I am back in hospital again. I have been here since Thursday. I had a bit of an episode at home where I just felt off, breathless sitting on couch, heart racing, no energy and a weird solid feeling down the left side of my chest and back. My Dad called the ambulance and they brought me in. The weird solid feeling turned out to be shingles. This is not the first time I’ve had shingles in my life. I think it’s my fourth. It seems to be the way my body reacts to stress. My first case of shingles was a few weeks after my Mum passed away.
I was admitted to hospital via emergency and put on IV fluids as I was quite dehydrated. I was due to have my last radiotherapy session that afternoon but I wasn’t well enough to have it. I had it the following day instead.
That night I had an irritating cough all night and trouble breathing to the point I had a bit of a panic that I couldn’t breathe. It felt like that nasty lymph node decided to get all inflamed and was trying to stop me breathing so I was trying to cough it up. Eventually, the nurses woke the doctor in the early hours of the morning so he could authorise giving me some liquid morphine, which settled the cough and I got some sleep.
I was still very breathless and weak the next morning and needed help getting to and from the bathroom and with showering. I had a nap in the afternoon and when I woke up, I felt better, different. I was far less breathless, more alert, more myself. I was able to take my wheelie walker for a lap of the ward, which was something I could not even had thought possible just hours previously. All I could think was that the lymph node that had been trying to strangle me the night before must have shrunk. I wasn’t coughing all the time anymore. My airways felt much clearer.
It is pretty confronting when you receive a referral to a palliative care hospital that says you have ‘weeks to live’ and they keep calling you to the point that it feels like harassment. I’m sure they are just trying to do their job. I just haven’t wanted to talk to them because I want to concentrate on continuing to live, not discuss how I am going to die. I don’t feel like I am anywhere near death’s door yet. Yes, my health has been sub-optimal the past few weeks, but not dying. Not that I know what dying is meant to feel like, but surely worse than this. Of course, there are those unpredictable timebombs in my brain that could decide to do something stupid at any time.
Maybe I am being selfish and stubborn not talking to palliative care now before things get much worse so I can be involved in the decision-making now. Otherwise it will be left to my family to make those decisions and that’s not very fair on them.
I just think I have more time. I want more time. I feel like things are improving. People are saying they can notice a difference so it’s not just in my head. The treatment must be working for me to be starting to feel better. Hopefully this will continue.
I re-start chemo today so it can get cracking on those tumours in my lungs, nodes and liver. I got a couple of solid hours sleep until midnight and then woke up at midnight like a kid at Christmas wishing it was morning so they can open their presents. But instead of Christmas morning, I’m looking forward to Chemo morning. I tried going back to sleep for a couple of hours but I couldn’t so I picked up my iPad and with one hand and through my squinty eye wrote this blog post in the dark I thought if I could empty all the things I was thinking about,I might be able to get some sleep.
The hospital was just as keen as me to get started as they woke me at 5.30am so they could take my blood and weight in preparedness for chemo
I’m sorry I haven’t had a chance to answer any of your questions after asking you to pose some questions to me. I’ve been a bit pre-occupied with trying to keep breathing.