I canNOT believe it. Opened post yesterday, Saturday 12th, to find my long-awaited appointment with radiology to remove this bl@@dy IP port and tube from my tum. For Friday 11th at 11.
So now I am DNA and furious to boot. God knows how long it will take to get another. Who relies on letters in this day and age????
Grrrrrrrr
Love Sue xxx
Unbelievable!! I'm sure you feel like strangling someone. Find a few paper bags, blow them up and punch them or take it out on some other inanimate (and worthless!) object. And then treat yourself to something marvellous today.
Love and hugs
Linda xxx
Hi Sue,
Blame the admin, they have a lot to answer for in our hospitals, sending you love and a few smilies ooh yes and the sun is shining to boot...x G x 
Dear Sue ..
You really need to kick someones back sides over this one ...Just not on at all ....
Think I would go and sit my self down in radiology and not move till they take it out !
Keep pushing ..I know one shouldn't have to but we do ......
Take care xxx
Love Jan xxxx
Hi Sue
Doesn't it make you mad! They go on about how much money is wasted on missed appointments, then don't bother to let you know about them in plenty of time! Grrrr! Someone I used to work with used to go into the warehouse and kick an empty box around until she felt better! I find doing "Mutley" impressions, you know, muttering nonsense sounds, works wonders....the more cheesed off I feel, the longer the muttering. It's better than swearing any day!
Try to do something fun today, then phone them up tomorrow and refuse to go away until you have a new, and satisfactory appointment!
Good luck
Chris
Hi Sue, how awful! I would be on the phone and raising hell on Monday morning. Kick ass girl! 
All the best
Love Wendy xx
Thanks girls - I indeed WILL be raising this WITH the relevant people FIRST thing in the morning..., don't know whether its just because I'm acutely aware of it, but this thing has been hurting all weekend! I want it GONE!
After letters not arriving and appointment letters arriving late, I have insisted that they ring me, I don't want anymore missed app. So far it has worked and I proved the point when letter to see surgeon arrived day after app. Luckily I'd had the phone call days before.xx Hope you had a result
Hello Sue, I had a problem just like yours. Mine was rubbing under my rib cage,moving all the time. I think when they placed mine I had a little more weight. Made appt for surgery, Dr had emergency in family, they made me another appt, but was 2 more wks hmmmmm,wait again. Just relax and know it will be all behind you~~~peace~~~~
Dear Sue
I hope you can get an appointment sorted out very soon to remove the port and tube. It really is unacceptably inefficient to send a letter with such a short timescale. It's incredibly inefficient that the National Health don't have on their database how you would like communication to flow. For my part I'd favour email every time.
The NHS really need a wake-up call. I've just got a letter too stating the date and time of my scan - no discussion - as though we haven't got anything else in our lives to do. I've had to cancel an appointment in the medical school and let people down there so they're really robbing Peter to pay Paul. It makes me wonder how much of the funding is wasted on the weight of bureaucracy and muddle-headedness.
Equally my oncologist INSISTS on giving me a bit of card to put my appointments on which is easily lost. How archaic is that. Can't they send an appointment to my I-Phone then it would synchronise with my I-Pad and Mac Book air and will be in all the diaries I use. I'd show them how if they'd only ask!!!!
I'm sharing a GGGGGrrrrrr with you. The unfortunate thing is that if you ring up the hospital and rail at someone it's probably the last person who is responsible for this major cock-up and yet they take all the flack.
Hope you get it rearranged very soon. Hope we get the NHS sorted out very soon. Hope you get that new Chemotherapy Day Unit very soon. aaah wishful thinking!!!
love Annie
Hi Annie
I work in the NHS and the rules are horrendous for contacting pts. Its all to do with information governance. We aren't allowed to e mail as it isn't secure, can't leave messages on answer machines( it might be a wrong no) and at one point we had to seal everything in 2 envelopes!
I completely understand peoples frustration with the system - I get it too, and over the Xmas period everything gets messed up due to the abnormal break( yes we know it happens every year, but it still takes us by surprise) and don't forget we have to give a reason why anything has to be sent via post at anything other than snails post.
Not sure why I am sticking up for a system that causes so much frustration - but it does its best, and its the only thing we have.
Yes we can do better but I think with all the NHS bashing we are currently taking, and the permanent 'reconfiguring' ( staff cuts) we all get protective over it.
oh dear, just realised I sound like a trade union official- mind you I used to be, never leaves you I suppose!
Love
Sue
X
Hi Annie
I work in the NHS and the rules are horrendous for contacting pts. Its all to do with information governance. We aren't allowed to e mail as it isn't secure, can't leave messages on answer machines( it might be a wrong no) and at one point we had to seal everything in 2 envelopes!
I completely understand peoples frustration with the system - I get it too, and over the Xmas period everything gets messed up due to the abnormal break( yes we know it happens every year, but it still takes us by surprise) and don't forget we have to give a reason why anything has to be sent via post at anything other than snails post.
Not sure why I am sticking up for a system that causes so much frustration - but it does its best, and its the only thing we have.
Yes we can do better but I think with all the NHS bashing we are currently taking, and the permanent 'reconfiguring' ( staff cuts) we all get protective over it.
oh dear, just realised I sound like a trade union official- mind you I used to be, never leaves you I suppose!
Love
Sue
X
Dear Sue
It's right to stick up for your workplace and I applaud you for doing so. I'm a union rep too - but my role is a caseworker so I'm usually seeing things from the perspective of individual employees who are upset, frightened, angry and need help from the union and I have to see both sides to try and mediate.
But it is nonsense for the NHS to tell anyone that email isn't secure. They could work with their local university IT team to develop a secure system. Many other public organisations use the HE sector to bring systems up-to-date. If the patient opts for email contact then the NHS should sort out confidentiality their end and it's then the patient's responsibility to ensure their email inbox is secure.
I'm afraid the NHS is just making an excuse but to be fair it's such a massive organisation that it would cost a fortune in consultants' fees to set up a secure email service and hardware investment. I guess they have to weigh up the cost of the investment vs the cost-savings in terms of staff time, postage, missed appointments, etc. If it were all done using IT they could also send out automatic text messages the day before reminding people of their appointment and this would cut down on the cost of missed appointments.
I don't think anyone is being critical of the NHS. It's just critically under-funded.The people on the ground in the NHS are horrendously stressed and overworked. It makes me weep to see the conditions my oncologist operates in. She doesn't even have a PC in the consulting room so has to share one PC with several other consultants to look up my notes and memorise them. My GP, by contrast, has a networked PC on his desk and has access to all my notes from his own surgery and via the hospital portal.
I'm not sure what the solution is but I do feel the way forward might be for the Government to take their head out of the sand as far as the NHS is concerned. The health service and education are surely the bedrock of our civilised society.
All told Sue, I have the utmost respect for anyone who works in the NHS. You're saints!
xxxx love Annie
My local hospital has an automatic reminder system that calls patients one week before their appointment and asks whether or not the patient intends to attend. On at least one occasion, the reminder beat the snail mail letter telling me that I had an appointment. At least I did know about it because of the phone call. Better than the occasion some years ago when a letter telling me I had a bone scan arrived on the day of the appointment, after I had already left for work. Needless to say, I didn't find out about the appointment till it was past history!
Barbara
Hi Sue
That really does take the biscuit( I'm being polite here!). I do hope you can get this sorted straight away- it really was not your fault.
My doctor's surgery sends out reminders by text 24 hrs. before appointments and the local hospital has phone confirmation service in place for its appointments- it definitely does not rely on the post!
Grrrrr on your behalf!
Love
Anne xx
Oh my God. I have been there with my catheter removal. I had to have a check cystogram first. Only found out I'd DNA'd when my husband went to check when my appointment would be. (No letter ever arrived.)
I worked for the NHS for 28+ years and it is close to my heart but this sort of thing is very very very upsetting and as my GP practice always sends out reminder texts I can't see any reason why hospitals can't do the same. My hospital usually contacts me by phone if they are arranging an outpatient appointment that's not part of the planned follow up. It does seem to be certain areas that still rely solely on post.
However, have to admit that the hospital I attend as had some savage staff cuts. Someone very close to me was made redundant and that means that if there's a computer fault a member of staff is going to have to wait longer before its sorted and might have difficulty looking up someone's phone number.
Hope you find the strength to scream and shout about this and that you get an early appointment.
Lots of sympathy and love
Mary xxx
Well I have not screamed but been pretty forceful... However it now apparently bounces back to my onc via her secretary who has to go through the requesting process yet again... Grrrr x2 how stupid. Am going to call her now and ask if she can bloody well walk round and talk to the radiologist.... Any bets on how successful that will be?!?
S
Xxx
Fingers crossed. Keep on making a nuisance of yourself until its sorted. I ended up with an infection which might have been avoided if the catheter had been removed in the time scale planned.
Lots of love and sympathy
Mary xx
I am requesting a port profolactically, so I am curious why you want it removed? Does it hurt? Does it bother you? I decided to keep my mini port in my arm, and glad I did as needed more chemo! Xx
I had a intraperitoneal port above my hip with a tube into my tum, for the PETROC trial - dont know if same thing you are talking of Gill! It is quite invasive and has been hovering between uncomfortable and painful for over 3 months. I have now finished the trial and am in remission, hooray - so want it gone!
Love
Sue xxx
Hi sue, I dread the insertion of ascites tube and had terrible experience when removed incorrectly .. I screamed the ward down worse than when I gave birth twice!! Family could hear me and my husband vomited with fear 
so I have requested a port! I was on the trial but was randomised for IV only so withdrew as I could get services locally.
Perhaps my port will only be a port with no long tube? It appeals that we an drain at home... Never got into remission
This NHS system is madness, in Northants the hospital rings with an automated service and it keeps trying until it gets you, they ring my home number and mobile, I have to answer a security question, they tell me who my appointment is with and when it is and I have to push 1 to accept or 2 to request a new appointment. They do this instead of letters here now as part of their commitment to paperless.
I understood this appointment system now bounces back because this circumnavigates a waiting list. Figure fiddling if you ask me.
LA xx
See my NHS trust has none of these things in place - at least some of yours are trying to enter the 21st century!!!
Well the good news is I managed to get the damn thing rebooked for Friday. I will be setting several alarm clocks to be SURE I get there...
Love
Sue xxx
Hurrah progress on the port removal, well done for fighting through the bureaucracy. I'm having a lazy day today having had chemo yesterday but feel well so methinks am using it as an excuse not to shift my butt tee hee
Hugs Amanda xx
I am in the INOVATe Program
CA125 still good (I think)
I am feeling \"normal\" today
Am I being irresponsible asking this question
