How people with lymphoma have their regular and routine appointments varies. Some people attend hospital, some have telephone and some use virtual appointments (such as video conferencing or chatting). Many people will have a combination of these appointment types, depending on their lymphoma, the reason for the appointment and their preferences.
During the COVID-19 pandemic, attending for appointments has been more challenging, and many people are being offered telephone or virtual appointments rather than being able to attending in-person.
However you have your appointments, there are various ways in which you might want to prepare - in advance and on the day - to ensure you get what you need from the appointment.
Types of appointments
The type of appointment you are offered is likely to depend on your clinical situation and the situation at the hospital in terms of attending in person. This will vary from one person to another, and one hospital setting to another. It aims to balance the risk and benefits of attending in person with having remote appointment (by telephone or video).
Where possible, hospitals will often try and take into account your wishes and preferences. So you might like to talk to your medical team about what options for your appointments are. In some cases it may be possible to have a face-to-face appointment, with the appropriate precautions. It is often worth asking, if you have a preference, and explaining why.
When you have face to face appointments
When attending your appointment in person, this may have to be alone (and you may not be able to have someone with you). The hospital may give you guidelines or instructions for attending. In addition, it might be helpful to consider things such as taking as little into the hospital as possible in terms of personal possessions, but ensuring you have your mask, gloves and sanitizer with you.
When you have remote appointments
When you meet face-to-face, you often pick up on body language. So you might find that during remote appointment you miss those body language clues – if you are not sure about something ask, and be clear about what you need.
It can be a good idea to make sure that your consultant or nurse has your phone number in case your internet link doesn’t work.
Plan in advance what you want to get from your appointment
- Be very focused – think about what you want to get out of your appointment.
- Make a list of what you want to ask about or know, and prioritise it. Some people use a notebook, others might use a 'notes' list on their phone.
- Some people might keep a diary of any symptoms they are having, or take photos of swollen lymph nodes or other physical changes. This means you don’t have to remember lots of information for the appointment.
- If you are having any tests or scans, think about what you would like to know to understand and prepare for them, so you can ask any questions at the appointment.
The following is an example of a way of thinking through what questions you might want to ask at your appointment, which you can adapt to your situation.
- What: what is the treatment you are recommending, what is the plan for me, what are the details?
- Why: are you suggesting this routine, is this the right treatment for me?
- Who: is involved in my management, is part of the team, is my main contact if I have questions?
- Where and When: will I have this test/treatment, will I have to stay in hospital?
- Worries: do I have any worries or questions I want to ask?
- Never: leave an appointment wishing you had asked something that was important.
On the day
- Some people find that travelling to an appointment is a way to prepare and be in the right frame of mind. This can feel different if you are at home waiting for a call to come, so you might want to find ways to feel ready for the call or chat. For example, you might want to go into a different room for the appointment to where you would normally spend most time.
At the appointment
- Ask how long you have for the appointment (sometimes it isn’t clear when an appointment is coming to an end, so asking at the start of the appointment means you know when it is likely to end).
- Ask about any test results you are waiting for, and whether they can be discussed.
- Communicate clearly about what you would like to ask, focus on or learn from the appointment.
- Try and be confident to say what you want to get from the appointment, or if you still have unanswered questions or need to clarify anything.
- Ask if you can have a family member with you on the call or video chat.
- Towards the end of the call or chat, your consultant or CNS may summarise the key points that you’ve talked about. Don’t be afraid to summarise back to them your understanding of the conversation, to check your understanding.
You know your lymphoma
- In many cases, you will know your body best, and be the first to notice any symptoms of your lymphoma, and whether you have any concerns about any changes to your health. It may be helpful to communicate this with your consultant or CNS. For example, if you are feeling well and your symptoms are stable, you may be happy to have remote appointments. But if you are concerned about any symptoms, you may want to ask about whether you can be seen in person.
We have a video for anyone who would like to check their lymph nodes, which gives some useful guidance about how to do this effectively. It also gives guidance on when to do this, how often, and also about other symptoms to be aware of and report to your doctor if necessary.
Recording your appointments
- Many consultants and CNSs expect you to bring a note book with your questions in and to write notes, or to do this on your phone, and this is quite usual. Making notes of the conversation also means that you have them to refer back to, rather than having to remember what was said.
- If you can bring someone with you to your appointment (your ‘plus one’), it can often be really helpful to have that ‘second pair of ears’, and also for some support.
- However, if it is not possible to bring someone with you to your appointment, you might like to ask your consultant or CNSs if you can ring your family member/friend and have them on loud speaker, so that they can be part of the consultation.
- If your appointment is by phone or video, you may have thought about asking if you can audio- or video- record your consultation. However, this can be quite off-putting for your consultant or CNS, it can make the appointment feel uncomfortable, and they may have concerns around confidentiality. We would suggest that you ask about this in advance rather than on the day.
'Un-packing' your appointment
After your appointment you might have lots of information and feelings, and it can sometimes feel like a bit of a whirlwind. Some people find that taking some time to process the consultation, whilst it’s still ‘fresh’, can help to digest it and get it straight in their mind. Family and friends might also want an update or have questions, and giving yourself time before talking to other people can sometimes be helpful.
- If you have an questions after your appointment, or you want clarification of anything you are unsure about, get in touch with your consultant or CNS. They will often be used to this, and expect that you might have further questions.
- It can be helpful to share your phone numbers and email address with your consultant and CNS, and to ask about the ways that you are able to get in touch with them. For example, some clinics may prefer phone calls and leaving a message, some might use text messaging and some, emails.
You might also like to see our information on 'questions to ask' at you appointments.
The content of this page was developed from our 'Getting the best from your appointments' webinar, where Mike, Sandra, a haematologist and an advanced nurse practitioner shared their experiences and tips for preparing for appointments.