Walked up and down ward and saw Paul as he was going into Day Unit. He had his stem cells collected on Thurs. He said it was much better than he'd expected so hopefully that's the case for me. Dad bought my iPod speakers in today. IPod Touch looks so pretty in them, but it makes the atmosphere so much more homely, normal and relaxed. Also, no longer have the fear of tangling various lines up in my headphones.

K's visiting on Sunday. Marlene, her dog, is coming with her and she's actually dropping the dog off with my parents for the afternoon. I haven't even snogged her yet and she's going to meet my parents without me even being there. Madness! She posted the Val Day card. It said "Who knows what will come out of knowing you, Pip. All I know is that I like spending time with you. let wonder replace fear, my dear. Happy belated Valentine's Day! Love Kirsten x x" She's certainly all about the mystery. She was sent home from work with a migraine today. Texted a lot. Sent me a photo her friend took of her asleep on sofa with Marlene. She looks so cute. Really like her, but trouble is that she's v busy at mo and got a lot of emotional crap from her work and her ex, while I've got vast, empty days to just sit and think about her...dangerous!

Read 'Transformations' by Anne Sexton. Poems based on Grimm's Fairy Tales. Plath's version of Duffy's 'World's Wife.' Menacing. Dark. Gruesome. Fantastic!

Monday 18th Feb 2008

2009-11-12T06:00:00.000-08:00

Shortly after drawing the overleaf my iPod decided to go kaput. Noooooo! My lifeline. Then the Registrar came in and said my line (which was so uncomfortable) needed to be removed. The infection has got worse since I started antibiotics and it's really dangerous. He also said that they'd put a canular in my hand so I could get a bag of Potassium fluid put into me, and that he's going to put me on 3 types of IV antibios for 10 days and not let me home. So...bit traumatic really.

Was waiting for space to become free in Radiology for me when Dr A came in and said they could just take line out here in the room. Registrar did it. Didn't hurt. Was a relief to get it out. The amount of puss that flowed out that baby tough...enough ectoplasm for Ghostbusters 1 and 2. Apparently the stitches were infected too. He kept saying "What the hell are they doing in Radiology for this to happen?" Really inspires me with confidence for when another line needs to go back in for 2nd ESHAP!

Anyway, Potassium's working. Feel better already. I'm on these antibios; eye drops 6 times a day; GCSF injections; morning tablets and think that's it...for now.

Dad turned up at 3pm with a very pleasant and unexpected surprise...an iPod Touch! It's SO pretty I want to constantly lick it. Cannot wait for him to bring it back all loaded up tomorrow. Am constantly plugged into music in 'normal' life so literally cannot cope without it within these 4 v isolating walls.

Sunday 17th Feb 2008

2009-11-12T05:57:00.000-08:00

Bugger. Was allowed out last night and thought I'd be able to stay @ home but Feruna called while I was watching 'Wife Swap' and said that my blood is too low in Potassium (prob due to all the peeing) and that the Docs wants me in to drink Potassium solution and stay over...so here I am...back in room 6, writing this and listening to Belle and Sebastian. Had bought Mighty Boosh 3 on DVD and was intending on making my way through that tonight, but nevermind.

Don't know when I'm going to be able to get back to Brightside at this rate. Really going to have to take each day as it comes, even more than before. Pissflaps!

Saturday 16th Feb 2008

2009-11-12T05:51:00.000-08:00

Baxter (my IV pump) was fully disconnected once the last bag of fluid had gone into me at 1am. Am free to walk around without having to unplug and drag him behind me. Also makes sleeping easier as am not paranoid I'm going to yank the lines out.

Period is fucking killing me and all I'm allowed are useless paracetomol. Really want to go home now. Am fed up of these 4 walls; peeing into a cardboard bowl; hosp food; 4 hourly obs; continuous light and electrical buzz; noise of old people wailing. Hopefully they'll keep this room for me, give me IV antibios @ lunch and then let me ho home...if there's any prob my parents' house is 3 mins away so we can just pop straight back.

What's keeping me going are the visits from people; the WONDERFUL team of nurses here; forward thoughts about travel; happy memories of my friends; my parents letting me be a spoilt, moody bitch and my iPod. Thank Fuck for the iPod. Life-saver!

Friday 15th February 2008

2009-11-12T05:43:00.000-08:00

As well as Chemo, I am now getting hardcore diuretics so am peeing constantly. I'm also on steroid eyedrops and IV antibiotics for the infection in my line. Then to top it all off my period's decided to make an appearance. Bloody hell, literally. Don't have any pads/tampons with me so am having to use hospital's maternity pads, which is bit like shoving a rabbit in my pants.

Daisy sent me a text this morn. She's in hospital too..had to go back in for second op and also can't sleep. it just goes on and on. But I am focusing my mind on lots of little ninjas kicking the crap out of the cancer cells in my blood so that when we're both better we can hop on a plane and get the fuck out of here.

Hopefully be allowed home tomorrow if antibios are doing their job. Last day of first cycle today. It's slightly different drugs today and should finish at 9/10pm. Really want to go home. Being stuck in one room is just too much...particularly when I've been awake for almost entire time. Boring! This treatment's tough. Makes other Chemo look like piece of piss. Still...keep thinking...Ninja, ninja.

Finished Alison Bechdel's graphic novel/memoir, 'Fun Home,' which Nicky sent me. Fantastic! Great illustrations, which were almost photographic in both form and composition in places. Will have to see what other things Bechdel's produced.

Thursday 14th Feb 2008

2009-10-29T11:48:00.000-07:00

Fed up. Had traumatic night. Line was v sore, with lots of puss coming out of it and I've retained 4kg in fluid so am bloated, uncomfortable and puffy. When I tried to call nurse for help she got stuck outside the door as my door handle came away in her hand. Can laugh about it now but was bit touch and go for a while.

Today is Valentine's Day. I don't think much of it, and have had some dire ones in previous years, but this years has to be the worst. However, Paul is coming down from Manchester to see me this pm and he has promised me the largest, grossest, most vulgar and ugly card...ever. Can't wait to see him.

K came from Brighton to see me yesterday. Stayed for 4 hours. Bought me some wicked unicorn gifts all prettily wrapped up in 'GAY' wrapping paper. Made her a card with a monster on the front of it and gave it to her with instructions to open it once home. She sent me a text saying: 'Well, thank you v much for the lovely card! Now want to shut my head in a door for not giving u card that I had in my bag. OK 2 call u tmrow sometime? Sleep well. Kx' So...she does like me...hooray! REALLY hope this progresses...she's wonderful!

Tuesday 12th Feb 2008

2009-10-29T11:43:00.000-07:00

Feel much better today. Vomited twice last night but given some Ondansetron which cured it so had OK night's sleep.

Nicky Hallett sent me two books in the post - 'The Summer Book' and 'Fun Home' - to stave off the boredom.

Lucy R came to visit after work. Saw Lauren and Mark yesterday. They bought Perry (the toad) dressed in a nurse's hat and stethoscope...v lovely and v good to see them.

Have moved rooms 3 times today...now in room 6.

Took an age to shower this morning. Not allowed to get line wet and shower's fixed to wall so had to have flannel wash in smallest sink ever designed I think. Shaving my legs took forever. Gpt bored halfway through...I mean what's the sodding point really?

K's coming tomo...can't wait....I like her...lots...

Monday 11th Feb 2008

2009-10-29T11:40:00.000-07:00

6.20am: There are no words to describe the horror that's just met me in the mirror...

8am: Just had lots of fluid pumped into me for start of chemo. Been weighed. 82kg. Blimey...no more biscuits for me! Have to inform them of each time I need a wee...have to then piss into a pan so they can weigh it. Surely that must be the worst job in the world?!

Midnight 10th Feb 2008.

2009-10-29T11:38:00.000-07:00

Well...I'm back again. Ward G1 has been refurbished and is looking v plush and modern. Electric bed and chair as well as en-suite bathroom. Marvellous.

Line is still painful. Bruising's coming out more and when I move I can feel it stretching under my skin. Yuck.

just had the house doctor come in and ask me questions about past treatment, any allergies, etc. She looks quite gay but in a V HOT way...could make my stay slightly more pleasurable!

Can't turn off bathroom light, medical equips buzzing and from the noise of the clock you'd think I was trying to sleep inside Big Ben. Shut the f*ck up!!

Thursday 7th Feb 2008

2009-10-29T11:34:00.000-07:00

Today has been the toughest day I think I've ever been through. The line went into the middle of my chest today. I had to lie on a narrow table with my head turned completely to the left. Part of my head was covered with a sheet as the radiologist made a cut in the base of my neck and between my breasts. The line was then tunnelled between the two points. The whole procedure was carried out while the sodding Lighthouse Family played in the background. I would never have it done under local again. It was too uncomfortable (more than I'd expected) and mentally damaging. I look like Frankenstein's monster. I thought having the PICC in my arm was gross enough, but this is ridiculous. I'm bruised, bloody and beaten.

Wednesday 6th Feb 2008

2009-10-29T11:20:00.000-07:00

So I got my results back last Wed...and they weren't exactly what I'd hoped for. The suspicious area has got larger and there's also an area in my stomach that wasn't there before, so I need to have ESHAP chemo. BUGGER!!! My tits looked fantastic on the scan photos though.

The plan means I'll have 3 cycles of 5 days continuous chemo, followed by 2 weeks rest, during which time I'll need blood tests 3 times a week. I'll also need to inject myself with GCSF again.

This time I'll have a line wit 2 lumens inserted in my chest....sexy! It'll be put in tomorrow, under local anaesthetic, at 2pm. Am scared.

Currently I'm having to do a 24hr urine collection so every time I pee I have to go into a jug and then pour it into a 5L bottle.

Apparently this 'salvage regimen' will make me bloated and bald. I'll feel sick and the steroids will make me an insomniac. After the 3 cycles I've got to go to UCLH in London to have my stem cells collected, more drugs pumped in, and then my stem cells put back. However, if my body doesn't respond to the ESHAP then we'll have to try something else.

Don't know if I can do this. I will do it - I mean, look at the aternative...but can I do it? Just got to focus on the good things. Everything will be alright...eventually.

Thursday 24th January 2008

2008-01-28T09:20:00.000-08:00

I'm radioactive. Had second (and hopefully last) PET scan today. Possibly due to copyright reasons the choice of CDs this time was reduced to 'The Classical Experience' or silence. Went for the latter, but had 'I like short shorts' stuck in my head, for some unknown reason, which slowly drove me mental.

Was put in a gown that was so see-through I may as well have been naked and as the air con was on full blast I'm sure my nipples will show up on the scan if nothing else.

Now I just have to wait for the results...again. Just want to know. Feel stuck in a rut, but that I've been stuck into it with no control. Will be able to move on...either to more treatment or to travel, work, life...once these results are given. Wish it would bloody hurry up. Being in limbo sucks.

Tuesday 13th November 2007

2007-11-13T07:41:00.001-08:00

Complete change for the better! Went to the V and A, on Friday 2nd, with Mum to see the Couture exhibition (which incidentally was absolutely fabulous), went round the shop and purchased 'The Bunnies Fall' print (that everytime I look at reminds me of receiving this good news) and realised it was 3.30pm and Dr A hadn't called. So Mum and I sat in the main hall and rang the hospital. Put through to Dr A's secretary who was on Annual Leave. Then put through to his office where no-one answered. Then after waiting on hold for them to page him he called me back.

Apparently the X-Ray guys weren't at the meeting. The Radiotherapist was and they agreed that Radiotherapy is just too dangerous due to the 'area of suspicion' being near my heart and lungs. However, they were also in agreement that it wasn't enough of a problem to warrant more chemo so they want to do another PET scan in Jan/Feb to check that I'm still in remission.

It was the strangest feeling. Completely shell-shocked. A bit like being given a million pounds but told that you're not allowed to spend it just yet. I don't think the group of Italian tourists sat near Mum and I will forget their trip to the V and A in a hurry though!

And so I think this will be the last entry in this journal for a while (which is good as I'm running out of pages). Am planning a trip to Cuba with Mum for December, and then hope to go to Singapore to visit Nicole for a couple of weeks and then on to Sydney to visit Susie for another couple, in Feb/March depending on when the scan is. Job wise I think I'll temp for a while. I've got a lot of office experience and if I hate it I just won't go back. "I know I'm not making plans, but I hope that you can understand, there's a reason why."

This past year has certainly been the most eventful of my life. So much has changed and yet so much hasn't. I could not have got through it without the love and support of my friends and family. I owe them everything.

On the way home from the theatre last night Antonia asked me what the 'me of last year' would say to the 'me of now' and I replied "Everything will be OK"...and it will.

Text to everyone:

It's good news! They don't think it's enough of a prob for chemo so will have another scan in feb to check am still in remission. Have hardly any battery so turning phone off now but hoorah! x

Text responses:

Lauren: Oh Pip, am so so so so so pleased! I think we should have a big big party!!! x
Gaby: Thats fab news babe! Am v excited for you! We will have to celebrate soon. Xxx
Charlie: That's amazing news! So happy 4 u. Give me a ring at the weekend 4 a proper chat.
Robert: Oh honey that's wonderful news im so fucking pleased u don't need chemo! Im really really pleased thats the best news iv heard in a long time! xxxx
Laura: Wonderful news! Have a hen do this wknd. Will have a drink on you! Have fab time in London. Speak early next wk. Lx
Glenda: That's bloody brilliant news. Really happy for you Pip. Have a good night of celebrations, you certainly deserve it. Speak to you soon x
Ellie: Yay! Baby i'm so happy for you you really deserve it! I'll bake you a cake next time I see you. Well, I'll buy you one. Well, I'll get you to buy one and pay you back. Then not pay you back. Then eat it all myself. Yay! Celebrate! Love you x x x
Lucy S: Woohoo! That's fab news. Have yourself a lovely wkend and catch up soon x
M: Yeah! Great news love. Congratulations innit x
Lucy E: Brilliant news! I'm so pleased for you Xx
Rossboss: Thats great news! Now I can cheer. Woo. X
Daisy: For when you're phone's charged - hooray! Will still come and see you soon x
Lucy Jerk: Marvellous! Great news my sweet! Love you my love x
Wench: That's wonderful news, take care and make sure you keep in touch! X x
Becca: If ever there was a reason for a celebration. Hope u had a good night out. U must come round for a celebratory tea and cake...Xxx
Becky: That's fantastic news! So pleased for u! Xx
Emma: Ah that's great news pip. Am all well and enjoying life in London. Will be in town this month so we can celebrate soon x
Dy: Great news! I'm still drunk! Oh dear...Ur great xxx
Sarah: YYYAAAAYYYYY! YYYAAAAYYYYY! Hope KT was fab angel. See you tomo! Love etc XxX
Toby: Glad to hear the results were good Pip! Snap with the hangover - it feels like someone has sneaked into my bedroom last night and put sand in my eyes. Tx
Riley: Great news! Go pip body! All fine here, see you on return Xx
Angela: Excellent! I'm so pleased! We must celebrate! x
Oli: Superb news x
Simon: Hello my darling. Sorry I've not been in touch, rubbish as always! Glad to hear things are going better! We must do lunch soon. Toby and I were saying it would be nice to get together with everyone at some point xx
Jackie: That's great news pip. Am so pleased for you. Hope you're enjoying the sun today. Take care x
Antonia: Yo dude...when you back in Brighty? Give me a bell...by the sounds of things a smart dinner is on the cards. Congratulations on the good news! A xx
Thunderbat: That's fantastic news for your results! I hope you've continued your drunken status for rest of wknd. I'm stuck in heathrow waiting for my luggage...I think I'm about to witness luggage rage, the people are looking fierce x x
Katie P: Oh how fantastic my darling! So happy for you! Will catch up soon and enjoy your couch potato sunday! Xxxxx
Caroline: Hello you! Great news about the scan, you must be so relieved. Cancer ain't got nothing on you! School makes me tired but I hope I'll see you soon xx

Thursday 1st November 2007

2007-11-13T07:25:00.001-08:00

Bugger. Shit. Wank. Arse. Jesus titty-fucking Christ. PET Scan results were confusing. Apparently several areas had appeared to have taken up the sugar, several areas that weren't affected in the first place, including the colon and the pelvis indicating Diveticular disease which only occurs in the elderly and so doesn't make any sense. The experts were unable to get onto the machine to view the images (as the machine is at a different hospital) so they're sending a CD-ROM over to review at tonight's Lymphoma meeting. Dr A will then phone me tomo with the consensus and the plan ahead.

Dr A explained that the uptake in several areas could be due to 'Brown Fat' distribution which is perfectly normal in a young person. However, there is trace uptake in the node they thought might be scar issue so it oes appear to be active disease. The options are a short course of radiotherapy (5 minutes a day for 2 weeks), although because of where the node is (near the lungs and heart) and radiotherapy having its own set of problems, the better option might be ESHAP chemo. Here they admit me to hospital for 6 days. They put in a double lumen line, remove my stem cells, continuously pump in the chemo drugs, and then give me back the stem cells at the end. Either way I'm fucked off quite frankly, but just have to go with the flow. Am getting used to waiting around for disappointment.

On the positive side I'm off to London tonight to stay with Rebecca for a few days. Am seeing KT Tunstall in concert today, going to V and A with Mum tomo and seeing Lorna and Mark in eve, then Shaolin Monks show for Dad's birthday on Sat eve followed by drinks in Covent Garden for Eli D's birthday. Woop, woop!

Thursday 30th October 2007

2007-11-13T07:14:00.000-08:00

Results Day Part 2 is tomo. To say I'm nervous, worried, tense, stressed, apprehensive, anxious and any other synonym of the aforementioned is a little understated. Basically, I'm bricking it.

However, to put it into perspective...if the worst comes to the worst then I'll just have to be zapped a bit more. It's curable and I will be cured. Just takes a longer time.

It seems so bizarre that it's been a year now since I first fell ill. This time last year I was lying in the bed I'm currently writing this in, unable to do anything except sleep and stare at the wall/ceiling. Even listening to audiobooks/music was too demanding.

I feel this year has occurred to another person. I cannot quite believe that it's me that's gone through this. Maybe it has been a subconscious coping device. It's just that when I reflect back on everything I still cannot quite grasp that it's happened, and it's only since finishing treatment that I realise how tough it was.

I just really hope I can go in tomo and come out with the all clear. More than anything. Please, please, please.

Thursday 11th October 2007

2007-10-12T08:23:00.000-07:00

PET Scan Day. Scanning centre was lovely. Unlike Frimley Park waiting area, which was built in 70s and has magazines from around same era, it was v up-to-date. Staff were lovely. V friendly and explained everything thoroughly.

Had to drink bout a pint of orange iodine drink. Tasted of liquorice. Yuck, yuck, yuck! Then had to change into a gown and lie down on a trolley. Nurse put a canular in my arm and took small blood sample. Then she put administered this radioactive injection so I can't hug anyone, and have to avoid pregnant ladies, babies and small children, for 24 hours. I had to lie there for about an hour to let it circulate around my body. After that the canular was removed and I went into the scanning room. Hsd to lie on this long table with my arms above my head and stay completely still. Table was then inserted in this tunnel and every 5 minutes the table shifted a bit further out of the tunnel. It was very snug. No wonder they ask you if you're preggers - the bump wouldn't fit! Scan took about 40 minutes. Quite boring. Available choice of CD's was Robbie Williams's 'Swing When You're Winning,' 'Hits of the '60s' or 'The Classic Experience.' Opted for the latter. Got the theme music to the old Hovis TV ad: 'Da da da...da da da...When I were a lad...Da da da...All the mills were open...Doo da...and no-one had even heard of courgettes...etc.' for 20 mins. Would have been fine but only two settings...so soft you couldn't hear it or ridiculously loud. Still, wasn't all that bad really. Better than I'd thought anyway.

Wednesday 10th October 2007

2007-10-12T08:16:00.000-07:00

Hospital phoned. PET scan's tomorrow at 10.30am. Was so used to waiting ages for things it's a bit of a shock to have it arranged so quickly.

Looked PET scan up on the internet. Fairly new technology developed in the Seventies...so yes, bang-up-to-date then...only 30-odd years old! Anyway apparently I'm injected with, and/or drink, a glucose solution and have to wait for about an hour for it to circulate around my body. Cancer tissue absorbs glucose differently so will show up on the scan as unusual. Actual scan involves lying completely still in a tunnel for about an hour. It's v expensive. Only few hospitals have the equipment hence why I have to go to Guildford.

Saw Nicola today for a cuppa. Very good to see her and have a chat about stuff...particularly as she's going through the same process. Apparently she's left with the oldies now that I've finished treatment. Really wish there was a way they could organise treating similar age groups at same time. Really think it would make a significant difference.

We were talking about hair-loss and how people react to seeing the PICC line. I'm so glad mine's gone now. Human beings are generally quite inept and seem to stare. If you respond to the question of 'what's that?' it tends to cause embarrassment brought about by a lack of understanding. It's amazing how superficial society really is. Shocks me actually. Part of it shame that I would have been one of the starers in the past and wouldn't really have known what to say, I think.

Hair's growing back quite quickly now. Hopefully be able to tuck Marina away in a box in a month or so. Plus it's coming up to the season to be bald...wear those beanies (preferably ones with huge bobbles) with pride!

Wednesday 3rd October 2007

2007-10-12T08:09:00.000-07:00

*RESULTS DAY!*

Appointment finally came through for 3.40pm today. Was more nervous waiting for this than ANYTHING in my whole life. The 30 minute delay didn't help matters, nor did one of the nurses wanting to whip me in for a quick blood test.

Anyway...good news. Only a small patch of shadowing left under my breastbone. None in the glands at all. Consultant thinks it's most likely to be scarring. He said that in the past they would have administered a short course of Radiotherapy to the area, but now they do a PET scan first. He wasn't entirely sure what this involves as the technology's quite new so I'll look it up on the internet later I think. Maybe you select a pet of your choice and take that along to be barcoded. Maybe not.

Apparently scan's done at Royal Surrey hosp in next 2 weeks so made another clinic appt for 31st October to get the new results.

Very relieved but also a bit frustrated that he couldn't sign me off so to speak. However, none left in the glands and the large patch under breastbone had shrunk to 3.5 x 2.5cm at halfway point and is now 2.5 x 1cm. Also, he seemed pretty sure that it's just scarring and they have to give worst-case scenario so fingers crossed for all-clear on 31st!!

Tuesday 4th September 2007

2007-09-10T04:25:00.001-07:00

I have had a period arrive!! Woohoo!! I'm not going through an early menopause and am hopefully still able to have children at some point. It's v painful but am v, v happy. Means my body is returning to normal.

Had to fill out a form for the DWP today. It included the phrase "If you have an artificial limb, or something like that..." SOMETHING LIKE THAT! What? What is like an artificial limb exactly? A dildo?! What twats write these forms? Was the most ridiculous from I've ever had the 'pleasure' of completing.

Went inside the Royal Pavilion today. Beautiful. Decadent. Dragons everywhere. Magical!

Friday 31st August 2007

2007-09-03T04:22:00.001-07:00

Today could be better. Firstly I think I have a cold coming. The banging I thought was coming from next door turns out to be in my head. I also think a small furry mammal has nested in the back of my throat without cutting their toenails since 1983. I'm running out of tissues and scare myself when I walk past reflective surfaces.

Secondly there is no word from the hospital as to scan results. If most of my hair hadn't been lost due to Chemo I think I'd have pulled the same amount out by now.

Thirdly and finally money is becoming an issue due to the incompetent fools at the Benefits Agency. Apparently my form is at one office, then it's at another office, then it doesn't exist at all and will take a week to process. Cretins.

Wednesday 29th August 2007

2007-09-03T04:11:00.000-07:00

Back from Manchester Pride.

Highlights of the weekend:

1. Spending lots of time with gorgeous Pablo.
2. Meeting new people including Cassandra the inflatable Flamingo.
3. Watching Beth Ditto. I'm not particularly bothered about the rest of the band...they don't wear Lycra.
4. Being introduced to Cheeky Vimto...the quick and cheap way to get completely off one's tits.
5. Dancing like a loon to Erasure at Poptastic.
6. Having my bum pinched by a Kate Nash looky-likey.

Lowlights of the weekend:

1. Being called a hotter version of Jade Goody by a girl with a squiffy eye from Crawley.
2. Standing behind a girl in a toilet queue who wet herself and then walked into the next available cubicle as if nothing had happened.
3. Axe Girl 'LIES!!' and Heartbreak.
4. Kate Nash looky-likey shyly dashing away after bum-pinching incident.

Wednesday 15th August 2007

2007-08-17T14:20:00.002-07:00

I have a scan date! Friday! Mum ended up phoning and complaining that she didn't think the attitude I'd received when I phoned was acceptable and spoke to my consultant's secretary who helped instantly. Apparently it's holiday time and so they're taking emergency scans but other people have to wait. The list is miles long. The NHS is in such a shambles cos it's run by middle aged women faffing about with bits of flip-chart paper. I've only got my scan due to complaining. It shouldn't be like that.

Anyway...am quite nervous about it. Half-way scan and waiting for results of that was bad enough but at least just thought would be on Chemo for bit longer if it wasn't working. It seems like a much bigger thing this time though. Bit too big really...

Friday 10th August 2007

2007-08-17T14:20:00.001-07:00

Hmmmm nope...can't be buggered.

Wednesday 8th August 2007

2007-08-17T14:05:00.000-07:00

Well I had my last (touch wood) Chemo session on 27th July. They removed my PICC line without any trouble/pain/vomiting/fainting and all that's left is a little scar on my arm.

I've got the line still, in a little specimen tube. It's very odd not having it in my arm. I still keep hesitating when I put tops/jumpers on and showering with two arms is weird to get used to. Much preferable though and no-one stares anymore, which is great. Also means that when my blood counts rise, in a few weeks, I'll be able to go swimming so I have joined a gym and bought a new swimming costume in preparation. I literally CANNOT WAIT! I haven't been able to swim for so long...probably about 2 years now because even before I had the PICC line my skin was always too infected/itchy. Splish-splash, splish-splash.

This week is also the first week in 7 months that I have not had to return home for a hospital appointment or inject myself with GCSF. They're refurbishing G1 at the mo meaning that to get to the Haemo Day Unit you have to enter via the Senior Assessment Ward - possibly the most depressing and grim ward in the hospital. V v relieved I don't have to go back.

Am still awaiting a date for my CT scan. Rang up yesterday as was expecting scan sometime next week so was concerned hadn't heard anything. However was told reason I've not heard is there are no slots available at mo. Asked if they knew how long wait might be. Told they really couldn't say. Wonderful. I'm stuck in limbo now. Will have to wait for clinic date after scan to get results so f*ck knows when I'll find out if I'm clear or need radiotherapy. If I think about it too much I may go do-lally-lally-do-lally.

On the plus side I'm not vomiting all over the place and my hair's growing back...in my original colour. No ginger afro. Phew!!

It's been such a weird time. No-one should have to suffer from this disease. I know there are worse things to live with but this has been hard enough. I wouldn't wish this on my worst enemy...

Friday 13th July 2007

2007-07-22T04:20:00.000-07:00

Today I had my penultimate (15th) session of Chemo. This means that hopefully my last (touch wood) Chemo session will be in 2 weeks time. Cannot believe it has been 8 months since I began treatment. In some ways it has gone really fast and in others it has seemed like forever. "Everything today is not the same, and yet it is exactly the same and it can never be the same again." (A.M.Homes - 'This Book will Save your Life').

PICC line is still not bleeding, which is a real pain as the vein they stab to take blood from in the other arm is becoming v sore and bruised. Also, after some inept moron staring at my PICC line arm, whilst serving me in MacD's yesterday, I am more than ready to have it (and the explanations) removed - although apparently after my next session they just pull it out - EEEEEEEK! Am 99% positive I will faint/puke/faint and puke.

Have had a really brilliant week this week. Becky came to visit me in Brighton at the weekend and we had a wicked time. Sat night we went to Las Iguanas for yummy food and cocktails. Moving on to the Mash Tun where we were chatted up by a man camper than a field of tents who insisted he was straight and told Becky he could never forget her name as he'd had two girlfriends called Becky...then proceeded to call her Laura. After this beautiful meeting we went to The Arc for 'HoldUp' Indie Night. Brilliant music - lots of dancing and drinking.

Sunday - shopped til literally dropped and credit card had a coronary. Becky spontaneously got her ear pierced - as you do, and we went to the Hanover Street Festival. Watched Federer beat Pirate-Boy in Wimbledon Final and went to the Marina for dinner.

Monday - I went to visit Dawn and Andy in the class capital of the world - Essex. Went shopping (again) and purchased too much stuff (again) in the ever-elegant Lakeside. Watched 'Die Hard 4.0' in the eve which was surprisingly good, although gravity has not been kind to Mr Willis.

Tuesday - visited Upminster Windmill - only one blade and no Johnathan Creek or Nr Majeka in sight - pah! Onto Romford, which was better than the sh*thole we all expected it to be.

It's Gaby's wedding tomorrow. So surreal to think of her being Mrs Baber and not Miss Goodman. Thoroughly looking forward to it though...will be a wonderful day. Really hope I don't vomit at inappropriate moments...

(Sadly Grandad died last weekend. It's hit Dad quite hard. Funeral's on Wednesday. Going to be tough...)

Friday 6th July 2007

2007-07-22T04:03:00.000-07:00

"Independent of a fuck who hates faggots, independent of a small cock-sucker...a...COCK...suck...er..." improvised Tori Amos at the Hammersmith Apollo on Tuesday. She was AH-MAY-ZING! Her band was incredible. She played loads of new songs for the first hour while dressed as Santa (one of the characters from her latest album 'American Doll Posse', then had a costume change and playeda mix from her back catalogue.

During a rendition of 'Black Dove' she stopped mid-song because she was "fucking the whole band up 'cos I have had a brain fart..." The second costume was a little bizarre - a mix between a dress and a jumpsuit made from Bacofoil. Also, it was difficult to tell whether she was enjoying herself immensely/ a spider had got in her pants...dry-humping the piano stool was her main choreographed motion.

Earlier in the day I met up with Dal...a v cool individual who contacted me on MySpace due to this journal. She completed the Race for Life (in just 31 mins!) while wearing this funky t-shirt. Am very touched...the kindness of strangers does exist.

Nicole came to visit Wed-Thurs. Had wicked but slightly weird time on Gay Street. Random people...v, v random...

Had a bit of a rubbish day. Grandad's seriously ill...Dad's very upset. Blood test today. Day Unit full of very ill, very old women. One of them left 5 minutes before I did. When I came out she'd only just managed to walk 100m down the corridor. It's getting incredibly hard to go in sometimes...seems like have to summon up every ounce of strenght, slap a smile on and just get on with it.

Friday 29th June 2007

2007-07-22T03:52:00.000-07:00

Also, six months on is a picture of my scar...not quite as unusual as Harry Potter, bit more like Frankenstein's monster, but chicks dig scars right?!
Had 14th Chemo session today. 2 to go. Phew. PICC line still not bleeding and is now infected so been put on antibiotics. Pants eternal.

Wednesday 27th June 2007

2007-07-22T03:39:00.001-07:00

Some photos of my not-so but still quite scabby legs 6 months on...

Monday 25th June 2007

2007-07-21T11:27:00.001-07:00

Back in Blighty. Barcelona was absolutely amazing!! Such a beautiful city. Loved every single moment of it.

Tuesday was "Gaudi Day". It was also the hottest day of the trip - nearly 90 degrees and due to the decanting of liquids into bottles of less than 100ml (to meet new EU regulations for hand luggage) I ended up applying liquid hairspray instead of sunscreen spray onto my skin...wondered why my arm hair seemed so sleek and styled. Went to Sagrada Familia first. Mind-blowing. It just looks as if it has risen up out of the mud and formed the strangest, most ethereal shapes. Photos just don't do it justice. Then went to Park Guell where almost every surface was covered in mosaics...colours were so vibrant. Casa Mila next. The roof was crazy...covered in bizarre, alien-like statues - some wooden, some mosaic, some stone - and steps going up and down, up and down, so that as you walked around it felt like bobbing around in the sea. Then onto Casa Battlo a little way down the road - covered in jewel-coloured mosaics and stained glass.

Wednesday - Picasso Museum. Permanent collection wasn't all that great to be totally honest but they were holding a temporary exhibition of Lee Miller's photographs of Picasso and that was really fantastic. Walked around the Barri Gotic, or the Gothic Quarter, in the afternoon, and at every turn there was more amazing architecture to behold.

Thursday was spent walking down La Rambla to the Port laughing at all the living statues and cringing at all the animals crammed into tiny cages on the pet stalls. Loads of shopping to be done - including a visit to C and A (which hadn't seemed to have changed it's stock since 1987) and a 'Pick-and Mix' sweet shop called "Happy Pills" where you could buy medicine bottles of various sizes for different amounts of Euros and then fill them up with sweets.

After one last Cappucino it was back to the airport, back onboard "Sleazy Jet" and back to Gatwick...where it was raining...hard.

Gaby's Hen Night was on Saturday. Very fun evening was had by all. The venue was 'Madison's'...possibly the cheesiest venue I have ever been to...one minute the waiters/waitresses are dishing out dinner, the next they're leaping on top of a piano and belting out 'I Will Survive' and 'Love Shack'...QUALITY Mate...'AVE IT!

Tuesday 26th June 2007

2007-07-20T13:17:00.000-07:00

Horrible night filled with bad dreams and nightmares. Kept waking up in floods of tears , with a terrible sense of unexplained fear in my stomach - a real plunging feeling. Incredibly tired of feeling up and down, and of putting a brave face on. Don't have the strength to do it anymore and just feel I'm becoming a chore to be around. I'm lost...

Friday 15th June 2007

2007-07-06T15:45:00.000-07:00

13th Chemo session today. Went well even though PICC line still not bleeding...ugh. What was also cool was I got to meet Nicola who was having her first Chemo session for Hodgkins'. Made a real difference to have someone around my age to talk to and swap stories with.

Turned 26 on Sunday. Had busy 3 days to celebrate. Saturday was Antonia's Birthday Barge Bash. She hired a barge and spent the day sailing down the river from Godalming to Guildford. Extremely sunny - v good fun.

Sunday - Mum, Dad, Denise, Vic, Nicky, Paul and I went to Great Fosters in Egham and had a really yummy meal in the sunshine, on the terrace.

Monday - back to Brighton and held a BBQ in our back garden, then had a bit of a crazy, hazy night in the maroon basement that is the Candy Bar.

Tuesday - Rebecca came down from London after work and we went to Carluccio's for dinner. Really appreciate the effort people have made to visit - not just over my Birthday, but from day-to-day too.

Still feel a little in limbo, particularly when I'm asked what I'm going to do after treatment finishes because I just don't know. Feel quite lonely still...and a bit down, but am off to Barcelona on Monday, with Mommy Dearest and hope it's going to be a good few days.

Friday 1st June 2007

2007-06-13T15:13:00.000-07:00

4.03PM: And so the worsip of the porcelain god begins.

12th Chemo session today. 4 to go! PICC line is flushing, but not bleeding. Joy oh joy.

Lucy came to visit Monday and Tuesday. Really lovely to see her. We had A LOT of fun. Particularly on a horse racing game on the Pier. Managed to get it to gallop. Steering it was another matter, as was getting off the sodding thing...surprised I didn't need the Fire Brigade.

Must dash...literally. Vomit calls.

Sunday 27th May 2007

2007-06-13T14:41:00.000-07:00

What a fucking fantastic weekend! It all began when I collected Treacle Tart aka Ms Leticia Jennings and we headed up to Stratford-upon-Avon, singing along to Fleetwood Mac's 'Greatest Hits.'

After driving around a mini-roundabout 3 times trying to find the Twelfth Night Guest House car park, and then 4 attempts to park the car in a garage the size of a rabbit hutch, we hit the streets of Stratford in true OAP-style by stopping off at The Shakespeare Hotel first for a Cream Tea.

Then after a quick ride, at almost whiplash speed, on the carousel we decided to hire a rowboat on the River Avon. I began the rowing. Letty's reaction: "We've got a fucking hour of this." So, after 5 minutes Letty took over the rowing. Oxford and Cambridge had nothing on us. After another 5 minutes: "How long has it been now? Where's the pub?" Another half-hour of swan dodging, barge crashing and slightly-dodgy rowing later we decided the pub was definitely the better idea.

We then descended upon the Vintner restaurant for a gorgeous meal during which I got slightly over-excited about their toilets being authentic "Crappers" and us having to endure the loud, boring voice of a girl on the next table. Choice quotes from her conversation were:

"I'm so proud of my sister, Christabel, (Oh God, she would be called Christabel). It's so lovely that we both work in the theatre." (Ugh and shudder).

"I'm going to be out of the country next week. N.Y. New York." (Thank Christ, can you go now?)

"Well I've never actually spoken to Ben, but I know him SO well." (Yes, I'm much the same with the Pope actually).

Anyway, suitably stuffed, we waddled to The Courtyard theatre and took our seats among the Gods to watch Sir Ian McKellen star in "King Lear." I was slightly more pleased that Frances Barber was playing Goneril, but we both got to see slightly more of Gandalf the Wise than we expected when he stripped off v near the interval. I swear we were the only two giggling but I hadn't expected to see the "noble steed" of a Knight of the Realm. The performance, in all aspects, literally, was huge.

Then it was back to the Twelfth Night Guest House where I think Laura Ashley herself may have spontaneously combusted and ended up everywhere. Chintzy does not even begin to cover it. However, it was clean and comfy (if not a LITTLE snug).

Breakfast this morning lived up to the internet promise of being served on Royal Wedgewood china. However, it was served by a Polish waitress, who confusingly knew the English "I'm sorry. It's my first day, I don't understand" but not "Water please". Our request for Brown Sauce was granted with "yes" and then...nothing.

Our trip back "down South" was once again soundtracked by Fleetwood Mac interspersed with "Wuthering Heights" by Kate Bushg (complete with hand actions), but another stop had to be made in the tiny village of Gaydon (oh come on...we HAD to stop) and juvenile photos had to be taken in the pissing rain by the one road sign that seemed to be the only attraction the village had.

So, now that I've stitched my sides together, I think I will go and sleep. Lucy's coming to stay tomorrow. Haven't seen her in AGES. V excited!

Oh...and this entry is dedicated to Treacle Tart. Thank you for a brilliant weekend my lovely!

Friday 25th May 2007

2007-05-25T10:52:00.000-07:00

Bloody, bleeding PICC line is NOT doing exactly that...bleeding. So...had to have blood taken in traditional 'just a small scratch' way and getting my line replaced has proven to be big, painful waste of time. Ugh! Good news is that all blood levels are good and I'm off to see Sir Ian McKellen perform 'King Lear' in Stratford-upon-Avon with the lovely Leticia tomorrow. 'We are of the self-same mettle.' Maaaarvellous!!

Thursday 24th May 2007

2007-05-25T10:43:00.000-07:00

Some email responses to my Blog:

Lauren:
Love youuuuuuuuuuuuuuxxxxx

Rachel:
Pippin,
I have just sat down to read through your blog. And I am so glad I did.
I never really knew what you were going through before - just how horrid / scary / painful / the last few months have been for you. I guess I was too scared to ask as I may not have been prepared for the answer.
You are one hell of an amazing girl (I'm not just saying that because you have cancer) I really do mean it, the way you have dealt with everything that has been thrown at you. You also look bloody fabulous with a shaved head (and yes, I really do mean that too - not many girls could pull off that look!).
Carry on writing sweetie - I will be first in line to buy a copy of 'Philippa Bigham - The Autobiography'!.
Miss you lots. Let me know how things are going.
All my love, Rachel x x x

Lucy:
It is brilliantly written Pip! It made me sad realising the extent of what you have been through. I think it is impossible for me or anyone else who has not been effected by a serious disease to imagine just how hard it must be.
Looking forward to my visit - maybe we can go to the pier and get an ice cream (with quite a few scoops!)
Lucy xxx

Thursday 17th May 2007

2007-05-17T13:02:00.000-07:00

Woken up this morning to discover I've got my first period in months. Hoorah. Ouch.

Arm is still there. Hoorah. Ouch.

Finished 'The Night Watch' by Sarah Waters last night. Excellent but quite bleak.

Feel very ugly at the moment. Ugly and fat and bald. Think I resemble Jimmy Krankie minus the awful voice, and the school uniform.

Last of the 5 days of injections today. Hoorah. Ouch. Not too bad really. Just stings a bit and having to push needle into my stomach isn't as bad as I thought it would be. Quite scary how easily get used to it.

Chemo tomo. Number 11. Double figures. Hoorah. Vomit

Wednesday 16th May 2007

2007-05-17T12:58:00.000-07:00

My arm is killing me. It has gone from feeling like a million obese people have sat on it to feeling like a T-Rex has had a bit of a nibble. I have to hold it in front of me, slightly bent at the elbow. I look like Larry Grayson doing a 'I'm a little teapot...' routine. Hot!

Friday 11th May 2007

2007-05-17T12:54:00.000-07:00

Had to have my PICC line replaced today. Went in at 10am. Wasn't seen til nearly 12.30. They put local anaesthetic in arm then put a wire up old line to try and remove fibroid covering end of line but it was really uncomfortable and to avoid serious vein trouble old line was removed and new one put in. Felt really sick afterwards. Fainted. Bit at least line bleeds now and my blood count was fine. Arm feels extremely bruised and achey.

Emotionally up and down. Nausea up and down. Bit more up than down really. Extremely tired now.

Will get better. Life will return to normal and I'll be all the stronger for this. Must remain positive.

Wednesday 9th May 2007

2007-05-17T12:50:00.000-07:00

Scan results day. Treatment's working! Not 100% clear, but not expected to be. CT Scan is just black and white photo so could just be scarring in the nodes, not active disease. Everything has reduced. May be left with something at end. I'll have another CT at end. If not clear then may need PET scan which shows whether there's disease activity or not. If so then radiotherapy can be used.

V relieved treatment's working and everything's progressing as it should. Still feel I've got a long way to go but must focus on the positive.

Thursday 3rd May 2007

2007-05-17T12:48:00.000-07:00

10am: Can't stop crying. Really freaking out about everything. So fed up and sick of it all. Just want treatment to be over. Just want to be better. Feel like everyone's moving on without me. Feel like I've got nothing. No job, no house, no partner, no hair. Want those scan results. It's driving me INSANE!!

Saturday 28th April 2007

2007-05-17T12:41:00.000-07:00

11pm: Ross has just shaved my head with his clippers. Grade 4 all over. There was actually very little hair on the floor afterwards. I suppose because it has fallen out gradually I haven't noticed how thin it had become. I've put some of it in a matchbox.

It wasn't as bad a process as I thought it would be, although I'm sad to report that I don't look like Sigourney Weaver in 'Alien' or Sinead O'Connor. Instead I look extremely butch and fear I may give young children nightmares and old people heart attacks. On the plus side...it's a lot cooler temperature wise, it feels like a small furry mammal to touch and I no longer wake up with a mouthful of hair.

Photo 1: Me with shaved head. Photo 2: Me and Marina.

Wednesday 25th April 2007

2007-05-17T12:19:00.000-07:00

Went to London today and had a wonderful day. Met up with Rebecca and Oli and went to Patisserie Valerie. Gorgeous Tarte aux Fraises. £3.75 so bit pricey but bloody lovely. Hadn't seen Oli since he came to see me in hospital and it was really good to see him. Shame Lucy wasn't there. Realised how much I miss them being in Brighton.

Rebecca came with me to Bloomsbury of London (http://www.bloomsburywigs.com)to get my wig, Marina, thinned out a bit. They were so helpful. You're quite vulnerable when you're going bald and I imagine quite open to paying a lot of money for anything that might work. However, I was only charged £20 and Marina looks so much better now...I feel I can wear her without people being able to guess it's a wig. In fact, when I walked out no-one looked at me...although I was looking at them and constantly wondering if they had their own hair or someone else's. Anyway, Bloomsbury were fabulous and I would highly recommend them to anyone in a similar position.

Met up with Charlie. Went to Wagamama's for my usual Chicken Katsu Curry and then went to Gilbert and George exhibition at Tate Modern - giant multi-coloured turds and penises...contemporary culture at it's best! Strange that theor earlier work is much more reserved and black and white.

Wednesday 11th April 2007

2007-05-17T11:30:00.000-07:00

CAT scan today. Bloody farce that was. Turned up thinking 'Yuck, I'll have to drink that weird blackcurrant Barium drink, but at least I won't have to be mauled with a canular this time...they can use my PICC line.' Wrong! So once again I had to endure the nurse smacking my veins in the joint of my left arm while I clenched and un-clenched my fist (and teeth and buttocks to be honest) and then 'just a sharp scratch'...rendering my left arm completel useless.

'Are you wearing an underwired bra?' Of course I was. With one arm I somehow managed to remove my t-shirt and bra and then re-dress. Then, whilst lying down under a blanket I had to tilt hips up, shuffle trousers down, up, down, up, down, up and relax. Injection tube was connected to the canular and then in my best sunbathing pose I heard the 'breathe in and hold' automated command. The ring moved up and down over my body. The machine stopped. 'Have you had an operation on your hip?' 'No' Thinking 'It's my bloody knickers.' In the attempt to look half-decent had put on knickers with pink ribbon and metal monkey attached. (They sound disgusting, they're just tacky). Anyway after another tilt, shuffle, up, down, wriggle, etc we started again. Scan was over quite quickly actually. Putting my knickers and trousers back on, with the use of one arm, under a blanket, wasn't. Still, canular was swiftly removed (ow, buggeration, you bloody, bloody bastard) and I was on my way. Results in a month. A month. Yes...one bloody month. Ugh.

Collected 'Marina' today...the wig. It resembles road kill when it's not on my head and Paul McCartney circa 1965 when it is. She loves you, yeah, yeah, yeah...

Been OK in myself these past couple of weeks. I now weigh 11st 7lb. Before all this I think I was nearing 15st. Rebecca came to stay last Wed (so, so, so good to see her) and she mentioned how much weight I've lost but I just can't see it. Still see the old, fat me in the mirror. Can't get my head around it at all and have no real idea what size I am so end up taking half the shop into the changing room with me. Tres bizarre.

Still feeling nauseous and being sick a lot. However, Mum's going to take me to Barcelona for my Birthday so that's something to plan and focus on. Viva Espanga!

Saturday 31st March 2007

2007-05-17T11:17:00.000-07:00

I've had (in general) a really good week, this week. Things with Ellie are a little difficult - she's got a lot on her mind and seems very distant and distracted. I want to help, but am not too sure how. Just have to sit it out, be here if she needs me, not take it too personally if she doesn't.

Grandad's been admitted to hospital. They think he's had a stroke which has caused his brain to swell and bring on dementia. Dad's down in Worthing trying to sort out the bungalow and find a home for Grandad who keeps escaping from the ward - Monday night he was found trying to enter a nightclub in Brighton! Wonder if it was the Candy Bar?!

Dad came down on Sunday night and took Lauren, Ross and I out for dinner at Pizza Express. We went bowling afterwards. Actually had a really good laugh.

Mum came down to visit for the day on Tuesday. Weather was glorious. Mum loved the house. We wandered through The Lanes, had lunch at GBK and sat on the beach. Ellie and I went for a bike ride then I met up with Chelsey for couple of hours and got v drunk. Oops. Oh well.

Wednesday - spent day with Lucy Spilberg. Went shopping. Had lunch at Moments Cafe with Lucy and her colleague, Helen. Spent another couple of hours talking about everything and nothing. Evening met up with Antonia, Becca and Becca's housemates for few drinks in The Hanover. V cool day.

Thursday - volunteered at Hove YMCA. They run an activities club for the elderly so helped them do some drawing. Most are fully mentally and physically able, but a couple aren't and that was a little distressing at first, but it helped me to focus my mind on something else. Went to town to meet Ellie and Christa (WondyWoman). My God that girl is hilarious! One of the coolest, funkiest people I have ever met. Wicked!

Was zapped yday. Took forever. Unit was filled with old, miserable men. Don't think it's the Chemo that makes them that way. Think they're like that to begin with. Anyway, was glad to get out.

Sickness is getting worse. As the drugs are building up in my system they're taking their toll on me. It's not too bad - just a bit nasty to have to dash down alleyways a lot. Have my 'half-way' scan on 11th April and that'll determine my progress. Half-way. Gosh - weird! it's preying on my mind though. Whole waiting process begins again. Still...off to see Dawn tomo and Rebecca's coming to stay on Wed - SO, SO, SO excited!!

Sunday 18th March 2007

2007-05-17T11:03:00.000-07:00

8.20pm, Mother's Day: I FEEL SICK! BLEURGH! I have now felt nauseous for approx. 50 hours. I have been horrendously sick today. This could be due to the fried breakfast I ate at 10am this morning in Kensington's - the only restaurant to serve salad on the same plate as fried eggs...wrong, very wrong.

Friday night was the worst vomit night. They have put me on new anti-nausea tablets, which are supposed to be much more effective. Not with me, sadly. I used to feel v sick all of Friday (after Chemo) but then feel perfectly normal and never need to worship the porcelain god. Now I feel sick up until Wednesday after Chemo and need to rush off to vomit at v inappropriate times and places...down the side of a wheelie-bin, in an alley off St James's St is the classiest place I have needed to 'decorate' so far.

Actually undergoing Chemotherapy is a very bizarre process in itself. The Haemotology Day Unit I attend for treatment is split into different areas. There are 2 consulting/treatment rooms and 2 larger open plan areas...one for Chemo, one for blood transfusions. In both areas you sit in chairs arranged in an open circle. People chit-chat to each other occasionally, but mainly I find it tends to be mostly populated by old men...snoring.

I suppose the most peculiar aspect of Chemo is that some of the other patients are in competition with each other about how much weight they've lost/gained; how quickly their hair fell out; how sick they've been; how bitter the taste in your mouth can become. They moan on and on, and on...trying to outdo each other. Oh, and woe betide you if you don't get one of the side effects. For instance, my tastebuds have (so far) been unaffected. I stupidly admitted this to one of the other patients. I then received a 10 minute rant about how lucky I am, how terrible it is for them...but it was almost as if he felt he had something over me. It's bizarre...a bit like comparing new cars...

My hair is really thinning now. It doesn't come out in clumps, but there are far more strands appearing on my pillow and there was quite a lot caught in the plug hole after my shower yesterday. I have therefore ordered 3 wigs from the 'wig woman' at the hosp. I was passed a catalogue to 'peruse and choose' from. All the wig's were given women's names for the styles, and beverage titles for the colours. I chose Laura, Erica and Marina. Colour - Espresso. This means I could end up with an Erica Espresso on my head. Now all I need to worry about is a seagull swooping down and whisking it off my skull.

Off to see Dolly Parton at Wembley with Mum tomorrow. Now Dolly's someone who knows how to wear a wig!

Sunday 11th March 2007

2007-05-17T10:44:00.000-07:00

I cannot believe that it has been 2 months since I wrote in this dairy. Chemo is becoming a real drag to be honest. It's so good to be back in Brighton but having to drive back each Thursday for either Chemo or blood count is slowly sending me under. As is the nausea after Chemo (new more effective anti-sickness tablets - pah! Rubbish!) and the irregular periods, and the water retention, and the gradual hair loss, and this hideous line in my arm. I know it's all a process, but I'm fed up with it. I just want it to be over. My moods are very up and down at the moment. I feel quite lost in this new life of mine.

There was a quote in a magazine that really summarised my current state: 'Not changing isn't an option. I'm a different person, with a different life but the past is always with me.' I'm slowly adapting to my new life but the worry and fear and pain I felt (but never dealt with properly at the time) is really affecting me. I keep having very vivid nightmares, or I feel very tearful and anxious in the middle of the night, or I clam up and then snap at people. I'm going to pursue counselling. I need to talk about this with a neutral party. Writing helps, but I need to articulate it better and get some perspective. I guess I need to grow up and stop being so bloody middle-class about things. I must stop dwelling on the negative aspects and stop being so scared. I don't mean I should forget I have cancer (I don't think I could) but it's only one part of me and it will soon be gone (I hope!)

It's changed me - in so many ways - and most of them positively. I've got a real sense of what matters now. I wake up everyday pleased that another day is happening. I've got the time, money, resources and support to do whatever I want and I am so fortunate for that. On Friday I hated going to Frimley Park. I SO nearly turned around and walked away but I remembered that I would be able to leave after the appointment. Not everyone can. I'm not disabled, my grotty skin is slowly healing, I can come and go as I please. I'm one lucky sod and I don't want to waste this 'time off.' I know I'm going to have an infection that will hospitalise me at some point and that is fucking scary...but for now...take each day as it comes. What will be, will be. It's beautiful outside. I stood and watched the sun sparkle on the sea and felt really happy and alive and I'm going to stop wanking on now cos I'm boring myself senseless.

Tuesday 9th January 2007

2007-05-17T10:41:00.000-07:00

7.35am: General consensus - If anyone can cope with cancer, Pip can. She's so incredibly strong.

Well...IT'S NOT FUCKING FAIR.

I don't feel strong. I'm not the 'best candidate.'

I DON'T WANT TO FUCKING COPE. I DON'T WANT THIS ANYMORE. I CAN'T DO THIS. I'M SCARED.

FUCK YOU GOD. FUCK YOU, YOU SICK BASTARD. WHY ME? WHY? FUCK YOU FUCK YOU FUCK YOU FUCK YOU FUCK YOU FUCK YOU FUCK YOU FUCK YOU FUCK YOU FUCK YOU!

Sunday 6th January 2007

2007-05-17T10:32:00.000-07:00

I'M IN BRIGHTON!! Drove myself back yesterday afternoon. So, so lovely to be back. Lauren loves the 'Junior Post Office' I got for her and gave me a card with really sweet words in it about missing me and things.

Mum was in floods of tears as I left. I'm going back home Thursday for treatment on Friday, but we've become even closer oven the past few weird months and she's used to looking after me.

Woke up really late today. Feel quite rough. Have had really bad stomach pain for past couple of days, but I've done a lot this past week:

Tue - Rebecca came to visit. Spent ages in Camberley. Drove for the first time in...well since 20th Oct.
Fri - blood test at hosp. Collected Becky, drove her to EIHMS to drop off her assignment then went for a drink in 'the nice pub for nice people', The Astolat. Drove back...Then Marilyn and Lucy came round. V nice to see them.
Yesterday - packed, drove here, dusted room, made bed, cooked dinner...bloody knackering!

Have to inject myself again. It's fine. The thought of it is worse than actually doing it. At least it's only for 3 days - just once a day, to 'boost' my bone marrow.

Hair's noticeably falling out bit faster. Spot lots of strands of hair on my t-shirt a lot more. Mouth gets quite sore if I don't use the mouthwash (Corsadyl) regularly enough either. Apart from that I'm dandy. Having to learn to pace myself and that's quite difficult. Just so lucky to be back by the sea!!

Sunday 31st December 2006

2007-05-16T11:24:00.000-07:00

12.02am: And so it is the last day of 2006 and what an eventful and peculiar year it has been!

Blood transfusion went well on Wednesday. Mum and I went to Primark on Thursday to buy some new clothes as all my trousers are too big. It was a v weird experience. People are quite shocked by the amount of weight I've lost (I've gone down 2 dress sizes) but when I look in the mirror I still see the Pip from before. I was looking at jeans thinking 'They'll never fit me...they're far too small' and then they fit perfectly. Really odd, but rather good. Hope I continue to lose and not gain weight.

Chemo went well on Friday but I felt really sick in the evening and was v glad that I'd been given some anti-nausea tablets to bring home. Felt really tired this morning. Stayed in bed til 12 and when I got up discovered that I had my first period for 2 months. Had a shower (using Philosophy toiletries because I have virtually no itching now...BLISS, BLISS, BLISS) and even managed to shave the amazon that had become my armpits!

Laura, Gaby and Rachel arrived about 2pm. Rachel and Ian got engaged on Christmas Day so a lot of the talk was about wedding plans. It was so wonderful to see them all and to be up and dressed and easily mobile...felt like me again.

Have to go back to hospital on Friday...just a 15 minute appointment for a blood test and dressing change and then I'm hoping to drive back to Brighton on Sat and stay til Thurs. Really hope I can...it's been SO long and I really miss Lauren and Ross, plus I've got a real craving for a walk by the sea since our stay at the hotel. Fingers crossed...

Wednesday 27th December 2006

2007-05-16T11:19:00.000-07:00

11.17am: I've chosen red paper as I feel it's most appropriate. This is bloody weird. I'm sat here listening to Bob Dylan on my iPod while someone else's blood is being transfused into me...I'll never know whose blood it is, whose heart it's filtered through but it's now my blood and it's too surreal to believe...

Saturday 23rd December 2006

2007-05-16T11:05:00.000-07:00

I AM SO HAPPY! My Christmas wish came true. Am currently writing this while sitting on possibly the largest bed in the world in Room 126 of the Berkely Hotel, Worthing. There's a huge, floor-to-ceiling window that looks straight onto the beach. Have had the best day and Mum and Dad are so relaxed it's perfect, but more on that later.

My room is absolutely GORGEOUS! Dad has done such a good job and the floor looks lush. My desk now faces the window. It's going to be lovely to work, etc, while looking outside...so many birds in the back garden the other day (magpies, bluetit, jays, pigeon, woodpigeon, thrush, starling, blackbirds *snigger...thrush*). Rebecca visited for dinner (roast chicken, mash and gravy - first non-hospital meal...yum!) on Tuesday. So good to see her and I look so well now she said she felt much more reassured.

Only downside of the week is I was due to have Chemo yesterday. However, blood count too low and so I had to delay it by a week and be put on a 'clean diet' (basically eating everything that's been tinned, processed or individually sealed e.g. cartons of Ribena, sachets of tomato ketchup, etc). I have to have blood transfusion on Wed, which takes 6 hours apparently, but is meant to give you a real high and then I'll have Chemo Fri.

Driving down here was amazing. Can't describe how wonderful it was to see all the trees, fields, shops, etc. Going shopping even better! Felt what a prisoner must feel when they take first step outside prison doors. Previously I have been nowhere but my house or my hospital room for 10 weeks! All the Christmas lights were on...really pretty!

Have a feeling this is going to be best Christmas ever. I feel better than I've done in so long. I'm up and walking. I have energy and I'm out of the house and near the sea. Oh I do like to be beside the seaside, oh I do like to be beside the sea...

21st December 2006

2007-05-16T11:03:00.000-07:00

Medication -

8am: 3 x 100mg Gabapentin, 1 x Tramadol, 1 x Septrin (Mon, Wed, Fri only), 1 x Omeprazole, 1 x Allopurinol, 1 x Piriton, 2 x Fluconazole

Noon: 1 x Piriton

6pm: 1 x Tramadol, 1 x Septrin (Mon, Wed, Fri only)

10pm: 1 x Piriton, 3 x 100mg Gabapentin

Monday 18th December 2006

2007-05-04T11:57:00.000-07:00

Today I have been in hospital for four weeks. In one way it has gone incredibly quickly; in another it has seemed like eternity. Dad has finished my room at home - all the bits and pieces need returning now, which will probably take longer than the decorating. Am v excited bout seeing it and so glad it's been redone - it was so tatty and dark before that it seriously depressed and opressed me; also I associate the old room with feeling the worst I have ever felt in my life.

Prof Smith, etc are coming round this afternoon. I really hope they say I can go home tomorrow - will be gutted if I can't.

This past month, well couple of months, has made me realise how easily we take things for granted. It's human nature but it's also dangerous. The nurse who did my obs last night told me her story where she had recovered from a serious infection in her legs but woke one morning to find one side of her body completely paralysed. She had a 9 month old son and a 3 year old daughter and had made plans to do this, that and the other and then woke up unable to move. She called for an ambulance and was rushed to hospital. After treatment she was 100% ok in 2 days. She said it made her completely believe in God, but also that we need to take each day as it comes and be tahnkful for the life we lead each day. I agree wholeheartedly. It just really struck me today that even though I have cancer I am incredibly lucky and blessed. I will recover from this and have the qualifications and opportunity to do whatever I want to do. I have had a wonderful life so far and feel that after experience I will have an even more beautiful life.

I have the most amazing and supportive parents in the world. The way that they have raised me; the education, opportunity, encouragement, love and care they have given me is beyond compare; and the truly liberal and outstanding way in which they treated my 'coming out' is exceptional. We are all going to have our own journeys to complete over the coming months, and our own demons to face, but we will do it together and I don't know many people that are lucky enough to have that support. What I'm trying to say is that my life could have been v different before and I didn't really appreciate that. It is a v surreal thing to say that getting this disease has been like receiving a gift, but it is. My eyes have been opened totally; my opinions wildly transformed; my outlook completely changed.

However, and I don't know if this is an incredibly vain thing to note, but I am getting increasingly upset about being bald. I think that's going to be the most distressing part of all this. I know my hair will grow back after treatment (sometimes it grows back a different colour and texture - hope I don't get a ginger afro) but having no hair and this PICC line in my arm does not inspire the words 'sexy' or 'vibrant'. Still, I will hopefully lose some weight on Chemo (really hope I don't gain it); have my skin returned to normal and the itch permanently removed; and my hair restored - I will be Kylie at the end of this, although maybe not as short or Australian.

Saturday 16th December 2006

2007-05-01T07:37:00.000-07:00

I intensely dislike the patient next door. He does nothing for my opinion of priests.

He has a chest infection and I know this is not his fault and it must be v painful but the noise when he coughs is so annoying. He is profoundly deaf, but never turns his f'ing hearing aid on, preferring to shout at people, have them shout back and have his TV on full volume. The phone is rarely detached from his ear where he demands things to be brought in for him in the most bossy way, seemingly uncaring about his flock as I never hear him mention any work he needs doing, or parishioners he wants contacting.

Mostly I dislike him because he is SO rude - especially to the care assistants (who he obviously doesn't see as being as important as nurses) and woe betide you if you are black. He hardly ever says please and thank you. Last night his nebuliser ran out of the water cartridge that produces the steam so he pushed his call bell. A black care assistant (I should add the word 'female' here) came. Big mistake. 'It's run out of steam. Get me another one. Now.' That was what he said. I was fuming. He dares to call himself Christian. Disgusting.

There is a lovely care assistant here from Belgium. We were talking this morning about me going home and how she feels so much for Mum because her son is 24 and she can only dread to imagine how Mum feels about me being in here. Anyway, she reminds me of Shelagh - rarely a bad word to say about anyone and if she does say something it's incredibly understated i.e. Hitler went a little bit crazy - and she said that I make a lovely patient, while others don't. She pointed to next door and said 'He can be a bit cruel sometimes, but he's ill and I think, what would I be like in his position?' Well, I'm sorry, but I'm obviously not as kind-minded as that. We're all ill here, some more than others, but if it wasn't for these Earthbound angels we'd all be a lot iller...plus he's a sodding priest...he should have some bloody manners and humility. Sermon over. God bless!

Friday 15th December 2006

2007-04-24T05:28:00.000-07:00

Good day! Yesterday Ali said that he wanted me to stay in til next Fri/Sat. Today Prof Smith said that if I continue to make this progress I can go home Mon/Tue!

HAVE JUST HAD SHOWER, DRIED SELF, MOISTURISED, GOT DRESSED AND DRIED HAIR - ALL BY MYSELF!!! I know this seems trivial but I haven't been able to do that for about 8 weeks! Previously had baths which Mum ran, helped me in and out of, dried me, applied steroid creams, dressed me and dried hair; or while I was in here she would give me a sponge bath. It's a great acheivement to have done all this by myself and I need to celebrate it.

Have taken photo of myself in here and a photo of my legs which look SO much better. It's a real bugger - my hair has finally got to the stage and style I wanted for ages and it was such a lovely sensation to wash it and dry it and in a couple of weeks I could be as bald as a coot. Oh well.

Thursday 14th December 2006

2007-04-24T05:06:00.000-07:00

2.06am: Am writing this now as woken up v itchy and am hoping it will distract me.

Had a good couple of days. Been able to swing my legs over side of bed and get up straight away - walking is still bit of a hobble but it's a step in the right direction -BOOM, BOOM.

Legs are now completely dry and scabbed over. The Inco sheets they put on my bed are brilliant. Basically they let me sleep/rest without sticking to the sheets whilst letting the air get to them. Neck is looking better - seems to have gone down a bit and where I've had stitches out is clean and dry.

Ali is v pleased with my progress. Arm is practically clear of scabs now. Gabapentin has been reduced to once in morn (8am) and once at night (10pm) so am less spaced out. Apparently the Chemo should start to subside itch within 10-14 days so can stop panicking that am still itchy, particularly on my back (although as one nurse said it's prob because I spend most of my time on my back - bloody cheek!)

Palms of hands aren't scaly/flaky anymore - thank God! Even holding a magazine could be sore at times.

Jen and Shelagh came to visit today. Jen looked fantastic. V well and slim. Shelagh also looked happy, fit and health which I'm so pleased about as she's recently got over breast cancer. Was really lovely to see them both and have good old gossip bout how rubbish EIHMS is becoming.

Katie came to visit this afternoon. Was bit apprehensive about it. Initially, Robert was meant to come and drive her down but he got called to Barbados (as you do when you're an air steward. Bastard) so she she ended up on train. Her parents mysteriously turned up at Frimley station and her Dad walked her to my room. Could have done without meeting him looking like a tramp but nevermind. She bought me a red rose made out of Lego as real flowers are banned due to health and safety reasons - v cool. She looked v scared and frightened to begin with and thought she was going to cry so I just waffled on about everything and nothing and I hope that eased her mind a little. I'm so used to it here now that I don't see the scary side anymore. Explained that before whole process started my biggest fear was getting cancer. You see all these adverts on TV, but you never think it will happen to you. Also, before this, I thought all cancers were same: you either receive chemo/radiotherapy/both and associated them with death. However, all cancers are different and treatment is now customised to the individual - not a generic, one-size-fits-all policy. Hodgkins is so treatable and the more people I speak to, the more I hear tales of people they know who've had it and made a full recovery.

Hadn't seen Katie or really spoken to her since night we broke up, but it was nice to just hang out with her and not mention any of that. Mum turned up when Katie was still here. Did warn Katie that parents were arriving at 7 but she didn't seem bothered when I said it was nearly 7. Anyway, Mum arrived. Talk about Permafrost. Thing is Mum's seen how upset I've been over the two break-ups (particularly the first) and she doesn't want me getting hurt/getting back with Katie. Explained that neither will happen - I don't paln on getting with anyone in the near future, got enough to deal with - and she seemed reassured and apologised for being overprotective.

Am feeling so much better in myself. Gabapentin has forced me to rest so I've slept really well past few days and all nurses have commented on how much better I'm looking. I've also learnt that I don't have to put brave face on things and struggle through - that I should listen to my body and tell someone else what it tells me. They can help. That's what medicine is, but as per usual, I'm little slow on uptake.

Really hope I can leave soon. If I'm still here Monday I'll have been in for 4 weeks! Am desperate to go to bookshop and to start buying hats. Also really want to go to the hotel for Crimbo. I think whole family NEEDS it more than anything...so please FC, if you're listening, that's what I want for Christmas.

Monday 11th December 2006

2007-04-12T12:37:00.000-07:00

11.53am: Bloody hell...this Gabapentin is good stuff. Have spent most of weekend completely spaced out. Kept tripping. Had a vision that a male nurse was too big to fit through the door and so was easing through limb by limb. It's so bizarre...like dreaming when you're awake. 'Each time I blink I have a tiny dream.'

Back and bottom still itchy but left arm, legs and feet not itchy. Haven't scratched for past 3 nights. YES!

Getting to the toilet was lot easier this morn. Swung legs round and didn't need to put feet on chair first. Put feet straight on floor and nowhere near as painful. Have been able to go to loo, sit at sink and brush teeth and was face and get own clothes out and get changed on chair rather than bed.

Prof came round this morn. Seems pleased with my progress. Wants to gradually reduce Gabapentin (no point taking me straight off and itch returning) and keep an eye on me for next week...so all bring well and good I should *Touch Wood* be out by next Monday and in my spangly new bedroom.

Saturday 9th December 2006

2007-04-12T12:22:00.000-07:00

The reason I have taken photos is I think it would be v difficult to describe the appearance, plus you can see how they have got progressively worse. However, now I'm on IV antibiotics plus oral antibiotics and an increased dosage of Gabapentin, I'm scratching less and healing more.

Had my first Chemo session yesterday - went really well. Wendy, my Chemo nurse was really friendly and explained each and every step thoroughly. Previously, I had a bag of saline attached to my PICC line for about an hour. Then Wendy came in and removed the stitches from my PICC line, making it more comfy for me and easier for her to administer the drugs. I had an anti-nausea drug injected into the line, then another drug that made it feel as if I was sitting on a hedgehog, then another which looked like Tizer and made my pee turn bright red later in the day; and then another which had no effect. After this, a bag of Chemo drugs were hooked up and attached to a pump to push it through more quickly. Wendy informed me it would take about an hour to complete and that she'd return then. Was so whacked out on Gabapentin that I slept for the whole thing! Wendy then returned and unhooked everything and redressed my PICC line. If I want a bath or shower I have to wrap it in cling film and try to keep it out of water as much as poss.

Prof. Smith came in to see me in the afternoon. He said that the Chemo should stop the itching gradually over next 4-7 days and this is a sign that I'm responding to treatment...so cross everything!!!

Thursday 7th December 2006

2007-04-12T12:13:00.000-07:00

1.36pm: Had another bad night. Bandages on my legs were too tight, so asked nurse to take them off and then she placed a big pad/sheet under legs which I can't get stuck to. Just need to get the air to them.

Bad morning - SO fed up at not being able to walk or even stand. Pushed my table back, bowl of Rice Krispies fell onto floor and broke and that's when I broke. Floods of tears. First time I've cried about this I think.

Marilyn rang - Do I want to do Market Research re Cancer for a few quid? Said I would so waiting for call.

Rebecca rang. Told her news about my morning. Cried. Told her that my hair will fall out in 3-4 weeks, which is really distressing me. She's coming to visit on Sunday. She truly is a TRUE friend and travelling for a long time and paying for train tickets when she's not got the money.

Charlie rang. She may visit Tue as long as I don't feel poo by then.

Antonia and Lorna coming tonight. Be good to have friends visit. Last 2 nights have just had my parents here and I've got snappy towards them. Never spent so much time with them and although I feel guilty for getting bit fed up of them at times I think it's only natural.

Two new guys moved onto ward and my neighbours. Both have worst kind of cough you can imagine. Sounds like something prehistoric. Bet they were smokers. Should film them for anti-smoking ads. Writing this while eyes keep drooping. Absolutely knackered. Think I'll have a nap.

Wednesday 6th December 2006

2007-04-03T11:53:00.000-07:00

Well, I have got Hodgkins Lymphoma (Lymphocytes Depleted) which according to Dad's research is common in 18-39 yr olds and 50-70 yr olds, leaving out the 40 yr olds completely.

The treatment is the same as for the other 3 types (8 cycles of Chemo over 6-8 months) but they do something different at end and I'll need the stem cell autograft test. UCH not got back to them bout whether I need that now, but Ali thinks it's highly unlikely. So...if UCH don't recommend this test then it's quite possible that I'll start Chemo at end of this week. They want to keep me in until my skin infection has gone though, but Chemo helps stop itching and so (touch wood and whistle) I should be out of here for Crimbo - HOPE SO, SO MUCH!

In terms of me going back to Brighton, Ali has said that we need to see how I respond to 1st cycle and also how it makes me feel, so we can determine when, and how long for, that I can return. Am DESPERATE to get back. Lauren was so excited when I told her. Hope SO much we're not both disappointed.

PICC line's in right position. Still doesn't draw back but Ali said it's not a prob. Chemo can be administered via line and blood tests will just have to be done in traditional way - which is fine, as long as I can lay down.

Mum, Dad and I went to Pine Trees restaurant upstairs and Ali W from EIHMS was tutoring a student there so how grotty I look at mo will prob be all round the Institute by now.

Had an OK night. Legs and feet have been dressed loosely as the lesions are all gooey (nice!) and they were sticking to sheets, so everytime I moved it opened up the wounds again. It prevented me getting at legs to scratch but it's REALLY hot now and I resemble Michelin Man. Gabapentin had no real effect, but suppose takes a few days to kick in. Everyone says Chemo will cure it so this is all temporary measure to ease pain.

Mum, Dad and I were discussing re-decorating my room while I'm still in here. They have been absolute angels through all this. Could not have got this far without them. This has affected us all and yet they only care about me. I love them SO, SO, SO, SO much and owe them my life.

10.39pm: Feel a bit low. Been a busy day. Linda came round this am and talked to her for quite a bit. Ali came round to weigh me as I'm starting ABVD Chemo on Fri morning. It lasts about 2 hours and goes into my PICC line. Joseph (Specialist Chemo Nurse) came to talk to us. He's lovely! I will need treatment once a fortnight and blood tests once a week so I can go back to Brighton in between. He said I need to listen to my body but normality is v important. I just need my legs to get better. They are SO painful and I feel like a cripple hobbling to the loo. I'm virtually imprisoned on my bed, lying flat. Really pissed off.

Tuesday 5th December 2006

2007-04-03T11:44:00.000-07:00

6.47am: Forgot to mention yday that I had another chest X-Ray. My PICC line is flushing (i.e. they can put things into me, like the antibiotics) but they can't drawback (i.e. they can't withdraw blood from me). It's not a prob at mo with antibios, but will be problematic if it doesn't drawback when I start Chemo. So, they did an X-Ray to check PICC line is in right position within vien. Will hopefully receive results of that today, together with 100% diagnosis. Wonder what will have to be done if PICC line's in wrong place? They might have to pull it out and start again. Eeeugh!

Apparently they haven't heard back from UCH yet about whether or not I should have this stem cell collection procedure or not. Prof. Smith seems to think if not, they can start Chemo in few days time. However, have learnt my lesson of expecting results back quickly and so have prepared myself for long wait. Then, if it is short, everything's a bonus.

Had quite a bad night. Prof has prescribed me 300mg of Gabapentane (or something) to take before I sleep to (hopefully) stop me scratching - even in my sleep. Unfortunately, cough returned with vengeance last night, causing me to bring up loads of phlegm again - and I think I also brought up a lot of the Gabapentane. Managed to keep gloves on tonight but feet and lower legs are scratched red raw and my PJ bottoms are stuck to the wounds. It's going to be absolute murder changing them as it's going to rip wounds open when I attempt to take them off.

Stitches will hopefully come out today so I can see what scar is going to look like. Hope it makes me look hardcore so that no one will mess with me and small children will recoil in horror. Chuckle, chuckle. Bedside lamp bulb has gone which means writing's bit difficult so going to listen to Damien Rice's 'O' instead...

Monday 4th December 2006

2007-04-03T10:24:00.000-07:00

10.12pm: I suppose I should really explain why I'm in here in the first place. Well, I think it was about 20th October and I went for dinner at Lucy and Matt's. I felt v depressed and spent whole evening moaning. Went back home and couldn't sleep. Phoned in sick next day and spent whole day asleep/staring at the wall. Ditto next day. Then next day was Fri before half term. Somehow I managed to pack up stuff, have shower (so painful as had rash all over my body), load car and drive home. Went to doctor's but he said he didn't want to interfere with dermatologist's programme so suggested I make emergency appointment with them on Monday. Woke up Saturday in so much pain that I couldn't even sit comfortably. Went to emergency doctors and they suggested same as other doctor.

Monday came. Dr M-S not working on Monday so we went to see my GP who made some phonecalls and got me in to see Colonel Boxer. Now, when you hear name Col. Boxer you expect some strapping, 7ft man - instead got sweet version of Edna Mode from 'The Incredibles.' She said I had the treatable version of MRSA and prescribed baths at least once a day, creams to be applied twice a day and 3 types of tablets to be taken 4 times a day. She wanted to admit me to hospital for two weeks but I refused.

Second day of taking tablets, my neck swelled up hugely on one side. Felt iller than ever have in whole life. Mum rang emergency doctor and he said glands will swell to fight infection and will return to normal once finished tablets. Two weeks later pills were finished and went back to dermatologist who asked an Ear, Nose and Throat Consultant to look at my neck as it was still huge. He recommended that I have an emergency ultrasound to see if I had tumours in my neck. Had awful weekend thinking I might die.

Ultrasound was following Friday. Explained to Radiologist that glands had gone down slightly and so he said he felt there was no need to progress any further and he'd give me all clear in report to Col. Boxer. Great relief.

However, Sat and Sun felt really ill again and neck swelled more.

Monday 20th Nov went to GP. Was due to have patch test with Col. Boxer at 12. He said to keep appointment as he felt I needed to be admitted to hospital for tests and she had more clout than he did.

Went to see Col. Boxer and my God did she move fast. Phoned up and got me in for tests. Had bloods done. Gave me those and my notes and we drove to Frimley Park Hospital where had to attend MAU (Medical Assessment Unit). So grim. Filled with men groaning and grabbing their bits - in pleasure/pain I'm not too sure. Had BP, temp, pulse rate measured; more blood taken; ECG done; Chest X-Ray done and then was admitted to G4 Ward. Well, we walked in and it's full of 90 yr-old women sparked out and one mad woman from another ward shuffling in and out all the time, carrying two tins of Quality Street. Mum said 'Do not even sit on the bed Philippa. You're not staying here. I'm not having it, I'm just not' and started moving Dad and I back through these old women and their zimmer-frames. Ward Manager v nice and rang Bed Manager for us. She said that 80% of people in hospital are elderly. I said 'I can do elderly, but I won't do ga-ga.' Obviously, that went down well. Anyway, after waiting for couple of hours was admitted to here, G1 Ward, which is dept I need to be in anyway. Have my own room. No old women or Quality Street in here.

Tues 21st Nov - consultant Dr A came round and broke news that I had nodes in chest and most likely Hodgkins Lymphoma and that I needed CAT scan and then biopsy. Was SO scared I was going to die. Only person I knew who had lymphoma was Nikki's Dad and he had died from it.

Wed 22nd Nov - CAT scan. Already described horrid canular in arm to flush dye round body. Had to lie on table while large ring moved up and down over me and I had to hold breath at certain points. Came back to ward and nurse ripped canular out. F*CK ME! OW! OW!

Thur 23rd Nov - Biopsy under local anaesthetic. Ear, Nose and Throat Surgeon SO lovely. Came to explain whole process to me and my parents and then I signed consent form. Was meant to go up at 2. Period arrived (woohoo) but no porter. Went up at 5. Local anaesthetic stung like hell. Then had to shuffle onto really narrow operating table. (How do really fat people cope?!) Was told that lights would be really bright and due to Health and Safety reasons I should keep my eyes shut. Yeah - like I'll keep them open so that I can see you slice open my neck. Sound was awful though. Apart from hearing 'Relax. Drop your shoulders...I can't cut properly' and 'Pass the skin hooks' the sound of her cutting out the nodes was like the sound of when you cut the rind off bacon with scissors. Yuck! Anyway, neck hurt a bit when anaesthetic wore off but just felt like nasty cut for few days after.

Fri, Sat and Sun - nothing really happened. And then if you look back you can see what's happened from Mon 27th Nov onwards.

Lucy Kirke came to visit today. 4 hour train journey each way. My God! But I haven't seen her for so long, although it seemed like I only just saw her yesterday.

Lauren also came to visit me. Lauren is SO cool. No sooner had she left than she sent me text saying: 'Was so lovely to see you beehatch! Am all excited bout you coming back xxx.' Really hope I can go back soon. Need normality. Need sea air. Need head space to get through this. I really feel that I'm going to be ok, where I think if I was going to die, I would feel that. It's all bit crazy still. However, can already see how much this experience has changed me. Been in hospital 2 weeks today. MAD!!

Monday 4th December 2006

2007-03-23T16:16:00.000-07:00

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

2007-03-23T16:05:00.000-07:00

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

2007-03-23T16:01:00.000-07:00

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

2007-03-23T15:42:00.000-07:00

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

2007-03-20T13:52:00.000-07:00

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

2007-03-20T13:42:00.000-07:00

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

2007-03-20T13:33:00.000-07:00

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

2007-03-20T12:47:00.000-07:00

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

2007-03-20T12:27:00.000-07:00

Essentials to have in hospital:

Lip balm
L'Occitane Hand Cream
Liz Earle body wash
Toothbrush and paste
Fantastic novel
Journal and pens
PJ's
HUGE knickers!
Suckable sweets
Small change
Puzzle book, comics and chav mags
Spectacles
Squash
Towel
Slippers
Pashmina
iPod
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

2007-03-20T11:53:00.000-07:00

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