My dad was recently disagnosed with termal cancer. My question is a little hard to answer answer without knowing a bit of our back story so here it is:
About 8 weeks ago now I got a call from the nearest 'big' town hospital and told dad's had a stroke. So I got the first plane I could get on and then drove from brisbane down there. When I got there he was out for a CT scan in the next biggest town up. When he got back and we got the results we were told he had Melinoma that had spread to his brain(he had two secondary miligant melinoma removed from his head about 3 years ago now and nothing since with regular checkups). The next day I got him up to the Princess Alexander(PA) Hospital in Brisbane which he had delt with before.
He was given Dexemethozone and began to improve on a daily bases. We were told the swelling around the cancers not the cancers themselves which were making him act funny(couldn't talk or use motor skills). He started Raidiation Therapy 6 days after he was admitted in PA. His treatments were on the Thursday, Friday, weekend off then Monday, Tuesday and Wednesday. He was discharged to me that Friday. He suffered no sickness and was basicly his old self(had a small problem putting names to faces).
Three weeks after we left Brisbane he began saying he had a pain on his head but wouldn't see a doctor for about a week. When we finally went to the doctors he hospitized and treated dad with radiation burn(later we found out it was actually shingles). He swelled up in his head on the right front of his head(where we were told the cancer was). He was discharged to me about 2 weeks later but was still in pain so we went and got stronger painkillers(oxycontin 80mg a day and endep 25mg a day). The next day the Palative Care nurse brought out Ordine(1 ml contained 5mg of morphine) and was told to give when required. About 3 days later he began going down hill, seeing things that werent there, confusion and anger.
About a week later the Palative Care nurse said dad was no longer at the stage where I could look after him at home. I took him to the PA hospital the next but he also stoped taking tablets for me. They did a CT scan and said that not only were the cancers smalliers but there was no swelling. The emergency doctor told me that ment it was unlikely it was the cancer. The doctors on the ward said it was most likely a infection, the painkillers or dehydration. A week when by and when I asked agian I was told that he probably would not get any better than he was now(basicly no improvement).
They said he probably had 4 things working agianst him causing his problems: the cancer, the painkillers, the dehydration and the infection.
I am having a hard time getting my head around this.
The cancer is smallier and without swelling which is better than last time we were in Brisbane so why would it be that?
He is still on the painkillers so thus it doesn't rule them out BUT he is on 1/4 of the dose he was on when he was at home so there should be some improvement right? Also he stopped taking painkillers the day I took him to PA so shouldnt he had shown some improvements?
They gave him a 5 day dose of anti-biotics via drip when he was hospitized so shouldnt that have improved him if the infection was causing the problems?
While he was on the drip he was getting liquids thru the drip. If he had dehydration as the main problem why did he not improve?
I can't get my head around the logic that the doctors are telling it is these four things causing trouble when it seems we have attacked all four things to varing degrees. I was planing on writing this last night but my computer was bugged. Today I saw the social worker and explained it to her because I go to water when the doctors tell me scary stuff like dad wont recover from this and then she was going to talk to the doctors and they aranged a apointment with the doctors at 2:30 tomorrow.
What more can I be doing? Where is my logic breaking down?
I also have a subject I'm not really sure how to approach with the doctors. So far dad has been misdiagnosed twice in my 8 weeks for caring for him(stroke really being cancer and raidiation burns really being shingle), how do I bring up the 'you might be wrong' question without offending them.
I kinda feel that seeing the Dehydration, Infection or Painkiller hypothesis didnt pan out the doctors are using the termanal cancer tag on his medical record as an excuse not to look for further causes. Is that wrong to think? Does this happen?
Sorry for the long post...has been building for a bit.
Oh this must be so frustrating for you. I know what it is like to wonder if the medical side of things are up to speed and if you make waves or question decisions, will it be your father who cops the fallout.
You are your father's spokesperson and guardian. It is up to you to ask the questions, including the difficult ones. Don't worry about offending the medicos by asking if they might be wrong. Do not ask in an accusatory manner - just relate the salient points as you have done in your posting here. Write some brief points down to help keep you focussed. Rank them in order of importance or concern so that if there is limited time, then the big questions are asked first. If there is not enough time for a discussion, ask when an appointment for this can be arranged. Ask for the social worker or a friend to attend with you so that you do not feel as if you are fobbed off.
Continue to look after yourself too. Either use this forum to vent or speak to a counsellor.
Wishing you well in your journey.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.