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 I checked my phone before turning it off (out of courtesy as they still have the out of date no mobile phone signs up) and was grinning at a text message.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 Sep 25th - Families and Bullying

Tuesday, September 25, 2007

My space - is EXACTLY that - mine and I can do whatever I want. Category: Blogging I made my profile private due to repeated hate mail from a pathetic young man who seems to think it's big and clever to victimise a disabled cancer patient who doesn't know how long they have left to live and will spend the next three to five years waiting for the all too likely recurrence. Apparently for someone who has lost a grandparent (i.e. someone who has lived long enough to actually see their kids grow up AND their grandchildren, something I may not get to do) it is perfectly reasonable to behave in thie way according to his father and my mother. Apparently I have caused all my hurt over the last 30 odd years, myself. So has my sister caused hers. Apparently I deserve the name calling. Apparently I have an "agenda". Here is my agenda: 1. - ignore people who want to hurt me and cause more stress and perpetuate neutropenia 2. - get well enough to have the dreaded last four chemo sessions 3. - recover from chemo sufficiently and hope that the other problems I've been having will not prevent my reversal going ahead. 4. - have a successful reversal with as much quality of life as can be expected having lost so much of my insides 5. - return to work (not full time) 6. - spend as much time as possible with my children 7. - spend as much time as possible staying in touch with friends and family, especially those in Derbyshire who have been such a great support. 8. - NOT get a recurrence in my liver, lungs, bones or brain EVER. 9. - have the ability to get through the next 5 years without panic attacks of thinking another tumour is making itself known at the slightest twinge. 10. - carry on writing about my cancer experience in the hope that it helps more people realise they are not alone, that problems can be over come and it is worth fighting for your life. I didn't want them reading and misquoting or misinterpreting or in fact generally missing the entire point of anything I write, much worse being vain enough to assume everything revolves around them. "You're so vain, you probably think this blog is about you.........". I also don't see why my mother should be able to read about my lack of good health if she can't be bothered to respond to my last message, phone (mobile or house), text, write or email, let alone a visit to sort out the hurt she has caused. However my main aim with myspace was to spread the word about colorectal cancer, especially in those of us unfortunate to suffer at such a young age with young children. Due to many requests from people who want to read about my progress, who use my blogs for information and support for others with colorectal cancer I have therefore made my profile public again and blocked the people who I have no wish to communicate with. I do not have to put up with bullying or lies any more. I spent my life doing that, I'm going to enjoy the rest of my years, however short or long surrounding myself with the people who have known me and who love me. I have some very good friends, some of whom I've known for 25 years, though due to not being allowed friends to visit me at home or even allowed to telephone they never met my parents/step-parents until the last year. I spent any time I could at weekends with these friends and was welcomed into their family homes where I at least learned what a healthy loving family looked like. If it hadn't been for these families I don't think I would have managed to bring up two lovely children who are well mannered, loving and most importantly normal - in that they are not ruled by fear. Nor would I have realised that sharing custody of my children with their father was the best thing for them (though certainly not for me) when we split up. All through the pain of growing up knowing things that happened to me were wrong, my friends were there for me, their parents were there for me. Mine weren't. I'd like to say thank you to the people concerned, especially those who I know will be reading this. Thank you for getting me through the really tough times so I could be here today and giving me the will to fight to be here tomorrow. 15:52 - 15 Comments - 8 Kudos - Add Comment - Edit - Remove

	Peter	Thinking of you. Sorry it's the best I can do, Peter Posted by Peter on Tuesday, September 25, 2007 at 21:37 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	thanks cyber uncle Peter! Posted by Lisa Left Eye Loopylalalalala on Wednesday, September 26, 2007 at 16:42 [Remove] [Reply to this]

	carol	I'm so sorry that you've had to deal with all that crap on top of everything else. I don't pretend to know all the ins and outs of your family relationships but I do know that the most important thing right at this moment is that you get well for your and your children's sake. Take comfort in their love, congratulate yourself daily that YOU have managed to make them into the wonderful children they are and in those moments of despair when you look at your children and wonder how your own mother could treat you this way, remember that there are a lot of people who do care, even relative strangers like me, who wish you a speedy and PERMANENT recovery. Keep that fighting spirit going and get those neutra-whatsits multiplying! Posted by carol on Tuesday, September 25, 2007 at 21:38 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Thank you Carol, I had a particularly bad couple of days but now we're just concentrating on a fantastic weekend this weekend - me, sis and the kids! Not sure who's most excited out of the six of us! Posted by Lisa Left Eye Loopylalalalala on Wednesday, September 26, 2007 at 16:44 [Remove] [Reply to this]

	Mandy	You go girl! You're doing fabulously, keep it up even in the face of adversity. Big hugs x Posted by Mandy on Tuesday, September 25, 2007 at 23:27 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Hugs back to you Mandy, we'll get there in the end. x Posted by Lisa Left Eye Loopylalalalala on Wednesday, September 26, 2007 at 16:45 [Remove] [Reply to this]

	Pamela	Glad you're making your profile public again. I've read all your blogs, blinking back the tears, but this one broke me. You don't need, and certainly don't deserve any of this negative stuff. Like Carol said, there are a LOT of people who DO care. Keep up the fight. xxxxxx Posted by Pamela on Tuesday, September 25, 2007 at 23:27 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Sorry Pam, I think I've just become numb to it all now and it doesn't make me cry so much, hope you had enough tissues :o( Having a much better day today though in a lot of pain from the neutra thingy wotsit maker injections - oof. Posted by Lisa Left Eye Loopylalalalala on Wednesday, September 26, 2007 at 16:46 [Remove] [Reply to this]

	Hayley	Ok, I know I'm pregnant but that blog would have made me cry anyway. For 25 years I have been very proud to be your friend and I love you very much and I know you dont deserve any of this crap, particularly from your so-called mother. I wonder why she thinks she wasnt at your wedding way back when, that's when I met Umpa and some of your other relatives. Funny how I just accepted her abscence from your life during our formative years, you never referred to her or your "home" but I was always happy that you spent time with me at mine. Considering everything that has happened to you - from your childhood abuse to losing your babies and now, this bastard cancer - You've got to be an amazingly strong person. More than that, you are one of the few people I know I can rely on and who I'd trust to fight Elizabeth's corner if I wasnt around. Words I would use to describe you are loyal, honest, sincere, brave, funny, clever, loving, - I dont recognise the person that is referred to by your mother or her new family and frankly, they dont deserve you. By the way, you missed 1 item off the agenda - come to France and have a gin night with me! Posted by Hayley on Wednesday, September 26, 2007 at 16:28 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	Again sorry for inducing tears. Funny thing is she WAS at my wedding, but told me before hand she would only be at the service (10 whole mins of their time) and wasn't coming back to the house. Then she told people Jack had a migraine and couldn't come back to the house. They knew she was lying since I'd already told everyone! I didn't have a home until I met the kids dad, but I've had one ever since and my kids, my nieces and nephew and Biz/Tarzan will also always have a home here if needed. Gin party is a given, doesn't need to be on the agenda! Posted by Lisa Left Eye Loopylalalalala on Wednesday, September 26, 2007 at 16:49 [Remove] [Reply to this]

	Hayley	Finally, i have found the perfect gift for you - they sell a most disgusting sausage here and i've never known what its made of.....until now: Andouille Sausage = chitterings or the lining of the rectum!!!!! Do you want me to send one over? Maybe you could give it to Dr Tom??? Posted by Hayley on Friday, September 28, 2007 at 10:48 [Remove] [Reply to this]

	Lisa Left Eye Loopylalalalala	I feel awful sick Dr Tom.........I think it's myspace comments that are doing it! Posted by Lisa Left Eye Loopylalalalala on Friday, October 05, 2007 at 18:30 [Remove] [Reply to this]

	Bad Fish	Hey sweetheart, I still love you! Posted by Bad Fish on Friday, October 05, 2007 at 18:08 [Remove] [Reply to this]

Lisa Left Eye Loopylalalalala

And I love me too, I mean you (hehe) even if I am jealous that you appear to look younger than me. Harumpf. Posted by Lisa Left Eye Loopylalalalala on Friday, October 05, 2007 at 18:31