Tag Archives: carers

CAN COUNSELLING HELP CANCER PATIENTS AND THEIR FAMILIES?

Receiving a diagnosis of cancer is a traumatic experience. One minute you’re ‘normal’ and the next your entire life has been turned upside down.

despairIt can be hard, even impossible, to talk to family members or friends about the roller-coaster of emotions that you have been commandeered into riding. When someone is diagnosed with cancer, they and their family can feel shocked, disbelieving, frightened, without direction or simply numb. Talking things through in confidence with someone who understands the emotional challenges of cancer can be extremely helpful.

Speaking individually to an experienced cancer counsellor can ease the sense of isolation you may feel and help you to find ways of facing the challenges ahead. This also applies to family members, friends and colleagues. By talking privately to a counsellor they can explore their anxiety, grief and any other emotions openly and honestly without needing to shield the person who is ill.

Why cancer counselling?

Research shows that counselling can be significantly useful in helping individuals and families face and meet the many challenges that a cancer diagnosis brings with it. This has been demonstrated to improve their quality of life.

During counselling, patients and families can learn how to cope more easily with their emotional issues. This helps them to communicate their needs better when speaking to Health professionals.

Counselling helps in easing any tension in relationships with family and friends. Optimistic but realistic outlooks replace the burden of positive expectations. Just saying “I’m being positive” doesn’t actually mean much, although being optimistic can always help you to enjoy life more in the here and now. However, if fears are present (and why wouldn’t they be?), then it is healthy to talk about these and get them out into the light of day.

How might you feel?

Some responses that people may feel when they are told they have cancer:

  • Shock: “What?? No!”
  • Denial / Disbelief: “It’s a mistake, those aren’t MY test results.”
  • Withdrawal: “I can’t/don’t want to talk to anyone.”
  • Feeling isolated: “Nobody understands.”
  • Anger: (“*#@^!!!”)
  • Loss: “But I’ve so much more I want to do with my life.”
  • Body image issues: “Will I look like a freak?”
  • Fears associated with sexuality and intimacy: “No one will every desire me now.”
  • Fear and uncertainty: “What’s going to happen to me?”

Anything you feel is valid and deserves to be acknowledged, not only by those around you, but also by you, yourself.

Seeking individual counselling or becoming part of a support group may be where you can find this acknowledgment.

After a cancer diagnosis, you might feel as though you have no control over what is happening to you and this can be very frightening. Uncertainty is often one of the most difficult things to deal with. You might feel as though cancer and its treatment have taken total control of your life and this can lead to feelings of powerlessness.

Counselling allows you to take back some control over your life and provides you with some semblance of security again. It can help you to enjoy your life despite the illness.

While it can be terrifying to think about it, it is natural to want to know what is likely to happen to you, so that you can plan for your future.

Sorting out your affairs so that everything is in order can be very confronting but it can also be helpful. Even though it’s likely to be painful for you and your family to talk about dying, it can also provide an opportunity to talk about what is important to you all and develop deeper levels of intimacy with each other. Regardless of how long the cancer patient lives, everyone benefits by being open and honest about what they value in their relationships.

Many cancer patients feel as if they have lost control of their lives. Talking to a counsellor or others going through a similar experience can help you to regain a level of control over how you cope.

To find out about support groups go to http://www.lifeforce.org.au

© Jane Gillespie

 

Excellent resource for people with cancer

So often the emotional impact of being diagnosed with cancer is overlooked.  I’ve talked about this before but just found this excellent book produced by the National Cancer Institute in the United States: http://www.cancer.gov/cancertopics/takingtime/takingtime.pdf.

Just about everything written in this resonated with me.  I think this publication, or something very similar written by local cancer organisations, should be made available for everyone who has been diagnosed with cancer.

Highly recommended.

Jane Gillespie – google.com/+JANEGILLESPIEHolisticCounsellor

Grief treated as mental illness!

Years ago I heard a very disturbing story about a young woman who had a bilateral mastectomy and ended up in the psychiatric ward of her local hospital. 

Through various contacts I was able to arrange to speak face to face with Gemma* and verify the pertinent facts.

She had found some suspicious lumps in both her breasts and despite being told that these were ‘only calcification’, she did some research on the Internet and discovered that calcification can indeed turn into cancer.  Because she was a single mother with two young  girls (aged 9 and 11) to raise, she wasn’t prepared to run the risk of them possibly losing their mum before they were grown-up so she decided to have both her breasts removed.

The surgery was performed by a breast surgeon and she was relieved to think that she needn’t live with the spectre of cancer hanging over her.  However, she had considerable post-operative pain that the surgeon dismissed as histrionics and she was sent home from hospital with no discharge plan in place.

No one took the time to find out what support she might have at home and she was told to take Panadol if the pain was severe.

Gemma found it impossible to sit up again after she lay down and spent her first night at home in agony, eventually wetting the bed because she was unable to get up to go to the toilet.  Her daughters’ bedroom was at the back of the house and hers at the front, so they couldn’t hear her call for help.  And realistically, what could these two children have done for their mother?

It’s tempting to ask why she didn’t speak up and explain her home situation but the responsibility rested with the hospital to ask the right questions.  When faced with momentous circumstances many people don’t function in fully adult ways and this young woman needed someone to take the time to make sure that she had a support network in place.

Friends who had minded the children for the few days Gemma was in hospital couldn’t keep them any longer because they were moving to a different State and her boyfriend was overseas at the time.  There was no one else to look after them and because no one asked the right questions or told Gemma that services could be set up to get her little family safely through her recovery period, she felt she had no option except to go home and look after them herself.

She also wasn’t prepared for the overwhelming grief that she experienced when she finally plucked up the courage to look at her chest. When her boyfriend returned he didn’t understand that her constant crying and withdrawal were signs of depression. Gemma had suffered depression in the past; how could the surgeon or hospital not know this?  Obviously she hadn’t told them, but why wasn’t she asked how she was coping or how she would manage when she went home?

Peter* had no experience with depression and had no clue how to treat her.  His solution was to tell her to ‘get over it’, ‘be grateful she didn’t have cancer’ and ‘she had chosen to have her breasts removed’.  Eventually he ended the relationship.

This was the final straw for Gemma and she took an overdose of sleeping pills. 

She left a note that her older daughter found, telling them to contact Peter because he would look after them.  She also said where she was going so it seems clear that she didn’t really want to kill herself.  Luckily Peter found her and took her to the hospital where she was admitted to the psychiatric ward.

Here she was pumped full of sedatives to keep her quiet, but refused pain medication despite still suffering since her surgery.  Four days later she was finally seen by a psychiatrist who thought to ask her what had happened in her life recently.

Luckily this doctor realised that she needed counselling, not locking up, and arranged for the hospital Social Worker to sort out home care for her until she was fully recovered and appointments with a psychologist, as well as medication to help her function in the short term.

In my conversation with Gemma it was apparent that she was dealing with a high level of grief.  Every cancer patient (or in her case, potential cancer patient) will experience a sense of loss to varying degrees.  Their progress through this grief will depend on the support network that they have and the ability of professionals and family and friends to allow them to ‘tell their story’ as many times as they need to tell it, until they have come to terms with their new reality.  This needs to be done without judgment or advice on how to ‘fix it’.

Gemma’s case was more extreme than most, but given the lack of any planning by the hospital regarding her post-surgery discharge and her personal circumstances, perhaps not really so surprising.

Thankfully these days it is unlikely that anyone would slip through the cracks to the same extent that Gemma did, as it is now generally recognised that duty of care doesn’t end with a patient’s discharge from hospital.  However, I believe that there are still times when our over-stretched hospitals don’t follow their own protocols for discharging patients.

So if you know someone who is going through a traumatic time, please ask the question: ‘Are you okay?’ If the answer is yes but you doubt this is true, please advocate on behalf of your family member/friend to make sure that there is indeed a functioning support system in place before a patient is discharged from hospital or if they seem to be struggling down the track.  Don’t just assume that because it happened a while ago (regardless of what ‘it’ was), that the person who went through the experience is okay now.

* Names changed

I recommend that if you do consult Dr Google, always discuss your findings with your own medical advisers

© Jane Gillespie

http://janegillespie.com.au/counsellor.html

Calling all cancer patients – just BE POSITIVE!

“You just have to be positive and you’ll be okay!”

GrumpyCatNotPositive

How many times have you heard someone say this?   It really, really isn’t that simple.  In fact, to say that to someone who has been diagnosed with cancer, even when meant kindly, isn’t helpful at all.

How does it feel to hear this when your life has been turned upside-down, you’re maybe struggling with the side-effects of treatment and in a deep dark hole grieving the loss of your old life or hopes and dreams for your future?  Does this platitude make you feel better?

When I was first diagnosed I experienced emotions ranging from feeling like a failure because I got cancer in the first place, to wanting to smack anyone who told me to ‘just be positive’!

It’s been a popular notion for many years that if you have a positive attitude you won’t get cancer or you can get rid of it or it won’t come back again.  To be told that you ‘have’ to be positive places an enormous weight  onto your already burdened shoulders.

As if it isn’t bad enough just dealing with the physical aspect of cancer treatment, even with a good prognosis it’s absolutely normal question whether you are going to survive.  If you believed that you had many more years/decades ahead of you and now you’ve been confronted with your mortality, it’s perfectly natural to be depressed and frightened.

If you have cancer and start believing that all you need is to be positive, how will you feel if despite the best efforts of your doctors and other health advisers, your cancer doesn’t respond to treatment?  Does this make you a failure?  Does it mean you didn’t try hard enough?  The answer to both those questions is a resounding NO.

It’s vital that you take this misguided belief and chuck it as far away from you as you can.  Imagine you’re on top of a high cliff and the be-positive notion is something you can pick up and hurl out into the depths of the ocean.

There is nothing wrong with being optimistic, which is a very different thing to the popular interpretation of being positive.  Being optimistic still allows for times when you feel afraid or worried.  Whatever emotions you experience are okay; feelings aren’t good or bad, they just are.  If you don’t feel as though you have permission to feel down sometimes rather than up all the time, you run the risk of being stuck in the uncomfortable feelings.  You need to acknowledge these emotions before you can release them.  Pretending by trying to be positive all the time, only makes those feelings stronger and harder to let go.

The best thing to do when you’re feeling depressed, anxious or just plain terrified, is to talk to someone who will listen without trying to fix things for you

Finding somewhere to off-load everything you’re feeling takes the power out of your challenging emotions and you will move to a calmer place much more quickly.

This is where cancer support groups can be very helpful because everyone there ‘gets it’.  To be validated for what you are feeling is the best way to be able to eventually move forward.  Each time you are acknowledged for what you are going through, those feelings become less powerful.

When people tell you that you have to be positive, what they are doing is making it easier for themselves to not have to worry about you.  Guess what, they are coming from fear too.

The best way to respond when someone tells you to be positive is to let them know that this doesn’t make you feel better and in fact is unhelpful.  Perhaps they need to walk in your shoes to fully understand, but most people will back off once you tell them how you feel when they give you this sort of advice.

Unless you have asked for their opinion or advice no one has the right to give it to you.

And even if you did ask them, you still have the right to say what feels helpful and what doesn’t.

If being honest with these people doesn’t work then whenever you see them I suggest you move away from them as soon as you can.  Surround yourself with people who are brave enough to be with you when you feel depressed or frightened and offer nothing more than their accepting presence.

For those people who don’t know what to do when faced with someone who is distressed, it’s really easy – you don’t have to DO anything!  If you feel you must say something, make it as simple as, “I can see you’re having a tough time today.  I’m so sorry”.

One thing I am positive about is that anyone who can sit with me when I’m in emotional pain, without telling me what to do, is a true friend.

© Jane Gillespie

google.com/+JANEGILLESPIEHolisticCounsellor

CARING FOR SOMEONE WITH CANCER

You will probably suffer from both physical and emotional exhaustion before too long if you are the main carer for someone with cancer. The first thing you must do is ask for help.

Life goes on even while you are caring for the sick person.  Kids still have to do their homework, clothes still need to be washed and ironed, bills need to be paid, gardens need tending, bathrooms need cleaning and shopping and cooking have to be taken care of.

Other family members and friends are usually only too willing to do what they can, but sometimes they don’t know what they can do, so make a list of things that you know would help you.  They will be grateful for your suggestions.  Some things on this list might be:

  • baby-sitting
  • cooking (and freezing) meals
  • providing transport for medical appointments
  • taking children to weekend sport
  • offering to sit with the patient while you do other things
  • mowing the lawns and/or weeding garden beds

Make sure some of those other things include ‘time out’ for you, for example:

  • go to a movie or a concert
  • meet a friend for coffee or lunch
  • go for a walk in the park

It serves no purpose if you fall in a heap. 

You must take care of yourself if you are going to be able to care for anyone else.

Now is the time to call in all favours.

You need to be guided by what the cancer patient wants and always try to respond openly to conversations that they initiate. Never, ever say to someone who tries to tell you that they are afraid of dying that they ‘mustn’t talk like that’.

Talking about fears doesn’t make them happen and it’s much healthier to get those feelings out into the open.  And if the cancer is terminal, it’s really cruel not to let people talk about what it means to them to be coming to the end of their life.  If necessary arrange for someone (minister, trusted friend, professional counsellor, etc.) to facilitate a meeting so that you can talk about these big, scary things without it feeling like it’s going to end in disaster.

You really need to de-brief your fears, exhaustion, frustration and so on – all those emotions that are raging through you, that you can’t and don’t want to share with the person you’re caring for.

Attending a support groups of other cancer carers can help take away feelings of isolation; “nobody else understands what it’s like for me”. It is liberating to hear that others sometimes feel  overwhelmed, despairing, terrified and yes, even furious with the person who has cancer.  No one there will judge you (it’s easy to guess that you’re doing a pretty good job of that yourself!) and it helps to know that all those feelings are a normal reaction to an incredibly stressful situation. I believe it is vital for carers to have somewhere to debrief what their life is like, away from the person they are caring for, so that they can be completely honest about what is going on for them without having to worry about hurting anyone else.

In Sydney, Life Force Cancer Foundation runs weekly support groups for carers in the Inner West and for patients & survivors in the Eastern Suburbs and Inner West.  http://lifeforce.org.au/support-groups/

I also recommend that you talk to hospital social workers to find out what other assistance is available.  Because the system is so stretched, help usually isn’t offered unless you ask for it.  Be the squeaky wheel and insist on seeing the relevant social worker.

This is always going to be an extremely challenging time but if you look after yourself as much as possible, it doesn’t have to be totally overwhelming.

(c) Jane Gillespie 2017