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

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

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

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!

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

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

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

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

Tick

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

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

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?).