Hair gone!

What can I say?

12 May 2013
Had my hair shaved yesterday. Two weeks after chemo and overnight it started to fall out. There was hair all over the floor and on my pillow. I kept waking up having hair all over my face. Arrived at Reflections hairdressers just before they opened and asked them to shave it off. No 1. Not shiny bald yet, but now showing all my grey which I have diligently covered with a variety of colours since the first grey air emerged in my early 40’s.

I don’t mind the bald thing. I don’t let things like that get me down. Just embrace, love and know that it will come back as soon as this is over. Women put too much of their self worth and persona on their heads of hair. I cannot tell you how many people have said ‘You are so brave’ ‘Do you have a wig?” ‘I don’t know what I would do if I had to go bald.’
I say ‘I have no choice – and I love it – is very liberating!’

Oh and, PLEASE DO NOT say to me—‘At least you will save on Shampoo!’ Agghhhh…PUKE!

As all of the people who attended the Cancer meeting last week said…
‘ Nothing prepares you for those words ‘YOU HAVE CANCER.’ And…..from that moment on, your life and who you are changes forever!

I finally conceded and have stood down from my new job. I love working at the Museum and the opening of the new Clyde Fenton Gallery on the 9th May was fantastic. If you live in Katherine or are just visiting, make sure you have a look at this amazing little museum. Fantastic stories and the Flying Doctor Gipsy Moth plane looks fantastic in its new space.
The Museum needs a Manager to be there five days a week and I need to concentrate on my health and not worry when I cant get to work as there is so much to do.

I have been mortified to have phone conversations this week, with a 32 year old mother of 2 babies just diagnosed with breast cancer and a 37 year old mother of two undergoing treatment for bowel cancer. They have good family and friend support but the fear of the unknown is the worst part in the beginning, and every one you talk to seems to have a friend or a family member going trough cancer and are intent on telling you in depth stories about them!

The lack of support for cancer suffers in town is sad, disgraceful and embarrassing. I will look at staring a support group and get a story in the media about the lack of services and support and see if we can some support services here in Katherine.

6 May 2013

Twelve Days after Chemo and I feel great.
I had my haircut short in preparation for hair loss.

Following a few days of barely being able to get out of bed, each day has just gotten better and better. I still need more rest than normal but slowly the metallic taste has faded, I can eat more normal and feel stronger. Haven’t lost any weight!

Life goes on with going to work at the Museum for a few hours a day, attending meetings, and arranging more chemo appointment’s, blood tests, friends and family visiting, facebooking and emails.

I attended a Cancer Support meeting organised by Cancer Council in Darwin – They have not been down here for at least a year. The lack of support for cancer patients in Katherine is disgraceful. The community raises over $50,000 per year and there are no support services in town.

We are in dire need of a Cancer support person – There are 15 people that I am aware currently undergoing treatment for a variety of cancers, Breast, Prostate, Throat, Stomach, Bowel and Brain who are travelling up and down to Darwin for chemo and radio therapy. One could assume there are at least another 14 people that I do not know – i.e. Local Indigenous, people living at the RAAF Base and on remote communities in the Katherine area.

From my Facebook page
Looking for accommodation in Darwin. Soooooo expensive. $250 for one bed for one person. Patient Travel reimburses you $30 a night. This has not changed in 25 years!
WTH is going on NT Gov. Ok for you to all travel and stay in 5 star accommodation at taxpayers expense but can only afford $30 +reimburse fuel receipts up to $95, for people having no choice but to go to Darwin for life saving treatment.
At least, Put chemo back into Katherine hospital so that patients in the region do not have to travel so far and be of out of pocket with expenses at a very stressful and sometimes life threatening time in their lives.
Greg Dowling, Myrt Stanley, Jamie Brough and 28 others like this..

Trish Cheekygal Mann Sounds like you need to be the voice for this and start meeting the powers that be and lobby for change

Kate Tapp Toni Tapp Coutts start a Facebook group that lobbies the government for a chemo unit (access) in Katherine.

Louise Woodcock- Eakin We asked for help with accom, given that I’ve given up work to care for Owen. And patient travel told us we can’t get anything until 6 weeks after we’re back home. And centrelink will make a decision by 21st May whether they’ll give me a carers allowance….5th March I put application in. In the meantime, my sister is carrying us. Xx

Georgina Sutton Same story in qld. We transport oldies to Rocky for medical appointments costs me $400 all going well and no delays, and that’s not including overnight stays. Pt travel subsidy is $100. I’ve been to every transport forum held and been a very loud champion for rural Aust with zero luck!

Toni Tapp Coutts I know the carers thing is disgraceful. My cousin who has cancer has the same issues with her husband being unable to access carers allowance. How sick do you have to be? Such a terrible stress for families at the worst times in their lives. Might do that Kate.

Louise Woodcock- Eakin And we have to stay here for a minimum of 3 to 6 months because we live in a remote area. Makes me wonder the toll that financial stress takes on ones health. X

Leticia Clemow Ohhhh this really hits home with me in so many ways. When lavinya was born near 13 years ago – PATS trvl was a waste of time every two wks tvl to Drw then 3 months in ICU interstate. My nan Thelma has had several bouts of cancer again assistance was scarce. However I work for a transport company that is flooded daily with instant and urgent PATS requests for tvl and accom to and from communities. All expenses covered. Go figure. I’m sad to hear the system still doesn’t work so well for others like yourself Toni. We all deserve the same assistance – especially under these circumstances. Get well soon.

Pauline N Mike Field Mum and dad don’t get travel assistance. Mandorah is not quite 200klm from RDH. I think it is about 5klm short of the 200

Jeanie Govan That suxs the patient travel reimbursement. I heard ‘The Cavanagh’ has booked out for the next 2 years for the Interpreters based up here to assist the illegals – you can’t get a room in Darwin for under $200 per night at the best of times (even in the blooming wet season) all the lower levels of accommodation have been booked out by the Government. How’s this I went to look at a ‘renovated room’ for sale and it’s basically a motel room next to Bogart’s in Parap – so you still have to go downstairs to do cooking and it’s $160K. The Government brought some for their workers to live in. Other’s they are renting at $350 per week.

Julia Christensen Have you tried the Barbara James house… http://health.nt.gov.au/Cancer_Services/Directory_of_Services/
Department of Health – Directory of Services
health.nt.gov.au
Welcome to the NT Cancer Services directory, the first of its kind in the Northe…See More.

Jill Kelly $35 per person per night here in Adelaide

Louise Woodcock- Eakin Not for us according to pats in Katherine. Suck it up they say.

Julie-Anne Oakes I live in Darwin. If anyone or their family needs a place to stay during treatment, then I am offering a room to them. Financial stress should not be an added burden to anyone during times like these. It’s disgraceful.

Friday at 12:13pm via mobile
Angus Holt You know you’re more than welcome to stay with me Toni, we’re only 5 mins from the hospital and we’ve got 3 spare bedrooms. Dinner and breakfast are even included in the package

Chanyn-Caroline Coutts That sounds good Fang, I might have to come stay too lol but inbox me your number and we will organize dinner some night

Jo-Anne Hersey Well said Toni Tapp Coutts

Jo E Nicol Parap appartments

Tess Nekrasov Same here Toni. Spare room for ktowners at our place in Milner if its needed. Two big smoochy dogs for extra love and attention!

Marea Fittock Sounds like a lobbying with local members for equitable travel reimbursements, certainly sounds like these have not changed for over a decade!!

Toni Tapp Coutts I am lucky I have friends n family I can stay with if necessary. What about all those people who don’t?

Narelle Rowden We got $30home a day in 1991 when Anita had her opin Brisbane. Shame on the Australian Government for caring about the boat people before Sick and needy Australias!. There should be more Government funded accommodation for people needing ongoing treatment.

Friday at 10:16pm via mobile · Like..

Fiona Foster Darcy Toni I have a spare bedroom, you are welcome!

Paulette Gaston Hay Toni have a bed at home if u need we are in the Gardens inbox in if u wish

Adrian Creighton See about Barbera James House itscheap and available for you if you are having treatment

Greg Dowling A fb group of rooms available for ktown folk needing a place to stay during any treatments would be a good thing.. it is a big stress to worry about these things on top of ones health..

Vicki Burn Barbara James house Toni someone can stay with you as well.

3 hours ago via mobile · Like..

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