2007 Nov 26th - Blood Test Rage....and Mobile Phones

Monday, November 26, 2007

The fifth element.................disappointment! Category: Life Harumpf! Strangely I didn't bother washing my hair this morning, I thought, no I'll save the hair washing (with right arm in a plastic bag, it's such a chore) until Wednesday when I have my final chemo pump removed (pump number 15 in total) and PICC line. I had already planned to wear a new lovely purple shirt today which was a birthday present (thanks Angela ) because it looks great with the purple Accessorize bag I put the pump in (again thanks Angela!). Having been awake (as is usual for me these days) until about 4 or 5 am I dozed off after waking at 8 and multipurpose life sized swiss army knife Becky was again my alarm call and chauffeur, not to mention chemo companion for the day. All was not good with Becky........but not for discussion here! Suffice to say with my lack of sleep we were both growling on her behalf by the time we arrived at the hospital after a quick shower. It started well. A lady in a little car pipped and waved.............no we hadn't nicked her space (oh yeah I left my blue disabled park anywhere for free badge at home ) it was the red cross lady! She said not to hurry because there was no-one there to make us a cuppa, she was running late. Becky stayed outside to take a call and I strutted off in noisy heeled boots to the pathology dept. I checked my phone before turning it off (out of courtesy as they still have the out of date no mobile phone signs up) and was grinning at a text message. Tapped out a quick reply during which time some spineless jobsworth woman (a patient) remarked to her husband "There's a sign over there". Not sure why she was telling him because he wasn't using his mobile............. I told her "Don't worry I'm turning it off in a second" Obviously upset that I'd dared to respond to her talking about me whilst I could blatantly hear her, she offered this little gem: "You shouldn't be using it at all". Now as I'd had a) very little sleep b) very little patience with people who can't say something to my face c) enough other concerns to reduce nosy parker tolerence levels today I really couldn't be bothered to recite the following information, which I have been aware of for well over a year and having been an in and out patient at the hospital over the years I know how many doctors and nurses use mobiles in all parts of the hospital. I also know that they don't mind me using them when I've been in for treatment. This is not me playing the cancer card it's because of recent guideline changes reported in the British Medical Journal back in October 2006. They write that the new, more relaxed, guidelines from the Medicines and Healthcare products Regulatory Agency (MHRA) are "less restrictive but still overcautious". Dr Stuart Derbyshire of Birmingham University, UK, and Dr Adam Burgess of Kent University, UK, point out that patients, staff, and visitors often have their mobiles switched on, and there is no firm evidence of serious consequences. The new MHRA guidelines state: "A total ban on mobile phones [in hospitals] is not needed and is impossible to enforce effectively" but "mobile phones should be switched off near critical care or life support equipment and should be used only in designated areas." The guidelines add that ring tones and conversations may disturb patients, and that the use of camera phones may undermine patient privacy. But the authors believe this could be more restrictive than the old regulations. They highlight the potential benefits of mobile phones over standard pagers, such as speeding up communication. Interference with medical devices is rarely a problem, they say. In general, studies find it is "merely an irritation and ultimately harmless to the patient". "We urge hospital managers and clinical directors to adopt a more flexible approach to the use of mobile phones on the basis that the advantages clearly outweigh their largely mythical risks," they conclude Now I'm no technical genius but I didn't notice ANY critical care or life support systems in the waiting room for blood tests. It's on the ground floor right in a corner of the hospital away from anything else. Miles from Critical Care (I know I was in there in June). Rather than attempt to explain this to the woman I just said "I know what I can and can't do I come here often enough" "So do I" was the witty retort................... "If you have a problem why didn't you say it to my face instead of talking about me when you know I can hear you?" "Oh SHUT UP!" Hmmm................well there seemed to be no other choice than to tell her to "Piss off". I took my coat off and the sleeve that was covering my bloody PICC line and dressings in preparation for blood tests and line flushes - hoping she'd see it and think I was like really ill .............oh wait.........I am hahaha! Becky came in a minute or two later so I warned her "I hope you have turned your phone off because this "lady" will tell you off otherwise, she has a problem, an ATTITUDE problem" Yes I know I wasn't exhibiting the best attitude myself, but seriously couldn't she have just said "Excuse me but I don't think you're supposed to use that in here, there's a sign on the wall". But no, she had to be rude about it so I'm afraid I snapped. I imagine she is rather like Blanche from Coronation Street spreading malicious gossip about all and sundry. Anyway my blood test hurt and we trotted off to the chemo suite. Neutraphils were 1.2........great. Had my line flushed and then went through my DLA claim form that had been sent to the hospital (received by them over a month ago but sent on 3rd October). It asked amazing questions like Explain the condition and include whether it is mild, moderate or severe in your answer................Hmmm Stage 3b rectal cancer..........how bloody severe IS a life threatening disease. Bloody severe I'd say. At least we got to use the phrase faecally incontinent again........loving that hahah! So FIVE deferrals, refusals whatever you want to call them and now my trip to London is on the same day as my next chemo day. Also I had arranged to meet someone who was arranging travel details on the Tuesday. Faced with the dilemma of needing to finish chemo, meet friend AND attend London meeting without being affected by Oxali side effects. After debating my entire social life we decided I'll go to London, come back then have chemo at 9am on Tuesday and meet my friend there...........bit weird but well I'll be sat in a chair for a few hours and we just want to meet for a chat. Plus we get free tea from the lovely red cross lady! Sorted. To compensate for our joint crappy day (two other chaps had rubbish blood and were sent home too, we were all pretty downhearted) we went off for a spot of shopping and lunch at the local department store for a whinge fest. It was great. Washed it all down with a cappuccino. 17:48 - 8 Comments - 4 Kudos - Add Comment - Edit - Remove

	Caroline	Hmmmmmm Lisa - you have had a bad day - s**t! You could have done without that awful woman - that's all we need when we're feeling crap! Good for you speaking out - it has to be done sometimes cos peeps like that should just keep quiet!!! I had a rather nasty incident on the bus a couple of weeks ago with a senior citizen calling me all the names under the sun cos he wanted the window seat - he didn't say this - just told me to MOVE!!! I should blog on MySpace, but wouldn't be able to type what actually got said!!!! How dare he and also how dare "Blanche"!!!! So looking forward to seeing you next week and I hope that the next few days are good ones for you babes cos you certainly deserve it. xx Posted by Caroline on Tuesday, November 27, 2007 at 00:58 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Well Caz it was a tense day, it was never really likely I'd get the drugs as I scraped through last time with just .01 over the threshold. Nice bus passenger! And they say young people are rude? Still the bonus of no chemo is I'll be looking much better until I see you all and start blubbing! I'm actually feeling rather good overall, just nervous energy today I think and my little umpa has had much worse time lately so I was feeling aggressive on her behalf too, I think. See you in a week xxx Posted by Lisa Left Eye Loopylalalalala on Tuesday, November 27, 2007 at 01:04 [Remove] [Reply to this]

	Bad Fish	I'll send you some virtual pins to stick in the eyes of old bags who feel it's necessary to be jobsworths and whinging bitches! I nearly got into a fight with some bean-headed little chav at the weekend (called him 'pottymouth' in front of his friends, which they thought was hilarious) and my Good Fish said afterwards 'don't worry - if he'd tried anything, I'd have lumped him'. Bless. Posted by Bad Fish on Tuesday, November 27, 2007 at 00:58 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Haha I love that expression......it's one I'm quite familiar with as I can be one when riled. I've done a lot of fishing myself lately and got a few in the net.......not decided which ones to set free and which one to take home for dinner! Posted by Lisa Left Eye Loopylalalalala on Tuesday, November 27, 2007 at 01:06 [Remove] [Reply to this]

	Peter	Oh dear, it must be something to do with the chemo(?) Mrs. M was feeling stressed and took a day off last week so we went for a nice lunch together. A popular resturant, we waited for a table which was fine. Having ordered our food and bottle of wine, this "lady" with two very young children in tow ignored the queue for tables and said "you've got a table for four so we'll join you". So, in the best chemo tradition I replyed that, no, she wouldn't. I wont bore you with the rest but neither Jackie nor I had wanted me to go into one but I did anyway! Posted by Peter on Wednesday, November 28, 2007 at 01:09 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Hmmm now she's obviously rubbish at maths that woman if she thinks three adults plus two kids equals four anyway! I hope she was suitably embarrassed and you enjoyed your meal in peace after that, but I'm guessing she didn't have the courtesy to be embarrassed with such a lack of manners! Poor Mrs M :o( Poor us getting no evil chemo :o( Still at least it was a bit warmer today...............my fingers didn't hurt once! Posted by Lisa Left Eye Loopylalalalala on Wednesday, November 28, 2007 at 01:13 [Remove] [Reply to this]

	GlitterGirl....	How funny that we're all discovering our confrontational sides...! Had huge fight with dippy neighbour who decided she was entitled to block the access road whilst using the cash point (slowly!)....her response? "But I live here...!" I have never called anyone a "f*&king halfwit" to their face before. But it felt surprisingly good. And don't get me started on the scrote who drove into the back of my car at the M6 toll booth on Friday.... Posted by GlitterGirl.... on Tuesday, December 04, 2007 at 20:28 [Remove] [Reply to this]

Lisa Left Eye Loopylalalalala

Fuckwit is Beckie's favourite cuss word lately, she was gutted one of the comedians used it ....she shouted "that's my word!" but not too loudly thankfully......... Posted by Lisa Left Eye Loopylalalalala on Wednesday, December 05, 2007 at 00:48

2007 Octo 23rd - Sisters Take a Day Trip to Hospital

Tuesday, October 23, 2007

Sisters are doing it for themselves (all flippin day too!) Category: Life Blimey O'Riley. Tootled along to the path lab at around 9ish on Monday morning for my blood test, Lisa said there was little point going on Friday because she knew they'd fail and would need retesting on Monday anyway. Becky was there for her lovely barium x-ray but I'll let her tell you about that (weird loopy colon girl) so we made a day of it, literally. I am ashamed to say I scoffed sausage, bacon, beans, mushrooms and a hash brown AND a slice of toast with tea while poor "nil by mouth" sipped on a black coffee for breakfast in the hospital canteen. Back on the chemo suite at 10.30 where I was having my PICC dressing re done and flushed - with a syringe left attached, Lisa came out with two patient blood results, Mrs M passed............me? My neutraphils were borderline so they had to do a MANUAL recount of them, but putting a blood sample on a slide and count them one by one. This took 90 minutes (well they are small..........and I don't have many left) during which time I accompanied Becky to x-ray and then back to WAIT. I love waiting, I'm getting incredibly good at reading the same magazines over and over again without whining (like many do) that it's an old copy. I took a huge stack in a few weeks ago of recent ones! At 12pm Lisa came out to say they were JUST ok, at 1.51. If they'd been 1.49 I'd have been sent home for the fourth time. Just in time to order more tea and free sarnies from the lovely red cross lady (who we discussed pampering and massages with and compared notes with centre parks). There was a jolly crowd in but I did get a bit teary (well hidden through years of practice) when one lady said I was so very young and it was people my age she thought it was cruellest for, that she'd lived her life and I still had mine ahead of me and now this. They were a lovely couple, her husband was a sweetie. Eventually all the drugs had gone through and I was connected to my 13th (in total this year) pump of 5FU and off we dashed to Asda before Becky was too late taking her son to football practice. Oops. Oh AND my Wii is here! Karys was to stay in all day and tidy her room so she can go out the rest of the week.............to wait for delivery. Despite instructions to the contrary she must have been in the shower when he arrived but luckily he left it next door. I made her fetch it before I got home on the promise I'd not still be cross by the time we got there. I unpacked it, but still haven't played on it I'm just too poorly at the moment. My hands keep cramping and twisting up today so I put fingerless gloves on to warm them up and make it go away. Bed is where I'm staying today with Pobster's loaned laptop. I should chase Toshiba about mine being repaired but really.......I can't be bothered.. I need to see GP for a sicknote for benefits, get a MED4 form for benefits, get a flu jab, buy road tax (after the shennanigans with the police notice earlier this year I'm not forgetting again) and register on the electoral list, oh and email pics of Center Parcs to the Willow Foundation. Not to mention the ironing and washing and washing up...............bah. I might just play on the Wii later instead. Or just dream of a beach wedding with a mysterious tall dark handsome man................ 13:52 - 4 Comments - 6 Kudos - Add Comment - Edit - Remove

	Caroline	Hmmmmm Lisa -well for me it would be to dream of a beach wedding with a mysterious tall dark handsome man! You never know - some dreams do come true babes! Take care and keep your chin up. xxx Posted by Caroline on Wednesday, October 24, 2007 at 21:20 [Remove] [Reply to this]

	Umpalumpa	Luke still got to footy training, he was just a little 'fashionably' late hehe Now if SOMEONE happens to pinch your ironing tomorrow and deliver it back Thursday, thats one thing off the list, (and if its been pinched you can't argue about it hhmmm) I can clean on Saturday, which leaves a BIRTHDAY GIRL visit on Sunday whereby we can drink chai latte and eat yummy stuff. We could even fit a facepack and hand/foot massage in if you'd like, not up to the quality of Center Parcs, but we can pretend!!! Whaddya Fink???? x Posted by Umpalumpa on Wednesday, October 24, 2007 at 21:20 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	OH icckle sis! You must think I'm sooo rude, I only just read this! But YES please to all of it... H is coming by sometime Sunday morning and might not have too long so I'm thinking pm for chai fest? I should just about be able to lift a mug without it hurting too much! xxxxxxxxxxxxxx Posted by Lisa Left Eye Loopylalalalala on Wednesday, October 24, 2007 at 21:23 [Remove] [Reply to this]

Fiona

Hiya Lisa, what a relief you're back on track, take care of yourself first too. Was going to say they won't go anywhere - but with Becs they could - what a great sis. Think I'll join you both in spirit on Sunday pm - could do with a bit of pampering myself. I'm with Caz - dream away, it doesn't cost either! Love Fi xxx Posted by Fiona on Friday, October 26, 2007 at 16:38

2007 Oct 8th - Well Enough To Be Poisoned!

Monday, October 08, 2007

Yeay! I’m well enough to be poisoned at last. Mmm chemo...mmm GCSF! Category: Life Well I was supposed to blog about Center Parcs but I've felt too rough to string a decent sentence together with my latest illness. Suffice to say we had a great time, very excited when we started seeing signs for Sherwood Forest and were doing little dances and punching the air (and waving to the other car). The swings were ACE, we felt obliged to send the kids off swimming for two hours "really, can we really stay for two hours mum? " whilst we tested all the park areas out. After the good news about my (fairly short lived) high of a score of 7 neutraphils I decided to ignore feeling tired and enjoy the fresh air. We did a lot of walking, maybe a little too much but still even being physically drained I struggled to sleep, thoughts churning round in my head as usual. We all had an ensuite bathroom in each of the three bedrooms - the boys even had a spa bath! The sauna didn't get used, but the oven, hob, dishwasher and shopping the Foundation delivered did! Friday night we all sat down for an italian, being of small appetite these days I only had a pizza and forced down an amaretto liqueur coffee, as did Bex. The kids all enjoyed their meals and it all tasted scrumptious! Saturday was facial day, soccer school for Luke and zip wire for Phin. The girls went to a cartoon workshop for a couple of hours. They all went swimming in the afternoon whilst we entertained our very special guest (who came armed with lovely presents!). Sunday the sore throat I had hoped was dehydration all weekend proved to be my worst day, but Pilates was excellent! We both want to take it up if funds allow since it's good for core strength and is OK for me to do with the ileostomy - in fact it's very good to help avoid hernias. More soccer school, wall climbing (I have Phin's exploits on camera) and a virtual fashion session for the girls who designed their own t-shirts. I got a bit crabby with the kids because I felt so rotten, but I think I got away with it and didn't upset anyone for long? We had a carvery which wasn't that great to be honest, the veg was very undercooked and maybe it was my cold but it was a bit of a let down - still the second bottle of fizzy booze Umpa packed and the chocolate for grown ups soon made up for that hehe. Monday was 3 steps to heaven day - back massage (and boy did everything ache and feel "glandy" by Monday) and scrub, facial, head massage. I'm not sure how I'd have driven home if I hadn't had that hour of indulgence - but when I did get home I went straight to bed and slept for two hours. Glad to be home but it was very quiet with three people missing. Tuesday - as you know was reject from chemo due to my sore throat and germs. Fast forward to today (lets just say retail therapy was necessary this weekend - including new bedding which is VERY pretty but also very expensive looking, yet not too girly). 11.30 appointment (oops hang on that means sis can't take me so I'm on my own with back up collection after she finishes work) and arrived only 5 minutes late. I managed to wave some eyeliner at my eyes but it didn't make them look any less red raw. Thankfully although I was still sounding a bit like a Tunes advert "secud clath rethurn thoo dothingham pleathe", my neutraphils were still holding out a 3.9, now my red cells are dropping a bit so keeping an eye on that.........I see a blood transfusion on the horizon, platelets however got a nice boost after the GCSF injections. I sat in the corner near one of my chemo mates who was very happy (never had bad blood results EVER) being connected to his 12th and final pump. Hopefully they will no be able to operate on his metastases in his liver and maybe remove the primary bowel cancer (he's stage 4). When they left, he and his wife both gave me a hug and a kiss on the cheek and we wished each other well. I'm planning on making him an "I've been a good patient and finished all my nasty chemo" laminated badge tomorrow! In fact I'm going to make a few in case anyone else finishes while I'm still attending. He's going to sneak some vodka or gin in with my glucose IV on Wednesday when we go to be disconnected from our pumps - only three more to go after this one YEEHAH! Lisa (now at last promoted to sister) gave me my blood results to fill in the gaps in my chemo record book just in case I fall down in a faint or something and a stranger finds me or summat........... I'll be doing a little chart of my results because it's been a while since I did anything like analysis (try over 6 months) and I'm getting withdrawl symptoms from being a geek. I'm going to miss that ward. I shall be sooo happy not to need to go again (please please no recurrence needing crappy chemo ever) but they're like my cancer family in there. I rarely feel miserable in there because it's a place of hope. I still remember the tears when I finished chemo and radiation at Lincoln earlier this year - it was very emotional, not least because I knew I would never see John again. He didn't have long left, but you'd never know it to talk to him. Anyway...I even managed a shuffle round Aldi with the aid of a trolley to get some essential lunchbox items for the kids and some handy instant food for me this week. Already the spazzy hands have shown themselves, but in no way as bad as the first three cycles on full dosage. I think the B6 is helping with that too. I ate bacon, toast, fried tomatoes and some of aunty Susan's spiced plum chutney for lunch followed by a mouth numbing tirarmisu from the fridge (yep chemo mouth freeze strikes again). I feel very achey today, very glandy so can't really tell I'm on chemo because of the cold virus - a bonus in my eyes! Poor sis has it too - oops. So the diary for this week - Tuesday - Pobster cooking me dinner again or fetching a take out so we can wii to our hearts content, delivery permitting! Wednesday - hospital for disconnection Thursday - visit from Katy Friday - visit from district nurse for jab 1 of GCSF Saturday - visit from district nurse for jab 2 of GCSF Sunday - visit from district nurse for jab 3 of GCSF Phew thank heavens I'm incapacitated - I don't have time for work. P S - forgot to mention there is more green stuff weeping from my PICC site so this time I got swabbed for MRSA.......I know that's what the swab was because they shoved the black covered giant q-tip up my nose on admission prior to surgery! 18:57 - 4 Comments - 2 Kudos - Add Comment - Edit - Remove

	Billy Bollockchops	The Center Parcs pics are brilliant! My Wii is in the van apparently and I'm at home waiting for it. I hope it comes before I go out to meet Brek Abitochoklitov for lunch. PS: I'm still not sure what I'm making tonight :-.. Posted by Billy Bollockchops on Wednesday, October 10, 2007 at 11:10 [Remove] [Reply to this]

	Umpalumpa	*sneezes very loudly* Cor blimey, you are a busy bee. Would there be a slot in your diary perhaps for a yummy chai latte and grown ups chocolate with no less than 85% cocoa solids mmmmm? Hope the chemo mouth/fingers/legs are not giving you too much grief. xxxxxx xxxx xx x *sneezes even louder* Posted by Umpalumpa on Wednesday, October 10, 2007 at 11:10 [Remove] [Reply to this]

	janey jane jane	Ask Pob where he got his Wii from. I can't get one for love nor money over here. Tar lovey xxxxxxxxxxxxxxxx Posted by janey jane jane on Monday, October 15, 2007 at 23:22 [Remove] [Reply to this]

Lisa Left Eye Loopylalalalala

I think you'll find it was I who solved this problem for him hahaaha! I am a total genius, he was traipsing round shops and I surfed the net. I'll message you privately because I want one and I think I know someone else ..........so we could combine postage maybe? Posted by Lisa Left Eye Loopylalalalala on Monday, October 15, 2007 at 23:33