2007 Jan 6th - Scared

Saturday, January 06, 2007

Today is a BAD day Current mood: scared Category: Life I've been posting more detailed stuff on the Macmillan blogs but thought it was time to add some here. I'm so relieved that due to my new temp change in job I no longer have to make weekly trips to London from Peterborough because there have been mornings when, like others have retold I could have just not been near enough to a toilet when the diarrhoea and bleeding and mucous have been relentless. How would I have coped if that had happened on a crowded train? I made the decision not to travel for a month which luckily no-one questioned. It's been my biggest physical worry so far - luckily my office is approx 7 yards from a toilet across a narrow landing and repeated visits only minutes apart in a morning are taken for me "popping next door" or "fetching a coffee (on way back". I only seem to get the runs a couple of weeks at a time then Tyson just throws random patterns at me sometimes meaning no sleep sometimes making me forget - no stool = no blood or mucus. It's the trips that I think are just to pass noisy wind then turn out to be just liquid - invariably mostly bloody mucus and nothing substantial. I can't even fart now for fear of bleeding! As a woman though there are sanitary products to help I doubt they could cope with a full on "explosion" but it's security of a sort - and easily available. Tyson is a sessile (not on a stalk - those are pedunculated) tumour spreading round approx half the circumference of the rectum - at 15cm - not far from where it joins the colon. In size I couldn't say but it must be over 2cm and as it's covering over a third of the circumference it seems very unlikely that local excision (using a heated snare to burn off bits at a time until it's all gone) is not an option. This means an op - taking a section of my rectum and colon away, joining them up and while they heal diverting my "poo" into a temporary colostomy bag. The surface has a bobbly appearance - but the lumps are under the surface and are yellowy coloured, with the outer edges being smoother and just pink and fleshy. I'm thinking this is not good, it looks wrong and sickly in every sense, it's nothing like the neat cherry like polyp I was expecting but I found watching the sigmoidoscopy absolutely fascinating - the image is burned onto the back of my brain - for visualising and imagining shrinking - mind over matter? I'm concentrating on staying emotionally and physically as well as I can but I'm positive I'll be needing more support after Tuesday - I need to talk things through with my kids either way, they've been given as much detail as they've asked for but the word Cancer has never been used, only tumour. I've noted down the youthline email and phone numbers for them but right now my concern is my daughter who lives with me, I WILL not leave her and have her life affected by me not being around. Her father only sees her 2 hours a week now, refuses to have her stay over (witch girlfriend - ex friend of mine) so in the back of my mind is where she should live IF. This is the first time I've made that thought real by writing it down, but I'm sure it's what crosses every single parent's mind with a potentially serious health issue. I'm sorry for those of you reading this who may be upset by this posting but mostly I've been pretty jovial and flippant - that's my way of coping, if I make it easier for everyone else it's not in my face and can be put to the back of my mind more. But I am scared, for my little girl more than anything. I'm on a bit of a downer this morning I guess with the diagnosis looming. She's still being a bit of a "kevin" grunting and sulky in the mornings and locked to msn or in her room any other time but she's not THAT bad. And what about my little boy? What if he goes off the rails because I'm not here. It's all academic obviously because I will be here, I'm going nowhere but that's what goes through my head when I can't sleep at night and there's no-one here to tell me it's going to be OK. Maybe I should double the dose of the anti-depressants like the Doc suggested - on top of the usual long term depression I get SAD too. Fantabulous! God what if they don't mix with other "therapies"? I don't think I actually want to talk about any of this out loud, but I do want a record of how I'm feeling, to read later, to help others, to tell everyone how I really feel without wasting time with friends and family crying all the time. Sorry for babbling, fingers got carried away - heating isn't on and typing keeps the circulation going in my hands at least. x 19:30 - 4 Comments - 0 Kudos - Add Comment - Edit - Remove

	Umpalumpa	If you do decide you want to talk about this in person then just pick up the phone and text or call me. I'm a stone throw away and can pick choccy's and wine up on the way!!!! I'm really pleased you are happier with the new position at work, that must be such a relief. Always here - please don't forget that xxxxxxxxxxxx Posted by Umpalumpa on Saturday, January 06, 2007 at 19:12 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	I know lovey, sometimes it's just easier to type than talk, it's never inconvenient and the laptop is never in the middle of anything else (if it was I'd slap it's sexy qosmio ass)! How is the hair, I'm almost scared to ask........... Posted by Lisa Left Eye Loopylalalalala on Saturday, January 06, 2007 at 19:15 [Remove] [Reply to this]

	Umpalumpa	Hey - the hair is gorgeous and you are naomi's hero!! He did a great job - was slightly overwhelmed by the quantity of hair she had though!! Posted by Umpalumpa on Saturday, January 06, 2007 at 20:42 [Remove] [Reply to this]

Lisa Left Eye Loopylalalalala

Well if you would be so kind as to take a photo of "cousin IT" when she's looking her most beautiful, I'd appreciate it, email or sms is fine, ta very much Posted by Lisa Left Eye Loopylalalalala on Saturday, January 06, 2007 at 20:51

2007 Jan 6th - Putting on a Brave Face

Not long now
Category: Life

Ah well first week back at work is over!

New year was odd, I just couldn't face people at the party I was supposed to be at - might have managed it if Tyson hadn't been battering my lower spine all bloody day. I was up until 5.30 on Saturday I was in pain with my back, my stomach was uncomfortable but it all stopped me sleeping, every position hurt or felt wrong. I had odd thoughts about all sorts of stuff, I keep thinking of funeral songs I want on the way to work too, not because I think I'm going to die OBVIOUSLY but just because this sort of thing makes you realise if you want a choice it's best made while you're alive and kicking. I intend to be kicking for a bloody long time so get used to it!

New job is great, it's a piece of pee - I'm back with my old mates and the atmosphere is generally a bit jollier because of the team I'm in.

Also there is only one person in the office who knows what's going on and she's my line manager (and mate) so it's easier to forget, they're not used to me running off to the loo for a couple of weeks half a dozen times a day. They don't know I've had ages off sick and they haven't seen me looking too rough, though one of the managers asked me if I was ok today cos I looked very pale. He asked if I was ok, I said not really no, "should you be here then?" erm YES, but I might not be here next week that fooled him . Love playing with the normos.

Bought a leather corner suite from DFS tonight - the critical illness should cover it if it's bad, if it's not too bad but I'll still need an op sickpay should last long enough.

Got to wait three soddin months anyway so I may even be back on form by then?!

Absolutely shattered last night - worked til 7pm then had a look round furniture shops but back was killing again so just wanted to sit still on the first one I liked!

Struggled to make it til 10pm but wasn't long before I was sleeping, felt better this morning than I did the night before. Feel shite again tonight - always the same after 4 days of work no matter what I do I'm knackered.

Less than four days to wait now - feeling pretty numb about it but getting plenty of info from the Macmillan discussions - people younger, older, similar age all with the same sort of symptoms who've been there and got through it or are just ahead of me in the treatment stages.

I managed to put on a few pounds over christmas, eating but doing even less probably helps! Tyson can't have taken over yet or I'd be losing weight, since EVERY medical person I speak to asks if I've lost any weight yet. I WISH!

TFI friday anyway, on the wine and crisps and chocolate biccies since I still can, what harm can it do me now?

2006 Dec 29th - CT Scan

Friday, December 29, 2006

Oh Doctor I do feel faint......! Category: Life Well the big(ish) day arrived - manged to get up 20 minutes before I had to stop eating - thickie, why didn't I set an alarm? Shoved two malted milk down with a mug of tea and felt full anyway. Ponced about on t'internet and drove to sister's for "Taxi to Tomogrophy". Bloody good plan as it turned out! Usual walking round corridors for a few miles (follow the yellow brick road) and tried to check in at x-ray first doh! Signed the usual paperwork, checked the usual questions and start drinking the barium stuff....15.15 and some more at 15.30 and more at 15.45 - no honestly you won't have white poo afterwards and finally another one at 16.00. Amazing man had a scan before me on his head - his wife was telling us he'd crashed in his lorry and had skin taken from his legs leaving red raw patches (including little R on his right leg!!!) to patch up his mashe up arm - window glass had torn right into muscle in places OUCH! But that apart he'd had a MASSIVE flap of skin cut off his scalp and folded over to cover the chunk he'd lost out of his head. I'd thought he had cancer and losing his hair since he had a sort of surgical stocking looking beanie on his head! He'd collapsed that morning and had odd dizzy spells before, his wife was worried sick and worn out with worrying about him and the fact that they were lucky he was still alive. He seemed in great spirits, considering the physical scars he must still be in some serious pain - it only happened in November. Tyson doesn't seem to like it as much as you'd think, getting a bit grumbly but then it's the first thing since the malted milk with any substance other than water. Fab nursing staff on duty today - offered to take me to a cubicle to change me, I asked if she could change me into a supermodel, but all I got was a hospital gown and robe - knee length which looked absolutely stunning with my knee high leather boots I must say. I noticed I had little round blue URGENT 2 week wait stickers on my notes (two week wait is for people with suspected cancer - given the 2 to three week wait for any results it's just as well). Time for the line so they can put the contrast medium in later on. Dr asked if I've had chemo yet.........erm no I'm still waiting for the biopsy results to see what treatment I'll have. You'd think that would upset me but really, it didn't - very odd. I can't be in denial..and talking about it surely? It seemed like a perfectly normal question really, I know repeated lines can harden your veins so it makes it tricky - anyway it wasn't going in too well he was fiddling with it and I had a "blockage".... feeling a bit queer down below - hot and like I could really do with the loo but oh hang on no, I'm getting the sweats and feel really, really dizzy - head between the knees! Because I'm a PP (private patient) I get a Dr to put my line in, instead of a nurse - now I don't care who cares for me so long as they know what they're doing, I tried to persuade the doc to go off and have a cup of tea as I'm sure the nurses are more than capable, but standard practice and all that. Poor bloke, they said it must have been his stunning good looks that made me faint, poor sis thought I was doubled over crying and rushed over only to end up helping me to the bed looking like death (not even slightly warmed up!) By this time I've got two nurses - one taking my BP, the doctor checking my pulse and my poor little sister looking worried, and she was only there for company for a scan and be the driver - you're not allowed to drive for an hour after the contrast stuff. Second line in my other arm wasn't a problem phew! Scanner is quite impressive - just a very thin bed on wheels (not long enough) that moves in and out of a massive doughnut. Breathe in - hold breath "snap" breathe out, couple more of those and then it's time for the hot stuff - I've had this a couple of times before when I've had kidney x-rays it basically goes into your blood stream and as it's going around it's really hot, so think about where you've got a lot of red skin - like inside your mouth........that's really hot and after a few seconds it feels like you've wet yourself. Never happens and I was a bit of an old hat so not bothered by it. More pics - just a whizzy camera flying around your body in the doughnut that you can just make out. Pretty noisy like sitting near a refridgerated artic. I had a brief whinge about the idiot Dr Kiss of Death at the surgery to the radiologist who removed the canula. She was suitably appalled. She was lovely too, was asking about the tumour and if I was in pain, how long I'd had symptoms etc. The more I think about it the further back I can remember having odd bleeds but putting it down to piles - bane of most pregnant women and mothers. Line came out as easily as it went in, but am warned not to leave the hospital until I've had a cup of tea and a sandwich at least and to go to A&E if I feel at all unwell. I bought a piece of cake too but only managed the sarnie - tut! Poor stomach doesn't know what to do, stuffed to bursting on Christmas day and randomly starved on others. I've been "entertaining" Mike for a couple of days, basically involving eating and drinking beer, but we did throw together some fab curry dishes for about £3 instead of wasting a small fortune on a take away. Been shopping today and for a lazy lunch Oldrids cafe! Determined to sort the laundry and a bit of decorating prep before the new year.........but if not I'm gonna pay someone else to do it haha! 18:47 - 4 Comments - 0 Kudos - Add Comment - Edit - Remove

	Billy Bollockchops	Entertaining me? I think you'll find it was the other way around, luv! Don't you dare do that ceiling!! You'll really piss Tyson off if you do that. If I come over early tomorrow I could finish stripping the paper and probably have time to get the walls filled too if you don't hover around talking *at* me all day. Posted by Billy Bollockchops on Saturday, December 30, 2006 at 12:25 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Pah you couldn't do a strip tease, you'd forget your nipple tassels like you forgot your scraper! TUT! anyway I have a volunteer - she's late.........cos we were yabbing on the phone instead of getting up. Zut Alors! Posted by Lisa Left Eye Loopylalalalala on Saturday, December 30, 2006 at 12:34 [Remove] [Reply to this]

	Billy Bollockchops	Stripping the PAPER!! Posted by Billy Bollockchops on Saturday, December 30, 2006 at 13:05 [Remove] [Reply to this]

Hayley

If you didnt laugh, you'd cry. Anytime Tyson fancies some french cuisine all you have to do is book a ticket - I'll collect you from airport, supply bed and board and all the red wine you can drink (just the cheap stuff though!) Posted by Hayley on Tuesday, January 02, 2007 at 08:40

2006 December 16th

THE BIOPSY!

OH eck!

Saw my little mate on the big screen on Thursday night, if that's just a harmless polyp I'm the Queen. Surgeon told me to "enjoy christmas with your family and we'll talk in the new year".

Lost my composure after he'd gone and blubbed on the nurse. I told her I know what it is, or I'm pretty sure. But that if it's cancer, bowel cancer is at least very curable.

I expected her to say, "well I know you may think that but until the biopsy results come back we won't know". She didn't, she said they can do a lot these days. I asked for some advice on coping with diarrhoea, which she gave me. Also told me to enjoy christmas and concentrate on that and take it easy, work and money aren't that important, though she knows I have to make more since I'm on my own. She was lovely. Everyone else got tea and biccies but as I'd been nil by mouth since breakfast and was a bit wobbly I got toast and jam!!

I now appear to be constipated, great! Since the enema on Thursday I've not been

2006 December 10th

The big P or the big C? Bowel Cancer
Current mood: scared
Category: Life

Well it's two months now since I started making several times daily trips to the loo - and bleeding from where the sun don't shine!

Dr No 1: - heres a sample bottle, we'll test for bugs, probably something you ate.....or a virus.

Results_ - nish. No campylobacter, no salmonella, no e-coli etc. Nothing.

Dr No2: - it's either something you ate or a virus. Drink lucozade and those pro-biotic yoghurt things.

Me: So I shouldn't worry about the constant bleeding and mucous then?

Dr No2: - you can worry all you like but I'm not going to do anything about it.

Hmm, try typing persistent diarrhoea, rectal bleeding, mucous, change in bowel habits into any search engine and every one of them says in a nutshell. GET IT CHECKED OUT, BLOOD IS RED FOR A REASON IT'S A WARNING.

Ok time for
Dr No3: - I think we should take a look, if you don't mind (mind, mind, you mean you're taking me seriously?) I'll get a chaperone.

It's not bleeding haemorrhoids - OK well I knew that, but nice to have it confirmed, there's no obvious signs of what the trouble is. I need to look further up, then if that still shows nothing we'll book you in for a proper look with a camera. I'm not looking for a tumour, but I'm looking for inflammatory bowel disease, or at least trying to eliminate it, you'll feel rubbish until we get you sorted out, but need to be sure before I can treat you.

Great, I don't feel like an idiot, a time waster, attention seeker or hypochondriac. He's a lovely man, also in my humble opinion a bloody decent doctor!

2 weeks later

Following a day of strict bland food and little of it, plain fish, boiled spuds OR bread and plain soup and jelly. Two self administered enemas later (oh what fun going from chemist to chemist clutching a prescription to find some in stock)

Dr No 3: Now it's very unlikely we'll find anything today but if not we can send you for a colonoscopy at the hospital........oh.....I can see a polyp........and it's bleeding.

Me: sobs silently, it's a tumour, it's a tumour.

Most of them are harmless, it's not on a stalk, need to get them all removed so no point wasting time with a barium x-ray (phew) I'll refer you, don't worry if I thought it looked obviously bad news I'd say so.

The nurse was lovely, took blood samples (not anaemia causing constant tiredness and dizziness) and Dr comes back in and very calmly manouvres conversation to music - as if he has all afternoon to chat to me. I leave feeling calmer, but only make it to my friend's house round the corner before panic sets in.

What if it's cancer? Most polyps are benign, even bleeding ones though they're uncommon. 30% of 50+ year olds have them (I'm 36). My diet is good, OK I drink and used to smoke, a lot, for many years. I don't excercise much now but used to walk miles, go to the gym, cycle. I'll started jogging again, when I'm not dizzy. I'm too young.

I see the surgeon who specialises in this area (gut stuff, nice) on Tuesday - more health questions no doubt but hopefully an idea of when I'll have the colonoscopy and if they're small enough, have the polyp(s) removed. If they're benign I should never get bowel cancer, it'll never spread to my lymph nodes or other internal organs and kill me quietly. My family will be checked regularly because of this. Whatever happens someone's life will undoubtedly be protected because I ignored two doctors.

Will keep you informed..........

Well things are "moving" along very fast, though if we're talking about my "movement" they're also pretty fast and frequent, small, multiple and bloody.

Surgeon said he's booked up for two months but wants to see me soon, i.e. in two days. That was today.

Breafast only, then nil by mouth after - arrived at 3.30pm - bp good, general health good. Undressed, enema administered followed by quick dart to the loo, followed by another (pink watery stuff) and then finally when everyone else had gone - I was tagged on to his surgery, it was my turn. Can pad this out later, but it's not a teeny weeny little bobble that can be snared off, but quite lumpy and sprawling (I was watching). I've emptied a few spoonfuls of blood into the toilet so far, as I bled quite a lot after they took biopsies. Hoping the CAT scan he's ordered will be in time to go through the lab results on 9th January. Expect next update then!

Posted by Lisa on Thursday, December 14, 2006 at 20:13