CM
Sounds like it’s all organised perfectly, can’t wait!
Yey!! can’t wait! Cheryl your Tapas sounds soooo yummmm 
Pxxx
… later… so yummy I had to have some for lunch!
I’ve had PositiveThinking and BringItOn here all day. Huge long walk and sense of humour failure when OH suggested that putting the Vac round for 20 mins is ‘housework done’. He asked if a quick flick would do - that’s when I found the StropImp in the under stairs cupboard… (I was getting shy of opening the front door the house was such a mess…). I’m back in the calm tent now.
Hope everyone is so well they’ve been off enjoying themselves today…
P xxx
Hi All,
Have had a lovely day, being really NORMAL! Sorting stuff out (we have just moved house- yeah, I know, timing not great!) playing with kids, teenagers birthday party, and meal out with husband. Fab.
Steroids in morning though, ho hum, back to it …
Tracey xx
Peachez, I’m glad I know where the Strop Imp came from. He’s been at my place for a while, accompanied by the LetterWriting Goblin with his quill. After speaking to the helpline earlier today about the Results Monster going absent, I have written a clear and assertive letter to the surgeon which I will deliver by hand tomorrow (Sun) to the hospital main desk and in person to the BCN on Monday. My bestest buddy at the moment is the Tantrum Witch and I reckon she’s nicked some steroids that one of you pinkies left lying around, because she’s showing NO sign of slowing down! I do feel better for writing the letter though, so TW might grab a moment or two’s shut-eye at some stage, during which time I’ll probably shove some Valium down her neck, just to get her under control.
Good for you, Choccie. I hope your letters do more than just relieve your feelings, I hope they lead to an improvement in the way patients are dealt with at your centre.
Cheryl
Someone very helpfully posted a link to the NICE guidelines in another thread and there’s a cracking line in there that I’ve quoted:
"The way these results has been handled falls far short of the NICE guidelines which state that “Good communication between healthcare professionals and patients is essential. It should be supported by evidence-based written information tailored to the patient’s needs.” "
And then I go on to tell her EXACTLY what my needs are - i.e. to get the flipping results NOW!!! Happy to wait for the treatment plan, but things as black and white as “no clear margins” would at least help me to get one foot out of the Limbo swamp and make decisions based on the fact that I’d be out of action for a couple of days if I have to have another surgery.
BringItOn is really in her element at the moment, isn’t she!
Good for you Choccie. I know from my first biopsy that the results weren’t back when I was meant to pick them up and they rang the lab and got them verbally - and checked 3 times that it was right because they were surprised it was a positive diagnosis. Can’t understand why they didn’t just ring and chase them. I can almost understand a lab - which just processes this type of results day after day - not having any particular urgency. It isn’t acceptable when it’s people’s treatment and futures they are messing with, but I can see it’s just numbers/tissue not people to them.
Really can’t understand how the people you have appointments with haven’t pushed on your behalf to get the results as promised when they know how much you need to know the outcome to plan treatment and move your life on. It’s well below NICE guidelines and glad Bringiton and Getyourbacksideingear are working on your behalf to get results (clear margins please!!) and treatment plan for you. Least you know the nodes are clear, that must be such a relief xx
Well Done CM. Keep TW sedated, but don’t knock her out completely! P xxx
MG, the thing is they’ve GOT the results, they’re just not giving them to ME!
AARRGGHH!! Someone’s untied the tantrum witch and CM’s about to flip again! Quick, another bit of rope please!
Tell you what, have this glass of wine, and here’s a plate for your other hand, and we’ll just put the sound system on top of the monsters and turn it up loud so you can’t hear them.
Been away for couple of days and will prob. take me a week to catch up, but just had to say…
CM??? Bulldog Bash!!! Haven’t been for about ten years, but what a blast. Never quite got up the courage to take bike down the strip… but then would have had to hold off on the beer drinking long enough to do so, so was never going to happen…<grin>. Hmm, maybe that’s something to put back on my ‘to do’ list… along with the Rock and Blues… now THAT is a stonkin weekend too…</grin>
Sophie xxxx
Trip, didn’t you notice the drag strip just over to the left of the woods?
I’ve done 3 or 4 Bashes but not for a couple of years, and never bothered going down the strip, just sat on the stalls and watched, beer in paw. Getting childcare sorted out was always the biggest problem so I didn’t get to do rallies unless I could bring the kids, so we did a couple of BugJams as well. Also did a bike trip to the south of France a couple of years ago with OH and one of his mates and it was completely fantastic - them on their fatboys and me on my little XV535, only having a rough idea of where we were heading and not a TomTom in sight. I was navigating and I have NO sense of direction so the fact that we usually ended up where we had been aiming for was a massive surprise. Weather was EXTREMELY hot so we hardly needed the sleeping bags at all, and only had to used our waterproofs once in eight days. Oh, what fun, I MUST do something similar again, though perhaps in OH’s camper van taking the dog. At least that has a proper bed and a fridge to keep the beers cool!
For anyone who hasn’t ridden a motorbike, you’ll find there are a range of sizes parked near the drag strip - some of them even have stabilisers for the very nervous. Also a range of camper vans for those who want a little more luxury or a change from the lovely yurts. I’ve found that yurts don’t travel down the drag strip as well as a bike or a camper van.
Cm,
If they have them but won’t release them then I guess good or bad they want to be really really sure that what they are telling you is right. It doesn’t make waiting any better but I it seems good that they won’t tell you something then contradict it a few days later.
Doesn’t make the waiting any better. I keep sorting my papers and stuff Pre surgery like something terrible is goin to happen. Fingers crossed it doesn’t but I can’t stop myself from playing through worst case. I think it is just the uncertainty…
This is the week for both of us. This time next week we’ll both have a better idea and you’ll hopefully be out celebrating and looking forward xx
No, sorry MG, I believe they’re indulging in an arse-covering exercise because the person last week thought she wouldn’t need chemo but it turned out she did.
In the immediate term, the chemo is not the thing that’s bothering me, it’s whether or not the margins were clear so if not I would need further surgery. Obviously I’m bothered about what other treatments I’m going to need, but that’s one piece of information that I could really do with before Wednesday.
Ho hum, let’s see whether the letter will have any effect.
…am I cynical, or is some of this to do with NHS targets and box ticking (that’s before we go on to The Big Society, but I won’t stray down that feeble footpath).
But, in the centre of most dark woods, you come to a point underneath a tall, tall tree and look up and see dappled sunshine, so trample on thru’ the autumn leaves, Barbara
Barbara, I’d be happy to trample through the trees if I could only get out of this darn swamp!!!
I’ll send you wind-up torch and virtual wellies with wings! Wine and choccie if they help! Just supped last glass of VERY expensive whisky we were given at Xmas - now back to being peasants. Barbara
Hi All,
Been living the hi-life, in preparation for today’s session of Tax and herceptin. Don’t know whether my body is just getting used to the steroids, but had 3 glasses of wine last night, and a pretty good night’s sleep. Loads of water, so had to get up several times though!
CM- in case I miss next few days, hope you get some answers in next few days. Maybe your letter will prompt a few phone calls? It is horrible when you feel the professionals around you do not have you as a top priority. I’m not surprised the monsters are out. MG, gather you are waiting too? Good luck.
Everyone else seems to be getting over vile mouth probs and sickness. Hopefully a more comfortable week in the woods. I shall join you in the party tent, when I can lift my head from the bed- in the mean time, I am reserving the memory foam matttress, down-filled duvet and several comfy pillows- next to the water cooler. Could also do with the dontdespairthisisnearlythelastone fairy to cast her gentle spells over me…
Traceyxx
Good Luck Tracy - hope you reach the next base camp without too much trouble.
CM - I hope the letter gets the response you need and deserve! It’s so frustrating being part of the ‘system’ and not being able to take control of something - particularly this something. Hold on in there, it will be sorted but it shouldn’t have happened in the first place.
x
OOOh er… not sure what happened last night; bear in mind I’m 52 and had the works removed 2 years ago…
had 1st glass of wine, sipped, only the one glass,(red of course) since FEC1 12 days ago. Woke in the night 3 times soaked to the skin and cold!
Frightened I’ve done something wrong now! EeeK!!! anyone else?? Or was I not supposed to drink - thought it was okay in moderation?
Pxxx