This transcript was extracted from the ‘Myeloma – Looking after your emotional health‘ video.

So now we are going to hear from Valeria Magowan, who is a counsellor with Cancer Focus Northern Ireland. And she’s going to do a talk on looking after your emotional health, emotional health. Thank you. Valerie.

Afternoon, everyone. just get the glasses on. Hope you’re enjoying the day so far. thank you, Amy, for the invite to come along and speak on your emotional health. So just a wee brief. If you don’t know who cancer focus are, this is just a wee summary, of who we are and what we do. You may remember many years ago we were called the Ulster Cancer Foundation and we changed our name.

I think it was back in 2011. So, eh just the next slide. Kerry, thank you. So these are, that statistic at the top is quite recent. Every day in Northern Ireland, another 37 people are told you have cancer. That’s amazing isn’t. and these are our five key areas of work. So our care services, which I’ll mention a wee bit later on.

There is a prevention cancer prevention team. We are very involved in campaigning, not me personally, at government level. and obviously our research is ongoing and our fundraising. But today I’m here to look to talk to you about looking after your emotional health. So, just the next slide there. I wonder what you think of this statement. recovering from a cancer diagnosis or in fact, living with a cancer diagnosis and its treatments is not just about your physical body healing, but it’s also about allowing the healing of your mind and emotions to take place.

And sometimes that can be just as hard. You know, when you go through the treatments, you go through the side effects, but often the emotional side is just as hard, isn’t it? so when a diagnosis comes along, there’s many responses, there’s many emotions that are triggered, many feelings. And I think it’s important to have those validated because each and every one is a very normal reaction.

You go from the shock maybe to the worry anxiety. What will this mean for me? For the family? The loneliness. Nobody understands what is this all about? Low mood, the fear, the anger and just the self-consciousness. And each and every one of those you may have experienced. You may have experienced some of them, but all of them are totally understandable and very appropriate when you receive a diagnosis.

When, just to mention stress. And the next slide there, when cancer comes along, obviously it brings a stressful reaction. But in life, before a diagnosis comes along, you’ll all have been dealing with other stress factors, as we call them in life, whether that’s financial worries, work worries, maybe caring for other, dependents in the home, relationship difficulties, new babies, pets, you name it.

There’s multiple factors there. And then cancer comes along and the rest of these don’t disappear. Then that becomes that you’re juggling a lot of stress. Stress in itself is actually quite healthy because we all need stress. I need a bit of stress to get up here today to do this. but the problem arises when the stress becomes long term or chronic, and you’re not putting in coping mechanisms to help you manage it, then it becomes bad for health, so and I will mention we’ll look wee bit later at some coping because I wouldn’t want to leave you for those coping strategies. But this is, this is a recent well, not recent. It’s a few years back, a Macmillan survey, some common psychological symptoms in cancer patients and percentages and just have a wee look at those and not going to read them out.

You can see them yourselves, but I’m sure you can identify with some of those, if not all of those. and we recognize, that these are emotions, things you will find challenging and you’ll struggle with when a diagnosis comes along. during during your diagnosis and your treatment stage, we notice that there are periods of vulnerability. Maybe periods along the way where those symptoms, those challenges will arise.

So obviously when you’re just diagnosed, whether that has been a shock or you’ve been suspicious, just you haven’t been well, and then your diagnosis comes along. So that is that is quite a period of, where you’ll experience a lot of emotions, confused emotions. Then treatment plan unfolds and you think, what lays ahead? Will I be able to cope with this?

What will it involve? How will it leave me feeling. finishing treatment as well? You maybe have finished treatment completely. You’ve maybe finished a period of treatment on your return on another period of treatment. But we often find in the counselling field, when you finish a period of treatment, that’s a key time sometimes for people access our counseling service, because you’ve got through kind of the physical attending the clinic every week or whatever, and then the emotions kick in.

What have I just been through? What does this mean? And you try to make sense of this tangled, thoughts in your head. Scan anxiety. I’ve been practicing to say that all morning, is also another one. I’m not sure if you’ve heard about that. Again, a very normal reaction. when people are waiting on dates for scans, then you wait on the results of scans, and that’s all to tell you.

Well, what what’s the diagnosis in the first place? How is the treatment working or has the disease come back? Have you relapsed? So scan anxiety new term perhaps, but a very common one. Worry and symptoms. So you develop a new symptoms. This something I need to report to the nurse or the doctor, or is it all right?

And you mull this over in your head. And again, that can be a very anxious thing, especially when you’re on your own. But as we reminded earlier, the support team was there for you and to contact them, obviously the fear of recurrence or the fear of relapse, it’s always that what if isn’t it? not the question that stays in your head?

So again, a very vulnerable time, perhaps given a poor prognosis. And that can be very stressful. what does it mean? What does it mean for me? What does it mean for the family? And just thinking about that. And then if with recurrence or disease coming back, so another wee quote. this is by, a clinical psychologist.

Cancer almost always brings bodily changes. It can affect not just how you see yourself physically, but also how you feel about yourself and therefore how you behave. So yes, the physical changes with the various treatments, medication, whatever, but that affects the mood, affects the emotions. And often then it’s like a chain and the domino effect. It affects our behaviors.

What we do or what we think, think we can’t do anymore. so yes, a lot going on. with your illness itself, various pressures as you go through your treatment. pain. I’ve heard a lot of people talking about joint pain this morning, a very common one. And that can can be stressful when you want to do things, you see the thing needs done and you’re just not as able.

The fatigue as we’ve heard, the occupational therapist talking about that can be very challenging. Even the trauma related to having received a diagnosis. You’re going along in the world, you know, quite feeling quite safe and secure. And then all of a sudden the diagnosis comes along can be quite traumatic. Relationships, family. Relationships. Relationships, work, work, colleagues, friends also can bring pressure along there’ll be another wee slide about that a few minutes. communication difficulties. How do I tell my family? How do I tell my children? What do you say? At what stage do I say it? And what language do I use? It’s very different to tell a five year old to a 15 year old, but even adult children, how to tell them, how to tell my parents?

Body image can take a knock as well. Various treatments, loss of hair. We again, you know, there’s many others there as well. Your whole physical appearance may change and sexual problems. So intimacy problems with your partner again that can be affected. And that is a very recognized, area that can be affected by many of our cancer treatments and just that sense of loss, loss of health, loss of change in body image, loss of a role in the family, loss of a job, and that sense of a loss of safety.

Again, as I said before, there, the fear of recurrence and fear for the future. How is this going to pan out? How will this be for me and my family, and that that sense of vulnerability when a period of treatment ends, when will the next treatment start? Or even for those of you maybe that are on a watch and wait plan at the minute, that can be very stressful as well. When will the bloods change and I need to start treatment? so those are some illness related. Just a wee slide on cancer and loss often in the counselling room as well. People talk about losses they’ve experienced and they like to talk through those. The loss of physical strength and well-being.

We all like to be independent if we can and do our own things. And then all of a sudden, if treatment starts, the fatigue kicks in and the pains, we perhaps feel not just loss of physical strength and not change in our wellbeing, the loss of independence, the loss of identity can change, both as maybe physically. Our appearance changes, but also the impact on our lives.

Can, you know, we may have to make changes and our whole identity changes. Who am I? Where am I going with this? Maybe, you know, having to change employment, reduce hours, take early retirement. Those are all changes. And they bring challenges in life. Loss of self esteem, just sometimes a loss of confidence facing in the world. Again I do have face people that that can be an area that takes a major knock as well.

Loss of trust in our bodies. Perhaps. You know, before this we thought we were doing well. We felt okay, we were getting on with life and then our bodies let us down. The amount of times I’ve heard that, how do we regain that again and trust in our bodies? Loss of life expectancy, loss of the ability to think of a future, loss of the ability to plan the next holiday, loss of the ability to plan the next family event and the loss of safety.

That’s a big one. You know, when we feel the rug has been taken from under our feet, and you’ll know yourselves, it’s not only you who have the diagnosis. There’s a big impact on relationships, whether that’s your partner, your children, your friends, your colleagues. but some of the things that you might find going on in relationships is that trying to protect others by not talking about it, I’ll not say anything.

She’ll not say anything. So it’s not getting talked about. And then assumptions are made and that can be very damaging. And so we would always advocate or try and keep open lines of communication, let each other know what you’re feeling, how it is today. If you need to say no, not today. But that doesn’t mean not ever. Other people’s reactions can be helpful or unhelpful.

Perhaps you’ve experienced that, people maybe you thought would have been there to support you and they disappeared. And others who have stepped up and have been really supportive. Often others would like to help, but they just don’t know what to do or say. So they’re they’re relying on you. Actually, I wonder, would you mind helping me with our could you collect that today so they’re relying on you kind of to guide them with that.

What might help you people I think like to be practical and like to help. Some people will be very good at listening and some others, as I said, would be, do you want me to put the bins out for you? Would that be helpful? But they need guided by you, so don’t be afraid to ask. Now is the time, to learn and just be as specific though.

Maybe this is our first journey with a cancer diagnosis as well. So they they need guided as well. So, ways to cope. thankfully I didn’t end it there and not leave you with some ways to cope. We’ve already heard today talk about it. It’s so important, to talk, to find a good confidant, to access counselling, to talk to your health professionals.

Whatever is niggling in your head, it’s important to talk to someone. Don’t go to bed with a restless head. and when you do talk about it, I think it it decreases the feeling of that isolation. I’m on this on my own. Nobody understands. Nobody’s interested. But when you start to talk to someone, actually, it’s so helpful. And bottling up stressful reactions or feelings isn’t healthy. It manifests itself in the body. So it is very useful to talk and to keep in touch. Often when you start your treatment or you know you’re dealing with the diagnosis, sometimes you can feel you’ll withdraw from those folk you would normally mix in with or your seeing. But it’s important to keep in contact either even by email, WhatsApp, lots of ways.

Now, isn’t there. And showing compassion to yourself. So if you wouldn’t say it to a friend, why would you say it to yourself? How would you treat a friend with a similar or in a similar situation? And just be mindful of yourself. Setting goals. Set yourselves wee targets. I always talk about baby steps. anyone that’s came to me in the counseling room, they’ll always remember my baby steps start with small things and then be joyful.

When you achieve something, because that gives you the confidence then to try more, to try other things. Moving on. The essentials of been covered probably today, trying to get good sleep. I know that can be a challenge. When you go to bed, the house is quiet and the mind starts to, you know, you’re overthinking. But good sleep hygiene is good, eating and drinking well, be careful with the caffeine intake after about 6:00, because caffeine is a stimulant and it tends maybe to keep some people awake. Challenge those negative thoughts. I always say, remember, thoughts aren’t facts. Sometimes we can think a thing and we can get all tangled up in our heads, but that might not necessarily be factual. So challenge the negative thoughts as soon as they come in.

If you notice them coming into your head, even write them down and tease them out. Has someone told me that’s or am I hearing this in my own head? And solve problems. So often I remember one man that came to me and he said, the brown letters just used to come through the door. The brown envelopes, and I used to pile them up on the table.

And then he would think, how am I ever going to work through this? So it was start with small do one a day, solve the problems as they go along, and then they don’t seem so overwhelming.

And develop new hobbies. Perhaps something you’ve always wanted to do or a new interest, or go back. Pick up an old hobby. Because when we’re focused on things, they prove to be a distraction from always maybe thinking of cancer or appointments or or health. So hobbies give us great joy, relax or meditate. We’ve been, reminded of that earlier as well.

Just that sense of calming the mind listening to music, walking in nature, listening to the birds, whatever finds whatever way you find helpful to still the mind. Because often our heads are overactive with our thoughts. Join a support group. I mentioned that in a minute, but find out what support groups are available. I know there’s a few advocates in the audience of support groups, so, I’ll mention that in the next slide.

Speak to a professional. So whether that’s your consultant, your clinical nurse specialist, access counselling, your GP, speak to a professional, be careful with Google. Google is helpful at times. But sometimes that can not be so good. And you find you’re going down a rabbit hole. Stick with your own diagnosis, your own treatment plan, and speak to the professionals that are supporting you.

So how can cancer focus help? Well, we have a nurse line, an information free phone helpline manned by cancer nurses and were available Monday, Wednesday and Friday mornings 9 to 1. And that’s for anyone that is affected by a cancer diagnosis. The professionals use that as well. There’s our counselling service and the counsellors in the Northern Trust operate out of Antrim, and they are also in Ballymoney.

I understand that the minute we offer art therapy, that can be 1 to 1, or it can be as a group and our group work programs. I’ll mention next slide with that on our family support. Our family support service is for anyone with young children or grandchildren, anyone where there’s a significant adult in the family who has a cancer diagnosis and you’re needing help, or just to talk about tips, how do you work with the children?

What do you say to them? How to explain maybe when I’m so fatigued and I can’t do what I usually like to do with them. And this we slide. These are two groups I’m involved in at the minute. So the myeloma support group, the group who were in the myeloma room earlier will have heard of this. We meet every six weeks, usually in the Ballymena area.

Myself and Kerrie, one of the clinical nurse specialists co-facilitate this group. And we have sometimes guest speakers along, but it’s also an opportunity for a cup of tea and to get to chat with others with a similar diagnosis. and we started back in October. We had our sixth meeting, I think it was last week. Kerrie and it’s well attended actually, so you’d be most welcome to that if you’re interested in it.

Lift the leaflet off our table. get in touch and I can put you on our mailing list to let you know of the dates. The exploring my cancer journey is also a group which I co-facilitate with another, colleague out of Cancer Focus. So it’s a smaller group of maybe 6 to 8 people, with mixed diagnoses, man and women.

And this is a, program, workshops. We take you through, say, five Tuesday mornings, five Thursday afternoons. It’s for five weeks a morning or an afternoon. And we look at life before a diagnosis came along. We spend a week looking at your diagnosis. What was it like to receive that diagnosis? Do you remember what it felt like? Do you remember what went through your head?

We look at treatment. What was it like receiving the treatments and the side effects, and we look at, living life after treatment has finished, the impact of side effects. And we look at self-care. We look at managing stress, and we look at moving on, setting goals for yourself. And again, if you’re interested in that, there’s leaflets on our cancer focus table.

But finally, remember, cancer may cause you to look at yourself differently and challenge you beyond what you ever thought was possible. But remember, don’t let it define you. There’s more to you than your cancer diagnosis. It’s part of your life, but not your whole life. Thank you very much.