APPOINTMENTS. We’ve written to UK specialist ... - CLL Support
APPOINTMENTS. We’ve written to UK specialist nurses & are emailing GP practices to inform about CLL support and literature. Feedback will assist this development. Tick the boxes that apply to you.
Myrddin,
Thank you for submitting our current poll. It will I hope raise awareness and provide ideas as well as useful feedback.
None repeat none of the above...!!!
One missing question, seems to me, is 'Were you given a named contact/nurse or told who your care team were on diagnosis?'
Certainly not for me. How about others?
thanks Mikey We can and will include this in future polls. The facility only accepts so much at a time. Perhaps you could submit a poll that concentrates on finding out what care and support people were given at diagnosis? It would be very useful.
One question I would be interested in is how widespread are Macmillan information centers and peoples experience with these too. Perhaps in another poll.
Please post any comments that the poll throws up or thoughts for the future.
Hello everyone. Up until now i have been on Watch and Wait but as my wbc has passed the magic no 15 i am to visit Haematology in february.
I have seen Macmillan information in my town twice in the past year and have dropped in for a chat with some very helpful staff and have come away with interesting lierature
None of the above apply - so nothing to tick!
That,s OK sparkler and kwenda that provides a lot of information
I am fortunate to have been one of Dr Anna Schuh's first patients, she has gone on to be be a leading figure in CLL research and has actually been guest speaker at CLLSA meetings. She is still my consultant and I see her on a regular basis, she is currently looking for another trial which may suit me. I have had two lots of chemo first five months of FC followed, two years later, by four months on FCR. I have also trialed the maintenance drug Lenalidomide which did not suit so I was removed after four months. It is SO important to have consultants/nurses you can talk to after diagnosis.
My diagnosis was without a nurse, no information, no contacts etc, but we had found out a lot before diagnosis. Having moved hospital have a nurse contact leaflets available. Even if you don't need to talk to your nurse - good to know ther eis one if needed. Have a dictaphone now as even with two people it can be difficult to remember everything that is said.
The polls are rather simplistic - would be more helpful if could answer yes/no/ n/a. Thanks to those who added comment saying no to all - very helpful
We must have been at the same meeting Myrddin? was it the last one in Oxford? My original diagnosis was given to me by local GP one Saturday morning!!!! at the time she did not even know it was CLL just a call to say I had leukaemia, she did justify it by saying she did not want me to hear by letter it may have be 'a shock' but hospital said they would NEVER have blurted it out like that would have just given me an appointment saying I had a blood problem so not the best original diagnosis.
Yes I was at the Oxford meeting - a good one and an excuse to have a night away from home a plus.
I found a letter from my GP after being away a few days saying he did not know what it was so arranged an appointment with a consultant. So that almost confirmed our own diagnosis from the various blood tests that had been done over previous 4 months. I did see a young doctor at the surgery for something else before seeing the consultant. Along the way the subject came up of my appointment and he asked what I thought t was - when I said Leukemia did not deny it but confirmed that could be the diagnosis. So the diagnosis was not a complete surprise. So my GP appeared to be following protocol.
I was in such a state of shock I may have not heard properly but when I asked "how long I had left" ? I was told by the doctor, "how long have I got I might be run down by a bus"
In his $x4 I dont think so, but I almost wish he had, then I could have interviewd him and said "how does it feel?"
That's the question I want to ask but never do (how long do I have left?) Do I take all my savings and do that trip round the world I am dreaming of, or do I save even more for when I am a long term burden on my family?
Diagnosed at the age of 63, I asked "Will I make it to 70"
"Well", was the reply, "You might. Why?"
@****!!$******!!!
"I have children aged 12 and 14"
"Well, you should have thought of that before you had them!"
@@@*****!!!!!$$!!!!
I had a somewhat similar discussion but with a rather different outcome.
Me - What is the prognosis?
Consultant - How old are you - 66?
Me - Yes
Consultant - Well don't worry something else will get you!
Hi Scruffy
I had a routine blood test, for a persistant sore throat.
The doctor came to my house.
Me - oh oh
Doc- would you like to sit down ?
- oh oh .... No
Doc- would you like to ask your son to leave ?
- oh oh .... No ... he's big enough to know what's what ..
Doc - Re your blood test ... you have leukaemia
- ( Thinks ..... bugger )
When I thought about it, I realised it could have been much worse ...
I was lucky not to hear the words " sorry, your son has leukaemia "
Unbelievable that a professional could be so unprofessional. I was diagnosed in my late 50's and just told I would probably live until a ripe old age without treatment and die of something entirely different. I have had two lots of treatment and may be due for another but I have made it to 73 so do not despair!
Did that make you threaders? Been reading up on bootneck lingo. .
Apart from my own notes, none of the items were applicable to my experiences - it seems that many GP's have little or no knowledge of CLL. I gave leaflets to my surgery but on my next vist none had been posted - says it all really!
I have had my greatest support from 'The Maggie Centre' in Edinburgh, which gives support, runs self help groups and short courses, offers individual councelling and financial advise or can just be used as a drop in centre for all cancer sufferers. If you have one near you I recommend you visit.
I have a named consultant who is still my consultant even though I have technically moved out of the area. I have a contact specialist nurse (MacMillan sp?). There are two and one is always at the unit. This is at the Royal Shrewsbury. The only complaint I have (and I am not alone) that parking is a nightmare. If your appointment is after 09:00 your best bet is probably to take the Park and Ride into the town center and then a bus back to the hospital!
I take a person with me to my appointments now. She is a qualified "Active Listener" from Cancer Support France, Lanquedoc. She speaks fluent French, although I have always managed until the last year or so. She takes notes which she types up for me after the consultation. This is a truly helpful association for English speakers of all nationalities living in France. I used to work with them, answering the helpline, and as an Active Listener until I needed help myself when my CLL started to get out of control again. If anyone living in France would like to know more, their website is cancersupport.info, and they have branches covering most of the country.
