Monday 25th Feb 2008

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

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

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

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

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

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

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

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

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

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.

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

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

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.