2007 Sep 13th - Unlucky for Some

Thursday, September 13, 2007

Aaaagghhh. Can I have any MORE bad luck? Category: Life Well after the good news from Onco re reduced dose AND sentence (it feels like I got parole for good behaviour) AND the Willow Foundation coming up trumps with our break in Sherwood Forest I think I got a bit complacent. Had some family dramas this week resulting in me spending more time with my ex husband than I have in total over the 10 years we've been apart and in my house too. How civilised are we? Funny how you can put differences aside when it comes to your kids isn't it, well MOST of us can. Anyway because the first three days of this week were very stressful (I could hear my heart thumping loudly and was pretty sure my blood pressure was high) I just couldn't face the shower, the bath guard, the hairdryer, the straighteners or finding something I've not yet worn to the chemo suite to go and have my line flushed. It's been sore this last week and I have a swollen pus-filled red hot lump around the entry site. On Tuesday due to a hot sticky night (yeah that fabulous radiation induced menopause again) the waterproof dressing started to come away a bit so I cleaned it with a swab from my supplies and stuck some new gauze and another waterproof dressing on as a temporary measure to absorb the yukky stuff. Today after some Chemicals (as in The Chemical Brothers at full blast) I felt up to dragging myself into the shower and witnessing large quantities of hair block up the bath trap - having to empty it three times to drain the shower afterwards. It's getting a bit upsetting now seeing it on my pillow. More hair comes out when I wash it that when it was a foot longer, defo the chemo! Cringe! I arrived at the chemo suite about 3.45 and got a prime disabled spot in the free car park (say what you like about cancer, free parking is always a bonus). Thought as I'd only had one slice of toast all day and three ginger biscuits I ought to eat something else (hunger signals don't appear to reach my brain any more and I'm trying to maintain my weight but god it's hard, never thought I've have that problem). I had a healthy lemon chicken wrap, a piece of cake (for calories) and a packet of French Fries, salted of course to replace what I collect in the bag on daily basis. Needn't have rushed because I didn't get seen for an hour. They did have the requisite three nurses which was a bonus but a LOT of patients so I waited outside and forced the food down, wishing I'd got a drink because my tongue is cracked which I think means I'm dehydrated AGAIN. Matron (ooo matron) looked at my dressing and was NOT happy. In fact she said how unhappy she was with it approximately 7 times, just to me. Lisa the nurse looked at it, they called the Lone Ranger down to look at it. Matron took a swab to see what it grows in the lab - hopefully another life form, maybe a cure for colorectal cancer? She cleaned it up while the Lone Ranger scrawled a prescription for antibiotics and it started bleeding - this made her VERY unhappy. I'm thinking, should I actually be worrying at this point? I keep carping on to the kids that they must wash their hands etc because I have to avoid infection and still managed to get one under waterproof dressings. Lisa literally "ran like the wind" in her own words to try and make it to the pharmacy before it shut at 5pm, but not fast enough. She rang my surgery who said I could go to their pharmacy to get it. Great. New dressing on after the air had got to my seeping wound, which by the way smells rotten and off I went. The Pharmacy refused to fill the script. To be fair it does state only to be used in hospital pharmacy on it, but you know I'm a bloody cancer patient, I'm on chemo, I have lowered resistance to infection - which could kill me if my white cells are low enough (they're not right now, don't panic), give me the sodding drugs. Snotty chemist bloke said he couldn't apologise for something someone else had done and that I needed to make an appointment with my GP and get him to redo it. FFS! After a half hour wait in the surgery (no-one admitting to taking the phone call which I heard Lisa make myself) one of the docs put the prescription onto a different piece of paper and then snooty chemist bloke accepted it.............at first then told me (at this point I was close to tears) that usually you get the drug four times a day but GP had put 3 times a day on the script. I pointed out that the GP didn't prescribe it, my oncologist did (his attitude changed a bit at that news). He asked if I wanted him to check with the GP and did I have the original hospital script. Duh! No! They won't let me walk around with two will they? I told him it had been shredded by the receptionist but since I've had half my guts ripped out, four months of chemo and now had an infection I didn't really want anything else to go wrong so, yes, whatever he thinks best. I'm on three a day - possibly not enough, as the Lone Ranger said I was to have five days, they've assumed the quantity is over seven - quick maths means I have enough tablets to do either! I've necked two for good measure (on an empty stomach - no worries I hardly ever eat). I have to go back to the chemo suite tomorrow to have the dressing redone if it's messy again, then I have an appointment on the ward (ooer that's special treatment innit?) for Saturday as Matron is really NOT happy leaving it until Monday, especially with the bleeding and smelly yukky pus. Grim. Hopefully they'll whip me into isolation and let me have some rest from family troubles and warring cats (my son's pregnant cat is here and hates Skittles). I have a few wounds on my hands from intervening in the odd cat fight. Not recommended in my chemo book of truth. Cancer's shit. 20:42 - 8 Comments - 5 Kudos - Add Comment - Edit - Remove

	Billy Bollockchops	Oh noo, that's awful. All of it. Sorry I've not had the chance to come over this week. xxx Posted by Billy Bollockchops on Friday, September 14, 2007 at 14:44 [Remove] [Reply to this]

	Umpalumpa	I read this and want to do a Kevin/Perry "Its sooooo unfaair" - because its just NOT fair. We'll get you through this, and before you know it you'll be getting some serious (well deserved) pampering. MAJOR pampering. And I think this calls for an (accidental) trip for a new bag/top/skirt/kitchen flooring after the trip to vampire towers tomo pm.? xxxxxxxxxxxxxxxxxxxxxxx Posted by Umpalumpa on Friday, September 14, 2007 at 14:45 [Remove] [Reply to this]

	Peter	You're right, cancer is shit. So, find somebody else to throw some shit at, me if you like, then sit down and have a large drink or ice cream or whatever. Sod the world and worry about Lisa as she's the most important person here. Loving you from a distance, Peter Posted by Peter on Friday, September 14, 2007 at 14:45 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Peter, if you were old enough I'd say you were the dad I never had.........which is a bit rude since mine is still alive but always absent (not really his fault as my mother dragged me counties away as a baby and I didn't know stepdad 1 wasn't my real one). Posted by Lisa Left Eye Loopylalalalala on Sunday, September 16, 2007 at 19:49 [Remove] [Reply to this]

	Mandy	Just wondering how the wound is now? hopefully the antibiotics have kicked in and things are improving. Which Centreparcs are you going to btw? we enjoy weekends at Sherwood and Whinfell with the kids, from time to time. Hope you're feeling a bit better x Posted by Mandy on Monday, September 17, 2007 at 13:05 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	It's much less inflamed and the swelling has gone down quite a lot now - must be doing alright on the tablets. Off to Sherwood Forest! Posted by Lisa Left Eye Loopylalalalala on Monday, September 17, 2007 at 13:08 [Remove] [Reply to this]

	Fiona	Hiya Lisa, I'm rubbish at saying the righ thing - foot in mouth all the time, espesh after the large glass of red I've had this afternoon. Rotten time you're having, been thinking about you, wondering how you're doing - I'm also rubbish at loking around the system for blogs, Its either laziness or fatigue still. Hope you can get some rest and the antibios kick in pdq. Don't read the thread until p101's gone - it pulled me down, but fought back with all the positives I could muster - prob done the wrong thing again. Cancer is shit, but you're def at the top of the survivors in my book. You're living life and barking mad, and you're great. Posted by Fiona on Monday, September 17, 2007 at 13:05 [Remove] [Reply to this]

Lisa Left Eye Loopylalalalala

I had a white wine spritzer last night.........only half a glass of wine and I'm gone! I subscribe to blogs it's easier - otherwise I'd miss them too. Hope you don't have too much of a hangover Fi! Posted by Lisa Left Eye Loopylalalalala on Monday, September 17, 2007 at 13:09

2007 Mar 27th - Feeling Down

Feeling grim
Category: Life

Not doing so well again today, feeling pathetic and it's all just dragging on now. Sun is shining and that's great but I don't get to enjoy it - usual long day, though only three hours in the hospital today. I had a review, was told I look weary and tired. YUP. Went through the checklist of symptoms - yep got all those, except my skin is doing really well, must be the aqueous cream! Offered loperamide (immodium to you lot) and anti nausea drugs but I really don't want any more medication if I can help it. I know why I feel crappy and don't want to risk feeling worse or missing something by taking more drugs.

Oh have a look at my (myspace) pics if you have access, my cancer card is designed ready to print, if I ever get round to it, and be laminated. Perhaps produced in triplicate should I lose one.....or two.

A couple of women in the waiting room were discussing how crap cancer is and how it affects your entire life, like your job, relationship (or in my case doubt about ever having one again), having more kids (nope none of those for me, or the woman who is grateful for the one child but now needs hysterectomy following mastectomy since her cancer is hereditary and hormone related). It's the lack of choice over so many things all at once that makes this so bloody hard to deal with - I could say no to the treatment and surgery and be dead within a year or two, maybe less. No real choice there then. I couldn't have more kids anyway unless my eggs were grown somewhere else, but at least I had eggs (fried eggs now). I don't want to have my menopause yet, I don't want hot flushes, mood swings, forgetfulness, thinning hair and faster ageing skin. I don't want HRT. However it's happening and it's saving my life - so no real choice.

I have no idea what I want to do with the rest of my working life, but I've a feeling it involves part time! I'm also vaguely considering nursing of some description which is a route I wanted to take 10 years ago but couldn't afford to with two small children, debts and an ex husband. I don't know how the rest of my mortgage will get paid when I go on to half pay - don't trust the tax credit people but that will be my first port of call WHEN it happens. I don't know what job I'll have to go back to or if they'll want me back. I don't know when I'll be fit to work again or how hard it will be to get another job now I've got cancer, everyone will be watching me for five years and how many employers will take that on. You can say what you like about equal rights but at the end of the day I'd never be able to prove I didn't get a job because I used to have cancer would I?

In summary there's a lot I don't know and it's pretty much down to cancer. I'm no stranger to hard times but it's a lot to take in, in a short space of time.

8:18 - 4 Comments - 0 Kudos - Add Comment - Edit - Remove

Diarrhoea, diarrhoea, people think it's funny........ Category: Life .........mind you half the population can't spell it properly. So the photos have been taken, did my best to offer up a genuine smile - wearing bargain top from Mexx (usual price £29, sale price £2) uh - huh we KNOW how to shop! Wishing I'd got my finger out of my um....arse.... and sorted out a trim with the hairdresser but I'm scared he'll accidentally cut through my chemo tube and drip cytotoxic chemicals everywhere - seriously I have dreams about this sort of thing, I have one clamp - which I assume would be best used on the end connected to my arm to avoid air bubbles. What do I do with the pump that's spewing stuff out? Do I call an ambulance? The fire brigade? Both? Thankfully only one more wretched pump to go and then I can actually WASH my arm. Speaking of air bubbles, when they change the "bung" over in my PICC line I have to hold my breath since if I breathe in at that point I could give my self a potentially leathal air bubble. WHAT? I've also got a few more teeny weeny ulcers that are creeping around my lips, from the inside corners of my mouth which is also down to the lovely 5FU - this stuff had better be working. Anyway after Mr Photographer had been and gone in a flash. PMSL. I threw together a pad thai, mistakenly thinking using the thin rice noodles I bought would make a nice change, they didn't - they're too watery but it still tasted OK. In defiance to Tyson I sprinkled crushed chillis over mine which helped no end to counter the wateriness but then wondered about the logic of this on my fifth visit to the toilet the next day. Trouble is I never know on worse diarrhoea days if it's food, bacteria, Tyson, hormone, chemo or radiotherapy related since it could be all or any of the above. I'm thinking (Faerie I know you O.Dd on chillis too recently) the chillis was probably pushing hope a little too far so back to more bland food then. Saturday I felt um okay, still tired, still curled up on mum's sofa at the earliest opportunity - then when the kids came back from their trip to the village shop we all pretended I was asleep so they stayed in the kitchen - I felt a bit mean but waved my imaginary "Cancer Card" in the air by way of justification. Covered in a blanket sipping weak lemon drink - the sort of thing all sickly people do in novels - is now a reality instead of a funny mental image. Sunday - well I felt practically "normal" by 3pm and thought that would be a great opportunity to cut the grass - I say grass instead of lawn for a reason. It's now resembling something akin to a lawn but I fear I've done myself irreparable damage. The whole point of having weekends off with radiotherapy is that your body had time to repair and replace any NON cancerous cells which have been anihilated by the radiation beams. Straining my back, arm, leg and stomach muscles, let alone my lungs to the point of collapse is not really helping - I had to stop for a breather halfway through, but would NOT be beaten by stupid grass, or Tyson. The sun was shining and it was a lovely day and I wanted lovely neat short grass. Up during the night at 5am (technically 4am stupid DST) with, oh guess what more diarrhoea, I mean I know my wee isn't as hurty as it was, but four hours sleep is just not enough Monday - woke up feeling rough as usual, took Karys to the bus stop and crawled back under duvet for another 90 minutes. Alarm went off, I couldn't move, the duvet was the softest, fluffiest, warmest, most comfortable thing EVER. 20 minutes later, realising my hair hadn't been washed for 3 days I sort of fell out of bed and into the shower. I was shaking all over before I got in, whilst I was in (washed hair v v quickly for a "one hand in a plastic balloon" person) and just managed to dry half the water off myself before pegging it next door to the loo AGAIN. Where does it all come from? I had very well cooked, properly defrosted, low fat pork in a sort of bolognaise sauce with white pasta and a salad yesterday - no chillis in sight. I felt so ill, I thought I was going to pass out on the loo and that would not be a pretty sight for my daughter when she got home from school, me half naked at the top of the stairs (no point shutting the door when you're alone and in a hurry). After the pains had gone away I felt a bit better. Decided I was up to one hour journey after all and didn't call mum's taxi! I've had 15 treatments now, 10 to go. I have a feeling it's going to get worse. All the radiographers commented on how weary or ill I looked today - think it's just tiredness and overdoing it on Sunday, oh and bleeding to death over the weekend - better that than bleed over the radiotherapy bed eh? Oh if you have radio on your face/head you get a thin mattress! I begged them to leave it on for me but they said "No sorry, you get the cold hard bed, no mattress for you". Charming, still I could fall asleep on it face down at the drop of a hat if they just left me alone. Having counted pretty much every radiation beam - I have approx 3 seconds (6mv) to the front, 20 seconds to each hip (10mv) and another 12 to 15 seconds, I always lose interest by this point as it's the third one (6mv). I wonder if I'll be in the local press tomorrow.............I do hope they get everything right.

2007 Mar 22nd - Journos and Photographers

Thursday, March 22, 2007

Oh my God I can't believe I just did that! Category: Life Um after a large bottle of Peroni last night, it's been weeks since I had a drink btw, I forwarded an adapted email to the editor of the local press from Bowel Cancer UK . It's basically pushing Bowel Cancer Awareness next month and I stuck a bit about me in too for "local interest". Well they only rang today, took some details - I forgot to mention the following: tattoos, menopause, bloody hurty wee. A photographer is coming tomorrow at 6pm. Oh bugger, luckily it's hair wash day tomorrow, dry shampoo just won't cut it two days in a row. Panicking slightly at the state of the house...........luckily just had a text from Kim & Aggie's protege - Umpalumpa so will be ringing for advice and emergency assistance as offered. I hope they look at the website and get some facts, I hope they don't misquote me, I hope they get my good side. More importantly I hope it makes someone or some bodies go to the doctor with the local paper in their hands and maybe gets treatment a bit earlier. Oh and what the hell are the kids going to say if I'm in the local paper, will they get picked on cos their mum's arse doesn't work or will they be cross with me for putting them in the spotlight. Really should have talked to them first. Damn alcohol and hindsight. 18:09 - 3 Comments - 0 Kudos - Add Comment - Edit - Remove

	Umpalumpa	Umpalumpa ready and at your service.................................. Oh - and stop the worrying about your hair, cus' it always looks nice (tut) I'm so proud of you Sis xxxxxxxxxxxx Posted by Umpalumpa on Thursday, March 22, 2007 at 22:21 [Remove] [Reply to this]

	GlitterGirl....	Good for you chick....I'm sure the kids won't be cross and will think you're dead brave for doing it (which you are). Having a defective arse doesn't do Sharon Osborne any harm..... xx Posted by GlitterGirl.... on Friday, March 23, 2007 at 00:10 [Remove] [Reply to this]

Lisa Left Eye Loopylalalalala

Fank you lovey! You have got the most massivest grin EVER! Talked to Karys, she looked a bit terrified and said "um can I hide in my room I don't want my photo taken" and after that was fine. I told her a bit more about why I was doing it, that if I'd left it another few months maybe the doctors wouldn't have been able to help me get better - first time I've really told her how serious things are and she took it OK (having brought me a cup of tea to my room since I was in bed before her). Posted by Lisa Left Eye Loopylalalalala on Friday, March 23, 2007 at 21:25

2007 Mar 21st - The Treament is Working

21 Mar 2007

Rayman rocks Category: Life Points of observation: Tyson appears to have given up on the whiney bleeding Having had 3 periods in 50 days I've not had one this week, or last week so erm I think the radiotherapy has killed my period. As at any given time I simply MUST have at least one bleeding orifice my bladder has taken on this honourable task and is throwing in some pain to go with it. I don't like hurty wee. I'm feeling a teensy weensy bit grumpy. I noticed that whilst putting together a bedside chest of drawers on Saturday that I was feeling bloody hot, despite wearing only a vest - reason temperature 37.4 C. If I get a temperature of 37.5 at any two readings I get a stay in hospital - I had a very cold pint of squash AND some cranberry juice and sat down til it came down to 36 C. I've lost 3lbs. If I lose "too much" weight my tattoo markers will need to be redone or I'll be getting too much zapping or it'll be in the wrong place. I'm secretly a little pleased that I lost weight without even trying even though I know this is generally not a good thing for someone with a) cancer b) on chemo and c) having radiotherapy. My PICC arm gets really sweaty over the course of a week because the white gauze has to be literally peeled off my arm. URGH. I'm pretty useless at doing anything other than going to hospital, sleeping, watching TV, staring at my PC or playing on my new DS Lite. I bought Rayman Raving Rabbids. It has mad raving phsyco bunnies in it - NO Karys that's not like Alfie (Alfie is our pet girl rabbit - please feel free to ask).

2007 Mar 8th - Airing My "Bits"

Thursday, March 08, 2007

Both barrels! Category: Life Well I'm wearing my new PJs and slippers and dressing gown courtesy of work - I'm letting "air" get to my radiated bits on account of, well that was advice I was given! Tuesday we arrived at Lincoln hospital an hour early at 11am (mum left plenty of time since we went via her tractor) encountering NO traffic to speak of. Ho hum. Time for a cuppa and a sit down, oh and as I'm sure you're all aware now - a toilet visit. Mosied on round to oncology and checked in, then sat to wait for my first appointment with the lovely Dr Tom - at 13.20 - running an hour or so late, but you know it's reassuring to know if you need extra time you'll get it! I went in on my own and waited some more in a side room - eventually he came in, shook my hand (as mum says you have more confidence in a Dr who shakes your hand) and sat next to me, that in itself was a little odd. He went over side effects again but added that I'll be going through an early menopause as the beams will be going through my ovaries . So therefore I'll be having HRT sometime in the future, be at increased risk from heart disease, osteoporosis yadda yadda yadda, oh but reduced risk of breast cancer. Always a silver lining eh? And think of the money I'll save every three weeks! There's a very small (5% I think he said) chance that the beams will also zap my small intestine which could cause narrowing to the point where I need an operation to remove that section - oh goody! I'm already drinking buckets of water and cranberry drink to avoid cystitis as my bladder and uterus may also shrink and get upset. To quote Tubs from League of Gentleman "My insides are all wrong". More good news though, as they currently see node involvement (which they won't know for sure til they get lab results back after my op) as I'm doing 6 weeks continuous chemo now, I'll only need 4 months instead of 6 months post op chemo - 8 sessions so every fortnight. If by some magic after the TME (total mesorectal excision) where they take away my rectum and all the fatty mass containing the lymph nodes - anyway if, by some magic that comes back cancer free from the labs I may escape that chemo altogether. Well let's not get our hopes up yet - they're still expecting to give me chemo. Oh and I showed him my chemo bag - he said it's very fashionable or something, but he's not seen one as nice. Signed another consent form, shook hands then back to waiting room. Approximately an age later, despite "Sister" preferring chemo appointments to happen before radio - I go through for my first Tyson zapping. Had a chat through exactly what will happen and side effects again, checking that I've got lots of aqueous cream to soothe the burns and simple soap to wash with - oh and I need a "comfortably full" bladder. Ah well I've not been for an hour or so, which seems enough. Debagged again, face down on the bed in a massive room surrounded by very thick walls. A bit of shuffling me about to match me up to the tattoos and MORE drawing crosses on my backside - purple ones this time so at least they coordinate with my bag. First I get zapped on my front, then the machine moves around and zaps my right him, then my back, then left hip and it's all done. I'm getting two doses of 6mv and 10mv - 45gy. Whatever the hell that means . Back to the waiting room........ Again an age later and I go through to the (much bigger than Pilgrim) chemo suite. Another lovely nurse - I'm sure she was called Sarah, who gave me a card with website details for the kids to talk to other kids whose parents have cancer. She did yet another style of dressing, and because my skin is now getting sore and red under the constant dressings whipped out a magic flat lollypop thing which coated my bare skin and should help create a barrier between that and the sticky stuff. She also gave me spare dressings! That's great because after several attempts with the bathguard in the shower they get pretty grubby and start coming away then I get twitchy about infections in my "wound". All in all 5 hours at the hospital. Phew. Wednesday's visit - only one hour in total! Plus a brief encounter with my mate Pob - during which I remembered that coke does NOT agree with my insides any more even on a full MacDonalds veggie and cheese roll belly. Damn. bye for now! 19:42 - 1 Comments - 2 Kudos - Add Comment - Edit - Remove

Eeeyun

Yeah girl! You get that air to your bits... right on. Ahem... Gimme a shout if some company would be handy next time you're about. :) Posted by Eeeyun on Friday, March 09, 2007 at 14:19