CML - Difficult Hospital Consultations

Living with and after blood cancer
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Hi All,

I hope you are all keeping well.

I’m 38 and was diagnosed with Chronic myeloid leukaemia in Aug 2023.

My question is related to the quarterly blood tests/consultations and reporting general side effects related to Chronic myeloid leukaemia/Imatinib.

Initially the hospital were fantastic. Everything moved so fast, but the consultant and lead nurse were extremely reassuring at what was obviously a scary time.
I found the consultant to be generally good, but at times maybe a little lacking with her bedside manner. Even in the first few days, whenever we asked questions she was kind of dismissive, which initially was framed as a “leave that to us to worry about” but soon it felt more like we were being dismissed because we couldn’t possibly have the capacity to understand this condition.
One of the early appointments my brother attended with me she noticeably changed her demeanor when she found out what he did for a living. She seemingly began to take his questions more seriously.

Anyway, in January this year i had quite a difficult appointment and out of nowhere she was really abrupt with me. I told her i was still struggling with some fatigue and bone pain and she bluntly told me “if you can’t do your job maybe you should find another one”. This obviously wasn’t great advice 5 months into a Chronic myeloid leukaemia diagnosis, and I’m trying to figure out what I’m capable of and a “new normal” for myself.

Anyway, i’ve not seen her since the Jan appointment and just see a different member of her team now. I dont know if that’s intentional or just because I’m no longer a recent diagnosis / priority case.

I just wondered what other people’s experience are at these appointments? I get the impression I’m really annoying them when i feed back any side effects or ask any questions now.
It’s just starting to feel surreal to me because I’m not asking for new meds or anything additional from them at all.
I’m always friendly and polite, I don’t contact them between appointments, and I’m just using my 10mins to report in or ask if something could be related to the Chronic myeloid leukaemia/Imatanib. I really don’t know why it all feels so off.

From what I’ve read online, the few things I have reported or asked about dont feel that unreasonable (or stupid). For example, since June i have had some lower back pain (not major just uncomfortable) and the GP told me i should at least make them aware of it just for the record. So i mentioned it in my last appointment and was told i shouldn’t blame the Chronic myeloid leukaemia/Imatinib for everything and i should be handling it via my GP (which i am). I didnt think it was a huge jump as i have bone pain in my legs and wrists to at least ask if my back could have also been impacted.

Quite simply i don’t even know what i should and shouldn’t say to them anymore and I’m just finding these appointments really tough.

I’m aware of how this post sounds, and i know the NHS is dangerously understaffed/underfunded. I feel guilty whinging because i know there are plenty of people dealing with a lot worse than i am right now but i feel so, so confused.

Thanks for your time (…and sorry for waffling).

Take care

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Hi @CG1212 Firstly i think you have not been treated properly and i understand your concerns. You should be listened to and be heard. I have never had a problem in this way with my Chronic myeloid leukaemia but i have been on the breast cancer side. In that case i changed consultants but that isn’t as easy for Chronic myeloid leukaemia as there are fewer specialists. Have you mentioned to your GP that you are not getting the reassurance and advise you need from your haematologist? The first few years are very stressful as we come to terms with the side effects and the decease. It is a life long thing to manage so of course you need to know how to control the pain and live as normal a life as possible.
As a last resort there is the possibility of going through PALS. I did this with my concerns over my fathers care and it is easier to write it all down in an email and as for your worries to be addressed.
I am sure other people will give reassurance here too.

All the best.

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Dear @CG1212,
Welcome to the forum, I think you will find this a really supportive and helpful place.
I was so sorry to read your post, in shouldn’t be like this and I am so sorry for the way you have been made to feel.
Firstly can I let you know that our support line is open 6 days a week and we would be very happy to talk through your diagnosis and answer questions you have, Out number is 0808 2080 888.
Secondly @Chrispy is absolutely right, you could go through PALS and explain what is happening, they would advocate on your behalf to try and find a solution. You could also ask to be seen by a different Haematologist at your current hospital.
You could also speak to your GP about this and they could refer you to a different hospital (if there is another one nearby).
I would hate for you to feel anxious prior to every appointment, it is really important that you feel able to talk to your consultant and share any new symptoms with them.
Take care and do call us if you would like to talk.
Heidi J (Support Services Nurse)

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Hi @CG1212 welcome to our forum and I am so glad that you have found us.
I cannot better @Chrispy and @Heidi-J-BloodCancerUK responses to you.
On a different angle I write down all my fears, questions and practicalities before appointments so I feel prepared.
I am also pleasantly assertive and do not leave the consulting room till I get the answers I understand and I feel happy with the conclusion or next steps.
As you say I find it helpful to have someone with me for support and to take notes.
I find all medical appointments really exhaust me and I want to feel comfortable going to my appointment.
You have the Blood Cancer UK support line if you need it.
Be kind to yourself and really look after yourself and please do keep posting how you are.

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Thanks for your comments, i really, really appreciate it.
I was really scared to post as i didn’t want it to sound like a long whinge about the NHS, but it’s just been really hard and it’s really adding to my stress.
Again, i know how it probably sounds, but the side effects I’ve reported are all pretty standard (for Chronic myeloid leukaemia/Imatinib) so i don’t quite know why the reaction to me noting them is so off.

I have discussed it with my GP at length (she’s brilliant and we are having regular appointments) and a few months ago i did talking therapy for people dealing with a big diagnosis. The therapist was also great but could only really help me establish why i was so rocked by it which really helped but isn’t a fix.
I told both the GP and the therapist that i didn’t want my feedback given to the consultant/haematology dept as i am really reluctant to do anything that makes the situation worse.

I actually spoke to my GP this afternoon and she suggested that maybe i should turn it around on them. Basically ask them directly what they believe i should report to them instead of mentioning things they seemingly don’t deem relevant. She did say it shouldn’t be that way but at least it would put the ball in their court. Then i could report in to her and she could approach them if needed.

I know this sounds silly but ive struggled so much with this guilt about not feeling OK when i know others are dealing with far worse.
Because Chronic myeloid leukaemia is “manageable” i feel like a bit of a fraud and their tone just adds to that.

Thanks, C

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Oh @CG1212 what a brilliant GP you have.
I know I have felt what they call ‘Survivors Guilt’ and fraudulent.
I thought should I even be on this forum etc.
I was told in no uncertain terms that I had every right to be here.
Exactly the same with my medical teams I have every right with them too.
Please do let us know how you get on and how you are doing and even pretend you have your GP with you at appointments.
Be very kind to yourself

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@CG1212 Never feel your problem is nothing. This forum is to help you mentally as well as with the physical problems. No post is silly and all are worth saying if the rest of us can help in any way at all. Most of us have felt in a similar way at the start of treatment. Please continue to post and let us all know how you are doing with it all.

Wishing you all the best.

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@Chrispy

Thanks so much for your comment(s).
I stewed a lot yesterday before and after my initial post and the comments really did help relieve some of the stuff that’s been weighing heavy on me.

Thanks again & take care

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Oh bless you
I’m linking you the NHS constitution which may help you feel more confident and able to formulate questions and you can quote the bits you need

Your GP sounds lovely could she ask questions on your behalf and help ease your anxiety

I have copied below extracts from the constitution

Working together for patients

Patients come first in everything we do. We fully involve patients, staff, families, carers, communities, and professionals inside and outside the NHS. We put the needs of patients and communities before organisational boundaries. We speak up when things go wrong.

Respect and dignity

We value every person – whether patient, their families or carers, or staff – as an individual, respect their aspirations and commitments in life, and seek to understand their priorities, needs, abilities and limits. We take what others have to say seriously. We are honest and open about our point of view and what we can and cannot do.

Commitment to quality of care

We earn the trust placed in us by insisting on quality and striving to get the basics of quality of care – safety, effectiveness and patient experience – right every time. We encourage and welcome feedback from patients, families, carers, staff and the public. We use this to improve the care we provide and build on our successes.

Compassion

We ensure that compassion is central to the care we provide and respond with humanity and kindness to each person’s pain, distress, anxiety or need. We search for the things we can do, however small, to give comfort and relieve suffering. We find time for patients, their families and carers, as well as those we work alongside. We do not wait to be asked, because we care.

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@2DB

Thanks so much for your comment. I’ve never seen the constitution before so that’s really helpful.

My GP has been brilliant and very supportive. She has suggested asking them what they want to hear about from me, instead of me asking if something is relevant. Then anything else i can take to the GP, and if she believes it to be relevant to Chronic myeloid leukaemia diagnosis she will flag it to them instead.

I think it’s good advice because i definitely can’t carry on like it is now. However it does seem like a real waste of the GPs resources and obviously adds another layer.
Again, I could understand if i was constantly badgering them with this and that, but it truly is just one or two things i note down between my quarterly tests and raised at my appointment which presumably is why it’s in place.

Thanks & take care,
C

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Definately lead your care and quote from the constitution if it’s falling on deaf ears
I have made several complaints about consultants and I now have a lovely one who I quoted the constitution about being patient led and they are happy to do so.
I’m more confident in reporting things I would have avoided previously for fear of being told it’s nothing to do with your condition

I had lost my long term consultant to another hospital and had the anxiety inducing coldness of locum consultants who told me I looked well and they had other sick patients to see amongst other things

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@2DB

Sorry to hear you had to deal with that. It does sound very similar to my experience but I’m glad you stood your ground with it.

In my April appointment i noted that i still had some bone pain in my wrists and shins and the consultant i saw (one of the more laid back ones) said that was quite normal. Then at my appointment last week when i mentioned if my back pain could be just another bone pain the consultant not only told me that not everything was related to my Chronic myeloid leukaemia, but also that the % they are detecting means i wouldn’t have any bone pain at all… it’s so confusing.

I’ve not seen my actual consultant or my specialist nurse since my Jan appointment so not only is it tricky, it’s also becoming quite inconsistent.

Take care, C

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Hi @CG1212 I wonder if you have contact details for your specialist nurse that you might contact.
Look after yourself and please keep letting us know what is going on for you.

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