Letter from the Editor

If you haven’t already had your annual flu vaccination, then this is the time to do it. Preventing unnecessary risk from respiratory infections during the winter months has a lot going for it. People undergoing treatment for cancer, including prostate cancer, are faced with increased risk of contracting infection which poses increased health risks to those who are immune-compromised.

Protection from infectious disease is important prior to any surgery, or when undergoing chemotherapy, as the defence mechanism of the body may be less effective and may render the body less able to fend off infections. Having an annual flu vaccination is especially important for those who might be undergoing chemotherapy

for treatment of any cancer, or for those with chronic medical problems such as a past history of respiratory problems or bronchitis, asthma or emphysema. It is also true for people with diabetes and heart disease. The additional medical problems associated with a respiratory infection may increase the health burden in the presence of other health related conditions. Sometimes men with prostate cancer may also have another co-existing cancer as well.

Why is it necessary to have a flu vaccination every year? There are very good reasons for this. You may remember various scares over the past few years with flu season, such as the swine flu and prior to that, the bird flu. These are different types of the same infection. Influenza A has the capacity of making minor changes to the ‘identity’ of the virus with each passing year, whilst remaining basically the same bug. This is the reason that repeated shots are necessary on an annual basis, as the flu shot contains different strains of the Influenza A from one year to the next.

Use the consultation with your local doctor as a way of revising your need for vaccination generally. The National Health and Medical Research Council make recommendations for vaccinations for specific age groups. These

Queensland Prostate Cancer NewsThis magazine is a publication of the Queensland Chapter, Prostate Cancer Foundation of Australia. April 2013

www.pcfa.org.au qpcn@cancerqld.org.auThe Queensland Chapter of the Prostate Cancer Foundation of Australia is grateful for the generous support of Cancer Council Queensland in the printing of this magazine. The content of this magazine is selected by the Queensland Chapter of the PCFA. Cancer Council Queensland does not necessarily endorse, or otherwise, any content contained within this publication.

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In this issue2 Calendar of Events;

Queensland prostate and associated support groups.

3 Contributing Guest Editor- Rick Parkes on Prostate.

6 Adults Need Immunisations, too.

7 Spotlight On Northern Rivers Prostate Cancer Support Group.

9 Brisbane Prostate Cancer Support Presentation - Coping with Grief.

12 Daily Multivitamin Associated with Lower Cancer Risk.

13 News Round-up.

14 Letter to the Editor. Forward a Copy.

15 Sign up for e-news; Special Monthly Bonus; Resources.

16 Brisbane Program; Contact Details; Disclaimer; Privacy; Thought For The Day; Cartoon.

Editor-Judith O’Malley-Ford. MBBS (Qld), MPH, JP(Q), FRACGP

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Calendar of Events 2013

Anytime BBQ for Prostate Cancer www.pcfa.org.au

Anytime C-vivor (free sessions) www.cancerqld.org.au

Associated Support Group

Group Contact Phone

Kingaroy Robert Horn 07 4690 5800

Prostate Cancer Support Groups in the Queensland ChapterThere are 28 PCSGs in the Chapter with a total membership of approximately 3,500 men.

Peer Support Group Contact Phone Peer Support Group Contact Phone

Advanced (all areas) Jim Marshall 07 3878 4567 Hervey Bay Ros Male 0407 157 590

Biloela Trevor Douglas 0409 235 891 Innisfail Peter Coxen 07 4065 5070

Brisbane Peter Dornan 07 3371 9155 Ipswich Terry Carter 07 3281 2894

Brisbane Partners Wendy Marshall 07 38784567 Mackay John Clinton 07 4942 0132

Bundaberg Rob McCulloch 07 4159 9419 Maryborough Leoll Barron 07 4123 1190

Capricorn Coast (Yeppoon) Jack Dallachy 07 4933 6466 North Burnett Russell Tyler 07 4161 1306

Central Queensland (Rockhampton)

Lloyd Younger 07 4928 6655 North Queensland (Townsville)

Clarke Berglin 07 4773 3303

Far North Queensland (Cairns)

Col Johnson 07 4052 0891 Northern Rivers (Evening) Craig Thurgate

0412 661 924

Far North Queensland Partners (Cairns)

Margaret Rolfe 07 4045 1031 Northern Rivers (Day) David Hughes 02 6687 0008

Gay/Bi David Wells 0411 081 653 Northern Tablelands Peter Martin 07 4096 6315

Gladstone Geoff Lester 07 4979 2725 North West Qld (Mt Isa) Yvonne McCoy 07 4743 2054

Glass House Country Bob McLean 07 5496 9601 Redcliffe Fred Travis 07 3480 5904

Gold Coast Central Peter Jamieson 07 5570 1903 Sunshine Coast Rob Tonge 07 5446 1318

Gold Coast North John Caldwell 07 5594 7317 Toowoomba David Abrahams

07 4613 6974

Gold Coast Partners Maggie Angus 07 5577 5507 Twin Towns and Tweed Coast Ross Davis 07 5599 7576

Gympie Robert Griffin 07 5482 4659 Whitsunday Dave Roberts 07 4945 4886

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Letter from the Editor

Contributing Guest Editor - Rick Parkes on prostate Rick Parkes on Prostate

“Hey Doc, the waterworks is not working as well as it did”.

”Well we have been following your PSA blood tests but 2 is not excessive and the finger test says it’s enlarged but nothing seems unusual”. This seems to be the start of the journey you wish you were not taking!

The PSA goes to 2.5 and still issues with the waterworks, dribbling and wanting to go more often and not easy to control. The Doc then sends you to an urologist – an expert on your waterworks and prostate, he puts you on 'Flomaxtra' which should improve your flow. Not much improvement and the PSA moves up to 3.5. The next move is to look up your 'Old Man' and take pictures of what is going on, for me this is January 2009. The result is, "Hey Rick, you have an enlarged prostate and it is blocking your bladder and there is some scarring in the bladder."

"Crikey Doc, what does that mean?"

"Well we are trying to manage with “Flomaxtra” but I think we are going to have to the improve the flow by surgery. This is called a 'TURP' - transurethral resection of the prostate, in layman’s terms a rebore. But it may be time to do a biopsy - this will tell you if there are early stages of cancer if not we carry on with TURP."

“Hey what if is cancer?"

"Well it may mean radical surgery, in other words remove the prostate." This is February 2009 and I am due in Nepal for a trek to Everest Base Camp. We decide to wait until after I return in April. After a successful trek in Nepal another PSA is carried out and indicates a reading of 5, not a good sign after 15 years of tracking two major jumps in a short period, but still not considered excessive.

On 17 July in I go to hospital for a biopsy, they knock me out, take 18

strips off my prostate for testing and take more photos. This proved to be a bad day, had money stolen from my wallet during the biopsy and then the news comes that I have early stages prostate cancer. “Who, me? I am as fit as anyone my age, just back from 30 days in Nepal? Next step, better get to have a bone scan - now this worries you, does it mean it may have spread? So back again to the hospital on the 22nd for a bone scan. Thank God that is clear.

So on 28 July see the specialist (with Sue). It appears I have early stages what they call T1, which indicates it is confined to the prostate and a Gleason score of 7 (3+4). The Gleason score indicates the level of score. So out of 18 samples three had cancer, the score of 3 means the most common pattern and 4 the next common pattern. Placing the 3 first indicates a better picture than having a 4 before a 3. Then the Doc also

recommendations are widely accepted and easily accessible as a means of reference.

Vaccination review is recommended for those people contemplating overseas travel for business or recreation. Depending on your proposed travel destination, you need to ensure that you are protected from possible infectious diseases during your vacation or business trip. You won’t want to bring home any hidden or unwanted health hitchhikers. Nor do you want to ruin the enjoyment or productivity of your planned

travel because of preventable illness, due to lack of vaccination preparedness.

For families with a newborn baby, it is recommended that new parents, grandparents and other close contact family members should have an update of their pertussis (or whooping cough) vaccination. Whooping cough can be a life threatening illness to the very young as well as the aged or those with health issues listed above, eg those who are immunologically compromised during chemotherapy. For the

full details consult with your doctor to determine what is appropriate for all your immunisation needs.

This month, QPCN tells a prostate story in some detail, and features his story as our “Contributing Guest Editor”. Thank you to the author for the telling, and for the demonstration of his robust quest for life. He is an inspiration to all of us. I hope you find this story as motivating as I did and encouraging enough to do the things you have always wanted but have deferred for so long.

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indicates a node on my prostate, which is causing the blockage. What next?

There appears to be three approaches, watch and wait surgery (remove the bloody thing) or radiation therapy. Watch and wait does not appear to be an option as the node is blocking my bladder so that will not improve, and as I have an early warning let’s do something. I had been researching after the news of cancer, and a good friend Richard was due to have surgery on 29 July and was in Brisbane from Perth earlier that month before the biopsy. We had a good chat about the options and his decision making. Also my Saturday walking group had a number of gentlemen also afflicted. All had had surgery.

My research was leading me towards surgery, and I had read of the success of robotic surgery which improves the chances of less damage to critical nerves that control your ability for erections and future void control (controlling incontinency). As the reader can see this is not a simple issue and there are many factors to consider.

So within a week of my diagnoses I had a session with Peter Dornan and another four guys all very nervous of the future and all with diagnoses of cancer. We are all taught the wisdom of the pelvic floor exercise. I also attend my first support group meeting, it was not the greatest night but it made you realise the options available, and that in the end you had to make the final decision yourself and get focused.

During all this happening Sue and myself decided to push on with our world trip before making the final decision on what action to take. Meanwhile it was decided

that I should see Urologist Dr X (experienced with the robotic surgery) on my return from overseas. This was booked in for 25 September and a provisional robotic surgery booking for 18 November.

The startling thing is that the media seems full of stories on prostate cancer and you tend to get bombarded with information, but when you come down to it, it remains YOUR DECISION. The guys at the walking group all show interest so this becomes a good positive defacto support group. The exercises continue and the general fitness regime is increased.

A month to 'P-day'. It is now 29 October, fitness regime continues and I believe I have the hang of pelvic exercises, though it’s hard to tell as it’s all inside, (I can lift my “balls”, and have movement around my scrotum, using mirror!). So it’s starting to happen and I am up to 140 bicycling crunches to strengthen stomach area. Last week was a pleasant break visiting Currumbin near the Gold Coast – kayaking/swimming/walking.

'P-Day'-minus16. Just more pelvic exercises – 160 bicycling crunches. Also received the November issue of Prostate Cancer News – headlines “Brachytherapy regarded as superior treatment for prostate cancer”. This is two independent studies out of the US, Prostate Cancer Foundation of Chicago and The Taussig Cancer Centre at Cleveland. Just another piece of information which adds to the doubts about the surgery option. Good survival rates, less invasive, better incontinence rates and less chance of sexual dysfunction up to 25%. Who do you believe??? 4 November, and just had a long talk with Dr X and specialist urology nurse and we discussed

the planning of the prostatectomy. Everyone was supportive and wished me the best.

17 November – 220 bicycle crunches. We talk with the prostate nurse. She reinforces the possible problems after the surgery, incontinence, erectile dysfunction, how to deal with catheters. She asks about our stress levels as a number between 1 and 10, 10 being the highest. I mark myself 3, Sue 4. Mine about apprehension and dependence on other people re: success eg surgeons. Sue is worried about a loved one and the uncertainty.

Well today is 'P-DAY'. Up at 4.30am for an enema, the second one in 7 hours, so now all cleared out. Sue and I head for hospital just after 6am. We arrive for 7am admission, the paperwork starts and I give my name and date of birth a dozen times (this makes sure they have the right person for the right operation). Next onto the bloodletting nurse. Before that I change into gown, paper knickers, TED tights and paper booties. What a sight. Then I move onto the ECG machine. Around 7.30am I say farewell to Sue and begin rolling towards the anaesthetist’s ante-ward, following in a traffic jam of trolleys...

Then the procedure of taking me off the drip begins and the drainage tube (surprising how long). Had a trainee nurse, who was very nervous doing the procedure. The nurses then take off my socks and blow up leggings to ready me for a shower. I’m a bit groggy as I get out of bed and my stomach muscles feel as if they have had a round with Muhammad Ali. I shuffle to the shower carrying my pee bag. It is great to have a shower, great care around the 'Old Man', but it’s a bit

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Contributing Guest Editor - Rick Parkes on prostate continued...

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QPCN | April 2013

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disconcerting having a catheter sticking out the end. I also have a shave (must keep the morale up).

Just as I am leaving the

shower, Dr X arrives and says the operation went well and they got the cancer and confirmed that the prostate was enlarged, but it went better than he thought, and I did not lose too much blood.

Having stomach pain, due to blowing you up during the operation – need to keep “farting” to clear. At about 7pm another set of injections of blood thinner and dreaded antibiotic. Nurse goes slowly but still bloody painful. At 12 the night nurse decides against the antibiotic jab after trying other veins on my left arm and not being successful. Little while later had pain under the left ribcage and she gives me 'Panadeine' and a peppermint tea – the dreaded wind build up. I eventually get to sleep. Woke at 4.30am with further pain in the shoulders and stomach – have a green tea.

Nurse gives me my discharge papers, plus night bags for the week and an extra catheter leg bag. Have stomach pain and would like to make a bowel movement but not allowed to force it. Given 'Movicol' to assist – but not working yet, also on 'Panamax' for pain. I stooge around for rest of the day reading and being lazy and a bit down in the dumps. A bit uncomfortable during the night, a headache and a need to have a bowel movement. I also fix another night bag about 2am as I fill my first

one. In the morning I then discover what do I do with night bags? And do we clean out the leg bag. A little bit of information that would have been useful from the hospitable??

I decide to ring Dr X's rooms – and guess what? No one available until Monday – if there is an emergency go to your local hospital – a bit different than the Registrars information – Confucius says, 'Make sure you get an actual number before leaving the hospital.' We then make contact with our Prostate network and they agree we cut the night bags and dispose of urine and that the leg bag is for the duration. Cannot be cleaned.

Advice – have plenty of wipes to clean up, have separate towels to clean up the 'Old Man' around the catheter exit. Wash hands a lot – cut pubic hairs back, they get in the way. Don’t get downhearted – you may be frustrated with the catheter but at least the cancer has gone.

Eureka! It is Saturday 21 November at 9am and I have a bowel movement. It’s amazing what makes you happy.

My next appointment will be 29 December. Friday 29 November I am on the improve, walked 2km over the day and did not get tired. Sleeping far better at night. I am very appreciative of the concern and good wishes of all my friends across the world. It means a lot at this time. Sunday, we are up early for an 8.30am appointment at the hospital. We arrive and go through reception and as the Urology ward has no beds we end up in the surgical ward. This ward does not have experienced Urology nurses so have to explain about my operation and the incontinence effects. So the void and retain procedure differs

from the one expected. The nurse deflates the balloon holding the catheter in the bladder by using a syringe into the spare tube (red end). Then pulls the catheter and this is bloody painful as it slid out but did not last long.

“AT LAST FREE OF THE BLOODY CATHETER.”

So here I am back in nappies - life goes a full circle. Though did not think I would get the sensation of a full bladder for a while and just dribble. The bladder is giving warning signs – but the dribbling is alive and well with any sharp movement eg getting in out of a car, sitting on a seat. It is now time to get pelvic exercises going. It’s all up to me!!

Monday 30 November. Overnight got up four times – based on a need to empty my bladder, made all times only slight dribbles. Some flows quite strong. Replaced overnight pad. Over the next four days keeping up exercises and starting to walk in the afternoon some 6+ kilometres.

I am in myself feeling okay but frustrated with lack of control but it is only the fourth day after my catheter removal. Today back in the car and picked up Peter Dornan’s book on “Conquering Incontinence". This week had another supportive phone call from Richard and also a call from Swifty, an old travelling friend. I am following Peter’s regime in the book and hope I start to see some improvement over next few weeks. I must be patient as could take months! I am trying to follow a normal routine and ignoring my body’s actions – when it comes down to it, it is all about ridding the body of cancer.

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Rick Parkes

Contributing Guest Editor - Rick Parkes on prostate continued...

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QPCN | April 2013

REFERENCE. MedlinePlus Daily Diary. 4 November 2012

Your need for immunisations doesn't end when you reach adulthood. Protect yourself and your loved ones from vaccine-preventable diseases. Be the example!!

Immunisations are NOT just for kids! Regardless of age, we ALL need immunisations to keep us healthy. With time, immunity from childhood vaccines can wear off and you may be at risk for new and different diseases. With adulthood comes responsibility, including the

need to protect ourselves and our loved ones.

Find Out Which Vaccines You NeedThe specific immunisations you need as an adult are determined by factors such as your age, lifestyle, health conditions, locations of travel, and previous immunisations. Throughout your adult life, you need immunisations to get and maintain protection against:

• Seasonal influenza (flu)

• Tetanus, diphtheria and pertussis (whooping cough)

• Shingles (for adults 60 years and older)

• Pneumococcal disease (for adults 65 years and older and adults with specific health conditions)

• Hepatitis B infection (for adults who have diabetes or are at risk for hepatitis B)

Other vaccinations you may need include those that protect against human papillomavirus (which can cause certain cancers), hepatitis A, meningococcal disease, chickenpox (varicella), and measles, mumps and rubella.

Adults need immunisations, too

It is now Sunday 6 December, 19 days to Christmas. I am still a 4 pad per day and 1 per night person. I seem to be under control at night but completely out of control during the day, that’s with using pelvic muscles as much as possible, though this does seem to push the void out not hold it back. I am trying to ignore my leakage and carry on life as usual. I am managing to walk at least 6 to 8 km per day in two sessions. A quote from the Dalai Lama: “If you are able to transform adverse situations into factors of the spiritual path, hindrances will become favourable conditions for spiritual practice”.

Saturday 19 December – becoming more active though still not achieving too much control over voiding during the day, but reducing the number of pads used. I have continued my gym work and am building up program. Had one bad night voiding eight times - this I believe caused by going to a dinner party and drinking water until late

– my glass topped up like wine? Hoping to see the voiding issue improve next week, especially as doing pelvic exercises, without fail.

The good news this week is incontinence seems to be on the mend in the last two days there has been a great improvement and the message seems to be getting through – from brain to bladder. Yesterday, Sunday 2 January, a new decade. I survived with very little leakage. “What a great feeling!” Celebrated with a red wine. Not going overboard yet but am feeling much better and hopefully, in that area, reached the end of the road. Had a good long walk on Saturday with the walkers and did some steep climbs and had plenty of support. This networking means a lot. Continuing with pelvic exercises and building up fitness in the gym and walking.

Friday 29 January – Great news! After giving blood yesterday for my first PSA test, THE RESULT Point

01. So the first part of the journey is over, the issues of incontinence and erectile dysfunction will take time and are subject to the body repairing itself and fitness. PSA checks will continue over the next couple of years but yesterday’s result is a good positive start. In two weeks off to New Zealand (“Hooray!”) and planning in October my pilgrimage to Camino de Santiago a 750 kilometre walk in Spain.

I finish my narrative with a Quote from the Dalai Lama:

“I believe each human being has the potential to change, to transform one’s own attitude, no matter how difficult the situation. We are human beings, and we have this marvellous brain and marvellous heart, so there is potential to develop a proper mental attitude through which we can have a happy, more peaceful life.”

Best wishes, Rick Parkes.

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Contributing Guest Editor - Rick Parkes on prostate continued...

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SPOTLIGHT ON Northern Rivers Prostate Cancer Support Group

The Northern Rivers Prostate Cancer Support Group was formed in the late 1990s by a group of dedicated men who believed that a Support Group should be formed to cater for men with prostate cancer. The Group had daytime meetings at Alstonville however the Committee soon realised that there was a need for evening meetings to cater for those men who were still working and could not attend the day Group.

The Committee requested Support Group member Warren Rose to establish an evening Group in the local area and consequently the Northern Rivers Evening Prostate Cancer Support Group came into being, complementing and working together with the Northern Rivers Day Prostate Cancer Support Group.

EVENING GROUP

Under Warren Rose’s guidance the Evening Group was established and the inaugural meeting was held in August 2009. Lismore, which is centrally located in the Northern Rivers, offered an accessible location for the Group and the meeting was held at the Lismore & District Workers’ Club where we continue to meet. The Club offers excellent facilities and allows us to use them without charge for which we are most grateful.

Around 35 people attended our first meeting and Daryl Hyland from the Queensland Chapter of Prostate Cancer Foundation of Australia was there to offer support and encouragement. Since that inaugural meeting we’ve met on the first Wednesday of every month

except Januarys. The meetings run from 7pm to 9pm and prior to the meeting many members take the opportunity to have a meal in the Club Bistro from 6pm.

At each meeting attendance varies between 15 and 30 attendees. Our meetings have an opening ritual where we read out the Queensland Chapter disclaimer and remind those present that we maintain confidentiality, we listen 100% to the person who’s speaking, we do not judge the information being shared amongst those within the Group and we stay with our feelings rather than how we think they should be. This gives members the confidence to fully share their journeys within the Support Group.

Guest speakers are invited to some of the meetings and at others we have discussion among members who are quite open in their responses and sharing about their prostate cancer experiences. At each meeting we provide a newssheet to all present with dot points of key matters for members to note. Women are most welcome to attend and from time-to-time they take time out from the main meeting to get together over a coffee to discuss common issues and problems.

The Northern Rivers Evening Prostate Cancer Support Group sees its role as one of prostate cancer support and awareness within our community. Fundraising is a secondary concern. It is the strength of the sharing within the Group that makes it vital for so many men and their carers to attend meetings and support us on a frequent basis.

Our current Convenor, Craig Thurgate, is well supported by Carol Thurgate (Secretary) and Ray Chilton (Treasurer) along with a Membership Officer and a Publicity Officer who ensures that the community newspaper and community radio announcements are placed for both the daytime Alstonville Group and evening Lismore Group. We’ve established a lending library for members with books, DVDs and the Prostate Cancer Kit for men newly diagnosed with prostate cancer.

Our daytime and evening Groups join forces to cooperate in staging a number of awareness events throughout the year. We’ve participated at the Primex Agricultural Show, the Caravan & 4WD Show in Lismore, the North Coast National Show and Bunnings’ BBQ. The Groups have also jointly contributed to the production and printing costs of 20,000 flyers giving awareness and Support Group information for distribution within the local community.

l to r back row Carol Thurgate (Secretary), Vida Stenner (Membership), Darrelyn Sharman (Advertising) front row Craig Thurgate (Convenor), Ray Chilton (Treasurer).

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Warren Rose

DAY GROUP

The Day Group continues to meet at the Alstonville Bowling Club on the third Monday of each month with the meeting commencing at 10am. Over the past couple of years, men attending our Group have had the benefit of many informative and professional presentations including those from a Radiation Oncologist, Urologist, Exercise Physiologist, Naturopath and Nutritionist.

A big development for the Northern Rivers cohort of men diagnosed with prostate cancer has been the establishment at Lismore Base Hospital of an Oncology Radiation Centre which has reduced the need for travel to Tugun’s (Gold Coast) John Flynn hospital and beyond for radiation treatment. Our Convenor, Community Nurse Specialist David Hughes, has from the start been a key figure for the group induction of each new group of men as they commence their radiotherapy. Through this interaction and

through his professional counselling of men referred by local Urologists, Nurse David has led many men to partake of the ongoing support of both of the Northern Rivers’ Groups.

We often combine fundraising with our awareness events and people want to know that their donations are, at least in part, being used locally. Currently the two Northern Rivers’ Groups have combined to produce and deliver to households a brochure with information about prostate cancer diagnosis, treatment and the support we can offer.

The matter of Public Liability Insurance cover for our fundraising endeavours has loomed large over the past year or so. We are looking for some clarification from Prostate Cancer Foundation of Australia to give us some guidance on this issue so that we can continue with our fundraising efforts, which are necessary for us to be able to continue our awareness programmes.

Chief BBQer Graeme Alcorn serving Bunnings’ staffers Claudia Foggo and Glen Vanroon.

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SPOTLIGHT ON Northern Rivers Prostate Cancer Support Group continued...

Convenor David Hughes launches the local mailbox drop flanked by Peter Barnett and Jennifer Meehan.

Above is a photo of Des Fairfull who recently lost his brave battle with prostate cancer. The photo shows Des at a PRIMEX field day standing tall beside his ingeniously constructed A-frame display showing the “BE A MAN” message. The photo sums up the meaning of our thirteen-year-old Group: the giving and receiving of support and education of the prostate cancer issues that confront us males. Des Fairfull’s sharing at Northern Rivers’ meetings, both Day and Evening, were down-to-earth and his rollicking poem recitals at special occasions will be fondly remembered.

Our current Committee is headed up by Convenor David Hughes with Co-convenor Pat Coughlan, Secretary Tony Sheehan, Treasurer Byron Wilson plus Committee Members Peter Barnett and Craig Thurgate.

l to r Pat Coughlan, Des Fairfull and John Marchant (Our PRIMEX Organiser) with THE A-Frame.

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QPCN | April 2013

Brisbane Prostate Cancer Support Group Presentation - Coping With GriefBy Bob Wyborn

Grief is the natural and normal physical, mental, emotional and spiritual response to any significant loss. Its depth is in direct proportion to the degree of attachment and love that we all have to that loss. A suggested description of grief is that it’s the most painful experience of chaos that we will ever experience. One dictionary definition of chaos is “the state of matter before the universe was reduced to order”. There is no pain as severe as grief. It is that gut wrenching, mind numbing, dry retching state that renders us almost useless.

With this introduction Bob Wyborn, a Grief Resolution Specialist with a theological background, from Grief & Wellness Services in Brisbane, introduced his presentation to the January meeting of the Brisbane Prostate Cancer Support Network.

Bob regularly runs Grief Support Groups and has personal experience with the emotional trauma of grief and loss following a drawn out family situation, and has also had his own problems following a prostate cancer diagnosis. His presentation generally covered grief and stress, which could arise

following various life issues but with an emphasis on men and prostate cancer and the effect of problems following diagnosis and treatment.

Unfortunately men generally don’t handle grief as well as their womenfolk. From an early age boys are told not to cry ("You’re a big man/boy now and big men/boys don’t cry.") so they tend to bottle up their emotions rather than talk about their problems and get things off their chests.

A man who it’s suspected may have prostate cancer following PSA and DRE tests may then have a biopsy to confirm, or otherwise, the diagnosis. In the doctor’s office discussing the biopsy results he’s told the bad news. "Yes", the doctor says, he does have prostate cancer and (depending on the stage and aggressiveness of the tumour) these are the treatment options and the possible side effects of those treatments. "Think about these options and then we’ll work out a course of treatment."

The man possibly puts plenty of thought into the alternative treatments available to him and does extensive research, but how much of his deliberations are shared with a partner or close friend, particularly those factors that may involve lifestyle issues and losses. In fact he might not even want to share some of these problems with himself, preferring to push them to the back of his mind where they can remain dormant in the hope that he may not ever have to confront them.

A short anecdote: A lady conducting a stress management session holds

up a glass of water and asks her audience how heavy it is. Answers range from 200g to 500g but she replies “it doesn’t matter how heavy it is, it depends on how long I hold it. If I hold it for a minute that’s not a problem, for an hour I’ll have an ache in my arm, for a day you’ll need to call the ambulance! The weight’s the same but the longer I hold it the heavier it becomes. That’s the way it is with stress. If you carry it all the time sooner or later it becomes increasingly heavy and you can’t carry on. The moral? Share burdens with others, don’t bottle them up or take them to bed with you, they’ll just get heavier.”

When a man is considering treatment for prostate cancer and weighing up the possible issues and losses that may follow the treatment, areas he may ponder over could include some or all of: the effect on his general health, the possible loss of control of aspects of his life including bodily functions and physical intimacy, his fertility, the freedom he currently enjoys, future plans and dreams, his career, his relationships with his spouse, other family and friends, his financial situation and future financial independence, his physical fitness and mobility and how it may impact on his lifestyle and/or sporting activity, his attractiveness to his partner if he loses his libido or sexual function, his independence and the fear that he may no longer be needed and useful in both domestic and working environments.

Consideration of these options and possible side effects may in

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Bob Wyborn

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Brisbane Prostate Cancer Support Group Presentation - Coping with Grief

turn produce their own emotional reactions such as fear, anger, helplessness, sadness, hopelessness, disbelief, self-pity, fright, rage, shock, lack of control, loneliness, denial, numbness or even guilt.

Whilst the feelings of grief are normal, grief is not a life sentence and the feelings need to be resolved. You can’t run away from grief but need to learn to work through the problems and master them.

Well known writer Elisabeth Kubler Ross wrote “The ultimate goal of grief work is to be able to remember without emotional pain and to be able to re-invest emotional surpluses. While the experience of grief work is difficult and slow and wearing, it is also enriching and fulfilling. The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These people have an appreciation, sensitivity and an understanding of life which fills them with compassion, gentleness and a deep loving concern.”

There was no grief resolution manual handed out at birth and it’s important to understand that your feelings of loss or grief are unique. The feelings have evolved because of your individual physical, mental, emotional and spiritual relationship with those close to you and the world in general. No one else on Earth will feel exactly like you do. Avoid 'Job Comforters', those friends, relatives and others who say that they know just how you feel. They don’t!

Regardless of whether grief is caused by problems or loss following a cancer diagnosis and/or treatment or caused by other major life disruptions you must accept your range of emotional states before they can be resolved. Your 'emotional day' may include such feelings as lethargy, anger, nausea, sorrow, joy, fear, disbelief, jealousy, anguish, regret and many more. This is normal grief behaviour. Be kind to yourself, false recriminations will hinder any resolution of problems.

Share your feelings by discussing your problems with a partner or trusted relative or friend. Speaking openly about them can be a very healing experience. Sharing helps to download those pent-up emotions, which can be beneficial in giving your life a wider perspective. Another way of doing this is through a Support Group established to meet the needs of your particular circumstances. It doesn’t necessarily need to be an established group such as a Prostate Cancer Support Group but can be just a group of family and friends.

Meditation can be great way of reducing stress and the emotional pressures brought about by grief and loss. The psychological, spiritual and physical benefits derived from meditation are well documented. There are various forms of meditation and these are covered in any number of books and audio/video presentations on the subject. Find one that’s right for you or join a group that regularly practices a form of meditation that suits your needs. Other group spiritual practices could include such things

as Yoga, Tai Chi etc. The use of a physical discipline to enhance the wellbeing and “wholeness” of our bodies is without dispute

Exercise is another way to relieve stress and this could take the form of walking, bike riding or swimming or something more structured that may mean joining a gymnasium. Walking could be hiking through the bush or a walk along a beach but walks in any environment can produce the same effect. There is a healing aspect to all routine physical exercise as it reprograms our brain into a regular pattern in which it functions more clearly. The physical exertion expended in a gymnasium is another positive way of expunging those emotional demons that build up in our bodies as a result of the pain that grief and loss engage.

Massage is a great way to relieve pent up pressures and assist our minds in getting perspectives back to reality. The body stores emotions and they settle and tighten our muscles and tissue. A regular weekly or fortnightly massage can relieve an enormous amount of tension that builds up as a direct result of the stress and grief we carry around. If the cost of a professional masseuse is out of the question a massage carried out by a partner can be beneficial and have a degree of intimacy missing from the professional. Again there is any number of books or audio/visual presentations available covering massage techniques.

Other good stress relievers are music, various breathing techniques and vocal expression. There’s

continued on page 11

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QPCN | April 2013

continued from page 10

Brisbane Prostate Cancer Support Group Presentation - Coping with Grief

untold healing power in listening to the music you love and playing it whenever you like. It can soothe the spirit and invigorate the soul. Different breathing techniques can be used to release stress and advance wellbeing. The one thing they have in common is the maximising of oxygen in our bodies, which revitalises and helps maintain bodily functions. Vocal or oral expression of our feelings can release tension. It can be beneficial to scream, yell or simply state our problems to the 'universe' whenever we feel uptight however the place in which we carry out this activity needs careful consideration so neighbours are not alarmed and law enforcement officers don’t arrive en masse.

Finally, when trying to resolve problems which arise from grief

and/or loss there are a number of things that may impede the process. Some of these (eg legal matters) cannot always be avoided but nevertheless should not be dwelt upon unnecessarily. These are:

1. Denial

2. Revenge

3. Hatred

4. Unwillingness to deal with the pain of grief

5. Unawareness of how to deal with the pain of grief

6. Resentment

7. An unforgiving heart

8. A heart that has lost love

9. A decision to stay in your grief

10. Self pity

11. Our belief systems

12. Permanence theory

13. Academic unrealities

14. Unresolved past life crises

15. Excessive drug or alcohol intake

16. Social stigma

17. Poor employers’ attitudes and workplace laws

18. 1Clichés

19. Legal necessities and medical reports

20. High risk taking activities

21. Escapism through work, sport or other activities

22. Sublimation of our feelings.

Bob Wyborn at Grief & Wellness Services

Phone: 0419 683 195

www.griefandwellness.com

SOURCE. AAP, 25 January 2013

Ita Buttrose has been named Australian of the Year. She has been recognised for her extraordinary media career and health care campaigns, including prostate cancer. Australian of the Year Ita Buttrose wants to promote a more positive approach to ageing by tackling community attitudes toward older people.

Congratulations also go to Senior Australian of the Year Professor Ian Maddocks, a palliative care specialist who is a passionate advocate for peace and has received awards for his research. Indigenous Australian of the Year goes to Shane Phillips, who is a respected member of the Redfern Aboriginal Community in Sydney and operates a mentoring program to help young people, and

Akram Azimi has been named the Young Australian of the Year for his outstanding mentoring work with indigenous communities. He fled Afghanistan with his mother and brother, arriving in Australia as a child refugee.

Congratulations Australian of the Year

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QPCN | April 2013

Daily Multivitamin Associated with Lower Cancer RiskREFERENCE. Anna Azvolinsky PhD, Freelance Science Writer and CancerNetwork Contributor, 25 October 2012.

Results of the study were presented at the annual American Association for Cancer Research (AACR) International Conference on Frontiers in Cancer Prevention Research and published in JAMA. by J Michael Gaziano MD.

A large study of older doctors shows that those who took a daily multivitamin had an 8% lower risk of cancer compared to those who took a placebo pill. The men in the study were followed for over a decade as part of the Physicians’ Health Study II. This is one of the largest and longest studies addressing the health benefits of vitamin use. The study is also the first long-term study to assess the health effects of a daily multivitamin, according to the study's lead author the researchers plan to follow the study cohort over time to understand the even longer-term effect of multivitamins.

The most common type of supplement is a multivitamin, taken by at least one-third of adults in the United States. Previous studies of long-term vitamin use have been inconsistent in identifying a benefit in terms of cancer outcomes. Most studies have tested a single or small number of high-dose vitamins and minerals rather than a multivitamin and none have demonstrated a benefit in terms of cancer incidence. Of the studies that tested the role of a multivitamin on a

specific cancer, the results range from a protective benefit, no link, and even a harmful effect. Another large, 15-year study of 88,756 nurses showed a decreased colon cancer risk among those who took a multivitamin.

The Physicians’ Health Study II randomised 14,641 male US physicians’ 50 years old or older to either a daily multivitamin or placebo starting in 1997. The median follow-up was 11.2 years with 2,669 total cases of cancer recorded. The most frequent cancer type was prostate, found in 683 in the multivitamin arm and 690 in the placebo arm.

Men taking a daily multivitamin had a statistically significant reduction in total cancer incidence. When the results were analysed for specific cancers, no link between any cancer type, including prostate and colorectal cancer, was found. No significant difference in cancer mortality was seen between the two study arms.

A total of 1,312 men in the study had a history of cancer at randomisation. Among these men, a daily multivitamin was associated with a reduction in total cancer, but the results were similar to those of the 13,329 men who did not have a history of cancer. Overall cancer mortality was numerically different, 403 men in the multivitamin group died of cancer compared to 456 men in the placebo group, but not statistically different between the two groups.

“I was not completely surprised [by the results] because it was a multivitamin of relatively low doses of each of its components, and over 30 separate vitamins and minerals were included,” said one researcher, who was not involved with the current study. But he added that “the result that prostate cancer incidence does not appear to be impacted by multivitamin use is of interest and should be further examined.”

In their paper, authors postulate that the overall reduction in cancer risk seen in this study may be due to the “broader combination of low-dose vitamins and minerals contained in the multivitamin rather than an emphasis on previously-tested high-dose vitamins and minerals trials may be paramount for cancer prevention.”

One limitation of the current study is that the participants were all well-nourished, relatively healthy men for whom the effect of a multivitamin may be more pronounced compared to less well-nourished populations. Assessing how a baseline nutritional status affects health outcomes for those who take a daily multivitamin should be addressed in future studies.

Researchers are not aware of other large-scale multivitamin cancer prevention trials, but believe that there will be some in the near future, particularly for women, who were not included in the current study.

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QPCN | April 2013

The European Breast Cancer Conference News Round-upTreat nutrition and cancer research cautiously: study, 5 December 2012 (Reuters Health)

Studies suggesting that everything from cinnamon to lobster either raises or lowers a person's risk of cancer may sometimes be a bunch of baloney, a new report suggests. Researchers created a list of 50 random food items, then found studies from the last 35 years that claimed risks or benefits for the majority them. But most of the claims were based on weak evidence. The paper was published in the American Journal of Clinical Nutrition. Online 28 November 28 2012.

Men more likely to die of cancer: study, 6 December 2012 (Reuters Health)

Not only are men more likely than women to be diagnosed with cancer, among those who get the disease, men also have a higher chance of dying from it according to a new study. In an analysis of cases of all but the sex-specific cancers like prostate and ovarian cancers, for example, men with the disease were more likely than women to die in each of the past 10 years, researchers found. Overall, men with any type of cancer were six percent more likely to die of their disease than women with cancer. When men and women with the same type of cancer were compared, that difference rose to more than 12 percent. The Journal of Urology, online 3 December 2012.

Cancer rates rise, but so do chances of survival, 11 December

11 December 2012 -The number of Australians being diagnosed with cancer has almost doubled over the past two decades, but sufferers are increasingly likely to beat the disease. An Australian Institute of Health and Welfare report to be released on Tuesday shows the number of new cancer cases grew from 66,000 in 1991 to 114,000 in 2009. About 121,000 Australians are expected to be diagnosed with cancer this year - 56% of these cases are expected to be in males.

Abiraterone Benefits Chemo-Naive With Advanced Prostate Cancer, 11 December 2012 (HealthDay News)

For chemotherapy-naive patients with metastatic castration-resistant prostate cancer, abiraterone acetate correlates with improved radiographic progression-free survival. Charles J Ryan MD from the University of California in San Francisco, and colleagues, randomly allocated 1,088 patients with metastatic castration-resistant prostate cancer who had not received previous chemotherapy to receive abiraterone acetate (1,000 mg) plus prednisone or placebo plus prednisone. The study was published online 10 December in the New England Journal of Medicine to coincide with the US Food and Drug Administration's recent approval for expanded use of the drug.

Image-Guided Biopsy May Improve Diagnosis of Prostate Cancer 11 December 2012

Researchers from the University of California, Los Angeles have found a new and better way of diagnosing prostate cancer using magnetic resonance ultrasound fusion targeted biopsy. There were 171 men who participated in the study at the UCLA Clark Urology Center, 106 underwent biopsy for surveillance and 65 had an increased prostate antigen (PSA) level but previously negative biopsies. The men had an average prostate size of 48cc and PSA of 4.9ng/ml. The finding was published in The Journal of Urology.

Most Unaware of Out-of-Pocket Costs for Prostate Cancer Tx, 4 January 2013 (HealthDay News)

Most patients with localised prostate cancer know little about the out-of-pocket expenses (OOPE) of the different treatments, and would not have chosen a different treatment even if they had known the actual OOPE of their treatment. Olivia S Jung from Harvard Business School in Boston, and colleagues, conducted a qualitative research study involving 41 patients with clinically localised prostate cancer enrolled from the urology and radiology practices of the University of Pennsylvania. The study was published in the December issue of Urology.

Information Sourced from CANCER DAILY NEWS

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QPCN | April 2013

Dear Editor,

Should men with prostate cancer have the annual flu shots? What if they are currently in the process of having treatment for their prostate cancer?

Name and address supplied.

Letter 1

Letters to the EditorMay be forwarded to QPCN using the address or e-mail in the contact details section. As the editor of your newsletter I welcome and encourage your feedback, and will attempt to address areas of your concern.

TELL YOUR STORY: (Anonymity preserved if requested) For assistance with your writing, contact the Queensland Writ-ers Group, which is located in the Queensland State Library and offers

seminars and advice to budding writers and authors.

Contact:qldwriters@qwc.asn.au Ph 07 3842 9922

Forward a copy of QPCN to a friend, a neighbour or relative. The key to conquering prostate cancer is prevention, greater awareness and early diagnosis.

Forward a copyContact details: Queensland Prostate Cancer News (QPCN)Mail: PO Box 201, Spring Hill Qld 4004

E-mail: qpcn@cancerqld.org.auPhone: via Cancer Council helpline 13 11 20

Thank you to the reader regarding vaccinations for men with prostate cancer. I am passionate about immunisation. It is a topic that has received media coverage recently. Australia was listed in the lowest world ranking group for immunisation status in developed countries. I try to maintain my own immunisation status and thought I was covered, but despite that I managed to contract whooping cough in 2012. There has been an epidemic of this in the last 1- 2 years partly because of the nature

Responseof the sero-conversion rates and the longevity of effective immunity of this condition.

So I certainly endorse annual flu vaccinations. Anyone over 65 years of age is entitled to a free Government funded shot, or anyone with a recognised medically determined high risk of problems resulting from flu is also entitled to a free annual flu vaccination. The popular media are reporting that the flu season will strike earlier this year, so put this on your to do list, and tick it off.

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QPCN | April 2013

ResourcesAndrology Australiawww.andrologyaustralia.orgPh 1300 303 878Andrology Australia is the Australian Centre of Excellence in Male Reproductive Health.

APCC Bio-Resourcewww.apccbioresource.org.auThe national tissue resource underpinning continuing research into prostate cancer.

Australian Prostate Research Centre – Queenslandwww.australianprostatecentre.orgResearch, collaborative opportunities, clinical trials, industry news.

Cancer Council Helplinewww.cancerqld.org.au/cancerHelpline Ph 13 11 208am-6pm Monday to Friday.

Cancer Council Queenslandwww.cancerqld.org.auResearch to beat cancer and comprehensive community support services.

Cochrane Librarywww.cochrane.orgAustralians now have free access to the best available evidence to aid decision-making.

HealthInsitewww.healthinsite.gov.auYour gateway to a range of reliable, up-to-date information on important health topics.

Lions Australian Prostate Cancerwww.prostatehealth.org.auThe first stop for newly diagnosed men seeking information on the disease.

Mater Prostate Cancer Research Centrewww.mmri.mater.org.auComprehensive information for those affected by prostate cancer, including the latest research news.

Prostate Cancer Foundation of Australiawww.prostate.org.auPhone 1800 22 00 99Assistance with the experience of diagnosis and treatment for prostate cancer.

Queensland Chapterwww.prostate.org.auInformation, patient support materials, and contacts for advice on living with prostate cancer in Queensland.

Copy this link into your search engine, sit back and enjoy. How to stop a nightmare: http://www.wimp.com/stopnightmare/

Special monthly bonus for email subscribers

continued on page 14

Queensland Prostate Cancer News (QPCN) is available each month as an electronic newsletter (QPCe-N). All the usual features, articles and information are there but it is a “greener” magazine, saving the paper, ink and energy used to produce the hard-copy.

QPCN is jointly funded by Cancer Council Queensland and the

Have you signed up for e-news yet?Prostate Cancer Foundation of Australia, both of whom rely on donations to fund their operations. The money saved by converting hard-copies of the magazine to electronic versions can be channelled towards other areas of prostate cancer awareness and research. Plus, QPCeN is in readers’ hands up to a week earlier than is

the case with a “snail-mailed” hard copy.

To register, simply send an email containing your name, address and phone number to: qpcn@cancerqld.org.au and we will send your monthly QPCN to you via email from the next edition.

THANK YOU FOR YOUR SUPPORT!

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QPCN | April 2013

Queensland Prostate Cancer NewsMail: PO Box 201, Spring Hill Qld 4004 Email: qpcn@cancerqld.org.au Phone: via Cancer Council Helpline 13 11 20

Prostate Cancer Foundation of Autralia and Queensland Chapter CouncilMail: PO Box 10444 Adelaide Street, Brisbane, QLD 4000 Email: queensland@prostate.org.au Phone: 07 3166 2140

Brisbane PCSG - 2013 meeting program Cancer Council Queensland, 553 Gregory Terrace, Fortitude Valley.

Evenings at 7.00pm (Even months) Mornings at 9.30am (Odd months)

April 10 Dr Suzanne Chambers - Psychologist; PhD in prostate cancer. April's meeting is a book launch, Dr Chambers is our guest speaker talking about her book 'Facing the Tiger'.

May TBA

Partners of Men with Prostate Cancer meet on the 4th Wednesday of each month between 6pm and 8pm at Cancer Council Queensland’s Gregory Terrace building. Members come together to share, learn and support each other in a warm open environment. Light refreshments are provided and there is parking underneath the building. For more information phone Wendy Marshall on 07 3878 4567.

Contact Details

Council (ie the Council of the Queensland Chapter) accepts no responsibility for information contained in this magazine. Whilst the information is presented in good faith, it may contain information beyond the knowledge of Council and therefore cannot

be taken to be the opinion of Council. The information in this magazine is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your qualified health provider with any questions you may have regarding

a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here.

Disclaimer

You have received this magazine because you have provided your contact details to Cancer Council Queensland or to a Prostate Cancer Support Group (PCSG). The primary purpose of collecting your contact details was to enable support, resources and information to be offered to you as a person affected by or interested in prostate cancer. Your contact details are held in the local office of Cancer Council Queensland. Cancer Council Queensland ensures compliance with the Privacy Act, and does not

use or disclose your details except as you might reasonably expect. You may access your details and you may request that we correct or amend (ie update) or delete your details.

If you are a member of an affiliated PCSG you will initially receive by post or email your local group’s news-sheet, the monthly Queensland Prostate Cancer News (QPCN), and the national quarterly Prostate News. You may also receive other communications from time to time such as

advice on upcoming symposia, news or surveys from research establishments, details of open clinical trials and guidelines being reviewed. You may ‘opt-out’ of any of these services at any time, ie you will no longer receive any material of that type, by letting us know your wishes. QPCN is available online at http://www.pcfa.org.au/qld/newsletter.htm. Should you receive multiple copies, please let us know which address(es) to remove from which mailing list(s).

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As you slide down the banister of life, may the splinters never point the wrong way. Anon

Thought for the day