Ups and downs of being a 'carer'

Hi, my husband has intra-hepatic cholangiocarcinoma, diagnosed in Nov-Dec 2023, so getting on for 9-10 months ago, now. There was no single day when the diagnosis was made, a series of events, crises and tests, one vague and unhelpful conversation, shocking discoveries online and in written clinical discharch notes to the GP all eventually made the foggy picture more and more focused and clear. T has now completed eight cycles of combined chemo-immunotherapy and his inoperable tumours (in his liver) have shrunk considerably. (We are in the lucky 25% in that regard, re this line-one treatment.) However, it is all very tiring for both of us. As we are old enough, and in flexible jobs that can be scaled down (I'm freelance, he's an academic), we're very fortunate compared with many. But it's still exhausting. We manage pretty well. T uses what he calls 'positive denial' to get on with ordinary life as much as possible, focusing on small things that give him /us pleasure. Good quality coffee, doing the crossword together daily, listening to music and - for him - buying vinyl as he fancies. We've kept up going to the theatre and to films, as they're low energy, and walk when we can along by local allotments and watch them grow. I think keeping going is much more where we're at than any kind of bucket list. Small pleasures: chocolate, ice cream, tea and cakes out whenever we fancy it. We've both had reflexology at our local hospice and each found it fantastic. T was very sceptical about it beforehand. He said it wasn't best use of his time, but I was keen for him to come to something at the hospice so it became familiar to both of us. They put on a good lunch and have an amazing garden. It's always pleasant to go there. T says he feels very positive there, without any prompting from me. We've done a watercolouring class together at another cancer support service. That was a great success. I've had a course of counselling which was very helpful for me. T gets very tired and has low days, or parts of the day, especially when he's in pain or gets really used up. Then he feels vulnerable or pissed off, or withdraws. He can feel absolutely overwhelmed, or be a bit grumpy. I've taken on much more of the household management. My own health needs need to take second place, as T was very supportive in the past, the loss of that active support can be difficult sometimes. I had a health scare recently and am not currently allowed to drive. How much T should drive has been a cause of tension and friction, as we have held different perspectives. Talking with trusting, caring friends is helpful to get any fears and frustrations off my chest in a safe space. We've both discovered we can manage public transport for long journeys, and it's less tiring than long motorway drives. We're considering renting cars in local areas, for flexibility, after doing the bulk of the miles by rail. (T's mum is still alive, so visiting her is important). It's good to hear other people's stories. The loyalty/personal feelings tension is a difficult one to live and to navigate. I've got better at not overwhelming T. Giving him support, space and quiet times when he needs them, allowing him to prioritise friends, colleagues, interests, but it's not always easy. Most days I think 'Well, we didn't get that quite right'. And it can be lonely. But, it must be so much worse for him. So, we keep going, focusing on small steps, comforts and pleasures, and mimimising too many demands and commitments.