Great. More bad news

johnrp1964's picture

Today I had my first appointment with the oncologist. It was shit, scuse french. I have adenocarcinoma. Cancer is in both lungs, they are also looking at a presacral nodule which is supposed to be somewhere down my back area. It's also spread to the glands in my neck. I was doing ok at my first meeting with them till they broke the news to me that the cancer is at stage 4 and is incurable. I was told that people with stage 4 lung cancer typically survive around 1-2 years. Tonight im looking up holiday deals. This shit is too much to take anymore. I cant get counselling till i see the mental health care nurse on the 23rd november. The person who runs the only cancer support group in town is away on school holidays. So sick of all this crap. I want someone to talk to in person, not over the phone or email. I give up.

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BJS's picture

Re: Great. More bad news

Hi John, Sorry to hear your bad news, life can be totally unfair at times! My husband John has stage 4 cancer & is now into his 14th month since diagnosis. When he was first told he had cancer I tried to talk him into going overseas but he wouldn't, we've managed a few trips away in Australia instead. My advice is travel as much as you can now! John is at the stage where he can hardly walk to the bathroom. From my experience of caring for John, one of the most important things you should do is exercise. When John first started doing Chemo we treated him like an invalid which was the wrong thing to do, his muscles started to waste away because we did everything for him, once we made him exercise he was a lot better. Try to keep fit even though the chemo will make you feel like crap, stay positive, do as much as you can & enjoy each day as it comes.

Hope you had a wonderful engagement party!

Barbara

BJS's picture

Re: Great. More bad news

Hi John, Sorry to hear your bad news, life can be totally unfair at times! My husband John has stage 4 cancer & is now into his 14th month since diagnosis. When he was first told he had cancer I tried to talk him into going overseas but he wouldn't, we've managed a few trips away in Australia instead. My advice is travel as much as you can now! John is at the stage where he can hardly walk to the bathroom. From my experience of caring for John, one of the most important things you should do is exercise. When John first started doing Chemo we treated him like an invalid which was the wrong thing to do, his muscles started to waste away because we did everything for him, once we made him exercise he was a lot better. Try to keep fit even though the chemo will make you feel like crap, stay positive, do as much as you can & enjoy each day as it comes.

Hope you had a wonderful engagement party!

Barbara

maddie86's picture

Re: Great. More bad news

sometimes the best thing to do is escape.. my boyfriend and i went to port douglas before his terrible surgeries and it was the best thing we did.. we had such a nice romantic time, it was good to forget his cancer for a while... Smile

johnrp1964's picture

Re: Great. More bad news

Cant wait to escape all the crap! Tonight though the cancer can go to hell. Its grand final day (go cats lol) and we have our engagement party tonight. Gosh Im so nervous....my speech is all ready Smile Everythings ready. Today I'm happy oh yeah Smile

maddie86's picture

Re: Great. More bad news

good luck for tonight!! Smile

SILLY's picture

Re: Great. More bad news

I had asked for counselling before I was to begin radiation.It was available at the hospital but my husband and I went to Fiji for a week between Planning Day and radiation. I was given an appointment which arrived by mail and on the answering machine while we were away. The appointment was on one of the days we were away. Irang when we got home and found out and was told they'd make another one.Weeks later my husband approached someone in the hospital as I was still waiting .I got to see one near the end of my time and she said I caould continue to see her but to try and find someone near home.

I saw my gp who couldn't recommend anyone .She suggested I look myself. It was then I decided to ring the Cancer Council fof advice. That call went for over an hour and the person with whom I spoke was wonderful. She booked me an appointment to see one of their counsellors. They provide 5 sessions free of charge in person or on the phone. At any future time if I feel I need more I can have 5 more . This is nothing to do with the 5 sessions covered by Medicare.

My advice is start with a call to the Cancer Council. It was the best thing for me.

johnrp1964's picture

Re: Great. More bad news

I was a little incorehent last night. I did get a lot of answers from the oncologist yesterday. This is what they told me.

I have adenocarcinoma. The origin of the cancer is still unknown but they suspect that it is most likely a lung primary. Its also non small-cell cancer.

The cancer is on both sides of the lung. The MRI I had of my brain came back clear, so I guess that's one positive thing. The cancer is at stage 4 and is not operable or curable. The best they think they can do for me is to give me treatment anyway.

I had to do another series of blood tests (LDH and BHCG) whatever the hell that all means. This was to rule out that the cancer is of testicular origin which they said responds well to treatment. They say this is pretty unlikely though.

The cancer is in lungs and has spread to the lymph nodes in my neck. There was also a small lump showing up in my lower back area. Something called a presacral nodule. The oncologist will meet with the radiology team to see what they think.

They are sending more of my biopsy tissue off for mutation testing which will indicate whether I can have treatment with tablets rather than PIC line? chemotherapy. The mutation analysis takes about 3 weeks.

More waiting. I hate it, I really do. Tomorrow night I have my engagement party. I am not holding up well at all and I have to give a bloody speech. All I have been doing all morning is crying my bloody eyes out.

It really tore me up lying next to my fiance this morning watching her face while she slept. I have waited 46 years to find true happiness only to end up having the rug pulled from under me.

I told her that was the worst thing about all this, that I really wanted a long future with her and suddenly now everything is in fast forward mode. I said that I just cant contemplate being separated from her in any way Sad

I also asked her how she felt about this as I can see everyone is sympathetic towards me as I have the cancer. She says that she lives in denial and tries not to think about it.

I thanked her and held her and told her how much it meant to me for us to be able to discuss it.

This morning I am so aware of my breathing. It may sound crazy but I started to wonder how many breaths i have left in me, that I am one closer to the end. Its a terrible feeling. I am not afraid of dying at all really as I believe whats on the other side will be good. I just hate to think about leaving what I have right now behind when I go.

pimbok's picture

Re: Great. More bad news

John, I am so so sorry. I know you don't want to talk to someone over the phone, but I spoke to the cancer help line yesterday and they were surprisingly fantastic. If there's anything at all I can do, just let me know.

Kim

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