This is a fun ride isn’t it?
30 March. Another appointment with the same respiratory doctor, except when we’re called through it’s not her, it’s an oncologist. I immediately know.
Yep. The first PET scan was slightly too high, so missed that it has spread to his liver and back (his back pain has been increasing lately, to the point where he’s very uncomfortable). Also it’s in two places in the lungs. She is positive that even if it had been picked up sooner, we would be in the same position as where we are now. Of course my parents ask how long (I mean, it’s what we all want to know, and it’s only from my extensive listening to Griefcast that I know they are only ever guessing) and the doctor says ‘six months, with treatment’. Somehow my parents take ‘six to twelve months’ away from this (again, I’m not going to be the harbinger of doom and go NO THEY DEFINITELY SAID SIX). They will do radiotherapy on his back to reduce the pain, and they’ll type the lung tumour so that IF (and it feels like a very big if) they see vast improvement they can look at radiotherapy again in the future. They can ‘no longer offer’ radiotherapy on his lung as it could make things worse (not sure if they mean him coming in for a month of daily therapy). They are referring him to the palliative care team. Follow up appointment in three weeks.
The doctor is not cold exactly, but sort of school teacher-esque. I cannot imagine doing this for a job, but when it is your job I don’t know, maybe act like it’s worse for the people hearing this?
Both my parents apologise to me for having to be at the appointment and hear the news. I’m 50 years old and they are still protecting me. My brother is on a ferry home from Europe, four hours out of port and I call to give him the news. He’s very matter of fact and ‘thank you for letting me know’.
In ‘of course this day could get even slightly worse’ it takes me over fifty minutes just to get out of the car park before I can attempt the 45 minute journey home. My husband has messaged to say that our daughter’s parents’ evening was brilliant, and I’m thinking how can I go home and tell them? How?
I do, of course. I have to. I literally wail. Kids are a bit bowled over, understandably.
Over the next few days I let my work colleagues and other people know, more in a ‘if I’m not functioning properly or I’m slow to get back to you, this is why’ way. My brain wakes me up super early with questions like ‘how many cars will we need to take us all to the crematorium’ - it’s a form of processing it all I guess. Six months plus maybe a bit extra with palliative care takes us to maybe my birthday, his birthday, Christmas? Excellent.
I listen to a lot more Griefcast. I start reading ‘With the End in Mind’ by an ex-palliative care doctor. I can only read it in small doses.
Over the next month he has the radiotherapy but slowly deteriorates. It doesn’t really seem to make any difference to his pain levels. We go to a follow up appointment with the same oncologist who is much more human this time - she says they won’t get him to come in again as it’s clearly too much. His medication increases every time my mum speaks to someone about it. He starts hallucinating from the morphine. I go over every Friday and nearly every time he says something that’s upsetting in one way or another. In early May he says he doesn’t want me visiting him again because he doesn’t want me seeing him as he is now. The following week he says I will forget him. Then he says something about never walking round the garden again (they have this large calming garden that he loves) or walking the dogs again. We have discussions about his DNR form and what he does/doesn’t want for his funeral. (Hi dad, I’m here to upset everyone yet again!) He cries over the unfairness of it all. I know I’m probably skipping over large chunks, but it’s so hard to see him wincing with pain and there being nothing that can be done.
I’m worried about Mum. Being stoic is her default position but this is so huge. Finally she agrees to getting a carer in. Thomas is visiting from Florida and he is a huge help - not only has he already been through something similar when he nursed his ex-partner in his final days, but he’s so ‘can do’ and he breathes in sync with dad through the pain, which helps calm him. They go for afternoon tea to my parents’ favourite restaurant and we go to the pub for dinner, although we have to cut it short as dad is uncomfortable. We take the kids over to see him and get some pictures. He looks frail and yellow in the pictures, but is insistent on standing up for them.
I’m so frustrated that there isn’t more of a road map to dying. How do we know when we need to do more? Some of the signs that come up on google searches he has, some he doesn’t. Does this mean something? I know, logically, everyone is different, every progression is different, but the not knowing is really hard.
/end part three
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