Friday 15th December 2006

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

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

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

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

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

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

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

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!!