This is the transcript for my talk on the Wisdom app. Listen to the talk here.
Good morning, sorry for a bit of silence there. I’m just trying to figure out on the Wisdom app how to share my tweet when I start talking and talking at the same time and I haven’t managed to figure out how to do that yet.
So happy Sunday morning, it’s lovely and sunny here in Northamptonshire. Cold outside, I imagine, but it feels like summer from inside and today I wanted to do a quick talk about how to cope when you’re waiting for some kind of diagnosis or for caregivers, how to help other people to cope well, in this waiting period.
And this talk is based off a message that I got a couple of days ago. Anybody who’s already familiar with my content knows that I have Lynch syndrome, which is a genetic condition that makes people more likely to have different types of cancer over their lifetime and it’s a genetic condition. It’s Lynch syndrome, but mine is actually CMMRD, which I explained, I think in another talk, is kind of a double Lynch syndrome. I inherited it from both my parents, so it’s slightly different and puts me a bit more at risk, but that’s the background that I’m coming from. I’ve written my memoir on it and I do a lot of sort of talking about it online and things.
So somebody who I’m Facebook friends with who I knew many years ago, but haven’t spoken to for a long time, got in touch with me to say that they are also being tested now for Lynch syndrome because of their family history of cancer.
They just wanted to talk to me because they know that I’d experienced it and they were worried about having to go for the blood tests that you have, which confirms whether or not you have Lynch syndrome.
They were, they were just, you know, worried, naturally, about what the outcome might be, what it could mean for them, for their family.
So I wanted to do a talk today based on, just to give some of my personal tips on how to cope while you’re waiting for the outcome of a diagnosis like this, or how to help other people to cope so, so that’s kind of the background of this talk, but I am going to try to keep the tips quite general so that they could apply, you know, if you’re waiting for a diagnosis of other kinds, because all of our experiences are a different. We all have, like different medical concerns, but I think that the anxiety and the fears, a lot of it is a shared experience.
And so on with the tips. I’ve got eight tips for somebody currently waiting for a diagnosis, and then I’ve got five at the end for caregivers as well.
The first thing that I would say is to try to keep yourself busy because it can be a long wait sometimes and it can feel even longer, so in this case, you might be waiting a week or two for the actual appointment for the test or the scan or whatever it might be. And then it could be another few weeks waiting for the outcome of that and to find out what the result is.
So trying to keep yourself as busy as possible, just to take your mind off it. I don’t know if this is other people’s experience, but what I’ve found if I’m waiting for, say one of my regular scans or the results of the scans. I tend to freak out a bit when I get the letter inviting me to the appointment and say the appointment is in a month’s time, I worry about it when I receive the letter. But in that in between time say halfway between receiving the letter and going for the appointment, I do tend to forget about it a little bit. You know, it’s still at the back of my mind, but my anxiety levels drop because I feel like okay, the letter has come and I’ve come to terms with that. Okay, I’ve got an appointment, but also the appointment is still a couple of weeks away so I feel like it’s not an imminent threat so I can get on with other things and I feel a little bit more at peace during that time and then it ramps up again when it gets closer to the appointment time. So I don’t know if that’s like other peoples experiences as well while waiting for diagnosis. I know it’s a slightly different experience, but that that could be something that happens for people.
So trying to keep as busy as possible and really lean into those moments when you’re not feeling too anxious and practising mindfulness as well, it’s just kind of occurred to me.
I haven’t put it on my tips, but as a little bonus, a thing here while keeping yourself busy just really trying to be mindful of “is there a threat right now?”
You’re there, you’re sitting on your couch or at your desk or in your car and you’re driving to work or to the shops, or you’re watching TV and your mind is wandering or you’re trying to work.
Uhm, how do you feel right now?
Forget, if you can for a moment, what’s coming up in the future.
In this moment, as you are where you’re sitting, what you’re looking at.
What’s surrounding you? How do you feel in this moment? Is there an intimate threat in front of you, next to you?
It’s just Sunday morning, you’re watching the morning TV shows or the news or whatever. And you’re with your partner, for example.
How does that feel? Just being in that moment and knowing that there’s nothing imminent in this room here that can hurt you.
And I just try to go back to that. You know, it might be worried about an upcoming scan or the results of it.
Uhm, or just, you know, just general fear of recurrence that sometimes comes along but I just stop and think. In my case, am I okay right now sitting on the couch with my partner in the room and we’re just watching Lost or whatever we are running through.
Is everything OK right now? In this moment? Yes, yes it is.
And even if it only lasts for a moment that can feel good.
So keeping yourself busy, whether it’s watching Lost, whether it’s treating yourself, going to.
A spa, having a bubble bath, reading, working, doing any side projects that you might have, any DIY, whatever it is, just try and keep yourself busy and focused on the moment that you are in.
So that’s the first thing.
The second thing I would say is to advocate for yourself, which is a practical tip. Obviously, if you’re listening, you might not be in the UK and health systems in different countries are very different. People have different experiences. Here in the UK, I find I do have to advocate for myself a lot with kind of the admin stuff that surrounds us sometimes in this medical world, which is really annoying because it’s the last thing that you want to have to do is to chase up results and get in touch with the hospital.
But sometimes you just have to do it, so if you’re waiting for results and they’re late, you’re thinking, oh God, where are they? You know, if there’s some kind of delay at the hospital, you know things are really difficult now with COVID and people testing and having symptoms and being off off sick or having to isolate and causing staff issues everywhere as we all know.
And of course that’s impacting the health service as well. And yeah, any number of things could be holding up, getting results.
And it might just be an annoying thing that the person, the important person, hasn’t looked at them yet. Which I have experienced recently, so it’s taken me two months to get results for a CT which turned out I needed an MRI for afterwards and then it took two months to get the MRI results as well. It’s just been a, it’s an absolute nightmare and it’s difficult as well when you’re not really familiar with the internal processes in the hospital, you don’t know what happens to the results you know, who do they get passed to. What are the internal workings of the hospital? And you’re there at home trying to second guess why is this late. You know, could it be because it’s bad or ’cause it could it be because the results are good and therefore not urgent?
When you find yourself trying to second guess all of these things, or figure out why things aren’t happening, which is a really frustrating place to be in.
So if you’re finding that the results are late or things aren’t working in the way or the time frame that you expect, it is really annoying, but we do have to advocate for ourselves as patients and to chase things up and make sure that these things that should be happening are happening.
OK, so tip #3 then is to remember that you’re making a good choice with whatever it is. So in this case, investigating whether or not you have a genetic condition that runs in your family.
You’re making a good decision for this.
Sorry my phone rang.
So yeah, this is really talking about being in control because there’s so much of the medical experience that we don’t have control over. You know, if we have an illness we don’t have control over getting it.
It’s never our fault. It’s not, you know something that we’ve done. You know no, no matter how many times people say oh yeah, you if you have like a good diet or exercise or whatever else you know. People get cancer or whatever anyway.
And there’s a lot of stigma around things like lung cancer as well, like, well, did the person smoke and you know?
It can feel like there’s blame around getting illnesses, but it’s not our fault, it’s not something that’s in our control and just thinking again about the medical system, that’s not in our control, either, you know, the processes around that and when we got our results.
So remembering that you are making a decision can help to feel like you are a little bit in control when there is not much control to be had in these situations.
I know it doesn’t often feel like a choice. You know if you found out something runs in your family and that you should find out if you have it. It might not feel like there is any option but to follow through with that.
Similarly, if you’re told that you have an illness, then you feel there’s no choice but to do whatever the hospital tells you to do. Go through the scans and the tests and the operations or the medication or whatever else. But there is always a choice.
We could run away, we could literally run away.
We could ignore letters that come, we could bury our head in the sand. We could pretend it’s not happening.
And I try to remind myself that those are options that I do have, even if I feel like I don’t have options. I’m not saying that these are good options.
Of course we shouldn’t ignore letters that are telling us what medical professionals think we should be doing. Of course, we shouldn’t run away or bury our heads in the sand, you know.
But at the end of the day, it is still an option, you are choosing to read the letters, to drive to the hospital, to talk to the doctors, to take on board what they’re saying.
It’s always a choice and that can feel like you’re more in control of the situation, so that just changing that mindset a little bit can be quite helpful.
My 4th tip for coping while you’re waiting for some kind of diagnosis or test is to talk to somebody, friends or family, which I know can be difficult.
And talking about these things to people can make it feel like they’re more real.
And that does sometimes take away a bit of control from you as well, because then sometimes people might start to bring it up and try to talk to you about it when you’re not in the mood to talk about it.
But then it’s just a case of being open about when you do want to talk about it, and when you don’t, and choosing who to talk to about it. Who’s going to be the most supportive and understanding person for you?
And if you don’t have somebody that you feel that you can talk to about it, then what about people online?
You know, just taking the cancer community, for example, the cancer community online is huge. There’s so many people in this space on Twitter.
There’s lots of websites and support groups. There’s Facebook groups, there’s organisations, for example ihadcancer.com, Stupid Cancer, Elephants and Tea, just off the top of my head. These are all… Gryt. That’s G-R-Y-T.
They’re all super supportive, a lot of those are AYA, so adolescent and young adult cancer groups.
Full of people who know exactly what it’s like to be going through something like this. And thinking for Lynch syndrome, Lynch syndrome specifically in the UK, there’s a Facebook group called Lynch Syndrome UK.
So yeah, there’s lots of people online that you can talk to or just read their experiences, but that does bring me on to tip #5 which is:
Try not to Google too much, or to ask somebody, again somebody you trust, to Google things for you and just thinking about one time when I was Googling something about the Whipple surgery that I had and it was just quite practical, a question that I had that I wanted to Google. And Google really did me over because Google has that little “people also ask” section and it was something like “people also ask what is the prognosis for somebody who’s had whipple surgery?” Or what is the projected life span after Whipple surgery. I can’t remember the exact wording, but yeah, it was just like, this is not a question that I wanted to ask or that I wanted the answer to, a horrible thing. When I’m just looking for some kind of practical after surgery advice on something quite innocuous to be then faced with this really heavy question that I did not ask and did not want the answer to. So thanks Google. So yeah, the Internet can be a dangerous place for people.
So if you’re looking for potentially sensitive or worrying answers, I would say maybe get somebody else to Google that for you and I’m lucky that my partner and my best friend to do that without me even asking.
#6 is to face your feelings and try to address and interrogate them, and obviously, do this with caution and if it makes you feel worse, don’t do it. But sometimes, feelings for me, they feel really big and unmanageable because I’m not really sure what the feeling is and I haven’t looked at it properly and addressed it. I just know that it feels really bad.
And it’s kind of there at the back of my mind and I’m not really thinking about why it’s there or what it means, so just to look at the feeling properly and sort of sit down with it and think okay, how do I feel?
For example, maybe you feel scared or anxious.
And why? Why do you feel like that? What is the thing that I am actually afraid of?
And really facing, what is it that I think is going to happen? You know, what is the worst thing that I’m expecting to happen?
And then the key thing, I think, is to try to counter that and follow it through so thinking okay, so this is the thing that I’m really worried about happening. What if it does happen?
Actually really face it and say, what if this happens?
How would I handle that? What would the process be? How do I think things will play out and how will I deal with that?
And hopefully by doing that, you’ll come to some kind of conclusion that, okay, this thing that I’m scared of, that might happen – actually, If it does happen, I have these tools, these people, I can talk to people with these experiences. I have this medical team that can help me and you know, that can really help to minimise that fear. Once you know what that fear is based on and what you’re worried about happening, then you can think, how can I help myself in that situation? How can other people help me? And maybe that can make the fear feel a little bit smaller.
But of course, that does come with the caveat of if it’s making you really feel worse and not better then stop, because you know these tips come with the caveat of, well, it’s not necessarily going to be for everybody.
Which leads me onto my tip #7, which is to practise self care and I don’t mean practise self care by moisturising or having bubble baths or anything like that, but it’s to practise self care by checking in with yourself. And thinking about what you’re doing, being really mindful of how is what I’m doing right now making me feel. So going back to Googling things, maybe you’ve Googled, maybe you’re reading other people’s experiences. How is that making you feel? Because at first it might make you feel good, you might be reading good experiences, but then you might find yourself going down a rabbit hole of, you know, negative experiences and thinking Oh gosh, what if that happens to me? And then your anxiety level could be increasing, so it’s just checking in with yourself and thinking, OK, is this making me feel good or is this making me feel worse? Is this helping or not, and if it’s not, then of course stop, try something else.
Go back to tip number one and keep yourself busy and distract yourself.
Practise self care by just keep checking in and making sure that what you’re doing, the method of coping that you’re using right now is helping and not harming further.
And then #8 is to:
Tell other people what you do and don’t need, and that’s just going back to, for example, if you’re talking to somebody and they’re bringing up this problem or this waiting for a diagnosis when you’re not ready to talk about it, maybe you are trying to keep yourself busy and distracted and then somebody bringing it up, you know?
It’s just again advocating for yourself in that situation, and to say I really don’t want to talk about this right now. And just to tell people what it is that you need.
So those are my 8 tips then for coping while you’re waiting for a diagnosis, I’m just going to run through them again briefly, just for other people who’ve joined us since the beginning.
So the first one is to keep yourself busy and distracted during the time while you’re waiting for your test or you’re waiting for the results of a test.
The second one is to advocate for yourself within the medical system, so to chase up any late communication and to make sure that things are going at the speed that they need to be and that things are going as they should.
#3 is to remember that you are making a choice and it’s a positive choice. Every time you go to a doctor’s appointment or listen to what they have to say or take yourself for a scan or follow through with investigations or with taking medication or whatever it is. Remember, you’re making a choice. There’s always a choice – you could bury your head in the sand, but you’re not, you could run away. But you’re not. You could ignore all the letters and all the phone calls, but you don’t because you’re making an active choice. A positive choice for your health and you are helping yourself in that way to feel more in control of the situation. It’s a situation in which we have so little control, so we need to grab that control where we can.
Tip #4 is to talk to somebody – that’s friends, family or people online who have had similar experiences.
Tip #5 coming from that, is to try not to Google too much and have somebody else Google things for you if that’s going to be helpful.
#6 is to face your feelings, address them, interrogate them, follow through scenarios to think about logically about how something might play out and how you can help yourself with positive steps and how other people can help you to try and make those fears or whatever your emotion is feel a little bit smaller.
#7 is to practise self care by checking in with yourself. How is reading other people’s experiences, for example, making you feel? Do I need to stop doing this?
What’s helping, what isn’t helping and just to be mindful.
#8 is to tell people what you do and don’t need. So if you don’t want to talk about it, it’s okay. If you need someone to take you to an appointment, you know, tell them what whatever is going to help you to take a little bit of stress out of the situation. Tell somebody, talk to somebody.
And then tips for caregivers. I have five quick tips for caregivers. The first one stems from this. You know, if people want to talk about it or not, so it’s just listening to people but not pushing them if they don’t want to talk about it because it’s what the person needs and not what the caregiver needs.
So listen to what they have to say, but don’t try to push them if they if they’re not ready to talk about it. Some people just aren’t ready yet.
The second one is again to Google stuff for people. So if you feel like you can face it, have a look online, see if you can get some information about the diagnosis or what the situation could be so that then you’re armed with information if they have questions and you can help people feel better in that way. But again, you need to practise self care for yourself as a caregiver, so you know, if it’s if it gets too much, if what you’re reading isn’t positive, you know a lot of the tips do apply to care caregivers as well, so if something is making you feel bad again, stop. Don’t do it.
Taking people to appointments. Tip #3. I find it really helps when my partner takes me to all of my appointments because hospitals are really busy. It can be really difficult to find parking. If you’re late, there’s traffic, if somebody dropping you off, then you don’t have to worry about parking, they can just drop you off at the door and then if you’re late you can just run to the appointment and then they can worry about where to put the car.
#4 is to be the positive and logical voice of reason, so again, this taps into Googling things and having a little bit of information so that you can do the thing that I really value from my partner. So my partner tells me that everything is going to be okay, but when people say oh yeah, everything is going to be fine, don’t worry, a lot of the time it is just empty words and it’s not helpful because it’s like well what do they know? They don’t have a crystal ball. They’re not a medical professional. What do they know about the situation? Yeah, everything is going to be fine, but when my partner does it, it’s backed with facts or some kind of logical reasoning. So he’ll say everything is going to be fine because you haven’t considered this point that I need to make to you. That puts things into perspective. Or something that can be explained in this logical way so he’s very positive about things, but his positivity is backed up by some kind of logic and reasoning or something that he’s read. Which I find immensely helpful. So if you can be that positive voice of reason for somebody, I think that that’s really valuable.
And then #5 is really to just help people to keep busy and to have treats. And you know, just try to keep busy and and take away some of the stress of waiting because waiting is just often the worst thing when you can’t do anything and you can’t chase anybody yet because the time isn’t up yet for whatever thing was supposed to happen, like the results of the diagnosis. Or whatever it is. So you know, plan trips, plan nice things together, plan meals out or cook for them or go to the cinema or whatever it is. Just plan something nice to do together while you’re waiting or you know, just go on a nice walk or play a board game or you know, just something simple. Just whatever it is to try and keep busy.
So those are my eight tips for people coping with waiting for a diagnosis and and five tips for caregivers as well.
And as I say, this is kind of from the background of of me having Lynch syndrome, which is a genetic condition that makes people more likely to have different types of cancers.
So it’s written in the context of somebody contacting me and saying, oh gosh, I’m freaking out because I have to go for a test to see if I have this gene.
And yeah, I, I hope that these tips were useful for you and general enough that you can apply them to other situations or diagnoses and as well, maybe just for everyday life and everyday anxieties. You know, remembering to check in with yourself, to practise self care. Is how I’m coping right now making me feel good is it making me feel worse? How do I feel right in this moment?
Practising mindfulness – how do I feel? Forgetting everything else in the world, in this room right now, where I am in my physical state with the people I’m with, doing what we’re doing, there’s no threat in this room.
Do I feel safe and comfortable?
Am I OK right now?
Aand hopefully the answer is yes.
I hope you have a great day. Thank you for listening. I’ll see you again soon.