Scary words aren’t they?
As one of my friends said they are words you associate with people who have only got weeks to live, not with me.
Have I only got weeks to live? – the answer to that is a resounding NO!!
Yet I have both these words in my life now. I have struggled against my own psychological perception of these words, and they butt up against my perception of myself as someone who doesn’t need these things. How can I kid myself that I am living a ‘normal’ life, albeit with cancer in it, when words like that are being used in conversation about my care.
I resisted being put on morphine for pain management for a long time. “Nah I don’t need it – I’m not in that much pain.” – Yeah right. The larger tumor in my liver is compressing nerves against my ribs and I have been in a lot of pain, and it is getting worse. My pain medication for the past month or so has consisted of low dose slow release morphine, panadol and 75mg diclofenac tablets with other faster acting low dose but faster acting morphine for any additional break through pain. I am still allowed to drive if I have not taken too many additional pills, but on days when I am in a lot of pain I tend to stay home.
Pain management is one of the areas hospice can offer better support in and is one of the reasons I agreed to be referred to them. When the subject of hospice was first brought up by RI my Cancer Society Liaison nurse a couple of months ago, I said that I didn’t need them and to a large extent I still don’t. But after talking it over with Dr H, my oncologist, who said getting into the hospice system before I really needed them was better and also that they could help me with pain management (being more expert in it) I agreed to be referred.
One of the other reasons is that the hospice offers Family Support services and counselling and has resources to help us with ‘what’ and ‘when’ and ‘how’ to tell YD what is going on with me. Because I have been in and out of treatment for the last 3 and a half years, to a certain extent this way of life has become normalised to her. “Mum’s just having more medicine”. She lives away from home and has been protected from the real toll dealing with ‘Gertrude’ has had on me. If we are going to have to tell her that the medicines aren’t working anymore, we have to do it in a way she understands and so that she doesn’t get fixated (with her autistic tendencies) on me dying and on when and how that is going to happen. For those of you who know YD, I’m sure you can imagine as we can all imagine her saying “when are you going to die, are you going to die before my birthday?” (or other such event) and asking the question and other similar questions over and over again every time she sees me or talks to me on the phone. I’m not sure it wouldn’t drive me a little bit crazy as well as not being very healthy for her. It is something we really need some good resources around, to help prepare her for that eventuality, without her becoming too fixated.
Why am I telling you about hospice today – because I had my initial assessment visit from the hospice this morning. They now know who I am and what I might need or want in the way of support in the future. For now they will just ring every couple of weeks to check how I am and whether I need anything from them and they will get their family support services to look at what resources they can help us put in place for YD
We find out on Wednesday at my oncologist assessment appointment what the next plan is. We think it will be moving onto the last chemo left to try. We know it will only work for a certain length of time and then ‘Gertrude’ and her spawn will start to take over. Only a spontaneous miraculous remission is going to stop that from happening. I may die of cancer sometime in the not too distant future but as of this moment I am not dying of cancer, I am just living it with it the best and only way I know how.