Friday 25th May 2007

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!