When I saw my haematologist just before Christmas. The nurse was there for the first time since I was diagnosed in early October. She asked me about having a phone consultation and I said no I prefer face to face as my hearing isn’t good on the phone. Today I have received my next appointment which is a phone consultation. I now feel very stressed, and they are adding stress to an already stressful situation. This is the same nurse who was supposed to contact me at the time of my diagnosis and never bothered. All she seems to be doing is making my life more difficult. I rang the hospital today but only got an answering machine. I won’t accept a phone consultation for the reason I have said, so why did that nurse bother asking me and who makes the decision about my appointments. The Dr has never suggested it. I was coping ok until this, but now I feel totally let down and disregarded. They sent me a blood form with the letter, but I won’t bother having it done unless I get a proper appointment. I want to be able to see my blood results on the screen, not just take someones word for it over the phone. Don’t they realise that we are real people that they are dealing with, and not just a case number with ET JAK2 written on my forehead.
Hi @Chris1, thank you for sharing and I’m so sorry to read what you’ve been through here, and that you’re understandably feeling stressed now. I can appreciate it must be so disappointing when you were hoping for an in-person appointment- I can hear that this would suit your needs better. Please do remember that our Support Team are here and if you’d like to talk this through, you’re welcome to get in touch with us- if talking over the phone does not suit you, you can also email us (Blood cancer information and support by phone and email | Blood Cancer UK).
May I ask whether you’ve had any luck at all in changing this to an in-person appointment? If you need any further support with this, it may be worth talking to the hospital PALS department ( What is PALS (Patient Advice and Liaison Service)? - NHS (www.nhs.uk)). Apologies if you are aware of this already, it may have been mentioned in another thread, I think.
We are all here for you.
Best wishes,
Tanya.
Thank you @TanyaBloodCancerUK. I have just had a call back from the hospital. The lady I spoke to was standing in for the haematologist 's secretary, so she can’t change it, but said she will speak to my Dr. I told her that I won’t do a phone consultation nor the blood test until I get a proper appointment. I am feeling very upset about this. If it wasn’t for this website I would feel totally alone. My husband is very good, but he doesn’t understand how much this has affected me, and keeps saying that it is not important. Well it is to me. Right from the start, I haven’t had any support from the hospital, so if it wasn’t for coming on here and having others who understand how I am feeling, then I don’t know how I would cope with this. I did think that if this isn’t resolved soon, then I will get Pals involved. Thanks for taking the time and trouble to reply to my post. Best wishes from Chris.
Hello @Chris1. I am so sorry to hear of your distressing experience regarding your appointment. I genuinely understand how upsetting these things can be especially when you feel others don’t understand how it is affecting you. Since my diagnosis (many years ago actually) I find these kind of issues affect me deeply. Maybe it’s because we are already coping with so much. There is nothing worse than feeling you are not being heard of just being treated as a patient on a list. I haven’t got the answers but just want you to know I care and it’s good that you have shared your story and found this forum. Thinking of you and sending warm wishes. Willow X
Thank you @Willow for your kindness. It means a lot to me. This has really kicked me sideways. I have coped well up until now, even though the whole experience with the hospital has been an uphill struggle. It is not the cancer that I find hard to cope with, but dealing with the haematology dept and their obvious lack of care and compassion. It seems like the nurse is some kind of sadist, asking me if I prefer a face to face appointment or a phone one. Then when I explained that I struggle with hearing on the phone, I get given a phone appointment. If this is an ongoing thing having to deal with them deliberately giving me stress, then I don’t know how I will manage. I don’t cope with stress very well now I am old. Even less so, since my diagnosis. I hope you are keeping well at the moment. Take care and thanks.
Hi @Chris1 Yes, I have a husband who goes around with his head in the sand and doesn’t talk about my blood cancer.
I also do not deal well with what personally stresses me well and unfortunately I find hospital appointments can be a hard work battle point.
I spoke to my sister in law who is also doing battle for another medical issue appointment.
I try not to take it personally if it happens, but it is hard when I feel it is the final straw, stressed, tearful and it is all too much.
You have been given good thoughts from others…
The most important thing is that you look after and be kind to yourself and keep posting
Hi @Erica. I am feeling a bit better today, although nothing has been resolved yet. I was feeling so drained yesterday after receiving the hospital letter and then having to talk to an answering machine. I have very bad tinnitus caused by a neurological problem, so using the telephone is particularly challenging for me. I don’t think the haematologist even asked me about any other medical problems that I might have at my first consultation. He doesn’t listen properly either, as I will say something and then he will ask me the same thing again a few minutes later. It must be a man thing!! The thought of having to deal with these people for the rest of my life fills me with dread. I will stand my ground about not having phone consultations though. It might be easy for them, but I have to look after myself, so will refuse to participate, and they won’t get my blood until I have a face to face appointment booked. Why oh why could I not have got a kind and understanding Dr and nurse. Do they even exist any more!!
Morning @Chris1 I am sorry to hear about your appointment issues. Is there a way you could place your phone on speaker and have someone with you to listen in with you and take notes. We use the speaker phone facility all the time with our elderly parents it works brilliantly for them, they are both hard of hearing.
It may be that they are doing this specifically to keep you safe right now. I know that many hospitals have reinstated masks and restrictions on visitors due to increased covid.
Having covid on Christmas Day and currently taking anti virals myself 
staying home might just be the best place for you.
Hope you can sort something that works for you. Do let us know how you get on.
Ask as a reasonable adjustment under the equality act for a video call and have you got someone who you could have with you through the call to take notes or even talk on your behalf
My brother is my advocate and has been a god send in stressful situations.
Hello @Willow and @TanyaBloodCancerUK. Just to update you about my haematology appointment. Well, I am glad that I stood my ground with them. I had a phone call from the hospital today and I have now been given a face to face appointment instead of the phone one that they were trying to inflict on me. With several other medical problems as well as the ET, making life difficult, I was not prepared to be put under more unnecessary stress. My appointment isn’t until February, but that is ok, as I have to see a neurologist in January for another ongoing problem, so it is good that the appointments are spread out.
Oh @Chris1 I am impressed with you, well done.
As I have probably said before I keep my stress levels down by writing everything down before medical appointments.
My medical history, family history, medications, allergies, vaccinations etc I can use for all my appointments. Then I have notes on my specific conditions with fears, questions, practicalities etc.
My mind goes blank as soon as I walk inside a medical building.
Look after yourself
Thanks @Erica. I always write things down for my medical appointments too. Like you say, it keeps the stress levels down, and I find it helps me to keep focused on what I want to ask. Without it, it would be so easy to forget all the questions, especially once the Dr starts talking. I am so glad that they have reinstated my face to face appointments. Perhaps letting them see how badly what they were doing had stressed me out, gave them food for thought. I am a human being and not just a case number!! I hope you are feeling well today. I don’t have a dog to walk anymore, she died a few years ago and we haven’t replaced her. I have always had dogs, so the house still feels very empty without one. Have a good day. Warm wishes from Chris. Xx
Personally I’m more than happy with phone consultations, much less of my time spent waiting in a hospital. The nurses are busy and don’t mean to upset, just trying their best, it’s a stretched system, feel glad your getting some care.
I understand how stretched the nurses and NHS is in general but somehow I think it is vital that each patient’s circumstances and preferences are taken into consideration. It seems part of the problem is when we feel that no one has listened correctly. Sometimes they ask a question, we answer truthfully stating our needs, preferences etc, and then they do the opposite! I am sure this isn’t done deliberately but it can be upsetting and add stress to the situation. We are all individuals and what works for one, may not work for another. There could be several reasons why a telephone appointment isn’t helpful and vice versa. Warm wishes. Willow
Willow, I get what your saying. Make sure you always have notes ready for any type of appointment as I feel that’s where it goes wrong a lot of the time. I’m also aware that unwell people mostly feel the need to be loved and hugged more, not always necessary for them. It is a stretched system and under huge stress, and not enough staff. Be thankful you can be checked over the phone after your blood tests, anyway, flue, COVID, do you really need that date with the bugs? And if we all keep playing up about needing face to face, the system that is looking after us all won’t be there soon.
Thank you for your thoughts @Andrew3. I still feel each case needs to be looked at individually and it’s up to each individual to decide what works best for them and weigh up any risks accordingly. For example a foreign accent on the telephone can be difficult to understand and if you have a hearing problem, for example, you might prefer to have a face to face consultation. Obviously at the height of Covid this wasn’t possible but personally I found telephone appointments unsatisfactory and felt rushed to bring it to an end despite always making notes beforehand. It’s not a case of ‘playing up’ about having a face to face appointment, it is a genuine need for some people. Fortunately there are people like you who prefer a telephone appointment and that’s fine but please try to look at the bigger picture. We are all doing our best to be aware of the pressure the NHS is under. Warm wishes. Willow X
Totally agree I was diagnosed with slow growing lymphoma in November and got a telephone appointment within two weeks which was a bit of a shock to me then two days before the appointment I got a call saying it was changed to face to face I don’t think I would have got to say as much on phone and the consultant said when she looked at my notes she realised I needed to be seen face to face have now had a PET scan and CT next appointment is Monday
face to face to decide if I need another biopsy or a bone marrow biopsy I am really stressed with it all
Hello @Janie1234 and welcome to this forum. Thank you for sharing you story. I am so glad you have found this forum at the early stages of your diagnosis. I hope you find it a supportive place to share and learn from the experiences of others. Don’t forget you can speak to the lovely Support Team on the phone by calling 0808 208 0888. Please continue to share and update us if and when you feel able. Thinking of you very much and sending warm wishes. Willow X