Another story from a brother that wants to share…
I’ve read your blog and thought I would share with you my own, don’t use my name but can you email me privately. I have Gastric adenocarcinoma to the layman that means stomach cancer. Stage III, I guess I brought on the cancer in someway, the doctor gives me that look and shakes his head. I have been called non compliant for not taking all my mediccne, the reason I hadn’t took them was simple, I couldn’t afford the bloody things.
Let me tell you, chemotherapy, radiation therapy and surgery had me off work for a couple of months, then more chemotherapy and lots of pills and tablets some of them cost $140 dollars for a box of 21 tablets, you put that with the cost of the tablets you take while having the therapies and then you have the tablets for all the upsets that those medications cost. I was paying out $600.00 a fortnight on a good turn and $600.00 when symptoms would change. I don’t earn millions, I thought I had a good wage until this. I have medical insurance, but that doesn’t help me with the bills, and I found that the more money I paid to doctors and the hospital the less I was getting back from the company. I found that some xrays and tests cost way too much. Paying a couple of hundred for xrays and ultrasounds for my stomach every couple of weeks adds up to a couple of thousand in a short time. I took holiday leave that covered me for a short time, I applied for sickness benefits, I thought I would fit the requirements, I wasn’t working, I was unable to work, I hoped to go back to work but I didn’t get it. I wasn’t eligible, how was I to make ends meet. How do I pay for medications, tests, hospital, doctors and all the extra stuff that is on those bills, while I still had to pay off my car loan, rent, food, clothing, schooling and the other extra stuff. My wife wage pays some of it, but really no where near enough, luckily we have only one child, 10 so at least that’s a bit cheaper than a baby. But there is never enough money.
I checked with my family doctor about close the gap, I thought this might save some money, it did but only on the medications that I had already reached some threshold of buy medications, so some medications, were free. Did you know that? When you pay over a couple of hundred dollares for some medications you can get them for free for a year, I didn’t kow that until the doctor told me. Even with this it didn’t help with the medicine that costs over a hundred dollars and I had 3 lots of those. It doesn’t help with the xrays and ultrasounds that cost a lot and that the health insurance company gives you back less and less because you need so many of them. I noticed a few doctors seem to want to save the hospital money and not the patient, they tell you to get your family doctor to check on this and that, you tell your doctor and he sends you for the tests, instead of getting them in the hospital, my doctor told me that, it saves the hospital money but you have to pay for them, costing you money that you can’t afford. I had to find ways to make the medical bills smaller and this kind of things doesn’t help.
Of course we cut back on things at home, I wasn’t looking to save money by intentially cutting my treatments, if I thought of doing that my family would have stopped me. We don’t live an extravagant way, we are humble, pay our bills, don’t drink or smoke, once a month we try to do something fun as a family, maybe go to a movie and have dinner at Sizzler. We all play sport and that was the first thing that went, no more basketball, that was tough on the little guy, but he understood. We gave up the once a month family outing, we cut foxtel, we cut back, we bought mainly homebrand everything. All this and it still wasn’t enough, I still had trouble making ends meet. I had times when we had to make a choice do we buy groceries or pay off the car loan or do we buy the medication. I never once stinted on the rent, I was scared that if we go behind we would be evicted. I thought of selling the car, then I would have no more car loan to pay off, of course I couldn’t do that because it would have cost more in the end, when you weigh it up, taxi cost a lot. Yes I could take a bus to the doctor he wasn’t too far from us, the hospital I had treatment was about fifty kilometres and a four bus changes I know my limitations and I know that would be too much for me on a sick day, I am not a tough or big inner strength person, I think I lack in those areas. Other arguments in favour of keeping the car were carrying shopping home, getting my son around to friends or family. End result no selling the car. I was still a man trying to make the money spread, not enough money too many bills. I had times where I my prescription ran out and I couldn’t afford $140 for tablets. I felt embarrassed about this I didn’t want to tell anybody that I was too broke to get medicine. It took a while before the doctors caught on that I was not always having my medicine. I became sick and had an infection that just wouldn’t budge so I went into hospital for about a week, that’s when they found out that I was sometimes not taking my medicine. I told them I just forgot to take them on occasion, I didn’t want them to know the truth. Everybody in the hospital or going through treatment seem to have it together, they don’t seem to be struggling to pay the bills, they don’t seem to be scared that they could die, they don’t seem to be scared for their family, they seem to have a different reality from me, almost live in a different world. I was ashamed that I was broke. My wife made things worse, when she said that she always reminded me to take my tablets, I could have killed her, but when we were left alone, I had to tell her the truth that I wasn’t always buying the medicine, because we couldn’t afford them. I had to tell her that I didn’t want her worrying and crying anymore about it, so I didn’t tell her.
I can cope with the pain, I can cope with the overly friendly and loving people because you have cancer. I can cope with not working, not being able to do much activity because of the pain. I cannot cope with the lack of money. The uncertainty of could we be evicted, could we lose the car, could we cope with no shopping. Not having enough money to pay for the day to day things. Not having enough money to buy my child a school jumper. In my mind, going without a tablet here and there was the obvious choice. I wasn’t wanting to die, but I wasn’t wanting my family to suffer. I don’t think anyone with cancer should have to choose between medicine and other bills, surely there are enough people with cancer that the government should make all the medications on the benefits scheme or some other scheme. Reading you I have found that I am not alone, If the government really wants to help with the gap, maybe one thing it could do is to make all cancer medications cheaper for Aboriginal people. Cancer medication should be on the close the gap, I read that a lot of Aboriginal and Islander people have cancer and die from it, maybe having cheaper medicine could help that. Cancer council should be helping to get medicine cheaper. I think because cancer doesn’t make you sick for a day or a week it makes you sick and the time off work is a long period the government should automatically allow sickness benefits while you have treatment and for the recovery period. Cancer affects all the different parts of your life, it’s not a small thing, helping patients should be the gold standard. Struggling to pay medication should not be something that anyone has to face, if you can’t afford them then you are noncompliant and they think you are lazy so the doctors and nurses don’t take you seriously or they think you are trying to die or get attention, silly really but that is how the system works and you then have to waste time talking to social workers and counselors who once you explain why, then shrug their collective shoulders and tell you to contact lifeline or something like that. It really doesn’t help.
I am getting better, but I am in debt, we had to take out a loan a big loan that I would have preferred to buy a house than have to pay for medicine. I had two years away from my work, and they don’t want me back after such a long time, it’s nothing personal, but it feels like it. I am working parttime until I get completely well and I can get a fulltime job. I will be paying for my cancer for the rest of my life. I should be grateful, but I can’t when I think of the financial burden I have put on my family. Thanks for hearing me.