This post has taken me so long to pluck up the courage to write. I don’t actually know whether this post or my first post has taken the most courage. It took a lot of courage to start writing anything about our family cancer journey. But what happened next is not something that I am going to find easy to write about. So you could say that I’ve been putting off writing it. Plus December is not a good time – my birthday, Christmas, my husband’s birthday and then New Year. All difficult times to be writing about sensitive issues. Here I go making excuses again, and still putting off writing about what happened next….
Dad was getting more weak & breathless by the day really. He had home oxygen for a few weeks which seemed to help a bit. I remember that he got a phonecall from someone (I can’t remember who, or how it came about!) saying that they had arranged for further drainage of pleural fluid to help with his breathing. Great! At last he might feel a bit better when he was less breathless! So we took dad in on the planned day. They were going to do the drain the following day.
The following day came and I got a text from dad saying they couldn’t do the drain because there was no fluid in his abdomen to drain. I was confused. As far as we were concerned, he had gone for drainage of fluid in his lung, not his abdomen. His abdomen was a lot larger than normal so I had wondered whether he had ascitic fluid there and that they’d decided to drain that instead. The nurses didn’t know what was going on. They did mention about him coming home the following day since they were unable to do the drain. I raised great concerns about this as dad was now struggling to walk down the corridor to the bathroom & was almost falling. The consultant would see dad in the morning.
The next morning came, and seeing as it was a Saturday, it was the on-call consultant who saw dad. As soon as the consultant had seen him, dad text me. The consultant said that for some reason, the wrong type of drainage had been booked for dad. He should have been having drainage of the fluid in his lung like we originally thought, and not the abdomen like they attempted! They were going to try to do it over the weekend. We weren’t exactly happy about the cock-up but we were happy that they were now going to do the correct drainage to help dad’s breathing.
Nothing happened during the day on the Saturday. I hadn’t really expected anything to happen anyway. Dad had been fairly settled all day with his breathing. I always text dad before bed, but dad text me first saying that his breathing had got worse and that they were planning on doing the drain on the ward overnight. I knew this was not good. They would not attempt to do this unless dad was seriously unwell. He kept texting me updates. They attempted the drain but couldn’t manage to get it in the right place. They were now going to leave it until the morning.
That night, my 11 month old daughter had kept us up all night as she was finally teething (she was only just getting her first teeth at 11 months!) we finally got to sleep and managed to sleep until 9am. When I woke, I instantly checked my phone for updates from dad. I had several from him which sounded quite panicked. He was telling me he had had a new oxygen machine fitted overnight. Then another text told me that the nurses had told him he had nearly stopped breathing overnight. Now I was panicking! Then he told me the doctors thought it was mainly cancer in his chest, not fluid. We raced to the hospital to see him. The consultant had a chat to us about everything that was going on. His 2nd lot of immunotherapy was due on Wednesday and the on-call consultant said it was up to dad’s usual oncologist whether he could still have it or not. He told us that if it was up to him, then he would still give dad the immunotherapy, but it wasn’t his choice. At least we had some hope! Dad had a further CT scan on the Sunday afternoon.
Monday came. Dad’s oncologist came to see us with the results of the CT and the plan of action. Dad was getting more confused, but he was still getting out of bed and was still eating all his meals. The oncologist told us that the CT had confirmed the cancer had grown at a massive rate, and that his chest was now full of cancer. There was no further treatment they could offer him. He told us that dad may have 3 weeks left and that we should aim to get him to the local hospice. This was the news we were dreading. We were all just shattered with the news. Dad kept apologising to mum. He kept saying he was sorry.
We went home that evening. Dad had been fast asleep for a couple of hours and we’d left him asleep to go home. Mum came to stay at our house. I didn’t want her to be on her own. I remember texting dad that evening to tell dad that mum was staying at my house. I kept checking my phone and he never replied. He hadn’t even seen the message. This was not like dad. I had a gut feeling that something wasn’t right. I just knew something was wrong. Dad was always checking his phone. He always text me. I kept telling myself that he must have just been exhausted and wanted to sleep.
My phone rang at about 2am. I knew instantly it was about dad. We went in immediately. Dad was now not responding. They said he had woken up after we’d left the evening before. He’d been sat on the edge of his bed reading his paper. The next time the nurses walked past dad’s room, he was sat on the floor at the side of his bed and he was unsure what had happened. Then he’d become unresponsive after that.
Dad had just given up. He’d kept going and had remained strong for so long, hoping and praying that he would get better. The moment he was told that there was nothing else they could do for him, he had just given up. He had no fight left.
Dad was kept comfortable. He occasionally did wake up and would say the odd word to us, but he got agitated and was obviously in pain. So the nurses would give him medications to help settle him and his pain. I hated them giving him these medications because I wanted dad to be awake and to talk to us and I knew he wouldn’t do that after he’d had these medications. At the same time, I wanted dad to be peaceful and not in pain. I knew that having these medications was dad’s only option. One thing that sticks in my mind, is one time when he woke up. He barely had any energy to speak, but he looked at me and told me he loved me. I will always remember that.
My daughter’s christening had been planned for the following Sunday. I desperately wanted dad to be there but knew that wasn’t going to happen. The hospital Chaplain arranged a blessing in dad’s hospital bedroom so that we could have a service with dad present. I was so grateful for this. The a Chaplain then said a prayer for dad. To this day, I know that dad heard that prayer, and I know he would have been able to hear everything from my daughter’s blessing. Dad reacted when the Chaplain said the prayer to him. I was so grateful we had this service. We are not really a religious family, but this service just helped us in some way. We cannot thank anyone enough for arranging this.
We went home that evening. I knew when I left dad that it might be the last time we saw him. I was hoping that wouldn’t be the case but my gut said otherwise. Sure enough, I received a phonecall at 10pm.
We miss you dad. Love you lots xxx
Cancer journey - a relatives perspective 