A week and a half ago, I took YD to visit the graves of her Poppa (OH’s dad) and her godfather K, both of which had passed away in 2000. It had been one of the things on the list of things we had written earlier in the year of things she wanted to do when she came home for the weekends but we hadn’t got round to it until now.
I had a little bit of ulterior motive taking her this time, with the progression of the tumours in my liver and no guarantees that the last couple of chemos we have got to try will give us control for much longer, there has been more thought, and talk, about the virtually inevitable outcome to this story. As YD lives away from home in a residential supported living environment to a certain extent she has been shielded from the worst of the chemo side effects and we have been able to keep the whole ‘cancer’ thing a little less scary for her. But this means that she doesnt know , unlike her two older sisters that this is likely to turn terminal at some stage in the future.
As an aside, I personally think in staging cancers now there is long term survival, control and even sometimes some sort of remission acheived in metastatic cancers (Stage 4). There needs to be a stage 5 introduced where you have exhausted treatment options and are in palliative end stage. Stage 4 could be seperated into Stage 4a (control and shrinkage of the tumours as to be negligible) 4b (stable no growth) 4c (progression but still treatment options available )
Anyway, in discussions with L, who is the manager of the houses in the residential service that YD uses, there has been discussion around how much we tell YD and L has suggested we tell YD more. I feel that at the moment when things are so up in the air time-wise, and while I am still fairly active it would just confuse her to talk about me dying when she deals in very concrete concepts and time-frames. We have told her with this latest news that the cancer isn’t going to go away and that I have to change medicines and the new medicine will make me lose my hair again. She was quite blase about the news as to her nothing much has changed then in the last 3 years.
Taking her to the visits to Poppa’s grave on Saturday and K’s grave on the Sunday (they are buried in two different cemetaries, in opposite directions from our house) allowed to us to have a talk about death in general. She knows that Poppa and K were buried whereas my parents, who died in 2001 & 2004 were ‘turned into dust’ (cremated). She expressed a wish to be buried herself and asked where she might be buried. She also asked where I would be buried when I die, which helped me make up my mind between burial and cremation for myself, as she expressed a wish to be able to visit my grave when I die. So although YD doesnt know that my death is likely to be sooner than she expects, I feel like we have done some preparatory work around it.
After visiting K’s grave on the Sunday we went to a nearby mall that we had not been to for a while. We did some Christmas shopping and surprisingly bumped into people we knew. Usually when we go out it is when YD gets tired that the outing ends. This time we left the mall when my fatigue etc kicked in. YD was very grumpy about leaving and coming home so in the car I reitierated how I feel sick and tired, because she only sees me when I am up to doing stuff with her I dont think she realises just how much my health is compromised. I have warned I might get more sick and tired and that she can’t expect me to take her out all the time. I think that is all the preparation I can do for now.