Hi, newbie here. I was diagnosed with Chronic lymphocytic leukaemia (CLL) a couple of weeks ago over the phone and I haven’t got a clue what I should be doing, how I should be feeling, what happens next …
I had a Full Blood Count test back in March this year, the first for four years (they were pretty regular, annual before COVID) and then a retest later on in March. In May my GP called me and said I needed some more blood tests, these took place in July but there was no mention of Chronic lymphocytic leukaemia (CLL), just some questions about my general health over the last few months. Out of the blue a couple of weeks ago I got a call from the Haematology Dept. at the hospital that did the tests and I was told over the phone that I had Chronic lymphocytic leukaemia (CLL) and that it was incurable. This is on top of Type 2 Diabetes, Diabetic Retinopathy, Branch Vein Retinal Occlusion, Graves Disease, Thyrotoxicosis, Nuclear cataracts, 2 x Transient Ischaemic Attacks and Amaurosis Fugax brought on by the dodgy batch of the Astra Zeneca COVISHIELD Batch 4120Z002 Covid Vaccine (the one you weren’t allowed to travel after having had it), and two botched private health operations since 2019. So I’m not doing too well really and I’m only 54!
A day or two before I got the call to say I had Chronic lymphocytic leukaemia (CLL) my online GP notes on my NHS App started to go crazy with amendments and this has continued, there are now records of appointments that have never happened, medicines that I’ve never been prescribed, vaccinations that I haven’t had - the list goes on and on. Mid August a diagnosis of Lymphocytosis oddly appeared on my record out of the blue, backdated to 27 March which was after the second set of full blood count tests. I’d hardly had time to look up what Lymphocytosis that was already marked as “Ended 31 July” was before I got the Chronic lymphocytic leukaemia (CLL) diagnosis.
I’ve got a bit of a medical background as the Head of Health for a large pharmaceutical company that produces oncology medicine, and as the voluntary chairperson of a local Occupational Health Charity, but this doesn’t give me anywhere near enough access to information that I need to understand what’s happening.
Last week, following the advice in the email from “Abi At Blood Cancer UK” that I signed myself up for, I reported that I was feeling a bit “fluey” to my GP, the next thing I know I’m off to a different clinic at a different hospital being given broad spectrum antibiotics that could have interacted with the massive dose of Ferrous Fumarate I’ve been given the week before to boost my iron levels. It feels like it’s not just me that isn’t very clear on what is going on.
Is there any advice that anyone can point me in the direction of that might give me some clues? I live alone (apart from a big daft dog), don’t have much family that I can share this with and it feels like I’ve been hit by a freight train at the moment. I’ve no idea what’s going on.
Hi @Dave_Hazell I am not surprised that you are feeling shocked, overwhelmed and hit by a freight train with all that has happened to you.
You are now part of our forum family so never alone.
If you feel you want to get your medical records corrected then perhaps you would put your complaint in writing with your corrections to whoever made the incorrect notes.
Perhaps you might ask for an appointment with whoever you would like to see for clarification
If the matter is not resolved then you might be able to take it up with your GP surgery manager or if it is the hospital their PALS (Patient Advice and Liaison Service).
I am also under a lot of different specialisms at my hospital and I take it on me to remind each specialism of all my conditions, medications, allergies etc.
As Abi has already been in contact with you I will copy your post to her for you @Abi_BloodCancerUK .
Please do let us know how you get on and you and your big daft dog look after yourselves.
Thank you @Erica, I will keep in touch as things develop. Your taking the time to respond was very kind. Best regards.
Dear @Dave_Hazell,
Thank you for reaching out to us.
I am so sorry to hear about the terrible time you have been having. No wonder you are feeling like you have been hit by a freight train. It is very common to feel this way and we are here to help and support you. We understand what a difficult and stressful time it can be and it is important to look after yourself looking after yourself
Can I ask if you have received a letter informing you of your Chronic lymphocytic leukaemia (CLL) diagnosis? This will hopefully provide you with a bit more information and inform you of the plan and when you will be seen again. Ideally, you should also have been provided with a name of a contact person at the hospital normally called a cns (clinical nurse specialist). It might be worth reaching out to them and explain how you are feeling and they can provide you with further information.
I have enclosed some information that may be helpful for you to read Newly diagnosed CLL
If you have any questions, or just need someone to talk to, please do get back in touch. You can email us again here, or speak in confidence to a member of our Support Services Nurses team by calling our free Support Line on 0808 2080 888. We would be very happy to speak to you.
Best Wishes
Fiona Support Services Nurse
Hi Fiona, thank you for your reply.
Yes I have received a diagnosis letter, 5 weeks after the phone call. There are details of the assigned Principal Clinician and a Haematology Macmillan Nurse/Key Worker with a contact number for both. They have made an appointment to see me on 30 September. I have reached out to my Key Worker for some support as I have a patch of what appear to be Leukoplakia on my tongue and a pea-sized “gristly” lump in my jaw that have both been there for around a year, but I never thought that they could be cancerous until now. I have not had a dentist since the 1980’s so they are trying to help me find one who can check the suspected leukoplakia out.
Dear @Dave_Hazell,
I am very pleased to hear that you have been given contact details and have a follow up appointment. Its a shame that the letter took 5 weeks to reach you, that is a very long time to wait! Well done for making contact with your key worker.
Let us know how you get on with the dentist and at your follow up on 30th. We will be thinking of you.
Kind regards
Fiona (Support Services Nurse)
Wowsers Dave!! Getting your diagnosis over the phone like that is absolutely shocking!
Do you live in the middle of nowhere or something?? Just dreadful to do that to someone. You sure have had a rough ride so thank goodness that you have your daft dog! 
The best medicine EVER I reckon!! I’m afraid that all I can offer you is an ear to vent to. There really are some amazing people on here Dave and it’s a brilliant site not just for knowledge and info but for friendships and understanding. People on here really DO understand what you’re going through. Take care of yourself and your furry mate, I’m always here to listen. Sending much love and as much of my strength as I can spare at this moment Dave! Onwards and upwards! Very best wishes,Sally x
Hi,
Thanks again for all your kind words and thoughts. I saw an Oral Surgeon on Friday and I’ve been referred on a 2 Week Pathway for suspected Leukoplakia. I’ve got an appointment at one hospital on Sunday, then back at Haematology on Monday at another (this has been brought forward by two weeks) and then back to see the Oral Surgeon at the third hospital on Monday afternoon to get a plan together.
Wow @Dave_Hazell three hospitals is really confusing in such a short time, I think I might be at the wrong one on the wrong day.
Please do keep us updated when you have time.
Be very kind to yourself.
@Dave_Hazell
Hi Dave,
I have had to read your post times as it’s the most shocking medical experience I have read on the forum. Informing you over the phone utterly disgraceful. Especially bearing in mind the other health problems you have. I myself was surprised at the offhand way I was informed of my diagnosis but nowhere near your experience. Try and get it sorted. I myself looked back at my blood tests on.the the GP health record of the NHS app to find until 2022 there was no mention of a full blood count being taken, which I found a little odd. Anyway all the very best to you.
Unclejack
Hi, a bit of an update, I’m afraid things haven’t improved. 3 weeks ago I was referred to the Maxillofacial Unit for suspected leucoplakia as well as the Chronic lymphocytic leukaemia (CLL). This referral went okay and I had a biopsy on Wednesday just gone. The Haematology stuff is another matter though. As I think I previously mentioned, I was diagnosed with Lymphocytosis in March but not informed until July when I went back in for the blood tests that informed of the Chronic lymphocytic leukaemia (CLL). Since these blood tests in July I got the Chronic lymphocytic leukaemia (CLL) diagnosis over the phone last thing on a Friday night in early August, I’ve had X-Rays, Ultrasounds, more blood tests through August & September. I had an appointment to review all of these tests due tomorrow at the hospital. Bear in mind I haven’t seen anyone face to face since the blood tests in July and certainly not since the Chronic lymphocytic leukaemia (CLL) diagnosis. The Doctor who is named on my care plan left my GP Practice 7 years ago and clearly hasn’t been consulted.
Last week, when I couldn’t speak after the biopsy I was called to inform me that Monday’s face-to-face appointment was going to be done by phone call again instead. I wasn’t happy so another appointment was made for 23rd November. This one also came through as a phone appointment, not a face-to-face. Within 24 hours I was told that this appointment had also been cancelled I got 2 letters yesterday saying that a face-to-face haematology appointment has now been made for 23rd December, and the maxillofacial biopsy result appointment has also been deferred to December.
Is it normal for appointments to keep being pushed out like this or, as people have suggested, could there be another agenda at play here?
I’m still unable to speak properly after the Biopsy on Wednesday so communication is currently quite difficult.
Hi @Dave_Hazell unfortunately in my experience appointments do get cancelled and letters crossing in the post.
If you are concerned about these delays and the obvious problem you have communicating, especially on the phone, then perhaps you might consider contacting your hospitals PALS (Patient Advice and Liaison Service) for assistance.
You have outlined your diary of events in this post, so you have a good basis, keep your email clear and factual and what assistance you would like. If you can stick to emails that might help your communication issues.
Please do look after yourself and be very kind to yourself and let us know how you get on.
I had a call on Friday from my GP surgery about blood pressure results that they had forgotten to follow up on from March. The practice nurse wasn’t aware of my Chronic lymphocytic leukaemia (CLL) diagnosis but recorded the call as a Cancer Review on my record anyway. Who can make any sense of this?
Hi Dave,
Has your haematology key worker of CNS been in touch after you reached out? They are generally a good point of contact and often can liaise with the doctors. As others have advised, may also be worth getting in touch with your hospital PALS team.
In terms of your GP appointment and app information- it may be an idea to ask for a meeting with the practice manager.
I am sorry to hear of your experience and lack of support and information since. Hoping you get some answers soon.
Hi @Dave_Hazell that’s a question for your practice nurse.
Please do let us know how you get on, look after yourself, it’s great to hear from you
Hi @Loulou63 welcome to our forum it sounds as if you know a lot about the NHS system.
If you do not mind me asking do you have a blood cancer?
I look forward to hearing more about you, look after yourself.
Hi Loulou63, thanks for your reply. I have opened a PALS case that has escalated quickly to Care Quality Commission formal complaints against both the haematology department and against my GP Practice, so communications with both are somewhat strained. I am measured by CQC through my other work so I have plenty of contacts who have proved helpful.
I have also been invited to participate in the new Change NHS government consultation.
On confidential professional advice I belligerently demanded and had a face to face appointment with haematology last week to get my results from tests in July, August & September after they had tried to reschedule the appointment until 23rd December.
I will rebuild relationships once I’ve got all the rest of the info that I am (over)due.
Well done to you, i do think awareness needs to be strengthened regarding our condition. Keep posting to keep us all informed.
Are you aware of the NHS Constitution
NHS pledges
The NHS also pledges to:
- ensure that you are treated with courtesy and you receive appropriate support throughout the handling of a complaint; and that the fact that you have complained will not adversely affect your future treatment
- ensure that when mistakes happen or if you are harmed while receiving health care you receive an appropriate explanation and apology, delivered with sensitivity and recognition of the trauma you have experienced, and know that lessons will be learned to help avoid a similar incident occurring again
- ensure that the organisation learns lessons from complaints and claims and uses these to improve NHS services
Hi Erica, Dave,
I myself do not have a diagnosis of a blood cancer but unfortunately have multiple family members with a diagnosis (Acute myeloid leukaemia (AML), lymphoma, Myeloproliferative neoplasms (MPN)) so have had communications (both good and bad) with various different haematology departments and hospital to help support my family so have a good understanding of systems! Please let me know if not allowed to post,
Pleased you have had your face to face meeting Dave which was most definitely due and deserved. Wishing you all the best.