Call made to Dr R's secretary

Rang to query whether I needed to attend appointment with Dr M on 01/10/10 at 10am. Secretary said to speak to GP direct. I advised have been told to speak to her. Secretary refused to say whether appointment should be cancelled and said will speak to a doctor then call back by tomorrow. 

Email received from Dietician

Claire emailed to query how the overnight feed was going and to say she had passed on my email address to Marie (Nutricia Nurse), who would shortly be in touch about further training.

RIG Problem

Medical MusingTuesday, April 13, 2010
Rig Problems

Names and places have been changed to protect the innocent, the guilty and the terminally fussy
Please don't have a go, if you don't like your pseudonym.

13/0/10


No radiologists between here and Rowlingden from 1 o’clock Friday until Tuesday, by which time, I am no longer an emergency. The latest plan is to send me, as an outpatient, to my local hospital on Wednesday at 2.30. I have no idea how I will get there; Patient Transport, have no ambulances available. The radiologists will remove my mangy tube and check out the damage. If the hole, by some fluke, has remained open, they will replace it. This is not likely. A more probable outcome is that I shall be required as an inpatient, on the following week, for a fresh rig placement[1].

Oh, the ignorance, arrogance and arrant pomposity of doctors: how up my own arse am I?

I need a switch-button to activate a screaming banshee, “IT’S NOT A PEG: IT’S A RIG”.

MND Connect                         Only work Monday to Friday

MNDA Regional Care Development Adviser        Phone switched off / out of range

MND Specialist Nurse          Answer phone: out of office until Tuesday. Message left

Consultant’s Secretary        Answer phone: out of office. Message left

GP                                                Emergency Service only

District Nursing Service        Nurse attended.

I got home on Sunday (11/04/10) and Millie became increasingly incensed by my story. She tried to arrange some treatment for me, for the next day. Determined, she tried everyone we could think of.


The nurse did not know what a rig was. I described it. I told the tell, (“Finding the trick of what's been and lost ain't no easy ride but that's our trek, we gotta' travel it.”[2]) She was not comfortable to remove the dressing. I explained my main concern; that the tube strapped tight to my hot, sweaty belly, was still full of three-day old feed. A breeding ground for all kinds of chaos. She promised to refer me to the doctor, in the morning. She checked that I was able to take fluids and essential medication, before she left.


On Monday, by 9.30, only Millie had called. Pam says, “She were rippin’“(angered).



Approximate Times            Notes

12.40                     Friday 09 April 2010, I snagged my feeding tube, whilst toileting. When my brother-in-law, Thomas, moved me, my rig pulled. On further inspection, the stoma was bleeding and seeping a milky fluid. (Feed?) The rig tube had pulled out, to beyond the pigtail, which had become straight and clearly visible. I advised my brother, Dave, that I had an hour, in which to secure the integrity of the stoma, before my stomach started to heal.

12.45                     Dave phoned NHS Direct. A nurse gave us details of 2 nearby hospitals, Queen’s Hospital Banter and Rowlingden General Hospital. Dave phoned Banter, who informed him that they had no radiology department and advised us to go to Rowlingden, who did. Dave phoned Rowlingden General Hospital, gave all my registration, front-page information[3], explained the situation in detail, including the 1-hour window and was assured that we were expected.

12.50                     Marla loaded Roisin, with me, into the Doblo. Roisin is so cute, better than a voltarol. Marla was a woman with a mission. It was good to see. It was very cool that B was with Flo and Sye. All I could think was that this was some conspiracy, of cosmic proportions, to make me ruin mum’s birthday. Conspiralooning comforts me.

13.10                     Marla, Roisin, Thomas, Dave and I, arrived at Rowlingden General Hospital, where the receptionist was ‘unable to understand’ me but took my registration details from Dave. Ignoring my, by now frantic request for expediency, she showed us to a waiting area.

                A man in a cubicle was having a loud telephone conversation;
“(In a broad West Midlands accent.)
So he said, ‘I’ll stab you’.
So I said, ‘if you stab me, I’ll stab you back... in the heart’
And then he stabbed me”.

13.20                     A student nurse took us to a cubicle called the ‘Pit-Stop’. I again, explained the 1-hour window; she again, took my registration details. She repeatedly wrote and referred to my ‘peg’; I repeatedly corrected and explained what a rig is, emphasising the need to contact radiology. She offered me a paracetamol and went for a doctor, shouting across the ward, to someone, that I have, ‘Multi-Neurone Disorder’.

                               A computer monitor, in the ‘Pit-Stop’ showed the name and age of everyone in triage, along with their presenting symptoms. One fella came in with a foreign body inserted in his anus.

14.00                     The student nurse returned to the ‘Pit-Stop’ to advise us that it was staff handover time and someone would be with us soon.

15.20                     Dr W introduced herself and took another full medical history. Dr W asked if I had tried to push the tube back in. I asked her if she understood the difference between a peg and a rig. She said, “I’m very good at saving people’s lives, I do not know the name of every individual piece of equipment”. I explained that she could not push the rig tube back in. I described the pigtail.

15.30                     A nurse arrived to take blood and insert a cannula she again took a medical history. I told her that I needed to change my continence pad. She said that she would arrange a hoist.

15.45                     A nurse took me to the Medical Assessment Unit and asked me to wait.

                               A man rushed through to the cubicle opposite with an axe in his head.

16.00                     A nurse brought a hoist but the battery was flat, the spare battery was also flat. Another nurse brought a second hoist and 4 nurses proceeded to change my pad.

16.30                     Dr W made several phone calls and spoke to a colleague at Rowlingden, who made an appointment for an emergency peg insertion. I refused this procedure and he cancelled it. The two doctors tried to re-insert the tube. Again, I explained that I have a rig not a peg and it cannot be re- inserted in this way. Dr W told me that both my local hospital and Rowlingden had closed their radiology departments for the weekend. Dr W apologised for an unsatisfactory outcome.

17.10                     A nurse cleansed the area and placed a dressing over the rig tube and stoma.

17.40                     I was released and advised to contact my local Hospital on Monday 12 April 2010

18.00                     Mum’s birthday tea: made it.



Approximate Times            Notes

9.30                       Monday 12 April 2010, Pam phoned my GP practice at Waterfoot Health Centre. The receptionist assured her that one of the GP’s would contact me shortly.

10.00                     Elaine Donnelly, District Nurse phoned to find out how I was and to assure me that she herself had contacted the GP practice leaving a message for my GP with the receptionist. She then asked me to run through the series of events from Friday. I again emphasised my concern regarding the liquid remaining in the feeding tube strapped to my abdomen close to an open wound to my stomach.

10.15                     Faith Cox, MND Specialist Nurse phoned and asked me to run through the series of events from Friday. Faith arranged to phone back after she had spoken to Elaine in radiology at My local Hospital.

10.30                     GP phoned and asked me to run through the series of events from Friday. I asked him if the District Nurse had already given him details. He was afraid not.  He arranged to phone back after he had contacted the hospital.

12.00                     GP phoned to say that he had made an appointment for Wednesday morning with the endoscopy unit. I explained that I do not have a peg but a rig. He told me that the endoscopy unit at Riverden would insert a rig for me. I severely doubted this and asked him to contact Faith Cox. He asked if he could call round to my house after his morning appointments. I agreed.

15.20                     GP visited my home. He repeatedly referred to my peg and the endoscopy department at Riverden and wrote a letter of referral to Riverden for an emergency admission. He said that he thought it best to leave the dressing intact and not look at the tube. I gave him Faith Cox’ contact number and asked him to contact her before booking an ambulance.

14.00                     Faith Cox, MND Specialist Nurse phoned with an appointment at my local Hospital for Wednesday 14th April 2010 at 3pm. She advised me that a bed is booked on C1 from lunchtime on, should I need it. I may choose to go straight to radiology leaving myself plenty of time to book in and transfer to a trolley. Faith tabled the possibilities: The radiologists will assess and remove the rig. If viable, they will replace it at that appointment; if not, I will attend the following week, and complete the rig pathway as an inpatient. I described the doctor’s visit and asked Faith to contact my GP.

15.40                     GP phoned. Subsequent to a phone call from Faith Cox, he no longer felt it necessary to admit me to Riverden and was happy for me to keep the appointment at my local Hospital.




Approximate Times            Notes

9.30                       Tuesday 13 April 2010, Royal Riverden Hospital Endoscopy Department phoned to arrange my appointment to insert a peg. I assured them that the appointment had been made in error and was not needed. They agreed to contact my GP.

                            

                            



[1] I refer you to my earlier missive ‘RIG’.

[2] Helen Buday as Savannah Nix: Mad Max Beyond Thunderdome, 1985
She is also in ‘Dingo’ with Colin Friel and Miles Davis. You have to love that film for the popcorn and the sweet jazz-blues.
Does that make up for me quoting a film with Tina-simply-shut-up-please-Turner, in it?

[3] Name, address, local address, date of birth, contact telephone number, next of kin details, GP’s name and address, consultant’s name, care centre hospital address,  specialist nurse contact details, current medication, underlying condition, recent medical history.

Currently reading:
Granny Made Me an Anarchist
By Stuart Christie

Best wishes KB.

Clinic notes 10/03/10

1.      Current Medication:

Baclofen            60mg

Pregabalin         300mg

Riluzole             100mg

Ferrograd          325mg

Senna               10ml

Movicol             as required

2.      I have not reduced the Baclofen. There have been so many changes in medication that I want to be on an even keel before I change anything.

3.      My scan confirmed PCOS. I had a Mirena coil fitted last month.

4.      I am still enjoying Hydro and I am getting enormous benefit that lasts a few days and has a cumulative effect. I really know when I have to miss a week.

5.      I would like a review of the passive exercises that my staff do with me and they in turn have asked for further training/ refresher.

6.      A member of the podiatry team calls at my home, to cut my nails as required. I am concerned that my toes are curled and sore.  

7.      My RIG site had an infection that took some time to clear up. It is still sore and a little red but much improved. I have completed the course of antibiotics.

8.      I have noticed and other people have told me that I have put on weight. I would like to review my diet/feed.

9.      I attended the Lung Clinic The consultant was happy with my results and booked another appointment for six months time. I can only concur that a lot of the difficulty was anxiety. I have taken steps to try to alleviate this (mainly the Power of Attorney). Mainly dealing with staffing issues and my financial affairs. It helps that Christmas is over!

10.   I have signed 'Enduring Power of Attorney' forms, which are with my solicitor for processing – My family have split responsibility. I don't hold much hope that this will improve things dramatically. 

11.   I do feel that my speech has deteriorated and my manual dexterity has decreased further. I am glad to be the first person in the UK to get a Tobii C-Eye. I am not proficient but enjoying the challenge! There are quite a lot of glitches!

12.   I need to explain and discuss difficulties of using the toilet. This is not a problem at home, as facilities are in place but even in hospital I am required to use a hoist in a ward as the disabled toilets are unusable for me, even with assistance. Using public disabled facilities e.g. bars/restaurants is no longer practicable. I want to explore medical/surgical solutions or any other suggestions.

13.   My wheelchair has now taken on an electrical life of its own and keeps giving shocks to my staff and me. I have reported it to wheelchair services but there is, apparently, little they can do.

14.   I am struggling to use the phone, (I cannot press the buttons). I am fine, at my desk, in the chair as I have a possum phone / door control. I cannot use it, when I am outside, when I am in bed or sitting somewhere else in the house, out of range. I also struggle to operate the controls on my bed: this can cause severe discomfort. Do you know of a solution?

15.   I experience considerable back pain and feel my neck muscles becoming slightly weaker.

16.   I still have not moved house! Therefore, I have not changed doctor and still have no dentist, as there is no access available at my dentist's surgery.

17.  The OT refused my request for a through-floor lift in the new house.

18.   There is much to do, once I have the keys: MNDA have agreed to fund the removal of the closomat toilet and I intend to ask them to help with the cost of flooring. 

19.   When I have moved, I will be with a different MNDA rep; we have not yet met. Somebody mentioned that the MNDA are trialling some notes. I would like to be involved and take it a step further, to dedicate a secure web page for my patient held records. MND Connect was going to forward the template but has not, to date.

20.   The courses at College did not pan out because I was over-qualified. The plan to learn permaculture failed, when I lost my driver. I have to find something to do during the day as I am perilously close to resorting to daytime TV!

Rant: MND/ALS Spring Conference, Chester

I've just been to the MND/ALS Spring Conference - North West (UK)

Before I get going, please note that much of this is a RANT. I may and will feel differently this afternoon, when I’m clean and in company. Right now, I feel shitty: I am shitty; I shat myself an hour ago and it’s past the warm, cushion stage: there’s a blue-bottle, buzzing roung the light-bulb, with its bulbous eye on my arse. If I want to, I will RANT.
It was the end of a mediocre conference and I was drowsy. The final keynote speaker got up and I prepared to dose. More talk of research that won’t affect me. Don’t get me wrong; I admire these learned scientists; I applaud their dedication and wish them well. If they wanted to study my arm and it would help future generations, I would chop mine off for them: it’s bugger-all use to me but there’s your keynote, ‘future generations,’ – no research going on now or here on in, will help me. I’m just not altruistic enough to get excited about other people’s future. I don’t have any interest in watching the lottery programmes, either: I don’t buy tickets; I don’t want to win. I don’t envy their wealth; I just don’t share their joy. Analyse that, hey!
I’ve been living a fairly cerebral existence of late: my three-year dry spell will probably extend for the duration, so my emotional reactions may be fairly out of whack. The final keynote speaker got up and ‘bob on a boat,’ she was gorgeous; truly stunning. She had a deep, rich, Italian voice, with a bit of a cold coming on and I was entranced. Grinning; a sexy look for me, with dribble running down my chin, lol, I soaked in her every word. She could have been talking fruit-flies, for all I cared. Point of order: she was talking fruit-flies; Drosophila and it was fascinating. My momentary aberration done, I listened, captivated. For the first time in a while, I was using my brain, pushing myself to follow the lecture, stimulated. For sure, those white-eyed mutant flies won’t cure me and I’m still alone, in my own effluent but thank you Dr Giuseppa (Giusy) Pennetta for reawakening my love and respect for learning and living: flies around shit don’t seem entirely negative, now.

Best wishes KB.

My head is mashed.

, LSaturday, June 21, 2008

For Mashed get Smashed

Where to start?
You know most of the four-part harmony to this but I have been fairly quiet for a while, so to recap: I am involved in an on-going court case – can't discuss details.
Homophobic puss of a rancid nether meat.
I had a really shitty couple of days, Thursday and Friday and just as we were heading for a resolution, the whole thing was adjourned 'til July. I now have to go back to work on Monday with the vile accusations and character assassinations of my colleagues, ringing in my ears. I am in a limbo and although I am not primarily based in the same office as the people I was in court with, I have various meetings to attend, essential for my job, that they will also be required to attend. I am unable to focus on anything else. I just want someone to hit me over the head with a shovel and send me to sleep until the rehearing. I am so close to cracking and saying, 'fine, you win; I can't take on a corporation; I am too weak."
I met my solicitor and barrister, for the first time, in the foyer on Thursday morning. I was just musing to myself, that I should have had a Guardian under one arm and a red carnation, when I remembered that I was in a bright purple wheelchair! Not many of those to the pound. (bad analogy; the pound's nigh on extinct and I'm a dinosaur.)
Thursday was such a rubbish day: my witness and cross examination, that it trashed Pingu, my friend, who had agreed to come along to turn the pages of the file for me. Pingu is a crazy, pot-throwing, paint-hurling, creative type, unused to office or court-type environments and the full-on day was too much for her. We left home at 7.30am and got back at 6.40pm. Her partner phoned me at 8.30pm to say, "You've killed Pingu." I tried to get a replacement page-turner but gave up at 10.30pm and went to bed.
Fortunately, sleeping is one of the things that I do best.
After the calamity that was Friday, I found myself trying not to cry. I was an hour from my pick-up time, miles from home, sans Pingu; trying to get a coffee; not cry; negotiate the 'not-quite-thought-it-through' dropped curbs and not cry. A woman saw me struggling and stopped wiping the tables at Starbucks, crossed the road, helped me to a table, brought me a coffee and spoke so pleasantly, with no ulterior motive or trickery, that I almost experienced an emotion. (refer to para 3 subsection ii in your bundle; headed "When I was dumped"…"you wouldn't know a real emotion, if it slapped you in the face.")
I got home to a big buff envelope, embossed with the company logo and strap-line. Slapped across the bottom of the near-side, was a fluorescent sticker, championing,"A Fair Deal for a Flexible Workforce." It was an HR document, detailing a new TUPE proposal for all green book employees. I didn't have the energy to laugh. The contents are irrelevant but the sound-byte is priceless.
I spent the majority of the evening on the phone with, 'She who shall not…' (Oh, yes; that's all still very much unresolved. I'm an emotional cripple and should learn to take my own advice!) Talking's great but I just wanted a hug.
My brother came over and helped me to consume vast quantities of alcohol, in a bitter/cider/curry combo. Mmm, my breath is ripe this morning.
I dreamed I was in a dock, facing the Queen of Hearts, who was shrieking, "Collar that Dormouse, behead that Dormouse turn that Dormouse out of court. Suppress him! Pinch him! Off with his whiskers! ..." It's a quote from an Alice in Wonderland play that I was in, when I was 12!
I'm dreading Monday.
Currently listening:
Freeborn John: The Story of John Lilburne-The Leader of the Levellers
By Rev Hammer

Best wishes KB.

Giggin' in the Riggin'

Saturday, March 15, 2008 
I get knackered and lethargic more quickly, these days. 


JFM&J, how old does that sound? See how I’m taking up swearing; after a life of expletive abstinence, it’s quite difficult.


I’ve got a mate, G, visiting for Easter. I’m quite excited about that; we go back, donkeys’ years.


 I have found that progressively, I can’t play or sing my stuff. I had kind of stopped writing or even really listening to live music. The other week, I wrote a peculiarly, out of character song; a naked and vulnerable unashamed love song all about, ’She-Who-Shall-Not-Be-Named,’. I haven’t seen or been scene  much  of late so it’s about 2 years in the making. Lol. Writing it was quite cathartic and I was able to revisit some of the emotions and experiences of the time! Ho-hum, moving swiftly .. a while, reworking and twiddling, I became terribly lonely and miserable and sent a cry to my mate C. (Cheers, honey. x) We got totally dispatched and she persuaded me to have a go at my new song. H came round and started to play it. It was a bit weird, trying to explain how to sing and play my own post-orgasmic experience to H; a good mate but not, that kind of mate! Today she popped in with a sheet-hot version of my song on disc. I’m stoked, choked and generally over-excited. Thanks to 2 beautiful, generous women who have re-kindled my passion for music; rocked me out of my lull and set me a challenge. You know who you are and I love you. If anyone can make it to  T' Borough Footie Club on March 22nd, I’m hoping to sing my song with one of the headlining artists. (All local, female musicians.) We’ll see how it goes. I’m really chuffed - have I already mentioned that?

Best wishes KB.