Breathe easy

So good news, my carbon dioxide levels have decreased, which means the ventilation is doing its job. What a relief. And the respiratory team are so pleased with how well I’m getting on with it (and how brilliantly Sue is doing putting my mask on with minimum leakage) that they’ve increased the pressure twice more as well. I sleep really well with it on, it’s quite soothing,

I must confess, I reached a point last weekend when I no longer cared. I’d had enough. I know I’ve taken a downturn and am resigned to it so my focus now is quality of life rather than quantity. I have a DNR in place and I’ve spoken to the palliative care consultant and my GP who fully support my wishes and will help me be as comfortable as possible.

So I’m now on lorazepam twice a day to keep me calm, which seems to be working. It makes me sleepy but I tire so easily now anyway.

We had a bit of a shock this week when the powers that be in the community care team decided they could no longer provide the care I now need and pulled their carers immediately after the first morning call, their intention being to move me over to specialist Marie Curie-trained end of life carers! Just like that, no warning, no consultation. Sue was having none of it and nor was one of the carers and between them they got it sorted. So instead I’ll be assessed each week and in time I’ll be slowly transitioned across but for now they’ve agreed that my current carers are still able to give me the help I need. In fact, the carers themselves had decided if they were pulled, they’ll sort out a rota between them, around their personal time, and keep coming. They continue to blow me away with their kindness.

It’s an odd thing, facing up to one’s death. To be honest, I’ve been doing it since diagnosis and am fairly at peace with it. I’ve been reassured that when the time comes I’ll be made comfortable and calm and that’s my main wish. That and to be at home. The GP has sorted out the necessary medication to have at home and district nurses will be on hand. More importantly, so will Sue and the dogs.

We talk so glibly about death but only from a safe distance. When it’s so close we become less brave. Having no faith, I have no concept of what happens but I hope that my spirit will live on, in peace, so I can always be at Sue’s side.

But none of that is immediately imminent. I tire far more easily and am weaker but I’m not ill as such – no chest infections which often trigger the very final stages.

Of course none of this has happened without Sue’s undying love and support. She astounds me every single day. She uncomplainingly and lovingly attends to my numerous needs (wipe my nose, scratch my head, roll my sleeves up, roll them down, shift my ankle, bend my leg, cover me with a throw, take it off etc etc), while dealing with everything else that needs to be done, all with patience and good humour. She never complains just cheerfully gets on with everything with unfailing kindness and humour. I am in total awe of her.

Thanks for all the messages I’m getting, it’s so lovely knowing people care. Please don’t be offended if I don’t always reply but I promise I’m very grateful.

I took further emergency measures this week too and ordered a case of Ned Cabernet Sauvignon blanc for Sue – can’t have her running out! 🍾😀

7 thoughts on “Breathe easy

  1. Sarah, you are truly a brave & courageous person. It takes alot to write the things you have been writing. You are a very special person. Jane xxx

    Liked by 1 person

  2. We are all in total awe of you sarah your really amazing and keep your sense of humour ,wierd as it is 🤣, however your feeling, watching you and sue together and how she cares for you and loves you is something some will never get to experience. You are truly loved ,truly amazing and unbelievably strong ,taking each day and what it brings in your stride xx love you loads xx

    Liked by 1 person

  3. Your bravery is inspirational Sarah and the love between you and Sue is beautiful. A huge well done for having impossible conversations and putting things in place. My husband and I try to talk about this but haven’t been brave enough to sort things out.. Good news about your carbon dioxide levels and again well done to the two of you for adapting to this. You’re a special team xx

    Liked by 1 person

  4. Hi Sar
    It’s brilliant to hear your stories of how you and Sue keep winning so many individual battles. Sue makes me laugh with the feisty way she is having none of the crap that u sometimes get presented with, she has become a real warrior.
    It’s always good to hear that you have had a comfortable night or felt like getting into the garden. You are also a warrior. What a formidable team you make xx

    Liked by 1 person

  5. It really doesn’t get easier does it and it seems hugely thoughtless to hear the system just swaps to strangers at a time you want those you have got to know and trust around you? Sue is an absolute star! I so want her in my corner if ever needed! You found a great love, match and protector there! So so pleased you are coping with the respirator and so so pleased to continue to hear your story! Huge love to you both! Tx

    Liked by 1 person

  6. I’m late to the party, sorry!! (I don’t get notifications even though I signed up, not in spam either. Anyhow, no worries, I know to check in regularly)
    Great writing Sar – sensitive, poignant & loving – you’ve a great writing style.
    Sue, thank you for being there for my friend ❤

    Liked by 1 person

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