My dad is dying

Okay so I'm not sure if i already posted this as the website went weird on me, but... (Sorry the post is so long) 

After the onclogist telling us my dad has stage 1 lung cancer (4 months ago)... You can understand my shock when we were told that, in fact, it has been stage 4 all along. 

I got angry and upset at the doctors and wonder how the hell they made that big of a mistake!! 

But i just dont know what to do anymore. I dont want to do anything. I am numb. 

My dads mom had cancer so it probably runs in the family. Although, i didn't think it would happen like this. I though that my dad could enjoy his retirement after 50 odd years of working hard for us and looking after 5 kids on his own as my mom left. 

Theres so many things i wanted to do for him and hate that he's going to miss out on so much. Like seeing me graduate from uni or walking me down the aisle. 

But now i dont feel like working on my grades or even getting out of bed. It's all i can think about. 

My dad is such a funny, caring, loveable man and the fact that my bestfriend has been given a prognosis of 8 mths to 2 years (for 2 years the odds are very low) is killing me. 

He is in pain alot as the tumor in his lungs is pushing on his nerves and doctors are reluctant to prescribe alot of stuff. So im now on a mission to sort this out. 

But my main question is why haven't they offered radiotherapy? As i know that this is used along with chemo to extend life. His oncologist is very hard faced and doesnt seem to understand. 

Along with this, i just don't know how to emotionally deal with this. Sorting out funerals and all that stuff is taking a toll on me. I am only 22 and did not expect my dad to be dying now. 

I just dont know what to do 

 

  • Awful news. But it may not be the doctor's fault. The problem with cancer is that not all cells are detectable. When you are told stage 1, like me, it only means that no cancer cells have been found apart from the primary tumour. But a small number of cancer cells, too small to be detectable, may have spread elsewhere. The moment these cells are detected in tests, the cancer is upstaged. But not before then. It is not retrospective. Will a cancer be upstaged? It depends on the cancer itself. But much of this is a game of chance, a roll of the dice.

    Or maybe your medical team has made a genuine mistake? The test results may have indicated stage 4, for example, but the medical team somehow missed it. A misinterpretation of a scan result, say? 

    It may be a good idea to tell the university about your Dad's condition, and how hard you are finding it to study. And are your brothers and sisters able to share the load? I have a feeling that you are bearing a lot on your own. xx Harry 

  • Im not too sure what happened. The oncologist said it has always been stage 4. Yet he was saying surgery was an option 2 months ago. Im really confused. Im going to phone them later and clear things up. I couldn't do it at the appointment as i was too emotional. I read online radiotherapy is used with stage 4 cancers so i need to ask about that. And my sister helps alot. She's the older one out of all of us so she keeps us all together. My brother has taken the news hard and started drinking heavily. And i dont see much else of my other 2 brothers. Thing is i wanted my dad to see me graduate and coming to terms with the fact that he may not is devastating. I'm only this far in uni cause he believed in me
  • Your dad will be always proud of you and will forever believe in you. Dont give up! It's very hard to come to terms with all this. You need all those questions you have answered . Write them all down so you don't forget any. I lost my parents 13 months apart from each other so I have had a tough couple of years .
  • This has been truly devastating to read. I really want to be able to support you, but I think the best way to find support is in your friends and family (you have 4 siblings who can support you, and you them). You have to be strong for him. I lost my dad just over 3 weeks ago and I have been very up and down since, though hearing that he is your only parent really threw me. That and you feel devastated by the graduation and marriage aspect as well. I'm not married either and I feel gutted all my siblings had him at their weddings but I won't. I'm due to graduate postgraduate teacher training in a few months and this makes me feel sad too because he was so proud of me and everything I've achieved and I will be devastated he won't be there to see me. I also turn 30 in less than 2 months and just wish he could be here to celebrate with us all. There's always going to be something, and no time is ever a good time for these things. I felt the same about university work at first, but the best advice I could give is to harness any sadness you have and turn that into a positive driving force to be the best you can be, to work hard and to be the person you know he would be proud of. This is what keeps me going at the moment. While I'm utterly heartbroken he won't see it, I am part of him and he knows I would have made it in the end. I can also put this energy into a PhD and be a catalyst for change in the world. Take each day at a time, spend as much time as you can with him, work hard and be proud of all you've achieved. I hope this helps and please let me know if you need anything at all. Frances
  • Thanks for that and I am really sorry about your dad too. Watching someone you love go through the pain of chemo, radiation etc. is horrible. I'm just utterly in disbelief. I don't quite believe it yet and it such a strange feeling. Its more of a shock because my grandad lived to 96 and I thought my dad had a lot of time left. 8 months to 2 years (odds for 2 years being very low) is not enough time for everything. 

    Also, I don't live with my dad so if I have a day where I am too busy to go to my dads (I don't drive, otherwise I would go everyday) I feel so guilty. I just can't believe that it had been stage 4 all along and we were never told! Although, his cancer is only in his lymph nodes. I thought stage 4 is when it spreads to other parts of the body?

    I'm frantically phoning doctors and going to ask for a second opinion (the docs aren't open today as its good friday). I am also booking an oncolgist app to discuss options. I can't just let them offer him "top up chemo" which will prolong his life but not really do much else. I'm angry and hurt at the oncologist as he is not at all explaining anything!! 

    In regards to staying at uni, I feel I can pass my exams etc. but if anything happens to my dad in my last year (2018-2019) then I feel I will not achieve the best grade I can. 

    I used to worry so much about university work etc. but now I have forgot any previous problems I had as my dad is my main priority. I was thinking about giving him cannabis oil. I mean, it couldn't hurt, could it? He's already going to die anyway according to the oncologist. 

    I'm just lost. Even when i dont see my dad everyday, I make sure I call him at least twice a day to tell him I love him and talk about our days with eachother. I have always done that since I moved out 3 years ago. 

     

  • Thankyou, I know he will always be proud but seeing him at my graduation would have been one of the biggest things in my life. He has always said "I cant wait to come to your ceremony". It's not just that either. My dad has had a hard life brining 5 kids up on his own and finally his retirement comes and as luck has it, he has cancer. 

    I am sorry about your parents, that must of been terrible. Do you find peace knowing that they are not in pain anymore? 

    I am determined to get all of the answers to my questions. I am making an appointment with my dads oncologist and talking through everything. 

    I'm not giving up on him yet, I wanted to try alternative meds to help pain or to prolong his life even more. If i don't focus on something like this, I know a deep depression will hit me. 

  • Hello Nicole. I am truly sorry to read about your dad's lung cancer and prognosis. I am only too aware of the feeling after being given a terminal diagnosis and wishing you could do anything to change it. My late husband was diagnosed with terminal NSCLC in January 2016 with a prognosis of 9-12 months, unfortunately he only lived for 6 months. He was unable to have any chemotherapy but was given 4 doses of palliative radiotherapy purely to try and give him some quality of life .There is no way that I would have tried to give him any of the alternative or even complimentary medicines that seem to be widely available on the internet whereby some are just making money out of very vulnerable people. Instead I just did as the oncologist advised, plenty of calories which my husband so enjoyed for a while while he was still able to eat. I maybe speaking out of turn here but I think that the best thing for you would be follow the advice from his medical team and believe what they say. I have read your previous posts regarding your Dad being diagnosed with Stage 1 when all along it has been Stage 4 and you trying to get answers as to why, when really it makes no difference to your present situation. You are such a loving daughter so why not make life a little bit easier for yourself and concentrate on quality time with your Dad while you still have him. Kind regards. Lynne.x
  • It is difficult and these are the parts of life that I understand you desperately want to change. If my dad taught me anything, it was that you must accept what you cannot change and change what you cannot accept (if it is possible).

    As for your university, they will have counselling services for you, please get in touch with them and do all you can to help yourself. Fill in Special Circumstances and extension forms, inform the student support team. They can only help you if they know. So for example, if something happens mid-exams or mid-assignment and you haven't forewarned them, then they can't do anything about your grades or re-sits so I'd cover yourself from all angles and take as much support as you can from them. What is it that you are studying?

    From my understanding, stage 4 cancer is when it's reached it's peak locally, for example liver cancer goes in stages 1, 2, 3 and 4 within the liver, then when it has no where else to go within the liver, it travels to the lymph nodes this is how it spreads. Have you taken advice from the CRUK helpline? I think they have people that can help you with what to do next.

    As with any job, you have good doctors and bad doctors and it's a shame actually particularly when you are dealing with vulnerable people. A professional requirement of the job should be that your bedside manner is up to standard.

    All I can say is that you need to stay positive, and keep supporting your dad. Life is tough and these things just aren't fair but it is what it is and we must take from it what we can. For me, I'm taking strength to do everything I want to achieve.

    I hope this helps a little bit - I can only help with the non-medical stuff really! 

  • Nicole, reading your story has made  me feel a bit better. We are pretty much in the same situation. I am 21 turning 22 in a few months and am also at university which I will be graduating from next year. I understand how hard it is to do work and try to make it through the day. Sometimes I just want to dorp out, but keep in mind this will benefit you in the long run and it can be somewhat of a distraction, at least for me. When my mind is on something else I forget about the pain for a while. We found out in November that my dad had tumors on his liver and the doctors have no idea if it originated in the liver or somewhere else. It's grown so much that his liver is swollen and his stomach sticks out greatly, even though he is very thin. To answer your question about radiotherapy, it could be because of where the cancer is. They told my dad they wouldn;'t do a transplant because it would be a waste of a perfectly good liver and refused to do radiotherapy because the liver is so sensitive and it could cause his liver to fail. I think it would be similar with the lungs because it's such an important organ and could cause the same thing. My dad has chosen not to do any treatment since the only thing they can do is chemo and they said there's only a chance it could work. 

    I also get sad thinking about my dad not being at my wedding or seeing me have children. It's so heartbreaking that I don't even want to get married. It's aweful to watch your parent die and give them comfort when it should be the opposite. I have my mom who is supportive and even though my parents aren't married, she tries to help. My brother is kind of in denial and avoids my dad a lot which upsets me because I only see him on the weekends. How is your dad dealing with this? Is he okay with dying or is he sad/scared? It might make you feel better to visit him and talk about all this stuff because time is precious in this situation. x

  • Hi, I am so sorry, my dad was diagnosed with asbestos 12th February this year, I am totally overwhelmed, he’s not got long to live now, he sleeps most of the day, today he had a catheter fitted, he’s started to get restless, I can’t think or do anything apart from be with my dad x