Home Now what? The highs and lows of survivorship



How can psychologists help?

Hey everyone, 

I am new to this community but I am eager to learn more. I am a provisional psychologist in Melbourne interested in helping people cope with the emotional difficulties that come with cancer. Whilst I am an outsider (I have not personally had cancer), I feel that the psychological side of cancer can often be neglected, especially during the survivorship period! (would you agree?)

I have posted elsewhere on this forum, but please feel free to reply to this post and share your mental health journey with cancer to help me gain a better understanding of your personal experiences! Also, what should mental health professionals be doing differently? What are the barriers to accessing adequate mental health support?

I am looking forward to your posts and further discussions :)

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Comments

  • AfraserAfraser MelbourneMember Posts: 3,713
    While I would agree that the psychological side of cancer (not only breast cancer) is often neglected, there are no single answers to the questions you ask just as there is no
    one 'cancer'. First thing would be awareness that a life threatening illness is likely to disturb your equilibrium! Second, that if you already have major problems and stresses in your life (which a health professional may be quite unaware of) a cancer diagnosis is unlikely to reduce that stress and concern. Third, that diagnosis can often be unclear, confusing and take time to sort out in some manageable way. And that's just the first week or two! I am sure many can share their stories, but just as we always say with treatment, we are all different, our cancers are different, treatments are different and responses are different. The best start is to place psychological assistance in the same category as medical assistance (not that you have lost your marbles!) and approach the whole issue holistically. Second, listen to the patient. Regards. 
  • SarahSSarahS Member Posts: 9
    Hi @Afraser ! Thanks for your reply. You're right.. my post was very broad. I guess I wanted to receive a broad range of answers, but perhaps it was too non-specific! Every path is different and I can only imagine how hard it would be when medical/health professionals try to "fit" you into a one-size-fits-all category of "cancer patient", when every diagnosis/treatment is unique. 
    Arh, there's nothing worse than telling someone that "it's all in your mind" or alluding to the notion that "you have lost your marbles"... if it were that trivial, it wouldn't be causing so much distress. I like to think that no well-trained psychologist would respond in that way.

    More specifically - do you think psychological support is accessible to people with cancer? For example, if you needed to access a psychologist/psychiatrist, would it be a hassle? I am specifically thinking of people who live in rural areas where specialised support may not be readily available, or for those who may not want to travel / do not have the time to attend a therapy appointment (e.g., fatigue, mobility issues, other physical side effects, demands of children, work commitments etc.).. or are these not very relevant barriers?  

    Thanks again!


  • arpiearpie Mid North Coast, NSWMember Posts: 5,747
    @SarahS ...

     I know that some members have had to wait weeks, even months for an appointment .... when the were in dire need of immediate assistance!!  Not good. :( 

    i am not even sure if there IS a psychologist/psychiatrist  in my own area, without having to go to a bigger town nearby .... 1/2hr away, or a major town, 1.5 or 2 hrs away


  • SarahSSarahS Member Posts: 9
    Hi @arpie , wow 1.5 or 2 hours is a long way to travel. I am aware that I asked you this in the private discussion we had, but would also like to post this publicly for others to input... would an online skype/video or telephone-delivered therapy be a viable alternative to face-to-face therapy if you live in a rural area? Or, does that sound unappealing? 
    Any input is welcome,
    Thanks!




  • Patti JPatti J Member, Dragonfly Posts: 589
    @SarahS. Why do you want to know this information? Is it part of your studies?
    I tried to contact a breast care nurse. She wasn't  interested. She thought I  lived too far from her workplace. I don't. 
    I tried to talk to a social worker. She told me to talk to my G.P.
    So, I  am  not sure that seeing a psychologist, that I know nothing about, would be of benefit to me.
  • AfraserAfraser MelbourneMember Posts: 3,713
    As per at @PattiJ's comments, it can be quite difficult. I am Melbourne based - I went through chemo with very little difficulty and then wham! Got three potentially lifelong side effects in a row. My problem wasn't so much how to cope, but sorting out my own sense of who I was and how I functioned. My senior oncology nurse recommended a counsellor, she was excellent and a relatively small number of sessions got me on a path which I am still on. Not everyone has those options, there may be no-one available without excessive travel, some find their counsellors not particularly helpful or not cancer experienced.  I was 68, had worked throughout treatments, so no child rearing responsibilities, work wasn't a particular problem (I did change my job 12 months after diagnosis but by choice not necessity) and most of the changes I made (delegating better, making more time for myself, not working 60 hour weeks) were long overdue before I got cancer! If a cancer diagnosis throws you out of work (has happened), a lack of income threatens the roof over your head and you have children to support, maybe on your own, your problems are about survival in every sense of the word. For me, the critical thing was that my counsellor "got" me very quickly -  no pat answers, no standard therapies, straight and humour filled talking. The smart one was my oncology nurse - made a really sensitive match, rather than suggesting a support group or talking to my GP! 
  • SarahSSarahS Member Posts: 9
    edited March 2019
    Hi @Patti J

    I am a provisional psychologist and PhD candidate, but posts on this thread will not be used in a study (it would not be possible to use information on here without participant consent...). Whilst I plan to run a clinical trial later down the track in my studies (i.e., trialling a psychological therapy to help cancer patients/survivors cope with emotional challenges), at the moment I am trying to gain a basic understanding of the mental health difficulties that accompany cancer. Also, psycho-oncology is an area I am quite interested in pursuing after I finish my training, and I find online forums to be a really welcoming place / casual way to discuss these issues with people all over the world! So I am very grateful for all the input I receive.. as you can imagine, the research papers/textbooks don't give a very personal depiction of the lived experience! Feel free to ask any other questions. I really am here, not to probe, but to become more informed as a new mental health professional. 

    It's a shame about your breast care nurse. It seems that the mental health services were quite limited for you @Patti J  :neutral: , and I can completely understand how it may seem odd to open up to a "stranger" who you know nothing about!!



  • ArtferretArtferret MelbourneMember Posts: 258
    I went through Peter Mac as a private patient and looking back there was no asking whether i needed access to a psychologist even at the 6 month period. Neither was i offered the services of a breast care nurse until 12 months after. I don't know whether it was because i was early stage and wasn't going down the full treatment line (2 lumpectomies then hormone therapy,  no rads, no chemo). I ended up accessing a psychologist myself around the 6 month mark as i felt i needed it. My husband had prostate cancer at the same time so it was a lot to deal with. I am surprised it's not part of your treatment package and like everything you don't have to take it up. 
  • SarahSSarahS Member Posts: 9
    Hi @Afraser , I'm very glad that you were able to get onto a counsellor quite quickly.. it's great to think that one may only need a few sessions to see positive changes. And as you seem to have experienced, often the quicker you get help, the easier it is to get "back on track". 
    Yes, I have come across a few people who also mention that a cancer diagnosis makes you prioritise what matters most in life.. e.g., making more time for yourself and not working ridiculous hours! (if only it didn't take a cancer diagnosis to do so!) And I can imagine, for some, job loss and financial strain would add another burden to the already huge mental load...

  • SarahSSarahS Member Posts: 9
    @Artferret , Thanks for sharing your experience. It does baffle me that psychological/counselling services are not part of the treatment package! Especially when it often seems that the mental health effects of cancer are actually more challenging than the physical cancer side-effects itself. 
    Wow, having both yourself and your husband having cancer would be a large load to carry (even if you were carrying it together). But, good on you for taking the initiative to find a psychologist yourself! 
  • AllyJayAllyJay Member Posts: 848
    My experience thus far...diagnosed 2016...bilateral mastectomy with all the works but no radiotherapy due to another medical condition which removed that as an option is this. I think I have been far more psycologically wounded, scarred affected...whatever, by the people treating me, than by the disease itself. My oncologist is, shall we say, definitely on the spectrum. I call her The Ice Princess. I was in and out of hospital 56 days during my six months of chemo, due to severe side effects from the chemo, as well as having other co morbid conditions. She would swan into my room, with her retinue of acolytes and look, not at me, but to a spot somewhere behind my left shoulder. She would then deliver her schpiel along the lines of "Here we have a 58 year old woman with xyx (regarding my cancer) as well as abc...which makes her rather an interesting case". Towards the end of my chemo, I asked to see her registrar to get something for an excruciating frozen shoulder which was absolute agony. He never showed. I did see her later that day (after my chemo) at a preset appointment with her, Her response to me was, and I quote, "I'm really not interested in your boo hoo poor little me tale of woe regarding your shoulder...it has nothing to do with your cancer, and I am a very busy person with lots of very sick patients to see to". Swallowing my rage, I told her that that was the reason I had asked to see her registrar upon my arrival. Her reply to me was "Well I also don't have dozens of registrars available at your beck and call". Terrible but true. I can fill another twenty pages of mistreatment by persons all along the healthcare spectrum, who have caused me great pain on this magnificent "journey" I'm on. I've been treated as an "interesting case", the "bilateral mastectomy in bed 22" and been called by my first name by nurses far younger than my own children. I'm by no means an old stick in the mud, but I feel that this is just another aspect of a lack of respect. I'm sick of people rolling their eyes at me, and having had my body poisoned, sliced and diced, treated like a sausage on the conveyor belt and just a number, makes me rather reticent to have someone poking around inside me head too.
  • RomlaRomla AdelaideMember Posts: 2,087
    @SarahSanother member @SoldierCrab provided a special post that you might find helpful - it was written by a breast cancer nurse who herself became a patient.

    Here Comes the Sun

    #fightCRC #cancersucks #igotthis #herecomesthesun#colorectalcancer #survivorintraining

    Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

    This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

    I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.

    I didn’t get how hard the waiting is. It’s literally the worst part. The diagnosis process takes forever. The different consults, the biopsies, the exams and procedures… and the scans. Ugh, the scans. You were going through the motions trying to stay positive- but at that point, you had no idea what you were dealing with and the unknown was terrifying. Knowing the cancer is there and knowing you’re not doing anything to treat is yet is an awful, helpless feeling. I’m sorry. I didn’t get it.

     

    I didn’t get how awkward it was to tell other people the news. You didn’t know what to say. They didn’t know what to say. No one knew what to say- but there was some relief when the word started to spread. It may have been overwhelming to reply to all the calls and messages- and to get used to others knowing such personal information, but this nasty secret you’d been keeping was finally out and your support system was growing. I’m sorry. I didn’t get it.

    I didn’t get how much you hung on to every word I said to you. You replayed it in your mind a hundred times. Did I really mean this or that… you wondered if you understood. You called me again to make sure. And maybe another time because your friend asked “well, what about _____”. You asked your other nurses to see if you got the same answer. Please know we are happy to take a million calls a day with the same questions until you can make sense of it. I’m sorry. I didn’t get it.

    I didn’t get how much you googled. I told you not to do it. You did it, a lot- and so did I. Searching for information, hope, stories like yours, reassurance. It was impossible not to. My new stance is to just know what a good source is when you google. I’ll help you learn to filter the information. And I promise to give you more information, because I know how much you crave it. It’s not realistic to think you will have the willpower to not search at all (at least it wasn’t for me). I’m sorry. I didn’t get it.

    I didn’t get what it felt like to get the sad looks all the time. Walking down the hall at work or seeing someone for the first time after finding out. You got the head tilt with a soft “how aaaare you?” You quickly got together your rehearsed “Doing pretty good, tired but hanging in there”generic response. Don’t get me wrong, I know you appreciated all the well wishes and concern- but it sure took a little while to get used to the pity. I’m sorry. I didn’t get it.

    I didn’t get what really goes on at all those “other appointments”. I knew what to tell you to expect at your oncology appointments- but all the different types of scans, radiation, operating room, procedural areas- I didn’t really know what went on behind the scenes there and what to tell you. I should’ve known more about the whole picture. I should’ve been able to warn you that there was an hour wait after a dose of medication before you could actually have a scan. I should’ve been able to tell you what you can and can’t eat or drink before a certain procedure or that some treatments require going every single day. I’m sorry. I didn’t get it.

    I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, yeah it kind of made you feel good- but you still didn’t really understand why people would call you this. Sure you were getting through it fine (most days), but it’s not like you had a choice. I’m getting treatment because I have to- doesn’t really make me feel like much of a hero. I’m sorry. I didn’t get it.

    I didn’t get how crazy this makes you. Like you literally wondered if you had lost every working brain cell. Especially when dealing with side effects or other symptoms. You could’ve had every side effect in the book from chemo or none at all and you’d still wonder if it’s really working the way it’s supposed to. You may just have had a headache, or a common cold, or a sore joint- but you were never certain it wasn’t related to your cancer and always wondered if it was a sign of progression, even when it made no sense. I hope you didn’t feel dismissed when you called me to ask about it and I said not to worry. I’m sorry. I didn’t get it.

    I didn’t get why you were always suspicious. You couldn’t help but wonder if they all knew something you didn’t about your prognosis. We shared the percentages and stats with you – and that every cancer is different … but still- is there something more? Something they were protecting you from or just felt too bad to tell you? Logically, I know the answer to this but find myself with these feelings as well. I’m sorry. I didn’t get it.

    I didn’t get how confusing “options” really were. In some cases, there may be more than one choice. Whether this be physicians, medications, sequence of treatment, etc-  I would try my best to help you understand every angle, but more options many times just meant more confusion. You wanted to be involved in your own care- but the stress of too many options was sometimes too much. You begged me for my input and to tell you what I would do if it were me. I hated that question, but I hear you now. I’m sorry. I didn’t get it.

    I didn’t get how hard it is to accept help. Especially the moms.This just wasn’t something you’re used to doing- but you needed it. You felt shy about admitting that you’re not sure you could’ve gotten through the first few months without the extra food, gift cards, support, and other help you were given. You felt humbled at the outpouring and just only hoped you would’ve done the same for them. You still wonder if you said thank you enough or if you missed an opportunity to give back. I’m sorry. I didn’t get it.

    I didn’t get the mood swings. One day you felt confident that you’d completely beat this with no problem; you felt like you could take over the world. And for no good reason, the next day you were just convinced yours was going to be one of those sad stories people tell their friends about. The moods snuck up on you without warning. Literally anything could’ve been a trigger. I’m sorry. I didn’t get it.

    I didn’t get that when you said you were tired, you really meant so much more. Sure there are words like exhaustion and extreme fatigue- but there should really be a separate word just for cancer patients, because it’s crippling. Really.Some days you really wondered how you’d trudge forward. I’m sorry. I didn’t get it.

    I didn’t get how much time this really takes away from your life. I always used phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep you for what you were about to embark on. But now they just seem like corny catch phrases. It completely took over, you had to stop doing things you love, you had to cancel plans, you had to miss out on things that were important to you. It just wasn’t in any plans- and that alone took a lot of mourning. I’m sorry. I didn’t get it.

    I didn’t get how strange it was to see your body changing so quickly. You stood there and looked at yourself in disbelief in the mirror. Maybe it was extreme swelling, maybe it was scars, maybe it was hair loss, maybe it was pounds melting away when you do everything in your power to eat as much as you can. It’s hard- your appearance is tied more closely to your identity than you’d like to admit and these were constant reminders of what you were up against. You just wanted to feel like yourself. I’m sorry. I didn’t get it.

     

    I didn’t get that it hurts to be left out. People didn’t invite you to things anymore. People felt like they can’t complain or vent about every day annoyances to you anymore. People acted differently towards you and it hurt a bit. You certainly didn’t blame them- you had even done the same to others when traumatic life events happened—and no you didn’t want to go out for drinks anyway because you don’t feel good. But you needed normalcy. I’m sorry. I didn’t get it.

    I didn’t get how much you worried about your kids. For this, I’m the most regretful. I should’ve talked to you more about them- and not just in terms of lifting restrictions or germs. You worried about how this was going to affect them. You worried about not being able to keep up with them or care for them properly on your bad days. You worried they’d be scarred and confused. You worried about leaving them. I’m sorry. I didn’t get it.

    I didn’t get the guilt you felt. Especially to those who are married. You thought about how unfair it was that your spouse had to pick up so much slack- mentally to help keep you focused and calm, and physically at home pulling double weight with never-ending every day chores. You understood that everyone promises “in sickness and in health” when you get married- but you still felt like they didn’t deserve this. You felt thankful when your spouse would say “go get some rest and I’ll take care of the kids” but your heart hurt overhearing them play in the other room away from you- wondering if that was a glimpse into their future that didn’t have you in it. I’m sorry. I didn’t get it.

    I didn’t get that it never ends. Never. I used to tell you that cancer will be just a phase in your life. Just like high school or something- it seems like it drags on and on when you’re in it, but soon it’ll all be a memory. I’m sorry if this made you feel marginalized – it is not a phase. Yes, there are phases- the treatment won’t last forever, but you are changed now. The worrying won’t stop, the uncertainty won’t stop, the fear of recurrence or an awful end won’t stop. I hear that gets better- time will tell. And time is precious. I’m sorry. I didn’t get it.

    I do have to admit; I’ve probably had it a little easier than you to start off. I know the language, I know all the right people, I work where I get treatment so sure- it’s more convenient. I watched so many of you march through this terrible nightmare with a brave face and determination- without knowing one thing about cancer ahead of time, other than knowing you didn’t ever want to get it. You’ve always been my inspiration and I love each and every one of you. Nothing brings me more joy that when I see you reach your goals and slowly put yourself back together. I love when we get visits or notes from those of you who are several years out and doing great- it’s good for the oncology nurses’ soul. Even though healthcare workers don’t really know what it’s like to be you (well, us) it’s ok. Nobody does. I just hope that I was still able to give you a little guidance and strength to help you get through your cancer treatment. Even if I didn’t get it.

     

    Love, 

    Lindsay, Oncology RN

     Also there is a blog run by a British oncologist/breast surgeon who herself has breast cancer.Her name is Liz O,’Riordan .


    I hope these give you some insight.



  • Patti JPatti J Member, Dragonfly Posts: 589
    @SarahS. I am not a "survivor". I am not on a "journey". I have cancer. I will have cancer till I die. 
    Yes, when I  needed to talk to a so called "professional", it would have been very helpful. 
  • SisterSister Adelaide Hills, SAMember Posts: 4,957
    edited March 2019
    For me, the psychological effects have varied as time has gone on.  The actual treatment you can read on my profile.  When I was first diagnosed it was if I'd been hit with a rubber mallet - I went back and forth between numbing fear and just plain numbness.  I'd lost my sister years before to bc and all I could hear was a death sentence.  Of course, this came on top of an already stressful few years.  As treatment got underway, first surgery, then chemo, it became more about putting one foot in front of the other and just getting through it.  Poor sleep throughout - I haven't had a full night's sleep since 5 December 2017.  Sometimes things would jump up and hit me - I could no longer organise anything and I had no emotional (or physical) resilience left.  Things happened with treatment that brought me really low and in tears of pain and despair.  I kept a blog during last year to keep friends and family informed but I found that I used it as a diary as well - a way of getting the thoughts out of my head and into some sort of order.  I think it helped me to stay on track during the first half of the year.  But I really hit rock-bottom at the end of chemo (which is pretty normal).  I contacted the psychologists service at the oncology clinic as had been recommended but no-one called me back and it was so hard to keep asking.  Eventually, I was told that due to a staff member leaving and the replacement not starting yet, it was going to be awhile.  I didn't know what to do but my husband called the Country Fire Service mental health unit (he's in the CFS) and they organised for me to see someone immediately.  I mention this because during most of the treatment, I was keeping my head above water.  But when I recognised that I was going downhill, it happened fast.

    Fast forward a few months to now.  Sometime around Christmas (just after the 12 months scan and all that entails), I realised that things had changed.  While throughout last year, bc was sitting right in front of my eyes and I couldn't focus on anything else, I've found that it's slipped around to my peripheral vision.  I can't forget it completely, and I'm constantly reminded of it by the side effects of the hormone therapy on my joints, my appearance, deathly tiredness, sexual dysfunction...the list could go on forever...and these things at times bring me to tears and to anger.  I realise that I've got a Damoclean sword hanging over me even though to all intents and purposes the cancer is gone.  There is talk of a new normal but none of this is normal.  And of course, none of the previous stressors have disappeared - I've just added extra.
  • RomlaRomla AdelaideMember Posts: 2,087
    Here is the Liz O’Riorda blog

    http://liz.oriordan.co.uk/

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