Monthly Archives: December 2015

The Ghost of Christmas Past

While sitting in the specialists rooms, I really couldn’t help but notice the beautiful Christmas tree in the corner. It had tasteful lights and baubles that were permanently attached to it. Each needle was perfect, it was a green with a frosting on the tips of each branch, like it just came out of a northern forest. Beautiful, but this is Australia. I thought of my tree at home, a big artificial pine tree, with an Angel on the top, flashing lights, baubles, and lots of individual baubles for each of my children, one for each year of their lives. Lots and lots of hand-made decorations, the kids are embarrassed by them now, but when they were little and made them, of course each items was the pride of the tree. The love they put into making paper chains, reindeer out of foot and hand prints. The love of Christmas as a child.

 

tree1

When I was a child, we didn’t have an artificial tree, we had a casuarina tree. The fun of walking around in the bush with your brothers and sisters and friends from around the neighbourhood, walking and walking looking for the perfect tree to put in your house. Always a boy had the tomahawk for cutting it, I don’t know why, the girls weren’t trusted. When you found the perfect tree, you took it home and put it in an old bucket filled with sand and then it was put in the lounge room of the house. Lots of baubles and tinsel went on these trees, lots of home-made decorations and lots of love and laughter around the tree while decorating it. I am not going to romanticise this and say that there were no arguments, of course we had them. Who was to put the star on the tree? Who put that ugly thing on the tree? But over all it was a lot of fun, and it was so low brow compared to today.

tree

 

While the artificial tree always looks good, it doesn’t shed. It is lacking something, its missing the smell of Christmas, the personality of the one perfect tree, the fallen needles in the carpet that don’t always disappear until the end of January.  A tree, is one of the symbols of Christmas and I guess it’s a big one. I have had the trees of my childhood, cut trees from the Boy Scouts, the artificial beauty and a hat tree. The latter from when my immunity was really bad and I couldn’t have a tree, but I have a great hat tree, so without tinsel, baubles, glitter or anything, it became our Christmas tree.

Why do we need these wonderful perfect trees? Is it the ghost of Christmas past? Is it the loss of the ideal Christmas from our childhood? Or is it the mass media and consumerism of Christmas that makes us buy big and do silly things? I don’t know, but its nice to think about all those past Christmas holidays and hope that my kids have some great memories.

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Brain Tumour Support Services E-letter

Letter from the editor
Welcome to this final edition of the newsletter for 2015, which has a focus on the very special role of carers.

In News & Events, you’ll find details of a new Brisbane support group for young adults run by CanTeen, and a report from the recent BTAA consumer forum.

In an article Caring for the Carers, Sylvia Burns discusses the importance of self-care for both patients and carers.

The Brainchild Foundation has offered some tips to assist in caring for a child with a brain tumour. We’ve also included a list of support services offered by Carers Queensland as well as contact details.

Till next time stay happy, keep well and keep smiling.

Anne
Volunteer Editor
Brain Tumour Support Service Newsletter

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Cancer Council Queensland
Report from the 2015 BTAA Consumer Forum
Dominique Longshaw reports from the BTAA Summit held at Cancer Council Queensland in October 2015.

Highlights from the 3rd Brain Tumour Alliance Australia (BTAA) National Summit  included: the mobilisation of funds being raised for brain tumour research – both clinical and psychosocial, the philanthropic funding for a brain tumour care coordinator, and our discussion around the need to raise more awareness and funds for research in childhood brain tumours.

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Brain tumour information sessions 2015
Upcoming Information Sessions – 2016
Information Sessions – Brisbane, 2016

The first information session for 2016 will be Thursday 3rd March. Check our website in February or call 13 11 20 for details.

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CanTeen Brain Tumour Support Group in West End
CanTeen counsellor Hiromi Ogata has started a support group for young adults with a brain tumour.

The group meets every fortnight, from 12-1.30pm at the CanTeen office in West End. You don’t need to become a member of CanTeen – any young adult (18+) affected by a brain tumour can join. Attendance is free.

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Self care for partners and caregivers
Cancer Council Queensland’s Sylvia Burns discusses the importance of self-care for partners and carers.

A diagnosis of cancer can be a really distressing and challenging event, not only for the individual concerned, but also for partners and close family members as well. Although brain tumours are relatively rare, the combined effects of cancer, treatment and the brain injury that follows pose not only a threat to life but to a person’s sense of self as well.

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Cancer Council Queensland Fundraising
Caring for a child – Brainchild Foundation
To care for a child with a brain tumour, parents need to look after themselves – some tips from the Brainchild Foundation.

A brain tumour diagnosis is life-changing, for children and adults alike. For children, the experience is complicated by the fact that they may not understand what is happening.

Whatever the age of the child, the parents usually carry the bulk of the emotional burden. As a result, parents can experience depression or anxiety in varying degrees long after their child has finished his or her treatment.

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Support for family carers – Carers Queensland
At some stage in their life 1 in 8 Queenslanders will identify as a carer. Carers Queensland aims for better and broader community acknowledgement of the lives of our carers, of the tiring and difficult work which they do each day – often because there is no one else who can do it.

In order to assist carers, Carers Queensland provides a range of support services designed to help family carers maintain their own wellbeing.

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Links and useful information
Brain Tumour Support Service – printable newsletter

Download a pdf of the current edition of our newsletter to print or share.

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Making connections

Talking to others who have been affected by the diagnosis of a brain tumor can sometimes help. Connect with people over the telephone, online or face-to-face through a brain tumour support group.

Find out more about making connections

Support services for people affected by brain tumours

ABIOS, Beyond Blue Carers Queensland, CanTeen Counceling Service are just a few of the additional support services available to people suffering from brain tumors.

Find out more about support services

Australian Clinical Trials Website

Find out more about clinical trials, including information on brain tumour trials currently registered in Queensland, by visiting the Australian Clinical Trials website.

Find trials near you by using the website’s Search for a Clinical Trial tool

Brain tumour awareness

A number of organisations and not-for-profit groups are actively working to raise awareness of brain tumours and brain cancer.

Find out more about brain tumour awareness

Cancer Council Queensland

To find out more about the range of support and cancer information services offered by Cancer Council Queensland call 13 11 20, email us at askanurse@cancerqld.org.au or visit cancerqld.org.au

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Bah Humbug

It’s getting closer and closer to the 25 December, and what do I think about it all? I want to postpone it. I have in the last few days had a melt down. That is my stress levels have gone too high for my poor little tumour to deal with it. I have had some black outs. I am worried that I am going to ruin Christmas for my kids again.  Yes again. Last year, I took a long drive and scared my kids, I took the drive as I felt a head ache coming on and thought I better get out before I do something I will regret. The regret is that when I have my little spells caused by the swelling and stress I just vague out I have no idea what is happening. I am functioning but I yell scream and throw things I have become physical with my children. This is what I am scared of at the moment. I really wish I could get the stupid thing out of my head and go back to leading a normal life. I know I know I am being a bit of a sook. But it really is not fair that in this world so many suffer from diseases that they have done nothing to get. Why are people with cancer or other chronic illness made to have to deal with being ill, paying medical bills, I know of some people who even with insurance don’t get much, or the insurance drops down paying out as the med bills go higher. But back to the point, this time of year without all the stress of being ill is bad enough. The demand of presents, being sociable, having the perfect Christmas. Who really does this?

Isn’t Christmas all about the birth of Jesus? He didn’t have lots of presents wrapped in patterned paper big meals of ham, Turkey, Goose or other goodies we look at as being Christmas fare. Shouldn’t it be about the birth of that man? Even if you are not a Christian, if you are another faith or you don’t believe, why do you get sucked into the consumerism of the year? Now that I think of it, it is rather strange that this time of year is turning into just a consumer holiday. At my local shopping centre, quite a few years ago, they removed the Nativity scene under the pressure of those who don’t believe. All I can say, is if you don’t believe that is fine don’t believe, don’t take the holiday and don’t buy presents for your friends and family.  My belief in God has helped me through some of my darkest hours.

I celebrate Christmas, for me its the reminder of my childhood.  A big family. putting the tree up and having the tree filled with terrible home-made decorations that my mother always kept, no matter how old we got or how embarrassed we were by them. Putting up the stable, having the three wise men roaming around the house until the 12th day. Those guys were ripped off. In our house we had turns of moving them to a new spot each day, bringing them closer to the stable and then when they finally made it. We packed up the decorations for the year. So not fair.

But I ramble, those of you who are regulars, are used to it, thank you for persevering.  So what is my point?  Well its about the stress that Christmas puts on us and then when you are suffering from an illness, it gets compounded and you really need to take care of yourself. My preamble at the beginning was just about how this time of year has set me off. No car at the moment, constant bills, trying to do everything you can for family and friends, while most of us, don’t take care of ourselves. This is something that I can’t do, that I have trained myself into being selfish, but as I have had the ups and downs, I have at some point put my kids first and now I am suffering from it. I feel guilty about what I have done, but I am also worried that I will end up in hospital and miss Christmas, what will this do to my kids?

It’s funny how as a parent we tend to put the kids first and our partners, but when you have a major illness you have to remember to be selfish, to put yourself first. If you can’t take care of yourself, then how can you take care of others? It’s a no brainer, but we don’t do it. We do as I have done, slip back into putting yourself last, which you can’t do.  So please take care of you first.


Cancer Stories…Short and sweet.

I have posted here some of the stories that you have shared with me when you have read my blog. I waited for the writers to respond and allow me to reprint their stories. These stories are more than just a short comment box. They are important for all of us to read and to learn from them.

 

I have found that trying to find help when you have a family member, my wife is too hard. I looked all over for some aid with the kids, the bills getting to and from the hospital and the paying for the parking. I reached out to so many organisatins and got nothing for my trouble, just huge shame face over having to get help. No one was able to help me. All these cancer places that shay they help couldn’t help me. But the biggest cheek was I was asking cancer council to help me, I rang them and they told me organisations that would help, but they didn’t. But then they are asking me for money to help them. What the hell is that?  I can’t give them money when I am trying to keep my kids and my wife safe, I have to get her to the hospital I have to get her to appoinments. I have to find a way to get the kids to and from school and not make more debt by putting them in care. I have to try to feed my family when I don’t have time. I have to give my kids more than 2minute noodles, but I don’t have the time. I have to care for the kids mum. I have to make sure she is alright and that she can be safe and healthy and that we can watch out for our kids and see them grow up…

 

 

I have been battling breast cancer and I was at an end with getting help. Where I live there are no Aboriginal and Torres Strait Islander services to help me clean the house, get to the shops or get to the doctor. I depended on the community transport, so that my partner didn’t have to always take time from work. A friend at my daughters play group told me about mummy’s wish, she said he sister had reiceved some help from them, she gave me the number. I called, I spoke to a lovely woman who seemed to want to help me and I was so happy at this, then as we talked more and I explained that no Aboriginal and Torres Strait Islander sercives in my area to help with cleaning etc. She stopped and said Oh your Aboriginal, we don’t really get funding, you have your own services or try other services that get funding for ATSI people. Well I was so pissed off I swore at her. Why won’t they help me? Why do they need Government funding to help me? I hung up on her and continued to phone around, I got onto a HACS service I asked them straight away, do you help Aboriginal and Torres Strait Islander people? Do you have funding? The man on the phone, told me that yes they have funding but people are people, and that they didn’t limit the number of people they help by the colour of the skin. I was so happy I cried. I finally had somebody to help with the house, just to do what I couldn’t and to take me to the chemist and other places. But this makes me wonder how many people are not getting help because organisations do not have specific funding for Aboriginal and Torres Strait Islander people…

 

I will tell you who I am ….. I am a student with ovarian cancer. I had no idea a girl in high school could get something like that. Who is out there talking about it and helping us. I went to the doctor and my mum was sure I was pregnant. She was wrong, I have this stupid thing in my uterus. Who thinks about this when you are trying to get good grades. I want to go to university, I want to travel. now I am looking at surgery, chemotherapy and a lot of drugs. I don’t want to go through this. I have to do it alone, because who understands what I am thinking or what this thing is? My mum got a lady at the hospital to talk to me, I think she was from the hospital? She was a lot older than me, she had kids and a job and was telling me how good life will be and to be posative but, she has done what I want to do. How do I find someone who knows what it is like when you are young? Why are all the cancer ads of women who are white, rich and middle age? Where are the other races? where are the young? the only thing I see with young people all are about lukemia. We don’t fit into the box that is out htere where is us? where do we fit in?…

 

 

I read your blog, my sister showed it to me. I have a brain tumor too. I am a man in my 30 something. I read what you said about the punch drunk, saddle drunk, tackle drunk and I thhink you have hit the nail on the head. I am having chemotherapy at the moment and I feel like crap all the time. Did you get lots of head aches? did you feel like screaming? did you have times when you had no memory of what happened to you? I think that to much focus is on breast cancer. What about the average Aboriginal and TSI bloke? We don’t get enough of a mention in the government promotions. We have prostate cancer, we have a lot of cancers and we also sometimes have breast cancer. I like that you posted other peoples stories, this is mine. I found out I had the cancer because I was hit in the head with a ball at football training. It was nothing big, but the coach said I blacked out and he wasn’t taking any chances. II hated him for that, because it showed what else I had. I had this big thing in my head, I was sent off to the oncologist and other specialists in the hospital. I was given medication to start taking straight away and had all these tests, scans and things like that. I am having chemotherapy now and I will be having a surgery to remove it. But I want back all the missing time. All the times I have no idea what I have done or said. I have had to depend on my family and friends, I know what you mean about you find out who is who when you go through this. I had a lot of people disappear. I found that I didn’t know who to ask for help, no one knew who to turn to I had to move in with my sister, because I took too much time off work and couldn’t pay my rent. I spent too much money getting cabs to and from the hospital because I was sick and couldn’t drive myself and had no one to do it. I have so much to pay back with bills and this worries me. I try to stay positive and I try to deal with the debt in small ways, slowly paying it off. but I would have liked to have had some help out there to get me to and from, to help with the cleaning and washing, help to pay the bills. I have heard of people crowd funding to help pay off things for medical reasons. We all shouldn’t have to do that. We need to have an organisation to help everyone with cancer to get help.

 


Pain pain go away, come again another day

I have been having a hard time lately with pain. My back is killing me and some days I am back to using the walking stick.

As we know and it’s our little secret that I am walking when it was thought that I would never walk again. But I have done some silly things like, digging up the garden after the rain, while the ground was soft. Having to take a long walk when my car decided to have a hissy fit, but these things are happening to close together, that I am not giving myself enough time between incidents to heal. It is hard to take pain killers and rest when you have to get kids to and from places, do things around the house and go off to studies. But I guess that’s the pay off for all that has happened and still being here.

I had to get some x-rays and scans on the back and hips and the prognosis is looking kind of good, while the fractures have all finally healed the slipped discs are playing having and bulging all over the place, bit like the rest of my body really. But I don’t understand why the automatic response from the medical profession is always intervention? I get that intervention is great, but in my case not so. I don’t need to be told that maybe I might need surgery for my back. Yep I am being pig-headed again. But unless they can give me better outcomes and not just a hmm it might help. I am not going to do it. If they said surgery would do so much, we will replace your bones with adamantium which will give you no pain and will keep you upright for the next fifty years.

But no, they tell me that I am not wolverine, like I didn’t know, hell my body doesn’t repair itself. But really I just want something that will replace the bones that are degenerating and not have pussyfooting around about how they can’t do too much because of the fragility of my bones. Well then just don’t talk about it. End of story. I don’t want a false hope, I don’t want to have a surgery that if it doesn’t work will have me in a wheel chair sooner. Just leave me alone with my walker to hobble along. I am not ungrateful for this assistance, I just don’t think I need to deal with it. I don’t want to have more worries, heaven knows I have enough of them. But until something happens I am going to take it really easy for the next week or so and make sure I mend.

Thank you