Hello all, I was told back at the end of January I had Chronic lymphocytic leukaemia (CLL), a massive shock I went for my follow appointment a few days ago a which the consultant seemed so dismissive, said it’s ok not bad news your lymphocytes level wernt to bad, I was left utterly confused I had to say but why do I feel so tired very very tired, not night sweats but sweats at all times and I’m long past menopause, he never examined me my lymph nodes in my neck swell and go down now and again……he said I was to have a scan to see if any of my organs had been effected and that is on Monday next 4th, I’m to have another blood test for fatigue etc and swollen glands even though he never discussed this, I know they are busy but I’m so confused do I have Chronic lymphocytic leukaemia (CLL) and on watch n wait or don’t I …. Any advice welcome…?
@Bettieboop it must be so confusing for you. but personally, I am not a medical person, perhaps you have the further tests done and when you go for the results be pleasantly assertive and say you are confused and have your fears and questions all written down and not leave the consultation until you get answers.
If you do not then you might ask for a 2nd opinion, or change hospitals, if that were possible, or if it were possible, pay for a 2nd opinion privately
Thank you, yes I’m considering va private 2nd opinion, I understand Drs are extremely busy and have overwhelming clinics to get through and there are patients that require more care than I do, but I need to have these answers for my own mental health, I’m driving myself crazy do I don’t I what ifs etc etc and I thought my text appointment would be the answer but it just left me with more questions but thank you.
Kay Wilson
Hi @Bettieboop all those thoughts and emotions whizzing around I find are so anxious making and exhausting.
Please do keep posting and be very kind to yourself
Hi again all, I’ve not been around for a little while partly because I’m not sure if I can be on here, ohhh dear such a long winded twisted story but I was told I had low LLC……. Raised white blood cells… firstly the letter the Hospital Dr sent out after my first visit stated that I didn’t have swollen glands and all obs seems normal well that’s pretty amazing as she never moved out of her chair let alone examine me. Secondly I saw a Dr at the cancer center who said it’s good news alls ok …??? To be honest I was yet again gob smacked, he also never made any examination and if I hadn’t of said well why have I lost almost 10kg in weight at which point he gave me forms for more bloods for fatigue. I then was rushed out and received a letter stating that he was pleased to see me and discuss my infection and cough…!!! None of which I’ve had. I’m so very upset and angry and confused…., I don’t know who these Drs were referring to but both were making statements clearly that are NOT about me …… I’m due to have a follow up telephone consult on the 11th April, do I have LLC or don’t I why are my white cells raised and who the heck are they discussing…… I’ve cried and worried and don’t know what to do for the best ….??? Any advise welcome 
x
Oh @Bettieboop you are certainly very welcome to be part of our forum family.
I am not surprised that you have been crying and are worried.
Ever since I was diagnosed my emotions have been very close to the surface.
Personally I would say to write a list of everything that you feel is incorrectly stated about you.
Then all the questions you want to ask.
All the fears you have,
All the practicalities you have.
The options you wish to discuss for the way forward.
Perhaps be pleasantly assertive and don’t end the call till you are satisfied.
Perhaps if you are not satisfied then ask for a face to face appointment.
Please let us know how you get on and be very kind to yourself as the feelings you are having are very normal to me, you need some truth and clarity,
Ohhh thank you for that…… I don’t know where my heads at, yes I know I need to ask why these inaccurate things are being put in my notes…… lord knows how it makes me sound, my trouble is I’m a people pleaser and hate confrontation in anyway, but I’m going to have to ask this is driving me crazy, do I have sorry is it Chronic lymphocytic leukaemia (CLL) or not and if not what’s going on and why all this inaccurate info…. Thank you for listening to my Whinging on, I will try to do the right thing and get answers.
Many thanks
Kay Wilson
Hi @Bettieboop you were certainly not whinging.
As I said be pleasantly assertive.
You need to set the records straight and you are just being factual.
Just think that we are all there behind you, albeit virtually.
Be organised and go for it. xxxxx
Good evening
Well what a day, I had a telephone consultation booked for 3.50pm, but heard nothing that is until 6pm better late than never I guess, I did as you suggested and was pleasantly assertive, I must admit my confidence is somewhat dented, I listened to what the Dr had to say and yet again I had to correct him on a couple of things……regarding my medical history that he would have in front of him, after I had listened and corrected I stated I’d like you to address a few inaccuracies in the past letters I had received from the Haematology dept, basically he said he has to see 10/12 patients in clinic and can’t always be expected to remember every item discussed or in my case not discussed.
He had no real excuse other than he’s busy he also read some results out re scan I had, once again skim reading and making light of it all, I appreciate there may not be any issues but one point he said there showed some slight his word collapse of the lower part of one of my lungs and an issue in my lower abdomen but when withe just said it’s all fine nothing to worry about, I still have increased white cells although they do fluctuate, I’m now down to 73kg from 84.7kg, my glands in my neck swell and the fatigue is awful, but according to him now it’s all ok so now I’m even more confused and worried, I feel I’ve just annoyed him asking him to put the info correct in the next letter……. And suggestions on what to do …?
Thank you
Kay Wilson
Hi @Bettieboop i thibk that you did brilliantly, perhaps await the letter from haematology and if you are not satisfied you might consider going to the hospitals PALS Patient Advice and Liason Service.
Or you might talk to your GP about your symptoms and ask to be referred to another to haematology dept or haematologist.
Please do let us know how you get on and really look after yourelf
Dear @Bettieboop
I have been reading your posts and I am so sorry to hear that you have received less than adequate consultations regarding your diagnosis of Chronic lymphocytic leukaemia (CLL). You have done the right thing in correcting any inaccuracies and please do not worry about doing this, I am sure you have not annoyed the Doctor and it is your right to relay the information to them.
May I ask whether you have been given any contact details for a Clinical Nurse Specialist or Key worker? Usually this would be a point of contact where you can escalate any symptoms and talk through concerns regarding your diagnosis. Thus allowing you communicate to someone who is an expert, who works closely with the consultant and who is able to support you. If you have not been given someone to call then you can ask for this when you next see the Consultant or if you let me know where you are being treated I can try and find some contact details.
You mention that you white blood cells fluctuate and that is normal. I do feel that addressing your fatigue is important, we do have some information on Blood cancer and fatigue | Blood Cancer UK that may be helpful and I would raise it again next time you have an appointment.
If you would like to talk this through please do call us as we would be happy to help: Blood cancer information and support by phone and email | Blood Cancer UK
Take good care
Gemma
Hi there
You will need to email the Data Protection Officer/Caldicott Guardian for your hospital to get factual inaccuracies changed on medical letters.
Your correction and deletion of data rights
You have the right to request that your information is amended or erased in certain circumstances. Mistakes can be rectified however where your opinion differs from that of your health care professional, we will record your view as an addendum to your record. Your opinion will be shared whenever that part of your record is shared. Your record can only be amended where there is a factual inaccuracy.