Ups and downs of being a 'carer'

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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. 

  • Hi  and welcome to the Macmillan Community but so sorry to hear about the journey you and your husband has been on.

    A cancer diagnosis like this in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help you a lot.

    This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our 

    Carers only 

    Supporting someone with incurable cancer

    ……. support groups where you will connect with a wide range of members navigating the exact same support challenges.

    To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    Please do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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