I guess I could have done a blog for this, but I decided to so a post instead.
My dad is not quite 70 and has been diagnosed with oesophageal cancer. He has been told it has spread to his pancreas and that it is in operable - this is all from his chest / midriff CAT scan.
He is waiting for a PET scan (approximately 2 weeks where he is) and then he will have a wait for about a week until his case is discussed and then they'll give him staging / prognosis.
Dad gets breathless, has significant low back pain and hip pain...the detective in me makes me think that this is suggestive that it might have spread further (hell, it's already in his pancreas so it's moving around).
Dad is a wonderful but complicated, stubborn and flawed (it's a family trait!).
Dad's partner - who he's been with for about ten years - also has issues with me (daughter from first marriage) and whenever Dad's partner meets me, she just wants to talk about Dad's past and Dad's estranged son (my brother, I'm also mostly estranged from him, but I know what his life is doing due to my mum telling me). Unsurprisingly, both of these things upset my Dad immensely (last time he broke down in tears) so Dad has consistently worked very hard to make sure that Dad's partner and I do not see each other so she can't start talking.
This means that I rarely see Dad, and Covid has made it worse. However he can talk to me when she is not around on the phone - he will end the call when she comes back ("gotta go love, she's coming back from the shop").
Dad's diagnosis last week came as a complete shock - he'd been told it would be a hernia - and without going into huge detail, Dad has gone into some kind of shock / grief. He is alone all day whilst his partner is at work, and then, in his own words, puts on his happy / brave face to welcome her home from work. He has no date for his PET scan, and says he feels he cannot do anything until he knows - so a minimum of three weeks.
Dad and his partner are planning to get married - "just the two of us" - the explanation being that
I have suggested that I come down to see him - I have made it clear that this would be whilst the partner is at work, and that I don't want a big "cancer chat", or to take lots of photos, just to sit and be. Dad has told me in no uncertain terms that he has no interest in seeing me. He shouted that I am not to come down to see him (he lives about four hours away), and that I am to respect his privacy and his choices because it is his journey (these don't sound much like the type of language that Dad normally uses, I think he has read it somewhere).
Dad's NHS cancer nurse (I am allowed to call her) has told me that Dad's looks reasonably well at the moment (I asked if he was likely to make it to his PET scan at all), but she is only allowed to confirm what Dad has already told me (she could not tell me it was inoperable, that came from Dad who slipped up telling me). Treatment options will be discussed at prognosis but my Dad doesn't like pain, doesn't like being sick and having seen both his parents die a lingering death, I genuinely think that if he is told it is palliative only (which I assume he will be given it's inoperable and spread), he is likely to refuse any treatment.
I am aware that there is nothing I can do.
I thought about just going to see him - but given his response to the suggestion on the phone, I don't think this is a good option.
I am aware he is in shock and going through emotions I can't even imagine, but I feel like I have been given this information and then told that I am not to do anything, not to come and see him.
I know he might "change his mind" down the line, as he processes information - but I fear there is not enough time...and even if there is, he is a fantastically stubborn man, and hardens his heart easily.
There is part of me that thinks "well why the hell tell me then?" but I know the answer - his partner will have told him to, and it would have been easier to call me (except he didn't call me, he called my husband and told him, so that when I called Dad, I already knew and Dad didn't have to do it) than tell his partner he didn't want to. It may well have been that he'd rather not have me know.
My worries are that:
I'm not going to get to see him before he dies.
When he does die, I won't know, because his partner won't tell me.
Any suggestions?
Hi @dusk21,
Just wanted you to know you had been heard. As you say there may be no answers to be had with cancer really just adding to the issues that were already there.
You are spot on too that we can only really control ourselves and the best we can do is let people close to us know we are there and accepting of their decisions.
One mistake I make early on when I heard the term palliative care was that it meant the end was near - actually it is care focused on easing symptoms rather than curing the disease. That little bit of information can change the whole way we see the future - though we all need to remember that tomorrow is only a promise at best.
<<hugs>>
Steve
