Surreal week …
Thursday 4th December
Research Meet at Camb.
My role to assist Bethan tweet, badges etc.
Karl absent so I took his place on a woolly description of chromebook roll out at Biddenham.
Monday 8th. Co hosted IT forum for all curriculum leads. Good turn out. Learnt how ( not ) to set up urns..Acorn antiques springs to mind!
Tuesday 9th
Bedford fellowship soup and research. Well scripted format led by Lisa. great table.
Action: we will resist ‘GERM’ warfare and look for antibodies not antibiotics to build our evidence base and align with medics.
Wednesday 10th…surreal
Parliamentary Dinner at House of Commons.
drinks then excellent meal. Discussion well chaired by pb political consulting.
Neil Carmichael MP
Jim Shannon MP
Baroness Masham of Ilton
Angela Billington – NHS England
Sarah Elliott – NHS England
Jacqueline Emkes
Tara Wilson – patient advocate
Philippa Aslet – British Association of Urology Nurses
Melissa Davies – Consultant Urologist at Salisbury
Nikesh Thiruchelvam – Consultant Urologist at Addenbrookes
Fiona Sexton – British Association of Urology Nurses
Robert Dixon – Chief Executive of Bladder and Bowel Foundation
Started my story by talking about BC and AC …Life before Catheters and Life after Catheters.
I’m honoured to be here tonight. And grateful for the opportunity to raise awareness about a subject that has certainly changed my life.
BC AC
no wish to cause offence. But for me it’s before catheters after catheters
BC I was just like anyone else. Taking being continent for granted. full time secondary school teacher mother of 4 wife daughter sister etc ….about to taking up new senior leadership never had a day off. Odd headache!
Fate dealt its hand. Now I manage my continence and numerous UTIs that go hand in hand with my condition mostly well. Life isn’t simple. Even Short trips have to be meticulously planned.
2009 disastrous hysterectomy ended up with no bladder emptying function lost a kidney and major spinal surgery.
Various times of in dwelling catheters and nephrectomy so many tubes. Easy to empty at BBQ! In hospital so much reckon got the ‘ frequent flyer’ awards … Indwelling catheters ancient pre war (?) device. Introduces likelihood of infection and prehistoric bit of hosepipe in its horribleness.
Depressing urodynamics proved what I already knew.
Sunglasses tears. Handbag of lofric and discrete regular plain parcels delivered to my door. Thank you to continence fund.
No idea how that works but it does.
So began life AC … HATE USING CATHETERS in school in planes trains. Disposal bags like my dog bags. Antibacterial wipes size of stamp. Sainsburys Tesco’s … ‘ baby ‘ wipes or toddler wipes.
Tena jokes. But actually noticed recently more ads for pads discrete oops moments.
2013 Mr Medtronic plus two urological surgeons fitted SNS … Cynical how on earth could this sort of tens machine in my bum make my bladder work. Unbelievably it did — mostly. Still catheters first last thing. Still have those oops moments. But way way better than the misery times of earlier. No catheters in the day.
No one aware talks.
Unfortunate to nurse my mother thru cancer this year. Everywhere fundraising no embarrassment about Breast cancers etc the whole thing deserves that but the comparisons stark. Her worst fear was that she’d have catheter not that she’s lost a breast. I think probably a lot affected. Silent and not just poor old folk. thank you etc. ‘
Social services NHS. Not changed continence 40 yrs
Nothing from NHS. BBF is a charity.
40000 involved
Tara marvelous patient rep. Story ofpads pads and more pads. Funny and delightfully direct! Lead into her career…funerals! Main points she made:
Humiliating
Survey
Smell
Paranoid about odour
Stigma
Pads
Then onto Thursday 11th Harrow songs..Churchill would be proud. Another world away from Biddenham and Bedford..
Friday 12th SUS maths department dinner for RP. Absolutely wonderful reminisce about old times. Indeed when they knew me I was fully functioning, two kidney energetic full time teacher. Argh.
Saturday 13th AC BC again?
Research Ed conference SUPER Cambridge schools presentation. My bit was After Cambridge and Before Cambridge. Absolutely petrified I would say catheter!
Used my toptrumps idea. ICAEW card how proud of that am I? Then no teacher card. Teacher with little t Profession no college etc. Used Searcy’s to top trump St Pancras Champagne Bar!
Sunday 14th sleep all day!
Daily Stent. I cannot cure you but I can make you laugh (citation Jerome) 