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 :)

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.

@Brenda5 Get a mental health plan drawn up at your GP. You Automatically qualify as a BC recipient (or whatever terminology works for you, I never get it right). I was entitled to up to ten sessions. I have only used one. As I said, my psych was a brilliant match for me.

@SarahS I am very remote. I live 2,300kms from my closest treatment centre. There are no psychologists/psychiatrists even remotely physically close to me. The best I was offered was 5 telephone consult sessions organised by my GP. If women in the cities have difficulty in accessing mental health services what hope have remote women? From the end of June 2017 to the beginning of October 2017 I had 4 return flights from the closest airport to me to my treating centre. My travel day begins at around 7:30am with a 3 hour road trip to the airport over bush roads, dodging cattle and crossing creeks and floodways, then a 3 hour flight to the city followed by an hour (ish) taxi trip to the accomodation centre. I leave home around 7:30 am and arrive at the accommodation venue at around 5pm. I am shattered ohysically and emotionally.The 4 weeks I spent away from home were very difficult. I was homesick, not to mention everything with the city was unfamiliar. And I have no family in the city.Just being away from home, away from all that is familiar, along with the cancer diagnosis just about did my head in.Accessing mental health services is difficult and limited. Telephone counselling does not cut it. Good in theory but not in practice. Reasons. Limited band width for internet. To access mobile phone services, I need to sit on my front verandah on the right hand side to obtain a signal. Don't even bother during rain, thunderstorm or cyclone time.Add to the distance factor is the fact that clinic staff rarely know exactly where I live and services available. Everyone rabbits on about Allied Health. What is Allied Health? The term does not exist let alone the service where I live.The cost of accessing services in the city is tremendous and leads to financial stress. Add to the fact that Patient Assisted Travel Scheme (PATS) in my state is cutting back on services. I had to go alone. And still do for followup monitoring. The cost of an airfare for my husband (nearly $1000 return) is not possible on an age pension.All the above adds to stress levels. You may well ask why have I not relocated to the city (as has been suggested by the medical fraternity)? This is my home.

Getting the right match is critical. A work colleague went to one psychologist (through work) for assistance with coping (with grief) after her partner's death (cancer) and staggered out with a 32 page questionnaire, mostly focussing on her childhood and relations with her parents. Which were happy and loving, it was her partner's death that caused her grief!! It took her a long time to try/trust someone else (who was much better).

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 noone '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.

How can psychologists help? | BCNA Online Network

31 Replies

Afraser
Member
7 years ago
Getting the right match is critical. A work colleague went to one psychologist (through work) for assistance with coping (with grief) after her partner's death (cancer) and staggered out with a 32 page questionnaire, mostly focussing on her childhood and relations with her parents. Which were happy and loving, it was her partner's death that caused her grief!! It took her a long time to try/trust someone else (who was much better).
Blossom1961
Member
7 years ago
@Brenda5 Get a mental health plan drawn up at your GP. You Automatically qualify as a BC recipient (or whatever terminology works for you, I never get it right). I was entitled to up to ten sessions. I have only used one. As I said, my psych was a brilliant match for me.
Brenda5
Member
7 years ago
Discussing sexually abused as a child would be rather nice. I have never had any counselling for that. Discussing it with hubby in a limited extent was beneficial though. A problem shared is a problem halved. <3
Blossom1961
Member
7 years ago
@Brenda5 I had my GP draw me up a mental health plan. I then got to choose my own psych and it only cost me $40. I had previously tried the oncology psych through the hospital and she was useless. Her main questions were “why are you tired” and “were you sexually abused as a child” The private psych I chose was brilliant.
Brenda5
Member
7 years ago
I would love to access a phychologist but none up here seem to bulk bill. There is one in the cancer care building when I had chemo but my gp seems to think she's only there for chemo patients. Would have been nice to have been offered one when I was on chemo.
Mostly I just deal with it by avoidance. It might be a muddled life but at least its life.
I think an online skype or even online video call in Face book would be a wonderful service. I am not sure how the billing of that would work but hey, if you can figure it out, I'd be there.
kmakm
Member
7 years ago
Absolutely disgraceful @Kattykit. Appalling. Big hug, K xox
arpie
Member
7 years ago
That is disgraceful, @Kattykit Hopefully this will change.

Perhaps it is an area that BCNA can advocate more as well - to get the counselling issue on the table? Hopefully @SarahS participation will also enable her to raise the issue with her peers & tutors.

@BCNA @Riki_BCNA
Kattykit
Member
7 years ago
I've never had any sort of therapy, not the first time and even now that I have mets and will be on treatment until I die I have never once been offered counselling as part of my treatment.
iserbrown
Member
7 years ago
@"Patti J"
I am not sure but your comment ongoing suggests Mets. Is that correct? Perhaps a sentence or two to differentiate between recurrence and mets so that Sarah has a broader understanding
Take care and best wishes always x
Patti_J
Member
7 years ago
Not to detract from Liz Riordan's blog but she has had a local recurrence. I can't relate to that.