Cancer Research UK main site

Coming to terms

JRH
Offline

Hi,

 

My name in Jamie, and my dad has cancer. Around xmas time last year he was told he had Lung cancer (which has now been determined to be from asbestosis). He is 61. In February he was given a lobectamy that was advised to be successful. About 6-8 weeks ago, He called me in a lot of pain and couldn’t breath. I tool him to the hospital and after a couple of days were given the enevitable news the cancer was back. Spreading into his liver and his bones. We were told at that point this was non curative. When I asked “do we mean terminal” I was told well this will kill him. 

It was decided that a regiment of 4 chemo sessions spread 3 weeks apart would be started. He had lost roughly 3 stone in weight in a short space of time before flowing also. The chemo started 3 weeks ago this Thursday and although it was very good on the day, the next day and week following floored him. It was decided that he would go into the Marie Cuire hospice for a bit of respite. He went in the following Tuesday and remained there for the best part of 2 weeks, returning home on Friday. Yesterday I talked with his, as he calls her “Cancer Nurse” and she advised me that he is no longer strong enough for chemo and it may do him more harm than good, so all Chemo is cancelled. I asked if we are now moving to palative care, which was replied to with yes. I wasn’t given any time frames and still haven’t at this point. 

When I spoke to my dad he was quite casual about it and besically said “good, I think thats wat made me tired anyway. As long as I can manage to keep eating and keep my strength up I think I will be okay” I am a little concerned he isnt aware of the gravity of this, as from what I understand, ‘last roll of the dice’ as it were to have any fight, even to just slow down would be the chemo. He has made comments leading me to think he believes he has years left, which is concerning me that he might not be at a level of understanding of whats happening. Let me add he isnt exactly the most educated man in the world and he didnt have a clue what Pallative Care was. 

I am a bit worried that although I dont want to be the harbinger of doom and also have him just become a defeated and morbid Just of a human being, I think he needs to know and really understand what this means. We have Marie Curie nurses almost daily and, but they try to talk to him and he is the type of guy who is constantly interrupting with a silly anicdote or joke and I can really see (as I have for 36 years of my life) that he isnt really listening or taking things in and just more interested in showing his funny side, or his apparent knowledge or understanding. Ego is a nightmare around my dad.

So I’m having trouble with it all as you can imagine. Concern is around how much time my dad has left. I really need to know this. In peoples experience, when would they be in a position to tell us this? Or is it a case of wait and see sometimes?

 

Thanks for taking time top read,

 

Jamie 

  • Offline

    Hi Jamie,

    I happened to come across your post by chance as I haven't logged in to the website for some time. I was sorry to read of your Dad's prognosis and can understand your upset and concern.

    I am writing as someone who was diagnosed with Stage 4 Lung cancer early last year and whilst I dont have any answers, I thought I would at least try to respond. My treatment journey has been quite different to your Fathers in as much as I have just come to the end of another course of intravenous chemotherapy and remain on a daily oral chemotherapy drug.

    A GP wanted to refer me to the local end of life team in spring 2016. I was somewhat taken aback by this and talking this through with him, he seemed to backtrack from this idea. In fact I was still working at the time and I was only medically retired from work om July of this year.

    Since diagnosis I have decided to take each day as it comes. I decided that I didn't want to know how long the Consultant thought I had to live as I didn't feel this information would help me. Instead I have carried on in taking each day as it comes, hoping for the best, in terms of having a long retirement, but at the same time making sensible plans for the worst such as paying for my funeral. My partner also died of cancer 14 years ago, and during the 5 years they battled with the disease it seemed to help them by remaining focused on beating the disease.

    Reading your post, I was left wondering whether your Father understands more than he is letting on? I imagine his stay in the hospice is hardly an event that he can forget about. Your post also left me thinking that providing his outlook to life isn't causing him harm, such as spending alot of money on a holiday, he wont feel up to going on, that maybe is denial is whats's right for him, just for today. My outlook has had to change somewhat as my illness progressed, and I imagine your Fathers outlook might change as time goes on.

    I hope that my response may have been of some small help and hope that your Father, yourself and your family get all the help and support you need.

    Paul

     

  • Offline in reply to Earthseaged
    Hi Paul, Thank you for replying and also for sharing your story. I am sorry to read you are also going through this yourself. After reading through your post a couple of times, I have to say you are a strong man and are clearly up for the fight. To continue to work for so long with this all going on shows strength in character also. I digested what you had written and though about what you do and you parents did to cope with your journeys and made me think a bit more on how this might affect my dad, given the man he is. Today, after speaking with some of the Marie Curie nurses again I decided to have a conversation with my dad about what he thinks is happening. I could see at first he wasn’t 100% sure and was more trying to give me what he thought was the correct answer. I explained it wasn’t a test and I wanted to share in what he feels is going on. I was at first a bit concerned when we discussed Pallative Care again and he replied with “I know I wont get better, but I could just be this way for the next 10 years”. I didnt diswade him from this, although I did try to caution him against making too many future plans, like his thoughts of a Holliday in the philippines. Not that I dont want him thinking positively, more that I didnt want him chucking thousands of pounds at a holiday website for months down the line that he wont be able to use. He did seem to take this quite well. It helped us discuss the enevitable end and whilst it got a bit weepy we both benefited from it as I understand where he is and he in turn understands where I am. Communication was key for us today, as before when we talked, I just don’t think we really spoke or listened. We both know where we each are, and it does seem that we are on the same page, and we are also at a level where we can talk about when the time comes and what’s his wishes are and whatnot. We are still going to be doing what we promised each other and laugh at this all the way. We have been cracking every joke in the book about his condition, and not letting it beat us mentally. My dad has never been the most PC but he also loves poking fun at himself and we are laughing a lot more than we are crying. Long may that’s continue. Once again, Paul, thank you for your post as I believe it helped a lot and helped me do what I was dreading, even though it turned out for the best. Well as best as we can expect in this situation. I hope anyone having similar difficulties will read this thread and take away from it as much I have, Thanks from both of us, Jamie & Rab
  • Offline in reply to JRH

    Hi Jamie,

    I'm glad if you feel anything I wrote was helpful for you and your Dad. I was touched to read your response. I can imagine that your conversation must have been emotionally very draining for the two  of you and so thank-you for going to the trouble of replying.

    Wishing you and Rab all the best for the future,

    Paul

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.