I have finally taken the step towards relearning the fine art of knitting. It wasn’t as easy as others thought it would be. One Elder thought I would pick it up straight away with the needles in my hands, well I didn’t.

Needles in hand and wool at the ready, I used a YouTube starters video to watch. Casting on was terrible, I ended up with wool everywhere but none on the needle.

My son stepped in and helped me, he spend about an hour showing me and taking me step by step through it, taking the wool when it didn’t want to do what I wanted.

First problem was that I used to knit left handed, but now I can’t, so we tried again, right handed, it felt awkward and strange, but we made it through.

I started of with 20 stitches on the needle.

I have dropped some and added others, it’s a lot harder than I remember. Sometimes I seem to go alright and others I stop and have to remember what the steps are.

But that’s okay, I will eventually get it down pat, one day I will be able to knit like I used to and not have to pay attention to every step, I will be able to sit back and watch TV while the click clack of the needles goes merrily along.

I’m rather proud of myself, it might not look much to you, but to me it is a triumph over the tumour in my brain.



What a Week

It’s been a bit of an exciting week this week. I was rushed to hospital on Friday morning because I kept getting dizzy. I luckily left hospital on the Saturday afternoon. The doctor wanted me to stay longer, but if they can’t do anything and can only give me medication, I thought I might as well be at home. With strict instructions of what to do and kids being told what signs to look for to take me back to hospital I went off home

While I was in hospital the deadly Tanya caught up with me and gave me a turban for my head, to protect me.

The turban is made by the volunteers at the Princess Alexandra Hospital. Tanya from the Indigenous unit is getting them made in the Red, Black and Yellow.

We have so many reasons for covering our head, not just hair loss from medical reasons, some of us have to have our head covered until all signs of scaring are gone from out heads. We have to protect our head from the spirits who might cause us problems, this is also a mental health issue in some areas.

Oh and as for me, well I have to wait the results of blood tests and have some more scans.

Supporting our Carers

Today I attended the Menzies “Supporting Our Carers” Roundtable survey. It was a good chat about what our Carers need and what we looked for in a carer and what we expected and hoped for from them.

Some of us had one carer or we had a variety of carers from our families. One group was people like myself who have had or have cancer

My daughter was in another group to talk about being a carer. She gave an insight into being a kid who had to grow up quick to be able to take care of mum. She still is caring for mum as she is my eyes when we go out. I have some issues with vision and she is my guide and tells me what I can’t see.

The group talked about how we found that it was immediate family who fell into the carer role, because they had no other choice. There were some differences in how much to tell the carer. We don’t want to worry our family so it’s often a need to know basis, especially if its a parent or children who is the main carer. We try to stand strong so we are not a burden on the carer. This can at times help us get through, but other times, it doesn’t allow us to let someone else carry the load.

When dealing with cancer the carer should be able to distance themselves to be able to talk to the doctors if the patient unable, this is something that we find is difficult when we are using family as carers, we don’t want them to be in a situation that will cause them stressThe simple questions opened up to lots of discussions about how we accept help from family. Some of the group had not been told by hospital what help they were eligible for, this is a common problem. We don’t know the questions to ask and nobody tells us. If your carer is white or has lighter skin they will be told more and helped more than if they are not.It can be hard on the carer when they find out that they are needed long after the initial diagnosis and treatment. The effects of cancer can linger for years, also the treatment can leave the body in a bad state that takes months or years to recover from.

We looked at a brochure and discussed how this could help with patients to give information on their journey through the health system. Cancer is a scary ride and no one really tells the full story of it. Most spoke of the hidden costs of cancer and how their is now warning of this and how this can cause as much stress as the diagnosis. Treatments can have a damaging effect on the body.

Being involved with studies like this are easy and they help with our mob in the long run.

Cancer carers needed for study

I urge you to get involved with this study. Research helps to find out where there are gaps in services.

We as Indigenous people know there are so many gaps that affect our survival of cancer

Things That We Learn

It’s wonderful the things we learn as we grow older, especially the things that we learn from doing the wrong thing.

I was recently told off by my dentist for using a medium toothbrush, apparently as we get older we should change our toothbrush. I used to use a hard, but chemotherapy and illness changed that. Apparently I will be using a baby brush in a couple of years if I still have teeth. I am currently having the old fractures checked and repaired. Teeth cop it hard with illness and suffer badly if you have had chemo or been on steroid medication.

After surgery and I had my hair all cut off I am finding that shampooing my hair each day is causing me troubles. I used to have lovely thick hair, now I have thin hair and a huge bald patch. My new regime is wash it one day, next day put oil on it, either coconut or olive oil. On the fourth day after washing I can wash again. My hair is so thin and I think I will have bald patches soon.

I wonder what I would look like with a comb over?

I have only one mutant fingernail at the moment. Not many people realise that you can get tinea on your fingernails. I get it after I bump my fingers and feet. I bruise easy and if my finger tips are bumped hard eneough I get tinea under that nail. All it takes is the bump, that dislodges the nail a bit, which allows the fungal infection to get under. Use Tea Tree oil or eucalyptus oil. Little bit on the top of the nail, where it looks white and keep applying as the nail grows, as it get near the top, you can put a drop of two under the nail.

Cradle cap, is not just for babies. It can come as your hair is growing back, just treat it the same way you treat it for a baby, use baby oil on the head.

Cracks in the corner of the mouth are common and thrush in the mouth. Cracks in the corner can be treated by applying honey on the cracks it only takes a couple of days for it to heal. Honey also works for mouth thrush. I have known a few patients to use a topical tinea cream in their mouth, but putting some on a swab and wiping it around the mouth, waiting about ten minutes then rinsing.

I often have baby oil and use it too. Oils are great for giving moisture to the skin. After you have cleaned yourself in the shower and before you leave the shower, put a bit of oil on your washer or keep one just for this use. Then while in the shower wipe your whole body with it and its a great moisturiser. If I use a cream it’s always plain sorbelene cream and put on my body while it’s still wet. After this dry off as usual.

Time Flies

It’s been a while and I’m still muddling along. I’m not allowed to drive. I’m not allowed to go anywhere without a responsible adult and the never ending struggle for rent is getting me no where.

I regularly end up in arrears because I have huge med bills to pay, the never ending bills of my life. I try to keep positive and remind myself the medication is what has kept me alive to enjoy the over due electricity or phone.

It’s hard to see the rich people pretending they have it hard. Or the prime minister who might be a christian, but is definitely not a good or moral man. If he was he would be doing more for the poor, rather than lining the pockets of the rich.

I put my first application for housing commission in 9 years ago, when I had three kids still in school, I was very high need. But now I’m just a high need. I have a feeling that nothing is going to be done until I am living in my car, and that really isn’t too far away.

Too many people need a safe home, yet there aren’t enough homes. Far too many people are struggling with bad health and not enough help out there for them. What kind of country is this when women leave a DV situation and have no where safe. Families are homeless and feeling lost.

I’m dying and I guess I will at least be safe and secure in my urn after I pass. I have a daughter who Centrelink stopped giving her youth allowance last year, and no matter how many times we have gone down to them, nothing changes. I had my disability cut off for ages around Christmas, but they never give back pay when they stuff up.

So I sit here and write of my frustration of not having enough money to pay the bills. Sure I could cut down, but what? we very rarely have a heater going and no air con in summer. We don’t have Foxtel or anything fancy like that. We buy only on special and home brand, and often use Foodlink.  I have a phone on a plan, if I use up the data or call credit, I have to suck it up. My washing machine has been broken for ages and I continue to use it, as I have no choice. I stand with it every time it does a spin cycle and have to stop it, or it fills up endlessly with water.

I guess I will have to go back to not getting medication or seeing some of the specialists. It’s not really worthwhile living if you can’t do anything but worry and stress and cry about the bills you can’t pay.

After Charlotte

I have mixed feelings about Charlotte, she has been a part of me for the past 10 years. Although I say she is not part of my identity, that brain tumour has become a part of my identity.

In a strange way I miss her. I am not talking in a Munchhausen way, it’s just that for so long it has been a part of me. The medications from treating it have caused my weight gain. Treatments have made my bones brittle, thus the fractures in my hips and the lower spine. These bring me a lot of pain and have minimized my movements. My hair will never be the same again.

Before my weight, bad bones and sometimes lack of hair has all been easily put down to the brain tumour. Now I will have no excuse and just be an overweight, cranky hobbling old woman. It has taken away the excuse. This leaves me in a position where all will just see the outcomes and not the reason. I’m annoyed at this, because I am not happy with the changes the last 10 years have made on me. I still don’t recognise the overweight person in the mirror. I know that much of this will not leave as it’s the price I paid to be alive for longer than expected.

I sit here waiting to go to the hospital for the results of scans to make sure they left none of Charlotte behind. I certainly don’t want to have to deal with this again. I’ve had more than my share of coping with a brain tumour and I want to be free of it. I want my body to get used to not having it there, I want my eyesight to return to normal. I want to go for days on end without a headache. I want to be able to hear kids squeal and scream without having to reach for painkillers. I’m looking forward to all of this.

I’m hoping to be able to help more people, I want to go back to visiting the hospitals and talking to Indigenous patients about cancer and how to seek help. I want to be able to go to a football game without having to be pumped up on drugs and leave half way through because it gets too much for me.

I’m ready for the next chapter of my life