My anxious wait for my first yearly check ended this week. I was well prepared, having obtained a copy of my blood test results and posted them here for advice. I had my notebook and questions ready and my partner with me. Only I didn’t get to see the consultant. A nurse conducted the interview. She was pleasant and reassuring and it was a great relief to know that I’m OK and that they don’t want to see me again until next year. Despite the immense joy in that, I was disappointed not to see the consultant. I wanted answers to my questions, I wanted to gain a better understanding of my personal situation. I wanted medical opinion about the pace of progression etc. I wanted to start to build a relationship with the consultant. I was so anxious beforehand and somehow everything seemed trivialised. I came away with weird mixed emotions of relief, joy and a feeling of not being worth bothering with.
I’m just posting this because it might be useful for others here to know. I’m very much OK and very much grateful for still being in watch and wait.
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Thursday45
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From your wording I assume you are in UK and dealing with the NHS, so I am not certain my suggestion will be successful.
However,
I found with our USA doctors, I arrive at the appointment with all my questions organized, clearly worded and listed in order of importance, and then have 3 copies printed.
The first copy is given to the nurse at the initial gathering of "vitals", and many will type them in to the electronic record.
The second copy is given to the medical professional ( NP - Nurse Practitioner or PA - Physicians Assistant or the actual CLL Expert doctor).
And the 3rd copy is used to record answers, along with asking for permission to record the discussion on my cell phone.
This conveys that I am serious about wanting answers, and when the NP or PA is not able to answer one or more questions, the CLL Expert is summoned to provide answers.
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I am polite, respectful and firm that I want clear answers, and some times that answer is "We (or I) don't know". But I do get an answer. Preparation and assertiveness is key.
I think it's a superb idea. I did that for my son who is having medical problems and, in my opinion, his symptoms weren't being taken seriously enough, so we printed out questions and I went with him to next appointment. We handed the gp the sheet. Doc did not like this. Didn't say he didn't like but his attitude did. This bothered me. Some docs are prima donnas. Still trying to get a referral from him for pulmonary for son. I still think it's a superb idea, and reasonable to say you don't want to forget a question. And to Thursday 45, sorry for the disappointment. When we expect certain things, not pleasant when that expectation isn't met but hope you are doing SO well that you just need a nurse.
Yes, they must think nothing alarming is happening so I don’t need the consultant. They don’t follow through their own advice. When I was diagnosed I was told I was borderline anaemic and prescribed iron tablets. I had lots of problems with taking them and my GP took me off them. No one has checked since or offered me any advice. That’s why I’m seeing a private nutritionalist. I think you just have to look after yourself as really they are not interested.
I do like the idea of printed questions and I will try it.
I recorded my appointments with my specialist on my phone with Voice Memos. It's an app that's very easy to use and saves the recordings. That way if I can't remember something she said I can listen back.
I only get one appointment for a yearly check. I won’t be able to see anyone again until next August. I thought it would be with the consultant and was disappointed to see only the clinical nurse. I did attempt my questions but her answers were not very helpful. For example when I tried to discuss my low iron result she suggested I drink orange juice with meals. I do know that vitamin C helps iron absorption but I’ve been trying hard for a year to improve my iron result. I’m now seeing a private nutritionalist so hopefully things will start to improve. I wanted to understand why the parameters for the TIBC result are different from the one’s which I have seen widely used on the net but she could only offer that different labs use different highs. A different high parameter might mean my result was OK so it is all a bit confusing. I asked about the high LDH result which I had but her answer was just that it could be due to lots of reasons and not to be concerned about it.
I realise that I will have to take more control in the future and have a more organised approach. I thought I was well prepared with notes and questions but I didn’t have copies of my questions.
I got better answers here than at the hospital.
I thought it might be helpful to other UK members to know what to expect at a yearly check.
I have seen my specialist once and interns twice. Since 2020 my six monthly appointments have been over the phone with the (very pleasant and informed) nurse. I don’t receive my blood test results so as a result my questions are limited!
While I am happy with this (celebrating being boring) it must be very frustrating for you not having your questions answered. It sounds as though seeing a nutritionist is an excellent idea.
On my first visit (2019) I was given a booklet that answered many questions (I was diagnosed in 2016 in France, happily the consultant spoke excellent English as my French just about reached passable).
Maybe you could try e-mailing your nurse with your other (non nutritionist!) questions and, with luck, the questions will be passed on and answered - though it might be “we don’t know” is still the answer...
Then, of course, there is the mine of information that is this site!
Here’s hoping you get your questions answered one way or the other. I just embrace being too boring (cll wise) for the top bod!
I can understand your disappointment. Not sure what part of the UK you’re in but it’s different in other places. I am in the south and go to the Royal Marsden. I have been on W&W for 6 years and always see the same consultant, who couldn’t be more supportive. I was going annually but now attend every 6 months as I may be approaching treatment time. Perhaps try calling the specialist nurse, explain your concerns and ask if it’s possible to see the consultant? Good luck.
It is a bit of a lottery, isn’t it? You probably do better down south. I’m in the Lake District. It was the specialist nurse who saw me and I do have a contact number for her but I have tried ringing before and don’t really get any useful help.
Yes, one yearly appointment doesn’t seem too much to ask. At least I know what to expect now and I won’t be so anxious next time. When I told the nurse that I had been anxious about the appointment she seemed really surprised. I don’t think they have any idea of the emotional impact this disease has. I was also surprised today when a family member showed me his blood test results from a private healthcare check. His iron levels were recorded as much lower than mine with no targeted action. Maybe I’m just worrying unnecessarily anyway.
I think previous generations of nurses were very caring and to be fair, the nurse I saw was kind and reassuring - but I had hoped for a supportive and informative appointment with a knowledgeable doctor.
hi. I felt the same at my first appointments. I had worked in NHS for 42 years so understand how fed up you feel that no one shows you any courtesy.
My first visit, was with no blood tests at the time of appt because after four hrs of waiting someone directed me to the ticket machine! Consultant didn’t want to wait for results.
It was going to last 6 minutes until I started crying! Which I don’t normally do!
The conversation was something like “yes 99% sure it’s CLL. You will know all about that. It’s a good cancer. You will probably not ever need treatment. We will see you next week with your results”.
So, having quite severe fatigue I looked for the positive. “Oh well - at least I know why I’m tired! “
Her answer “your fatigue is not cll!”. No explanation lol! Was devastating.
At the point of needing treatment two years later I transferred to a big oncology hospital! Never looked back!
I think it’s difficult being a patient when we’ve been in other end for so many years. Without realising we look at the way the clinic is run, know how long an appointment is, and expect people to treat us as we would treat them. I have since met the most wonderful consultant, but my care is the wonderful specialist nurses on the day unit who I miss so much now I am just on tablets!
You would think so but it is not so easy. It seems like doctors know very little about nutrition. I have now found a private nutritionalist who has provided me with meal plans which take into account my food allergies. Hopefully, I will make better progress now that I have some professional help. Lots of foods hinder the absorption of iron but I’m learning!
I live in Scotland and haven’t seen any of the haematology staff since I was in hospital for 4 weeks in 2020. I started on Ibrutinib in July 2020 at first I received telephone consultations every 4 weeks then it it was 8 weeks now 12 weeks and instead of consultant phoning me it is registrar.
Just phone calls, even when you are having treatments! When I read posts here from other countries it appears that they have much better health systems.
At least I know now not to expect very much interest or help whilst on watch and wait.
I am in the us and see the oncologist every 6 months with monthly blood tests that I get to see the results of myself. I guess I am lucky that way but still have a million questions....
I'm sorry that you had that experience. I've had very similar experiences to yours. However, 1x year seems pretty excessive...I go every 3 months.. but I guess it might have to do with your stage? Speaking of that...I've never had a doctor tell me what stage my cancer is in. From what I have read, I think I'm in Rai Stage 3 possibly... maybe 2.
Anyway... don't settle on a provider/Dr/Consultant making you feel dismissed. Get one that will listen and actually hear you. Good luck.
I think our NHS Healthcare is very much a lottery depending on where we are in the UK. Aspects of it are brilliant and we are grateful to have it free at source but often we have poor services if we are not near a major teaching hospital.
It would be amazing for it to be free but in the US...I think it would leave so many people in scary situations of what you say might be the case in the UK happened here. Our country is so large and some of it so very rural... that it would be difficult for alot of folks who weren't close to the teaching hospitals. I'm 2 hrs from NYC and I literally have a teaching hospital 25 min from me... but alot of people wouldn't be so lucky.
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