I have just been diagnosed with CLL, awaiting appointment to see Haematology Consultant.
What do I need to ask ?
I have looked on line; symptoms, treatment etc but I'm in a fog at present +my mind is not thinking clearly.
Any help with this will be very much appreciated
Hi izzy-jean and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you have been diagnosed with CLL
Any cancer diagnosis brings a lot of stress and confusion but talking with people who are on the same journey can help a lot and will reduce the whirlwind wind that is rushing in your head.
I was diagnosed with a rare type of Lymphoma on 1999 so do understand the issues you are facing.
You may like to follow these links to our CLL, SLL, HCL and our general Leukaemia forums where you will connect with people who understand the journey you are on. You can ask the folks questions about tests, treatments and what to expect during the months ahead.
The CLL forum is rather slow but do post on both forums.
Follow the links above and join the groups by hitting the ‘Join the Group’ tab just under the main group name. At this point select how you want to receive email notifications when someone answers your posts.
You can either go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post. You can also have a look through the various threads by going into the ‘Discussions’ section.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
So to your initial question.
So first I recommend that you prepare for your next appointment with your team and to do this I would always recommend you get a note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ and you go through each question one by one, making sure you write down all the answers you get.
If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would ALWAYS recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.
The note book should have questions like:
I will keep an eye open for you on the forums.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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