Hi Jules_68 I knew for four years or so that dialysis was lurking just over the horizon. At first it was pretty confronting but I managed to steer clear of it until late last year. My eGFR had not been above 15-20% in the four years but a bout of pneumonia and the stress of trying to keep a place in the workforce took their toll and I ended up in hospital feeling very relieved that dialysis was eventually going to start. I did feel angry at the start. I had a couple of people I could reveal that to and that helped. And it is a huge lifestyle change to deal with but I am pretty accepting of change anyway so I haven't resisted in a warrior kind of way if you know what I mean. It still pisses me off, of course, but I have options as to how I view it. For me the trick has been to accommodate the change. By doing that I feel I am still in the centre of my own life and there is nothing to complain about. It is not a matter of comparison with other people. It is a matter of getting into the middle of it all and start calling the shots as a person with a life just like anyone else. That works. H ... View more

Good to hear from you Superwoman. Come back again and chat a bit more. It's a place where you can let go by writing things. I have been using this site for more than two years now and it gives me a huge boost just knowing I can say how it is for me. H ... View more

Hi wren Thanks for your post. I liked reading it because you write so directly and clearly. You have a very conversational style and I find it easy to engage. It sounds to me like you are on the right track taking it one day at a time as you certainly have had a rough time of late. I used to call my portapack pumper thingy 'Malcolm'. It was strapped to me for four days at a time and injected a mil or so of chemo into my arm every hour. 100 mils was strapped to my chest with the pump and lasted the four days. When it injected chemo it made a little noise which reminded me of the noise made by the remote controlled ashtray in the bank in the movie Malcolm. It made a 'zippy' little noise and then went quiet for the next hour. I am curious as to why you chose Horhe as the name for your port. Anything to do with Jorge Luis Borges. Hope so. H ... View more

As a hungry young male I could with one stare bore a hole in the head of a younger sibling who so much as looked at the shank end of a lamb roast. Terrible. Just terrible. ... View more

On Sunday night we would have a tea cake or cheese on toast. We'd get back from the local oval just in time. ... View more

The way I remember it, I became completely absorbed into such moments. I had a way of entering a blissful dimension where I could perform amazing physical feats while the crowd cheered. Occasionally I would need a band aid and a cuddle, but mostly I was a real life hero. What's for dinner? H ... View more

I know exactly what you mean, Smiler. It is a great feeling to know that you are telling the truth/saying how it is/being honest/venting or whatever it is called. The label for that action does not matter, does it? What matters is that feeling of being in control of your own life. I remember I only started to take control of my situation after I had that same moment you did. Good on you. Write some more. H ... View more

Good on you, Allicat. H ... View more

Allicat, I have been visiting this site for more than two years and this is one of the most extraordinarily honest posts I have read in that time. I congratulate you for having the courage to write it and then post it. Your insight into the impact of cancer is wonderful. It helps me think about my own situation in a new way. Thanks for that. Maybe for you there is value in having somewhere private where your feelings and observations can be special, because they are. A journal? Here? New friends? Keep in mind that cancer may well have changed all those family relationships anyway. It's a new game either way, isn't it? And can you really 'go back'? What is clearly special about you might grow more in the future, separate from family dynamics. These are just my first responses to your wonderful post. H ... View more

I had a full body CT scan that cost me hundreds and hundreds of dollars. Three years later I had another one to check on everything and it was bulk-billed. I think my oncologist made a decision to request bulk-billing for the second one. So all may not be lost! My observation is that doctors will do a lot to help you in managing finances/employers/insurance/super/etc if you leave it up to their professional judgment and not present with a demand for support. If you do present with a demand they are likely to back off and not use their leverage, because any support they offer needs to be based on their medical opinion, not on your financial needs. I am not saying that is what you are/have done. I am just saying that it is something to keep in mind. H ... View more