The Emotional and Mental Impact One Can Experience After Being Diagnosed With Lymphoma

Presenter: Katherine Lodge
Guest: Jodie Guerrero
Guest Bio: Jodie is a blogger, a speaker, writer, and she runs a successful website, Jodie’s Journey. She’s also a health consumer advocate with her business, Consumer Consultation.

Segment Overview
Jodie is here to share with us the emotional and mental impact she experienced after being diagnosed with lymphoma.

Transcription

Health Professional Radio

Katherine Lodge: Thank you for listening to Health Professional Radio. I’m Katherine, and today our guest is Jodie Guerrero. She is a blogger, speaker, writer, and has a successful website, Jodie’s Journey, and is a health consumer advocate with her business, Consumer Consultations.

Jodie is here to share with us the emotional and mental impact she experienced after being diagnosed with lymphoma. Thanks for coming on our show today, Jodie.

Jodie Guerrero: No worries, Katherine.  Thanks for having me.  It’s lovely to talk to you and your audience.

Katherine: Likewise.  And just for our listeners that are not familiar with your journey, Jodie, you had been diagnosed with lymphoma, twice actually, and currently you’re now in remission, so that’s great news.

Jodie: Yeah.

Katherine: It’s been a long journey, and no doubt, it’s taken a toll on you, both physically and emotionally.

Jodie: Yes – and mentally, too.  And that’s the one thing that we don’t hear a lot about, in our communities, that still, even to this day, tends to be a stigma – about talking how we cope with the mental impact – the emotional and the mental impact of an illness or a diagnosis, which can be absolutely heartbreaking not just for the patient but for the family and friends around them.

Katherine: Exactly.

Jodie: We just don’t hear about it, because it’s almost still perceived as a private matter.  And some people who go through a shocking diagnosis or discover they have a disease, whether it’s curable or incurable, tend to focus on [indecipherable 01:54], you focus on surviving.  So, your brain almost sort of goes into battle mode, and this is what happened with me when I was diagnosed.  It happened over one weekend.

So, I was working in a full-time job, I looked normal, and I looked well.  I was battling physically and emotionally, but I kept putting those feelings aside because I had to keep going for my family and my kids and my husband, and basically I was in a full-time job.  And you just can’t sort of get up from your job and leave for no reason.

You can’t just sort of say, “Well, I feel sick.  So, I’m going to stop.”  You have to have a reason or a diagnosis, and this is what I was fighting for.  When I finally did get the diagnosis, immediately, my brain went into battle mode, and my body went into this … so that effectively, you forget everything the doctors tell you, because you’re in shock.

Katherine: Yeah.

Jodie: Second of all, you go into this mode where you have to battle for your life, and you have to try and stay positive and remember that if you don’t battle and you don’t fight against this disease, not just physically but mentally and emotionally, you’re not going to win.

So, it’s this feeling of like, “I can’t think about how this is going to impact me emotionally and mentally.  I just have to battle it.”  It’s not until you finish all your treatments that everyone starts partying and saying, “Oh, great!  You’re in remission!  It’s fantastic!  How exciting!  You must be so excited!”

Katherine: Yeah.

Jodie: But most people who go through this experience where they have a chaotic or awful disease, and they go through chemotherapy or they go through a long treatment protocol, at the very end, they don’t feel like having a party, and they don’t often feel like celebrating.  They feel like they’re just completely wasted and completely exhausted from the experience in every respect, their physical, mental and emotional bodies …

Katherine: Right.

Jodie: … or their being just can’t sort of cope with the whole thing.  Suddenly, your brain goes into this mode where you’re thinking, “Ah!  Okay, now, physically I can relax.  Now, I can soak in mentally and emotionally what happened to me.”  And it wasn’t until, say, two months after I had been declared in remission that I started to feel like I was forgetting a lot of things.  And this happened over a period of one week, where I would look at the fridge, and I would look at it and go, “Okay, I know I need to drink and eat something, but I don’t know how to do it.”

Katherine: Right.

Jodie: And it was a period of time where I started to forget what I needed to do in order to keep myself healthy.  I forgot that I needed to drink water and I forgot that I needed to eat food, and I was just in this sort of … almost like my brain was starting to forget to how to care for myself.

And it was one morning when I woke up, after that particular week, and I looked at my toothbrush and I thought, “Now, what am I supposed to do with this?”  And I knew, well, I couldn’t figure out how to brush my teeth, that there was something wrong with my brain.

Katherine: Yeah.

Jodie: And it was almost like I was having a mental breakdown.  It was happening very slowly to me.  After that whole experience of what I’d been through, and I’d been in a full-time job, I’d been diagnosed with an incurable form of lymphoma.  I had gone through awful chemotherapy, I’d lost all my hair, and I felt terrible and looked terrible, and the shock of everything, the delayed response …

Katherine: Yeah.

Jodie: The body and the mind went into this shock period.  And I remember calling my parents and saying, “Mum, I can’t get … there’s something wrong with my brain.  I can’t figure out how to brush my teeth.  I don’t know how to drink water.  I can’t figure out how to feed myself.  There’s something wrong with me.  I’m forgetting everything.”

And so, they took me straight to my psychiatrist.  My psychiatrist had been talking to me the entire time I was in hospital.  She would come in and check with me, and she’d say, “Oh, you know, are you alright today?  Is everything okay?”  And I was crying during the entire period, but I kept telling myself I was strong enough to resist depression and I was strong enough to resist anxiety, and I was a [indecipherable 06:46] person and I didn’t need to …

You know, I could just resist this if I wanted to.  But it was something that just came on by itself, and it was something that I had no control over at all, even though I thought I was strong enough to control it.  And so, finally, after I went through a couple of weeks of not really understanding what was happening with my brain, my parents took me to my psychiatrist.  They said to me I had what they call clinical major depression mixed with anxiety.

Katherine: Yeah.

Jodie: It was then that I was diagnosed, and finally, I understood why I was crying all the time.  Finally, I understood why I felt down and always tired constantly, and I was starting to forget things, and I couldn’t care for myself.  I realised that that was depression.

Katherine: Yeah.

Jodie: And I realised that it was mixed in with anxiety, and that’s why I was crying a lot.  And all these symptoms were delayed.  So, it took a couple of months for me to really understand what was going on with me, and for me to actually admit that there was something wrong.  Because I didn’t want to admit.  I wanted to just stay in denial that I was okay.  And I guess that’s part of the stigma, too, that everyone puts on you.  Well, it’s not just that, but society in general wants you to continue to be positive, and I think all of us, when we go through a difficult circumstance, we often hear people, friends and family say, “Be positive.  Stand strong.  Stand firm.  Live strong.  You’re going to be okay.  Don’t say anything negative.  Don’t …”

And often, what I found over the years – and you learn a lot about human behaviour from your friends and family and how they react around you.  But often over time, you’ll realise that they’re saying that because that’s how they cope with your situation, rather than how you cope with it.  So, that’s their way of calming you and also calming themselves.

Katherine: Sure.

Jodie: So, that was my journey into depression and anxiety.  I started on medication and immediately I felt great.  It really changed the way I felt.  And over the years, as my health has changed over the years, I’ve had to increase my medication at times, and sometimes we’ve changed my medication.  But as long as I’m on both meds and I’m looking after myself through my doctors, I am well, and I am focused on staying well.

And so, it’s not always something that you completely come out of.  Sometimes it might be a life-long thing, and sometimes it might be a temporary thing.  But it’s important to continue to talk to your doctor about it.

Katherine: Yeah.  And I wanted to ask you – because you mentioned that when you started going down and you reached out to your parents and said, “I think I need to go back …”  It sounds like you already had a psychiatrist.  Now, was that something that the hospital provided for you?  Or is it something that you needed to seek out for yourself?

Jodie: When I was in hospital, having my lymphoma treatment and going through the whole treatment, I cried a lot.  And of course, when you find out that … in my case, I was only 35, and we had just bought a house, and we had two little kids, a new marriage, and we … it was a shock.  It was an absolute shock.

And not only that, but I had a disease that was an old person’s disease.  So, it wasn’t meant to be in a young woman’s body.  It was something that a 70- or 80-year-old gets at the end of their life.  And then finding out that it was a disease that is generally incurable, it was just a horrible shock.

And so, I continued to cry all the time when I was in hospital.  Cry, cry, cry, cry.  And I just figured it was just part of the whole shock of what had happened to me.  But actually it was probably more part of the depressive illness that came on, and they would often send the psychiatrist in to me at hospital, and they would talk to me about what was happening and do I need some medication, and I’d say, “No, no, I’m okay.  I’m okay.  I’m fine.  I’ve got people around me.  I’ve got people visiting me.”

And so, it was almost like, even though I had that resource there and I had those people willing to help me and medicate me, I was completely anti-medication almost.

Katherine: Yeah.

Jodie: I’m like, “I don’t want that stuff.  And I don’t need your help.  But thank you for coming, anyway.”  [laughs]

Katherine: Yeah.

Jodie: So, it was … and I think I’d also picked up some anti-medication sort of … you know, a lot of people, for some reason, are very anti-antidepressant, if you know what I mean.

Katherine: Yeah.

Jodie: And a lot of people in society say, “Oh, don’t take antidepressants!  They’re so bad for you,” and stuff.  But really, those antidepressants helped me a lot.

Katherine: Yeah.

Jodie: Brought me out of a really bad time.

Katherine: Yeah, especially the right dosage and the …

[crosstalk]

Jodie: Exactly.  A lot of people, they go through a depression or an illness or anxiety, and they take a tablet and they wait for … It works after about three or four days.  It’s when it really kicks in.  And they often start on a small dosage and work their way up.  But some people just give up after a certain amount of time because they’re not on the right dosage.

Katherine: Yeah.

Jodie: So, it’s important, like you said – the right dosage is really key, finding and working with your doctor on the right amount that makes you feel normal, so that you can get back to normal life and enjoy your life again.  That’s really important.

So, yes, I was provided with a doctor in hospital, and it was the right thing for them to do, although I rejected their help.  It wasn’t until after, when I really noticed the symptoms and I had this delayed shock response, almost like you said, like a post-traumatic stress disorder-type thing.

It was only until I really noticed the symptoms that I went back to them and said, “Yes, I think you’re right.  There is something wrong with my brain.” [laughs]  And yeah, so, I did have that personal supply for me and I had a contact.

So, for other people in the community who may not have a psychiatrist set up for them or that kind of contact, it’s important, I think, to ask for help from their loved ones or their family or their friends who might be concerned for them, to try and find someone who can help them.  First call would be the GP.

Katherine: Yeah, I see.

Jodie: And everyone’s GP should be able to talk to the patient about their depression or anxiety, how they’re feeling, and prescribe some kind or form of medication that can help them at least get some sleep, because often, depression-anxiety can affect your sleep,and you find it difficult to … if you’re not getting proper sleep, you’re not getting through your day properly, and that will make things worse.

So, your GP is the first port of call.  And then if you cannot get the right help through your GP, you’re not happy with that, you can ask for a referral to a psychiatrist really, who’s the person that will prescribe more focused medication for you.

Katherine: I see.  That’s really good advice.  Thank you for sharing that, Jodie.   I just wanted to ask you a little bit about family and friends, in particular, immediate family.  While you’re going through your treatment, you are in hospital, you’re going through emotions, you’re in a lot of pain, but you mentioned you have a husband, and at the time, your two children were quite young – at the time when you were first diagnosed.

They might have been a little bit too young to understand, but they certainly understand now.  How do you think your illness impacted your partner and kids?  How did they cope?

Jodie: My husband – I remember him crying about it, and he was in shock, too, because a lot of … just like the doctors that I’d tried to see, my family started telling me to be quiet about my symptoms, to stop talking about it.  Because I kept telling them I felt sick and that there was something wrong with me.

Katherine: Yeah.

Jodie: And I think they finally realised when I had to go to the ER and … I knew there was something wrong with my body and I needed help.  Finally, when someone listened to me and they were able to see the disease on a scan, my parents and my family, I think, must have felt terrible, that they had told me to be quiet about it and not to talk about it.

Katherine: Yeah.

Jodie: Because there was almost this perception that I was a hypochondriac, and that I was trying to get … that I might have been trying to get some sympathy or some attention.

Katherine: Or trying to find something that wasn’t there …

Jodie: Yeah.

Katherine: So it was a very long process for your diagnosis.

Jodie: It is.  Well, mine was eleven months.  And I knew that … I felt like I was dying, to be honest.  And I remember when I was at work, I would look out the window – and I was working in the city – and I would think to myself, “Well, at least I’m really close to the local hospitals.  So, if I pass out from feeling weak or tired or whatever, they can just get me there quickly.”  And that’s how I sort of felt.  I was really losing hope.  So, my family and friends, they all knew … I mean, at the time, I wasn’t on social media or anything.  It was kind of new back then.  It wasn’t until afterwards that I joined social media.

But my friends that I knew at the time, from church and just through my family, they all knew that I was struggling with these strange symptoms, and all of them were very, very sad when they found out that I had cancer, and that I’d not just … didn’t just have cancer, but I had extensive cancer, everywhere through my torso on the right side.

My kids were two and four.  So, they didn’t really understand.  They knew that “Mum was sick, Mum was in hospital,” but in terms of coping with it, I think my husband just tried to keep everything as normal as possible.  I remember he became sort of like a mummy-dad or sort of like a single dad almost, while I was in hospital.  The first time I was in hospital for ten weeks altogether.

Katherine: Wow.

Jodie: So, it was almost two-and-a-half months, I was in hospital from the time they discovered it till the time I was released.  And so, he became sort of like a single dad at home, and he had to just keep things as normal as possible so the kids didn’t feel as if their routines were disrupted.

So, it was a very difficult time for everyone.  It wasn’t just difficult for me, but it was, I guess … and people don’t want to tell you what their emotions are like, because they know you’re struggling yourself.

Katherine: Yeah.

Jodie: But I think for all of them – my parents, my husband, my kids, you know, even though they were young, it would have been a very disruptive and emotionally difficult time for them as well.  And it wasn’t until many years later that I really came to understand how difficult it would have been for them – not just me, but for them too.

You don’t think about those things when you’re trying to survive.  You just focus on what the doctors are telling you, and what you need to do to get out of that hospital.  And you know that people are upset around you, but there’s not much you can do about it.  You just try and be as happy and positive as you can, and take it day-by-day really, it’s the key, taking it day-by-day and not putting pressure on yourself, not putting pressure on your family.

And even though the doctors are telling you stuff that might not be very positive, or might not be something you want to hear, you have to sort of say to yourself, “Well, that’s what [indecipherable 20:09] evidence of what they’ve seen.  But that doesn’t mean that I can’t beat it in a different way.”

Katherine: Right.

Jodie: Often, doctors tell people who have an incurable illness that they’re incurable and that’s it, and they have this amount of time.  But that’s just what they’ve seen from the scientific data, that’s not what you can do with it.

So, it’s about knowing that you can do the best you can do, and try and beat it the best you can, and take it day-by-day.

Katherine: Yeah, excellent advice.  Thank you so much for sharing your story with us on the [indecipherable 20:52]

Jodie: No worries.  Anytime, Katherine.  Thank you so much for having a chat with me.