In this episode, I’m talking to Rochelle who is amazing at articulating her cancer adventure in a way that’s universal. So even if your experience is different, you can still find so much that you can relate to! In this episode, we cover:

  • The bombshell of diagnosis and the alien reality of cancer
  • Why trust in your specialist is critical
  • Why some people are the rock of support (and why some people drop off)
  • Ups and downs of chemotherapy
  • The importance of connecting cancer experience
  • Emotional ebbs and flows during cancer
  • The lost art of listening


Cancer Connect

Cancer Council Victoria

ThinkHatch Marketing & Communications

Full Transcript

Joe:                 Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer Podcast.  Right now, you’re going to hear from Rochelle, who is a cancer survivor and what’s really amazing about Rochelle is that she can articulate what this cancer adventure has been like for her in a way that’s universal.  Even if your experience is different, you can still find so much that you can relate to.  I really hope that we can find an hour or two with Rochelle somewhere down the line because there’s just so much to unwrap.  For now, enjoy.  Rochelle, thank you so much for doing this.  I’ve been really looking forward to it.  First of all, tell me, how did you react when you found out that you had cancer?

Rochelle:         Obviously, there was a huge element of shock.  My symptoms were nothing more than a shallow cough, a reasonable amount of weight loss and a little bit of exhaustion.  Given that I had a new-born son, weight loss during breastfeeding was very normal to me, exhaustion is obviously part of the new-born package and I am prone to coughing and throaty-type illness, generally speaking.  I don’t get sick very often but if ever do, it’s normally a cough.

I really didn’t notice.  I think the shock of not actually feeling particularly unwell and then discovering, as a gross optimist, I think I told you earlier that I’m terrible optimistic, discovering something as significant and severe as cancer, as a diagnosis was shocking.  Almost a little bit unbelievable.

Joe:                 When you say unbelievable, how long did this feeling last for?  Did it change?

Rochelle:         My father is a medic.  He quickly diagnosed me.  I often joke that he thinks he’s like a diagnostician, like Dr.  House from the TV show.  I think he semi-diagnosed me and sent me to a doctor and as soon as I saw her, she sent me for a CT scan and shortly after that, a biopsy.  I knew very quickly that something was going on, but no one actually had used the C-word, so I didn’t actually understand the severity of what I was being tested for or what was suspect.  I think when she then called me in on the morning of my birthday.

Joe:                 Oh no!

Rochelle:         Yes, 8:30am, to say, “Listen, Rachelle, you’ve got Hodgkin’s lymphoma.” That shock was probably the result of just really not having any understanding that that’s what was potentially on the cards.  As soon as I saw the oncologist the next day, and he told me my odds and told me my treatment plan, shock really dissolved almost instantly into, right, action stations, let’s crack on, we’ve just got to get better.  The shock didn’t last very long for me.  I think it possibly lasted a little bit longer for my partner and my family.  I transitioned very quickly into, I just need to get through this.

Joe:                 Yes, good on you, because you’re completely unprepared when it happens, right?

Rochelle:         Completely unprepared.  Also, I’ve not really been to hospital, I’ve not really ever been unwell in any significant way.  I’ve never had much involvement with the medical profession.  Part of the shock is not only, oh my goodness, I have cancer, which is surely something that happens to other people.  Part of the discomfort initially is also, and I’m being scanned and I’m in a hospital and I’ve never had a biopsy before and I’m seeing doctors that I don’t know, who are pretty much taking control of my life.  That’s comfortable and very unfamiliar.  Yes, you’re correct.

Joe:                 Yes, it sounds like it was incredibly overwhelming.  How did you transition from that moment of shock to go into, as you say, action mode?  What sort of things did you do and how did you plan your life around it?

Rochelle:         I think I transitioned from shock into action mode an enormous amount due to my character.  The fact that I am quite positive, I feel very comfortable taking control, generally speaking, in life.  That was my natural default.  I also think that I chose to completely trust my oncologist and the medical team who were advising me.  I could have decided not to, but he told me my odds, so I was 75 percent going to be fine, 25 percent not.  I was determined to be in the 75.  I didn’t start searching Google and looking online and trying to find answers.

I think I just believed.  Later on, I did start to do a bit of my own research, but pretty much trusting in the advice I was being given by my lead oncologist, allowed me to settle into, okay, I assume he knows what he’s doing.  If I just listen to what he says and get through this, then I’ll be fine.  It didn’t serve me to hold onto the panic or the distress.  I luckily avoided anger, so I know a lot of people get very angry and a lot of people have talked to me in the past about: Why me?  Why is this happening to me?  This is so unfair?  I don’t know how I avoided that, but I didn’t experience that.  I did experience that this is very difficult and uncomfortable and later on, sad.

Joe:                 Absolutely.  You mentioned trust, that’s such a key component, isn’t it?  I know that when I got diagnosed and I went to see my oncologist, the fact that this was a person that I felt I could trust, I think it was even a conscious decision for me, it really helped me to go right.  This is happening, there’s an action plan, I know what to do and I can trust this person to help me make decisions.  Was this like a conscious decision for you, as well?

Rochelle:         Yes, I think it was conscious because it’s quite unnatural to trust an unknown to the level that we are forced to, at that stage of things.  Yes, I think I did decide to trust him.  He was very clear in the way that he explained my diagnosis, my prognosis, my treatment plan.  He wasn’t amazing at accessing me, perhaps, and what mattered to me as a person or as a young mum or any of those types of things.

                        He was, in part, sensitive to it, but he was certainly very clear, and I did have my doctor father at home waiting in the wings and backing up what I had been told.  I didn’t feel like I had a choice, to be honest.  I think the most challenging thing for me at the start was that I had to hand over my life and the running of my life and the major decisions in my life to others.

That I had to follow suite unless I had a very strong reason otherwise, and I didn’t in this instance.  Yes, the early day challenge for me was once the shock wore off was the relinquishing of control and the letting go and accepting this is how it’s going to be for a period of time until hopefully life goes back to normal.

Joe:                 Absolutely.  Was there anything that helped you along the way?  Did you make notes at all?  Did you bring someone to the appointments with your specialist?

Rochelle:         Yes, someone told me right at the beginning that aside from chemo-brain making things a little bit foggy, just the emotion and the exhaustion of going through the treatment, means that it’s sometimes hard to remember or to think on the spot.  Also, because I’m not used to seeing doctors, it’s an interesting powerplay or relationship, patient/doctor.  Someone said to me, it’s really important to write your questions that you would like to ask in your next appointment, as even throughout the week.

Leading up to go and see him, just drop down the things that you’re feeling you wouldn’t mind asking him and so I went into each appointment with some written questions.  If I had nothing else to ask, at least I referred to those.  Having said that, though, he was really adamant, don’t write everything onto your list of questions if there’s something really disturbing your or uncomfortable or physically difficult.  He was also very clear that there was time in between appointments to phone in.  The doctor had also said to me, people find it very handy to write questions and bring them in, so that’s what I did actually every appointment.

Joe:                 Yes, absolutely.  I know that it really helped me because I only started doing it after some time because I realized that every time I walked out of the oncologist’s office, I realized that there were about ten things that I had forgot to ask him.  I started doing it out of necessity almost.

Rochelle:         Yes, absolutely.  I think that’s why I got the advice.  It’s only once you leave, you think, I wish I would have asked about this, that, and the other.  Yes, that’s exactly the rationale for it.

Joe:                 What about your family, your friends?  How did they react?  Did they support you in a way that you wanted to be supported?

Rochelle:         My family was unbelievable.  Steven, my partner, was incredible.  My parents were absolutely phenomenal.  They did a lot for us to help care for our two young boys.  The boys were a blessing because a lot of people say, “My goodness, cancer with two young children.” There’s never really a great time to have cancer but actually in hindsight, the wonderful thing about the boys was whenever anyone looked at me with sad eyes all the time, the boys didn’t, because they understood but only – Harry understood nothing, he was a baby.  Jack was only two and a bit.

They may have sensed that something wasn’t quite right, but they were just beautiful little boys.  They just went on being themselves and there was something really, really comforting and refreshing about the fact that in their company, I wasn’t ever needing to react to what might be going on for them.  The innocence of their little smiles and those faces was actually really wonderful.  My family was incredible.  A lot of my parent’s friends were unbelievably supportive and aunties and uncles.  My cousin and his wife were incredible.

Just coming and helping and not even asking if they were needed, just making a regular visit that was just so comforting and also, just lovely to be in their company.  Friends of my mum’s and my dad’s cooked constantly.  It was wonderful to be constantly fed.  There were a few dishes that I can’t even make in my own home now without thinking of those people who made them for me all the time.  Some of my friends were just amazing, amazingly supportive, just to be there and to listen and to talk and to send love.  Others also made food, some came and took my son and I out to play each week.

Sometimes they just came and sat by my bed when I was feeling pretty crappy from the chemo.  Interestingly, I think we’ve spoken earlier about the fact that it’s not always the people that you necessarily expect.  There were also people who out of nowhere I would never have anticipated were so phenomenally kind without any expectation of acknowledgment or gratitude, just who were there.  Just doing really kind, thoughtful, helpful, and regularly contributing.  Then there were others that we talked earlier about, also, who potentially do some of what they do for a bit of accolade.

That’s okay, too.  Different people are motivated by different things.  Yes, I felt unbelievably supported, even though a lot of the time, I kind of just wanted to go inside and just sort it out myself.  There’s a huge amount of support received but there’s an isolating experience to the cancer experience, I think, to some extent, as well.

Joe:                 I know that when I was going through this experience and when I had those people in my life who I believe just completely disappeared or just dropped off the radar.  I know that I felt incredibly angry for those chunks of time.  How did you deal with those emotions?  Did anything like that come up?

Rochelle:         Yes, I’m the daughter of a psychiatrist and psychologist, so we spend a lot of time understanding why people do the things they do.  I suppose I naturally excuse people for behaving the way that they behave.  It’s to completely understand your experience and that feeling of disappointment, almost, as much as anger.  I think the reality is some people just don’t know how to respond.  They’re not sure what the right thing to do is, they’re not coping necessarily in themselves with the fact that they might even be distressed about the fact that you’re unwell.  That sometimes causes inertia.

A lack of action.  I’m so frightened, I don’t know quite what to do, so I’m just going to freeze and do nothing.  In actual fact, it’s almost always better to say, hi, I don’t know what to do but I’m caring than it is just to do nothing.  I think that’s why some people get angry and a bit disappointed because the people who they may expect can step up, sometimes just can’t, then out of the woodwork come these others who you least expected who can just completely nail it and know exactly what the right thing to do is.

Joe:                 I also had exactly the same experience where some people are completely natural and giving you the support that you need, and it feels very natural and real and authentic.  Some people, the thing for me that was the worst after completely ignoring the whole thing, were people who would come in and say, “Just let me know how I can help.” That was, for me, infuriating, because I was like, not only you’re just putting this on me, right, because now I have to come up with a way to ask you for a favour.

Rochelle:         Yes, that’s I think what I was alluding to before.  It’s not always easy to know the way in which to offer support.  Sometimes just doing and contributing in the best way that you think you can is more of a help than expecting the cancer patient to try and work out exactly the way in which you can assist.  The funny thing on the food front for us was a woman that I’ve known my whole life did a lot of cooking for us, she’s an unbelievable cook, so it was great.  I joked with her one day, as she was visiting, I was feeling really rubbish from chemo.  I wasn’t really in the mood for seeing anyone, but I let her come in because she’s just like an aunty.

She said, “Well, tell me what’s going on, how are we on the food front?” I said, “I can’t even hear the word, let alone smell it.” She said, “Okay, let’s just make sure…” and she put the word out, she doesn’t want osso, so don’t make it.  I think it was just because it’s easy to freeze, so I got a lot of the same dishes.  It was only with her that I could joke and laugh.  The humour with which she took it on and directed traffic almost on my behalf for meals to start to be the ones that would suit my pallet, or that would not be osso bucco for a period of time.  I think, yes, I think you’re right.  I think it’s hard to do the knowing.

Maybe even asking the carers rather than the person who’s going through cancer.  Do you know what the most helpful thing I could do is?  Also, to some extent, I found it really hard watching the impact of my cancer on the people around me.  When I talk about the people who were incredibly kind and supportive, they weren’t always actually in touch with me.  Some of those people who just incredibly kind and supportive to Steven and to my mum and dad.  They needed support, too.  It was really exhausting.  There were other ways that you can help rather than feeling like you need to really access the patient.

Joe:                 It’s crazy, isn’t it, that sometimes your partner, your parents, your family, sometimes they’re more impacted by this even than you are?

Rochelle:         Yes, it’s a very hard conversation to have a lot of the time.  There were aspects of what I went through that I thought, aside from the physical symptoms of chemo, it was easier on me than it was on them.

Joe:                 Sometimes they get overlooked because they need support, as well.  Do you think they had the support that they needed to be there for you?  I guess all the focus when I was going through treatment, I guess the focus is on me and as much as I love to be the centre of attention, but at the same time, they need help as well.  Do you feel that your partner and your parents, did they have the support that they needed?

Rochelle:         I think they supported each other a lot.  I think they also had some significant others in their experience of my cancer, who they would say similar things to what I say.  There were some standout people just were supportive and kind and considerate beyond measure.  Then there were others who perhaps didn’t step up but really had not wherewithal to know what to do.

Joe:                 Yes, it becomes a whole community thing, doesn’t it?

Rochelle:         Yes.

Joe:                 Rachelle, I know that you have your own marketing business and it must have been a real challenge keeping up with all of that, when you were facing cancer.  What was it like and how did it all work out?

Rochelle:         It was lucky in a way because I had just had Harry, my second son, I was off work.  The business, because it’s my own, and because a lot of the client service was my own, the business wad wound down to just what the people who work with me could manage.  There wasn’t a huge amount that I was supposed to be involved in at the time.  It’s like I was on enforced maternity leave, really.  I took the time and I didn’t really think about work.  The impact mostly was I possibly didn’t start to build up the client base again as quickly after having Harry, as perhaps I would have.

I just gave myself a little more time to get well and recover before I decided to really get back into the full swing of work.  It’s far more complicated for a lot of other people and certainly, people that I’ve spoken to in relation to time off and loss of income and the impact of cancer can be immense for many others.  I was in that little maternity leave zone, so when the cancer treatment phase hit me, it was when I wasn’t working particularly anyway, so it was alright.

Joe:                 Yes, that’s good to hear.  Cancer is very tough to deal with mentally, as we both know, because you’re constantly in between treatments and you’re waiting for results and you’re waiting to hear from your specialist.  Did you feel you were angry and frustrated and just overwhelmed, not knowing what to do with it all?  Is there anything that helped you to be more positive?

Rochelle:         I think I’m naturally very positive.  Positive probably wasn’t such a problem for me.  I distinctly remember, though, phases almost, of my chemo, so I’m ten years all clear.  Even ten years on, I can almost remember the difference between chemo one, chemo two, chemo three.  It was definitely an experience and I don’t love using the word “journey” in this space, but it sort of was to this extent.  Without any specific training and mindfulness or meditation.  I think I went at times into almost this meditative state.  When I was feeling really knocked about by the chemo, which, as we know, that’s accumulative.

The first chemo, I was like, woo, I was still on holidays and I just had a little afternoon nap.  When I’d had my first chemo, I thought, “I am just one of those freak humans.  I’m a superstar.  This is going to be fine.” Then I had the second one and I went, ah, okay.  Then I had the third and I was smashed.  I think the reality check of it’s not as easy the third, fourth, fifth, sixth, seventh time as it is the first time.  Some of it was just lying still for long periods of time, which is super unnatural for me.  Being incapacitated, I couldn’t watch television, I couldn’t read.

I went through stages of bright lights and a lot of noise being quite uncomfortable.  Only or specific days after chemo but it meant that there was almost no stimulation that was tolerable.  Then all of the stomach and internal discomfort from poisoning.  It was digging deep into reserves of calm and resilient and patient, that this was hugely uncomfortable and physically distressing, as well as emotionally distressing.  I had to just get through it.  Upon reflection, the only explanation I can give is I did just go into this blank space, where I tried to focus away from the pain, I didn’t panic about the future and I tried not to dwell too much on exactly what was happening to me in relation to the cancer.

I just had to let time pass.  Those were possibly the most challenging days and I remember having a couple of really distinctly disturbing, almost uncomfortable – they weren’t hallucinations, I don’t quite know how to describe it, but it was where my mind and my brain was really smashed by the chemo and I wasn’t able to think, and I wasn’t comfortable in my thoughts.  I got through that and it didn’t come back again.  That was probably chemo three.  Then chemo four was alright, I had the physical discomfort, but my mind never went into that place again.  I think it was just from keeping myself calm, and a little bit distracted.

Joe:                 How did you do that in terms of your daily practice?  Would you get time for yourself to go for a walk?

Rochelle:         I tried to go for walks when I could, just gentle walks.  You know?  Can you imagine it’s like an old person all of a sudden, my body was unable to do a lot of the things that it used to do?  I’m normally very fit and active and healthy, so gentle walks.  Sometimes we got these two fold-out chairs for the garden, which seem like the simplest thing.  Steven, my partner, went and bought them.  Just sitting in one of those with a cushion and just letting a bit of sun shine on my face every so often.

We had a big tree in the back garden, we’d just sit under it.  Just being outside, having Harry play around me or just being with one of the boys.  Even if they were just pottering around or he was playing on a play mat.  Just having out with them was really rejuvenating to some extent.  I had conversation, I had people in the house.  I don’t remember being completely isolated to my home, but I also really don’t think I did much else.  I can’t remember any specific major outings.

I don’t remember socialising hugely during the time of my treatment.  It was just gentle, enjoying a bit of human contact and mostly just staying calm and quiet.  There was a lot of quiet time.  Much more quiet time than I ever have in my real life nowadays.

Joe:                 Absolutely.  Is there anything in hindsight that you would have done differently in terms of how you approached treatment?  The time for rejuvenation, having your own space?

Rochelle:         I don’t know if it would have been possible, but I wish I had journaled.  I’m not a regret person, I don’t tend to hold onto regrets, but there is a little part of me that wishes I had written during my treatment, during my cancer experience and throughout the treatment phase.  Partly because I wish I had a bit more clarity around a few things.  Part of the side-effects of being an optimist is you block out very negative experience.  There are parts of what I’ve experienced that I actually genuinely can’t access.  My protective mechanism mush has just shut that down.  I feel a little bit like I could more accurately recall certain aspects of what happened.

Also, I think I feel like there would be value in the sharing of it.  I suppose I could just sit down and write upon reflection, which is challenging because it takes me back there and there are days now where I’d rather not have to go dig deep back into what that was all like.  Also, I think it’s a bit clouded by being ten years out the other side.  It’s possibly not as accurate as it would have been.  I wish I would have journaled but I’m not sure what else I really could have done differently.  I think I celebrated the milestones reasonably well.

I made my oncologist sign a five-year all-clear certificate that I made for myself, which he thought was hilarious and I only got him to do it because I swore that I’d never use it against him in a court of law.  I took chocolates back to the oncology ward for all of the chemo nurses.

Joe:                 Yes, we did the same.

Rochelle:         Yes, they were like angles descended from another planet.

Joe:                 Yes, absolutely.

Rochelle:         That was really weird because I was busting to go in and my Wednesday was my treatment day, so I knew that most of the ones who I had seen, if I came two Wednesdays in a row would largely be there based on their shifts.  Having to go back there two Wednesdays after, I didn’t need to be there anymore, was hell.  I went back and took them chocolates.  I think I loved that I did that still.  It was a really funny and fun half an hour.  I think, no, I managed myself as well as I could have.  I think I showed appreciation for the people who loved me and who I cared about and who cared about me as much as I hopefully could have.

I think I still maintained contact with my boys, even when I was feeling rubbish.  I have a little tiny part of me where I look at photos of Harry, particularly, because Jack was already two, but I look at Harry in those few months when I know my treatment was taking place.  There’s just this vague sense of, did I miss out a little bit on that tiny patch of his life?  I don’t dwell on it too much because he’s such a cool kid and we’ve got such a good relationship, it’s fine.  I can’t imagine what else I could have one.  There’s a little part of me that does wish that I’d written that down.

Joe:                 One of the things that helped me was for my first cycle of chemo in hospital, I was put into the same room, which is by pure luck, well not pure luck, this was really intervention by the amazing nurses that we had.  Where I was put in with a guy who went through basically the same thing as I did, and he was on his last cycle.  Which was really cool because he was able to guide me through, give me some tips about managing your energy and what to expect.  He was an incident because I actually went to school with him, and that was bizarre.  It was pretty amazing.  It was something that really helped me.  Did you come across someone along your cancer adventure that went through a similar experience and was able to share that with you?

Rochelle:         I just have to pick up on the fact that you just said cancer adventure.  Maybe that’s the word instead of journey we all need to start using.  I’m not sure it would go down well with everybody.

Joe:                 Like you, I hate the word journey.

Rochelle:         Yes, it’s interesting.  People come out of the wood work.  I was contacted by someone who was my parent’s generation who had had Hodgkin’s Lymphoma and she just phoned me out of the blue and said, “I’d heard, and I just want to tell you that I went through it.” She was absolutely lovely.  The interesting thing, I suppose, was she focused quite a lot of what she wanted to tell me on sourcing a good wig for when I lost my hair.  It was interesting because she was lovely and genuinely offering some support, but I couldn’t have cared less about – I have big, long brown curls, so I wasn’t like imaging ever having to go bald.

It wasn’t even on my radar.  I couldn’t have cared less.  I thought, I’m sick, and I’ve got cancer, and I need to get better.  I’ll put a head scarf on.  I don’t know, it hadn’t occurred to me.  It was strange in the first instance get help from someone who had had exactly my cancer, who was focusing on an issue that was exactly not my issue.  The flipside of that was when I had finished my treatment, I heard about this service that the Cancer Council offers, called Cancer Connect.

That provides specifically the opportunity for people who phone into the Cancer Council to talk to someone who has had a similar cancer diagnosis or experience, or treatment, or is in a similar life stage.  I think I would have loved something like that when I was going through it.  Just to normalise to some extent what’s going on, to talk to someone else who has had what I have.  I didn’t find out about that until after I was better.

Joe:                 Probably like most people.  Is that why you got involved with it?

Rochelle:         Yes, I found out about it because I picked up a brochure when I was actually waiting to see my oncologist.  I was reading it thinking, “This is brilliant and actually, why didn’t I know?” With my marketing hat on, why the hell didn’t I know and how come this isn’t better promoted to me.  Instantly, jotting down all the ways in which this message could have gotten out to me throughout my treatment.  Then I contacted the cancer counsel to say, “I had never heard about this and these are all the ways in which the message could have gotten to me, and how do I apply?”

They listened to me, gave me a little bit of information and then said, “Rochelle, it’s wonderful that you want to volunteer, and you sound like just the right type of person.  However, sweetheart, you’ve just finished your chemo.” They basically wouldn’t accept anyone into the program until 18 months after their last treatment.  Which, at the time, I thought was absurd.

Joe:                 Why do you have to wait?

Rochelle:         Upon reflection, it’s genius because there’s no way you’re in a position straight after you’ve finished treatment to start supporting others.  There’s a little way to go, I think.  There’s quite a lot that went on for me and for most people.  Once the treatment finishes, then you start to get back into rebuilding your life after cancer, you probably need a little bit of time to focus on yourself and to get that sorted before you start to open your mind and your heart, and your listening capacity to hear others talk about their experience.

Joe:                 Yes, it’s interesting that you mention that.  Before we get back to Cancer Connect, in terms of this whole process of putting yourself back together and because this experience changes you, did you feel that you started to look at life in a different way, and also maybe reassess your life before cancer?

Rochelle:         Yes, gosh, how long do we have?  I’ll try and pick the key points.  I often describe it as if you’re looking at life through a magnifying glass, and everything that’s really important just gets extra sharp and crystal clear and huge.  Everything that’s not important doesn’t actually make it into the picture.  I don’t think I changed what I thought was important, I think I just sharpened my focus on it and recognized that there was a whole lot of other stuff that didn’t warrant my attention.  I think that was certainly the result of cancer.  I also think it could be the result of moving into middle age.

Sometimes I’m like, “Was it my cancer or was it just the fact that I’m older?” I think it’s both and I think it’s definitely partly the cancer.  I think initially I was on an unbelievable high.  Every week away from chemo was a week of awesome.  As I rebuilt my health, because you accumulatively grow stronger and more well in the same way that you accumulatively get more ill from the chemo.  The more I moved aware from chemo treatments, the more I started to exercise and be active and get back into my normal life.

At six months, I thought I’m flying, but actually at twelve months, I looked back and went, gosh, at six months you were still barely putting the pieces back together.  I think I started on a real high and then it was only probably four or five months’ later that the actual reality of what had happened hit me.  I actually think that is the first time.  I think it hit me then significantly harder than when I first even found out I was sick.

Joe:                 The magnitude of it all?

Rochelle:         I think the fact that it happened to me and that I wasn’t looking from above down on myself, thinking, “You’ve just got to get through this, head down, Rach, you can do this, go, go, go”, but more looking down on myself and thinking, “Well, that happened to you, that was really sad and really intense and really challenging.  You did good, girl.” I think the magnitude and the sadness still hits me now, even just telling you.  That was the real turning point.  Then also acceptance and just letting myself feel really sad and really just stressed for the first time about what had happened.

Feeling proud of how I’d managed it and grateful that I was lucky enough to be here.  Still, I feel more the sadness and just stressing factors really kicked in.  Probably because I was safely on the other side.  I think when you’re in the middle of the treatment, there’s not time or energy that can be spent addressing some of those emotional stuff.  It’s really just hold yourself together physically because it’s physically very debilitating.  Once I was out the other side, it was like, good, you’re well now, you’re safe.

Now… let’s lose it emotionally a little bit about what was going on.  That, to some extent, hit me.  Interestingly, that was also a turning point for being able to look forward.  Straight after I got well, Steven, my other half, was very much, “Right, let’s plan holidays, what can we do next and what’s our future entailing?  Let’s do some five-year visioning.” Really wanted to look to the future.  I absolutely couldn’t.  I didn’t know I couldn’t until he pointed it out to me one day when we were having a conversation.  I was like, of course I can, I love planning for the future.  Then, I realized, no, he’s absolutely right.  I just could appreciate the here and now and get excited about tomorrow.  Planning past that, it was actually just too stressful.

I’m not that easily stressed and I’m not naturally anxious, I don’t anticipate the worst.  I just wanted to just stay right here, right now.  Then at that four or five-month point, when I really got upset, I suppose, about what had happened.  I dealt with it and then that triggered this capacity to all of a sudden, plan for the future again and get excited about the longer-term.  Yes, they were probably the two things that changed the most.  It was the sharpening of the focus of what’s important and then the flip, finally, of being able to plan again for the future.

Joe:                 Yes, because all of a sudden you realized that every day is a gift, right, and then naturally, as you mentioned, all of your priorities automatically shift and everything that’s not needed just falls by the wayside, doesn’t it?

Rochelle:         Yes.

Joe:                 Was that the moment where you felt, now, I have the capacity to help others, to be part of Cancer Connect?  How was that experience like?  Was it emotionally rewarding?  Was it draining at the same time?  Would you recommend it to others?

Rochelle:         I thought I could join Cancer Connect like three days after my chemo finished, I think, as I mentioned.  They made me wait, which was great.  I think I felt like it was something that I would have appreciated whilst I was going through it and therefore, I should get involved because how could I not want to help others in the same circumstance.  I probably went into it with a very much giving hat on.  What I didn’t necessarily anticipate was how much I would receive from getting involved.  The training, itself, was really incredible.

Partly, because it’s very good training and you do a lot of role playing and there’s a lot of active listening skills and just various protocols and guidelines to do with the actual program.  Also, a lot of just interesting interpersonal skills about peer-support over a phone and what helps and what doesn’t help.  I really enjoyed that in terms of the learning.  More than anything, I really enjoyed being in a room full of people in the club.  Which was really phenomenal and that was the bit I probably hadn’t anticipated.

I think I mentioned to you earlier, even telling those totally inappropriate cancer jokes in a room full of cancer people.  Well, we laughed at things together but then almost simultaneously crying, but you couldn’t’ do that with anyone else.  It absolutely is one of those things, if you haven’t been through you, I can’t really explain it.  Some of it was also that reality of the value of Cancer Connect was in that training, when you’re talking about the third day after your second chemo.  The people opposite you were going, “Yes.” You haven’t explained it yet, but you don’t have to because they know exactly what you’re talking about.

It’s that capacity to talk in shorthand about an experience that was monumental, that would take a lot of explaining to someone else.  It’s quite normalising and reassuring.  Just the characters.  There were lots of wonderful characters in the room.  People were all there for a similar reason.  That attracts a certain type of person, I suppose.  That was really enjoyable.  Just to hear from other people about their experiences, where some of them were so similar to mine, it was like holding a mirror up.  Others were so extraordinarily different, that it was fascinating that we’d been through the same thing, but with a completely different set of circumstances or outcomes.

Joe:                 When you were talking to the people on the phone, people who were going through that, what did people want to talk about?  Were there any topics that seem to come up all the time?

Rochelle:         I often see that someone’s cancer experience is as different and unique as their life experience.  There’s not really two people who you can categorically say, “It’s just the same.” There are certainly some themes that come up.  A lot of the time, it’s just letting them talk about things like fear, confusion, a need for reassurance, anger, questioning, why did this happen to me?  What am I supposed to do now?  How the hell am I going to get through this?  How am I going to rebuild my life afterwards?

Sometimes it’s whatever was going on before the cancer experience comes into the cancer experience, and it hasn’t gone away.  My really annoying mother-in-law is driving me mad.  Okay, but did she drive you mad before?  Yes.  Well, she’s still going to drive you mad now.  Sometimes it’s really specific questions about the treatment.  People want some reassurance around what side-effects did you have?  Can you tell me what happened to you?  I’m not there yet, but I just want to hear from someone who’s been through it.  Largely, it’s listening.

I think sometimes just giving them the opportunity to talk about what they’re going through and really listening and just responding with some genuine, “I hear you.  I know.  Oh my goodness.” It’s just enough to normalise what they’re going through and to make them feel like somebody who’s been through it knows what they’re talking about.  You can’t always anticipate what people will ring in about.  Yes, there are some things that feel familiar and you feel equipped as a peer, rather than a professional to provide support on.

Joe:                 It’s interesting that you say that.  I’m usually the type of person that if friends tell me about stuff, I’m usually the person that hits them with advice.  Maybe you should do this and do that.  It’s interesting, when I was in hospital for chemo and there was an old friend, we don’t really see each other all that much, but she showed up.  She just listened to me for an hour.  I was just bitching about stuff, I was just going off.  I realized that the tremendous uplifting experience to just being listened to.  Listened to in a proper way, where someone is just there, just present, not really giving you advice or telling you what to do, just listening.

Rochelle:         Yes, absolutely.  A lot of what you learn from the Cancer Connect training is less is more, actually, when you’re providing peer support.  Two ears, one mouth, use them in that proportion.  Even more so, really just listen and give them an opportunity to speak and to share in an environment that they feel is safe and supportive.  There are times in the Cancer Connect call, where they ask specifically, tell me about what happened to you, I want to hear you experience.  What did you feel when you went to chemo?  How did you cope when your oncologist wasn’t answering your questions like you wanted him to, or her to?

There are times when they specifically are seeking your story and I found interestingly at the start, how much should I share?  I’m out the other side, so she’s only in her first treatment, do I tell her how bad it is by the time she gets to the fifth?  Sometimes there is a sensitivity around if they are asking you direct questions, what’s appropriate in this circumstance to share?  I shall never lie but maybe in the second or third call, I’ll tell you about some of the more challenging symptoms that you’re not necessarily feeling now.  It needs to be support and care and honesty.

At the same time, you’re not trying to scare the crap out of them.  There is a huge responsibility to listen and to be honest when direct questions are asked.  I certainly followed the approach of listen far more than I speak, in terms of providing support.

Joe:                 I think it’s so amazing that you were doing it and you’re doing that now, because so many folks just need it because they, for one reason or another, do not have the support that they need when they’re going through it.

Rochelle:         True.  Well, thank you.  It is good.  You can hear how much I talk.  Imagine me trying to listen.

Joe:                 It must be tough.

Rochelle:         I’m also quite a good listener.  One of the interesting things that they do with the training is, you have two training sessions at the start and then you have a one-month break and then you do the third session.  It’s a very clever design because some people decide it’s just not for them.  They won’t come to the third session because either they don’t enjoy the experience, or they realize the commitment is not something that they’re prepared to give.  Also, for some, it just brings up too much of their own difficult memories and they might not be ready.  A lot of the early training is also about deciding in yourself if you’re ready to be in a place where you can offer support to others.

Joe:                 Yes, that’s fantastic.  Roch, if you had a minute with someone who just recently got diagnosed with cancer, what would you tell them?

Rochelle:         I probably would ask them how they’re feeling.  I don’t know if I’d tell them much at all.  I think I’d ask them, yes, do they want to talk about it?  I’d tell them that I’m available if they do want to talk about it.  If not now, then at any time that they feel the need.  If I had to tell them something, I would probably just tell them that it’s really difficult and whatever they’re feeling is okay.

Joe:                 Yes, that makes sense, Roch.  I know we spoke about it earlier, as we met at the survivorship event earlier, I saw you’ve obviously been speaking to a lot of specialists and research after that.  In your opinion, did that change that perspective in terms of interacting with someone, someone like you, someone who’s went through this real-life experience?  Is it a missing link for a lot of folks out there that are doing research, that are specialists in the area to be involved with someone who went through cancer?

Rochelle:         When I was asked to speak at the conference for the benefit of those listening to us.  Obviously, a conference where there were a lot of specialists talking and a lot of research presented, and some keynote speakers flown in from all over the world.  I asked about the validity of why on earth I would stand up and tell my story, especially as I was a hodgy with a great story and a good outcome, and here I am.  They’ve must have heard much more horrific things than what I had to share.  I was actually told by one of the keynote speakers, who I had the privilege of talking to before the event, and he said, “Rachelle, it’s vital that you stand up at the conference and tell us your story, because otherwise we are going to get lost in statistics and statistical significance and the probably of and likelihood of.

We might forget to address the whole person and we might forget to come together around the fact that there are people lives with individual stories that we are actually addressing on a daily basis.” I think it’s sort of like a reality check to have a survivor speak at a conference like that.  The warmth with which they responded was phenomenal.  Extraordinarily phenomenal for me.  I also think to some extent, there is a really important requirement in this space for advocacy on behalf of the patient and on behalf of the survivors.  There are so many more cancer survivors now, luckily, because the medical profession is allowing so many more of us to live.

In some respects, I think it’s important and I know now having done it, the importance of having our stories told, having them shared amongst the profession and not just as survivors with one another, to give us a voice about what matters to us and what happens to us, and what it feels like to be on the receiving end of oncology care or haematology care or even in clinical research trials and all those other things.  I think it’s important that there is a voice for the patient and the survivor.

Joe:                 Yes, that’s fantastic.  That is absolutely the voice that needs to be heard out there.  Thank you so much, Roch.

Rochelle:         Pleasure.  Thanks for having me.