Living with an MPN means regular appointments with a haematology team for tests and check-ups.
It can be daunting facing your first consultation. But even for patients who are frequent flyers, well-seasoned in what to expect, they can be stressful situations for you and your family.
Whilst a doctor’s schedule is filled with back-to-back consultations, an appointment looms large in a patient’s diary, a major departure from their usual routines and daily life.
From a doctor’s perspective, your appointment may be unremarkable; one of a series throughout the day that is not particularly dissimilar from any other.
But from a patient’s perspective, an appointment is loaded with significance, meaning, and expectation. It is a moment in which you hope your symptoms will be listened to, questions will be answered, doubts will be eased, and a plan of action will be put in place.
There is a build-up and aftermath: beforehand, you think about the questions that have arisen since your previous appointment and afterwards, you reflect on what has been said, what it all means, and where you go from here.
Preparing for and attending an MPN consultation is therefore the focus of this month’s blog post.
Megan, a wonderful young patient with ET who you might remember featured in my September blog, gave a presentation on a similar topic at the recent MPN Voice Living with MPNs Day in London. Her talk contains really helpful and practical advice, and if you missed it, I’d highly recommend watching it on YouTube via this link: https://youtu.be/jY2lgq0wLxI
I hope to complement her presentation and add some additional thoughts for anyone newly diagnosed or for patients looking to start the new year with a fresh approach to their consultations.
Here, then, are my 5 top tips for approaching an MPN consultation:
1. Buy a Special MPN Notebook
Because we’re likely to have so many appointments over the course of our MPN journeys, it’s worth purchasing a dedicated notebook in which you can write down all your questions, thoughts, and queries. Keeping all your MPN-related information in one place ensures you don’t rely on endless pieces of scrap paper that are likely to get lost or misplaced. It also enables you to look back on your journey, see how far you’ve come, and revisit things that may have gone unanswered. You can take it along to patient forums for scribbling down presentation notes, as well as fellow patients’ contact details. It also functions as a ‘health journal’ which you can open and close. Your MPN might fill its pages, but you can step away from it if needed. I am also a big fan of TK Maxx, and this is a great excuse to browse their lovely collection of notebooks!
2. Plan Your Questions
Take time before your appointment to write a list of questions for your haematologist or nurse. This provides a bit of structure to your appointment and ensures you’re not left wracking your brains in the heat of the moment! We all know that time is so short in consultations, so I usually aim for around 5 questions in total. They’re likely to be about a mixture of topics: the disease itself, new or continuous symptoms, treatment plans, test results, clinical trials, vaccines, or even news coming out of the latest haematology conferences. It can sometimes feel intimidating confronting your haematologist with a series of points, especially if your appointment is over the telephone when you can’t read their body language or easily judge pauses in conversation. Nevertheless, don’t be afraid to refer back to your notepad, address each question in turn, and jot down their responses. That said, I’d also ensure you leave some space for spontaneous questions. Not everything can be planned for in advance, and listening and reacting to answers is just as important as posing pre-prepared questions.
3. “Head to Toe” Symptom Report
A couple of years ago I came across a great interview with an MPN specialist who started their consultations with the term “head to toe”. By that, they meant they asked their patients for a comprehensive update on their health and wellbeing, encouraging them to share any and all symptoms they were experiencing from the top of their head down to the tips of their toes. In other words, a full body scan no matter whether or not the patient thought they were relevant. Contrary to starting from the position that not all symptoms are related to MPNs, this consultant adhered to a philosophy of wanting to know every symptom patients were experiencing with a view to ruling out MPN if necessary. It makes sense when you think our circulatory system weaves its way throughout the body with blood vessels and cells in every nook and cranny. Take time before your appointment to think about the symptoms you’ve experienced over the last few weeks and months, however strange or perplexing they may seem. Put simply, don’t leave your healthcare team in the dark. Share what you’re going through, so they can come up with diagnoses, solutions, and treatment plans, and offer help and advice on how to alleviate certain symptoms.
4. Speak Up
There’s nothing worse than coming out of a consultation feeling like you didn’t get chance to raise a specific issue or receive an answer to a question that’s been worrying you. Highlighting your most important questions beforehand is a good way of ensuring you don’t forget them or lose sight of the key problems you’d like to discuss. Sharing your question plan with a family member or friend who can attend your appointment with you not only provides a second pair of eyes and ears, but also means they can prompt you if you forget to ask a particular question. Whilst it might be okay to save a question or two until your next consultation, don’t bottle up your worries or concerns. Speak up and share them with your clinical team.
5. Plan a Post-Consultation Treat
Hospital appointments are exhausting. No matter if a consultation is 10 or 30 minutes long, you often come out feeling drained. Although unconscious of it, you’re listening so intently, hanging on every word that’s spoken and gesture that’s made. It’s therefore always nice to plan a treat for afterwards. It gives you something to look forward to when you’re walking the hospital corridors and can be something as simple as going out for coffee or afternoon tea, or visiting your favourite shop. When I was first diagnosed I had a red blood cell mass test to determine whether I had ET or PV. It was a daunting appointment in an unfamiliar hospital and ominously named ‘nuclear medicine department’. Afterwards, however, I went with my mum to the Chelsea Physic Garden, a botanical gem on the edge of the Thames. We had an amazing, guided tour and I also met a Chelsea pensioner dressed in his full red regalia! When I think back, I therefore not only remember the canula and tests, but also our visit to a place I’d always wanted to go.
MPNs come with a significant physical and emotional toll, and we mustn’t forget to be kind to ourselves and schedule in treats along the way.
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If you’d like to get in touch with Alice about this topic or any of her blog posts to date, you can contact her by email at: info@mpnvoice.org.uk
You may have read Alice’s previous blog post on Diet and MPNs. If you missed our recent launch of the MPN Voice Recipe Book, you can purchase a copy on Amazon here: The MPN Voice Recipe Book : Voice, MPN: Amazon.co.uk: Books
