My Dad was diagnosed with MDS in October 2023 and started chemotherapy in November 2023. At the time he was advised that if the treatment was successful he would have another 10 years with us. The first round of chemotherapy went well but about two weeks later my Dad picked up an infection which lead him to spend about two weeks in hospital. He was out by Christmas and things seemed to be returning towards normal, although he was lacking energy, was more tired than usual and seemed to have developed drop foot. After the New Year he had his next round of chemotherapy and again he was within hospital with an infection but was out after a few weeks.
This cycle continued and my Dad was loosing weight and going through a a cycle of having chemo, being fine then ending up in hospital with an infection. He became transfusion dependent but he always seemed to come out and return to some sort of normality, albeit with a constant lack of energy and ability to concentrate.
He went into hospital again at the beginning of June. I was so used to him being in and out I just assumed once he got over the infection that he’d be out and carry on. I live about 2-3 hours away from the hospital that he was in so decided not to visit last weekend but would spend Father’s Day weekend with him, in the hope he may be out of hospital. Also my sister visited him so I thought it would be nice to have family visit each weekend. Unfortunately, last weekend we were told that the chemotherapy wasn’t working and that he would have months left to live. I was worried but thought I’d still have some time left with him, my sister left my Mum at the hospital and again we assumed there would be some limited time left but that it would be enough time for several visits.
Last Monday morning I spoke to my Mum and she was told we’d now be looking at weeks and that he may need to go to a hospice. By lunchtime I got ‘the call’ from my Mum to say we now had days left. I had to make childcare arrangements but left and arrived about 8pm at the hospital. My Dad was clearly not in a great way but was able to say a few words and answer questions, he was still ‘Dad’. We were all able to spend some time with him, talking with him when he could manage it. After midnight my sister, her partner, myself and my wife left my Mum at the hospital. The following morning we all came back and had a chat with the palliative care nurse who advised my Dad would not be well enough to move to a hospice and that we’d have a day or two left, by 1pm he had passed away. The palliative care nurse came back and even she was surprised at how quickly he went. I’m so glad we were all there with him at the end. In a way I’m glad he didn’t have a prolonged period of pain at the end even though it means our time with him was so short in this period.
This week has been so difficult, I know what has happened but it also feels untrue. I keep thinking my Dad hasn’t really gone and that he’s just in hospital and will be out soon. When I realise that he has left us I start to cry. I also can’t believe how quickly he changed - he was 71 but in September last year we were visiting theme parks and he managed to complete a Go Ape course (even I struggled with that one!) yet he looked like he aged about 10-15 years in a few months. I could see this yet I somehow still thought I’d have years with him. I also think he hid a lot from us, mainly to protect the family but I think that put me in a false sense of security. I wish the chemotherapy was more effective, I wish I knew how limited the time was with him, I wish he was still here.
I miss him so much. I hope that time will help me manage the pain of loss I’m feeling right now.
