Sunday, April 30, 2006

Is There No End To This Man's Genius?

I believe I may have sorted things so that the correct time is shown. Ha. J x

No More Presents

Don't get me wrong, I love receiving presents but its getting embarrassing now. I'm not that nice a person. Honest.

Thank you however for the champagne and the Aged Ps would say thank you for the wine were it not for the fact that they're under the table dead drunk (but still managing to watch the snooker - its the final tonight though so not much more to go).

No new ground broken today, still taking the painkillers, still feeding myself through the tube, still changing the dressings. I did however have some ice cream tonight which was very nice and hasn't given me indigestion yet (unlike the tomato soup last night).

Denise was supposed to come round tonight but unfortunately there was a bit of a shoe emergency in Birmingham (apparently she tried to walk in flats and an ambulence had to be called to take her to the cobblers for an emergebcy stilletoectomy) and so she won't be around until tomorrow. J x

Saturday, April 29, 2006

Nurse Lewis

My mother and I have just successfully managed to change the dressing on my arm. We're so clever.

Dr Who a little disappointing. SJS was a nice idea but the plot wasn't really up to scratch. I notice it didn't seem to be by Russell T tonight. I thought he'd written them all? I'll allow the geeks to put me right on that one....

I would like to say a public thank you for the aloe vera plant. J x

Friday, April 28, 2006

All Quiet On The North Western Front

Done nothing today. Caroline came round to change my dressings. Apparently my arm is healing well despite looking all green and gunky. Started reading the John Diamond book but have been warned that everyone has their own journey to make through cancer and that other people's stories, whilst interesting, will not mirror my own. Which is just as well because he died. And I'm not going to. I hope.

Denise came round tonight and bought her way into my parent's affections (its amazing what a bottle of Cava will do!). They now love her more than they love me. She's promised to come round again Sunday with her friend "Boobs".

Feeling sad tonight but I was warned that its easy to become depressed on the first few days home. Hopefully it'll pass soon.

Thanks to everyone for the continuing support, you're really helping me through this. Special thanks go to the sender of the beautiful orchids and to Fig for being the funny one. J x

Thursday, April 27, 2006

Guess What I Just Found

At first I was afraidI was petrified
Kept thinking I could never live
Without you by my side
But then I spent so many nights
Thinking how you did me wrong
And I grew strong
And I learned how to get along
And so you're back
From outer space
I just walked in to find you here
With that sad look upon your face
I should have changed that stupid lock
I should have made you leave your key
If I had known for just one second
You'd be back to bother me

Go on now go walk out the door
Just turn around now'cause you're not welcome anymore
Weren't you the one who tried to hurt me with goodbye
Did you think
I'd crumble
Did you think I'd lay down and die
Oh no, not I
I will survive
As long as I know how to loveI know I'll stay alive
I've got all my life to live
I've got all my love to give
And I'll surviveI will survive (hey hey)

It took all the strength I had
Not to fall apart
Kept trying hard to mend
The pieces of my broken heart
And I spent oh so many nights
Just feeling sorry for myself
I used to cry
But now I hold my head up high
And you see me
Somebody new
I'm not that chained up little person
Still in love with you
And so you felt like dropping in
And just expect me to be free
But now I'm saving all my loving
For someone who's loving me

Go on now go walk out the door
Just turn around now'cause you're not welcome anymore
Weren't you the one who tried to break me with goodbye
Did you think I'd crumble
Did you think I'd lay down and die
Oh no, not I
I will survive
As long as I know how to loveI know I'll stay alive
I've got all my life to live
I've got all my love to give
And I'll surviveI will survive (oh)

Go on now go, walk out the door
Just turn around now'cause you're not welcome anymore
Weren't you the one who tried to break me with goodbye
Did you think I'd crumble
Did you think I'd lay down and die
Oh no, not I
I will survive
As long as I know how to loveI know I'll stay alive
I've got all my life to live
I've got all my love to give
And I'll surviveI will survive I will survive...!

And so say all of us.... J x

There's No Place Like...

...home. Home. HOME.

Hurrah. My own bed, my own toilet, my own dust... What could be better?

However, have just spent a couple of hours at Christies finding out what's in store for me next and its not going to be a picnic from here on in either. The side effects from the radio and chemo therapies can be difficult and painful. However, the radiotherapy consultant, whilst not promising anything and attaching all sorts of caveats, stated that he was "confident" of a cure. A cure. A fucking CURE. I think that means that I get to carry on living. I cried. I'm still crying.

Sorted things with Caroline today i.e. she admitted that I'd received crap service as she had no replacement whilst she was on leave. I told her how I felt. She's coming to the flat tomorrow to change my dressings. She also told me that its not unusual to get depressed for a couple of days after release from hospital as you start to relax. If I get maudlin on here I apologise now.

Now in charge of my own feeding times and administering painkillers which is fantastic. Not in charge of my own telly unfortunately as Aged Ps are still here and enjoying the snooker....

Have got various visits to Christies to make in the next few weeks before the radiotherapy kicks in so will be available for visits in that time (may need to restrict once the radiotherapy starts) so feel free to ring and arrange. I warn you though that I get very tired very quickly so don't bank on spending more than an hour or so and I won't be having loads of people all on the same night (you'll have to wait for September for that - theme "A Night at the Oper(ett)a" don't forget).

Anyway, more cheerful than sad at the moment and glad that I can finally stop clicking my heels together... J x

Wednesday, April 26, 2006

Yum Yum

Cherry yoghurt. Ate the whole thing, no problems. Will stick with tummy feeding until after the radiotherapy though and just have the occasional taste treat. Will post an update from home tomorrow when I should have a better idea of my treatment programme and also can then make some decisions about visiting etc. Feeling happy today though. Would like to take this opportunity to thank people for the bag of herbs and the small empty box. J x

Where's The Bloody Yoghurt?

Speech therapists seem to have become as thin on the ground as cancer nurses. Was supposed to have seen Frances yesterday but she didn't show and no-one knows why. Shoddy customer service if you ask me as well as a failure of common courtesy. Since I can feed myself through my tube anyway it shouldn't delay me going home. Phew. Christies appointment tomorrow is at 1145, don't know how long for (apparently they need to make a mould for positioning my head for the radiotherapy). I also get to meet a whole new bunch of consultants. Could last for days therefore...! J x

Tuesday, April 25, 2006

It's Oh So Quiet

In fact its a no-news-day today. 2 more nights in hospital and then home though so yippee. Of course now starting to fret over whether or not the NHS will be able to make all the necessary arrangements (transport, painkillers, district nurse visits etc). Painkillers being my number one priority of course... J x

Monday, April 24, 2006

The Good and The Bad

The good news is that I will be seeing the people at Christies on Thursday and going home after that. Yippee. The less good news is that having survived everything so far there is still a chance that the cancer has already spread. If that is the case then the prognosis is not good. Unfortunately there's no way of knowing yet. Still, lets keep our fingers crossed. J x

Sunday, April 23, 2006

Now Don't Get Excited But...

...have just seen the doctor (Taz, one of the registrars) and he is using words like "fantastic", "looking really healthy", "mushy food" and "end of next week". He also asked how much support I had (which brought a tear to my eye) and I just had to say "loads" rather than mentioning each of you by name (otherwise he'd still be here!). Today is now officially a good day. J x

Scatalogical Musings

First firm stool passed this morning. Hurrah. Feeling a little down though. No particular reason except that its the weekend again and so very little is happening. J x

Saturday, April 22, 2006

V Amusing

Dr Who II - very good. Been a quiet day today, not seen any real doctors. Had a bath this morning (first time in 3 weeks that I've washed properly) which was nice. Have been sipping coffee but it doesn't taste right. Hope that changes. Saw Sue & Kev yesterday and Gill tonight. Not going to make myself generally available for visitors though until I'm back in the flat (hopefully some time next week). All the support you've been giving me has been fantastic though and its really helped me through some rough passages. Thank you. J x

Friday, April 21, 2006

God Bless The BBC

And BBC3 in particular. Have now watched Dr Who's first episode and whilst I didn't think it was as bad as my Dad thought I won't be going to any conventions anytime soon... Sipping water as I type! J x

Hurrah

Second swallow not needed. And I can drink coffee tomorrow. Coffee, mmmmmmmmmmmmmm J x

One Down

And it all went down the right way too! Tube up nose is uncomfortable but the least of my worries. X-Ray one set for 1530 but Frances (speech therapist) thinks I may not need it. She's going to check with young Sean. Lost 2 more pounds this week. J x

Thursday, April 20, 2006

Now They Tell Me

Turns out there could be 2 swallows going on tomorrow. One done with a camera up my nose and down my throat whilst the other invlovves barium and X-Rays. None of them involve a general anaesthetic though so not too worried. Also want to thank the senders of the CD and the Wizard of Oz picture. Thanks guys. J x

Today Feels Like a Good Day

Don't know why especially. Did sleep quite well though last night. Have had remaining stitches out (apart from trachy ones) as well as the majority of remaining clips this morning. Feeding going well (if a bit messy) but not burped a flavour yet. Can now climb 2 flights of stairs and speech is improving slowly. Swelling is coming down but I still look grotesque. And that's all there is at the moment folks. May start with visitors next week, lets just see how it goes. J x

Wednesday, April 19, 2006

Balloons and Books and Cards Oh My

Thank you people. You know who you are. These things I have to feed myself (Fortisips) through my tummy tube come in different flavours. Why? J x

Bugger

Son of speech therapist is ill therefore swallow not happening until Friday. Had some staples taken out this morning so some progress made today. Also feeding myself. J x

Tuesday, April 18, 2006

Of Caroline We Do Not Speak

For those of you not aware of the treatment programme offered to me before this hell began, Caroline was the shining apogee (correct use of the word? No idea, why didn't I pack a dictionary?). Here was a specially trained nurse whose sole role within the ENT Department was to champion the concerns and issues of cancer patients. When one considers that I've had 3 trips to the theatre spent 4 days in Intensive Care and an equal number on a High Dependency Unit followed by a prolonged ward stay. When one considers that the operation I have now received is different from the operation originally proposed and the results of this are likely to be a higher level of facial and vocal disfigurement one would imagine that Caroline would have barely left my side. And yet I have not seen or heard from her. Not once. To say that I am less than impressed gives you no idea of the depth of my feelings on this topic... J

Whoosh!

What a difference a day makes. Have seen the doctors, the speech therapist, the dietician and the physiotherapist. Now have a swallow test tomorrow afternoon, I start "bolusing" my nutrition (i.e. I feed myself rather than a machine doing it) tomorrow as well. I climbed some stairs today (hurrah) and also had my trachy hole sutured. Exhausted? You've no idea but also elated at the same time. Going for a sleep now (1700) and will post later J x

Monday, April 17, 2006

Now Feeling Sad

Not sure why. I don't suppose listening to "Rent" (a musical about Aids) on the MP3 player helps. Its probably just a long weekend without much happening (and to think I used to look forward to them). Things will kick off again tomorrow no doubt and I'll feel more positive. Really, really annoying man taken up residence in bed opposite. Very loud and very demanding.

I wonder how long all this is going to take? I also wonder what that question means? Difficult to type on this handset so will save the philisophical debates for when I'm back home and really, at the moment, that is as far ahead as one should look. Goodnight all. J x

Same Again

Nothing to report really. Since have had lots of stiches out, having a few new ones seems like a retro step but they're going to suture my trachy hole tomorrow. Not healing on its own apparently. Doesn't seem significant though. Swallow test may be next week now. Am fed up and starting to look forward to going home. J x

Sunday, April 16, 2006

An Uneventful Day

Had a few stiches out, Jesus died and was reborn, saw parents. As I said, uneventful. Have to do something called a 'swallow test' next week. Am expecting rounds of applause, never mind top marks!

Saturday, April 15, 2006

Jane, Honey, You Make Me Cry

But in a good way - if there are any good ways in all this darkness and the blackness. My friends and family are going to have to be my torch bearers in the coming weeks, months and possibly years ahead to show me the paths I need to tread. We won't always agree on the way forward but if we try to stay strong we'll learn how to get along. I just thank La Gloria that I never changed the locks or made you leave your keys. Love to you all. J x

It's all Self, Self, Self with me

Anyone know how little Kylie is getting on?

I Leaned How To Get Along

This, I suspect, is going to be the difficult bit. I Will Survive really just comes from taking the medicine. I've got a lot of learning to do. Had rubbish night (again) which is why pehaps feeling a bit maudlin at the moment. All this is coupled with the knowledge that my parents are going to B & Q this morning without me. My favourite trip out bar none. Still I assume my terrace will look a little better this year... J x

Friday, April 14, 2006

And Now The Bloody Telly Won't Work

I have access to 4 (yes count them 1, 2, 3, 4) ITV channels and not a single BBC station. And I was all set to watch that Passion thing too. And what about Dr Who on Saturday? Lord knows my parents will never manage the video on their own... Sometimes cancer really gets in the way of having a good time... Jx

Bowel Movements

Had my 3rd in 11 days about 5 minutes ago. Not easy but rather satisfying... J x

The Easter Message

As brought to you from this bed sponsored by Jesus, it's Busy in Here Co Ltd supported by The Chocolate Foundation.

Who decided to have bloody Easter this weekend? It means, of course, that I can't get a single thing done. Half the staff are off and the ones who are here are running around looking after the chair requirements of visitors. Meanwhile I'm left here hooked up to a bag of godknowswhatbutnowaydoesitinvolvechoccies dripping into my stomach at the rate of 125ml per hour.

On the positive side, had my final drains removed this morning so feeding is currently my only tube. The dressing on my left arm was removed and the doctor professed himself pleased with that graft at least. The staples on my (Op 1) scar were also removed. On the downside I'm still the elephant man (and likely to remain so). May post again later on. J x

Thursday, April 13, 2006

Um...

Afraid I'm under rather a lot of very heavy drugs at the moment and have been so for some time. I'm not saying I didnt mean those things but ..... get a life girlfriend. The fact is I have survived some things. I may still have cancer but then so may you. The things I have been through and am yet to go through may not be pleasant but then I've seen where some of you live and you ain't got it coming any easier neither sisters (apparently one of my transfusions may have included blood from La Gloria Herself). Let us all take a quiet moment here chillin. Its true that my appearance has altered fairly radically and I'm really not ready for my close up but I may be anytime soon - just watch this space. Lets see how things stand after Easter. I hope you all get really fat (moi-meme now being a whole lot less than he was) and finally, finally, finally can I ask you all to put your hands together for the support team that is my Mum and Dad. Never was a fighter endowed with 2 worthier champions than I am with them. All together now... "At first I was afraid. I was petrified.... J x

Wednesday, April 12, 2006

cancer is a cunt

i am not yet through anything.i have not survived anything i want no visitors. currently i merely exist in a different part of the hospital to yesterday, please do not just turn up.

i can tell you that i am no longer the person i was. i have been through the largest emotional and physical experiences of my life and what the consequences of that may be are hidden from me at the moment. i do however want to thank you for all your good wishes and good thoughts this past week.

ill post again if i have the opportunity

Monday, April 03, 2006

Tick

0640 Fingers crossed everyone please. Hopefully see you all soon. Lots of love. J x

Sunday, April 02, 2006

Tick Tick Tick

2300 Just been given some other experimental drug on a drip for the last 20 mins and I haven't swelled up like the elephant man yet (which I'm taking as a positive sign). It's part of this study I agreed to. They've also just discovered that I haven't consented for tomorrow so they're rushing a doctor to me as we speak. I'm ready for bed though so they better not be too long... zzzzz J x

You Guys

1800 Shucks. What did I ever do to deserve you lot? Thank you so much for all the messages. They really help. Now back in hospital and mum and dad have just left. Its quite noisy though as Sunday seems to be a popular visiting day. 2 new patients as far as I can see. One sniffy queen directly opposite who I've taken an instant and irrational dislike to. Diagonally opposite is somone from Salford (judging by the fact that every visitor is wearing a track suit). I think he's in as a ruse so that his family can scout for body parts to sell from their market stall. Supper tonight was curried vegetables. I think its the hospital's way of getting you to look forward to nutritional supplements... Will try and post again before bed and then a (not) final message in the morning (Drama queen? Moi?). J x

The Day Before The Day

Can't think what to write now. Cleaned my tube and rotated it all on my own this morning. Clever me. Had a shower and a shave. Just waiting to go back in to hospital now. Trying not to think about tomorrow. Actually its not tomorrow that is the worrying thing. I'll be under a general anaesthetic and if I die on the operating table then I won't know anything about it. Its the time after the operation that is worrying. How much pain/discomfort will I be in? How disfiguring is the scarring going to be? How long before I can stop peeing in a bottle? This last one might seem a little trite but its the one thing that sticks in my mind above all the others. Why is that? Anyway, I remain fairly confident that I'll get through the operation (the consultant, Young Sean as you may recall, does get a lunch break apparently) and we'll just have to see how the rest pans out. There are loads of things I still want to do though so I'm going to try and keep those uppermost in my mind. I'll post again when I'm back in the hospital -- hopefully still in the same bed! J x

Saturday, April 01, 2006

There's Always A Price

Macaroni cheese was scrummy. And I didn't have too much. Nor too much of the ice cream afterwards. Nor too much of the wine and coffee. So how come my tummy hurts? I blame those people in the endoscopy unit. Not content with making me wait an extra day for the peg I now think they did strange and unnatural things to me whilst I was sedated (given that I was sedated I probably joined in wholeheartedly with the strange and unnatural things but they're professionals - they should have known better than to encourage me). My dreams have been haunted lately by strange images of people playing doctor and nurses games. Its horrible I tell you. Whatever happened to the strange games the doctors and doctors used to play in my dreams? Anyway off for a kip now with Dr Drake Ramorey and Dr Who (but can you guess which one?). Night J x P.S. Had a cry today too because I'm quite scared (sorry but you get the warts and all on this blog, not just the nice stuff)

There's No Place Like...

...City Road East! Hurrah. I'm home. And my mum is going to cook macaroni cheese for me tonight. Double Hurrah. Tube in tummy thing is aching a bit but otherwise not too troublesome. I have a hiatus hernia apparently. Not sure how one gets these but my mum assures me its because I'm too fat. Hey ho, bring on the weight loss....

Feeling quite tired actually and have already slept for 2 hours this afternoon despite sleeping quite well last night. Officially I'm still in hospital as they didn't discharge me so that they can keep the bed (did I tell you this already?). Not thinking about Monday until it comes. I remain optimistic though. Nothing more to say really at this point so will post you all later. J x P.S. Can anyone else see a posting from "John"? he assures me he can see it but I can't (unless he's deleted himself by accident - hence the deleted comment?).