Keeping faith?

On Thursday, I will finally see the oncologist to discuss what, if any, steps can be taken to address the rebellious cells currently busy trying to kill me. The appointment is, quite clearly, for me alone. Like so many others in this situation, since the advent of COVID, I am allowed no-one with me to listen, prompt, remember, or check what I am hearing. On Mary Smith’s advice, I will attempt to record the meeting if I can get permission to do so. Because my life, both in terms of quality and quantity, now literally depends upon what I hear, remember and understand. And there is every possibility that won’t be much.

Masks make hearing difficult for those of us who have to lip read part of the time. Learning how little time you may have, what procedures you may have to undergo (and because of fluid build-up around the heart, there is already a very unpleasant list before we even get to the chemotherapy bit)… it may be sufficiently upsetting to stop you taking things in and processing them. You cannot see the face of those who sit in judgement nor can they see yours.

How can either of you know the other at this stage, without the subtle visual clues and cues from which we as humans read so much? We are not designed to read too much from a flick of an eye… we need micro-expressions, warmth, twitches and connection before real understanding of each other can begin to happen.

About Sue Vincent

Sue Vincent is a Yorkshire-born writer and one of the Directors of The Silent Eye, a modern Mystery School. She writes alone and with Stuart France, exploring ancient myths, the mysterious landscape of Albion and the inner journey of the soul. Find out more at France and Vincent. She is owned by a small dog who also blogs. Follow her at scvincent.com and on Twitter @SCVincent. Find her books on Goodreads and follow her on Amazon worldwide to find out about new releases and offers. Email: findme@scvincent.com.
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123 Responses to Keeping faith?

  1. Ritu says:

    Oh, Sue. This is so hard, isn’t it?
    I’m sure they can’t say no to you recording the meeting.
    Good luck, my lovely 🥰

    Liked by 4 people

  2. CarolCooks2 says:

    I am sure there would be no objections to you recording such an important meeting as however much anyone is on the ball they wouldn’t remember everything and note taking impedes our hearing it does mine I get behind and start playing catch up…Good Luck, Sue …I will be thinking of you…Healing Buddha vibes coming your way with a virtual Hug as well xx

    Liked by 3 people

  3. Hi Sue, I went with my mother to see the oncologist [and all other specialists] and I took notes. The idea of recording the meeting is a good one and I hope the doctor will allow it. I thought of you when I read this post yesterday: https://nohalfmeasures.blog/2020/10/04/podcasting-webinars/. These sessions may offer you and your family some help and a community to discuss things with.

    Liked by 2 people

  4. jenanita01 says:

    If everyone present is wearing a mask, there is no earthly reason why you shouldn’t be allowed someone with you, but recording it is a brilliant idea, Sue…

    Liked by 2 people

  5. joylennick says:

    Hi Sue, Surely no-one can object to your recording what’s said? It’s an excellent idea .Thinking of you and rooting all the way. Go get ’em… x

    Liked by 2 people

  6. Adding my own wishes for a solution to this challenge to you.
    Hope there is a way through for you

    Liked by 3 people

  7. HappySoul says:

    Recording or may be a video call where a family member can be virtually present at least?
    This is too restrictive for the kinda situation you are in, Sue. You thinking over and asking questions is so very different from the kind of questions a near one can have. My mom is a cancer patient so her questions and mine were so very different!
    Prayers, positive energy coming your way from here, Sue ❤️

    Liked by 2 people

  8. Request your notes from Medical Records. You have to go through the proper channels, but it can be done.

    Liked by 2 people

  9. I’ll be thinking of you. I’m sure they won’t object to that. It’s so important that you’re able to go over the information in your own time and as often as you need to as they’ll be so much to take in. Sending love and hugs xx

    Liked by 2 people

  10. Sadje says:

    This is such a difficult time for you my friend. Can you request them to give you some material so that you have more knowledge of what is going to happen?

    Liked by 2 people

  11. beth says:

    recording will be so important, this is your life you are discussing. like you, it is very hard for me to hear/read what someone is saying with a mask on, and this conversation is so imperative to know exactly what is said. they must be so incredibly hard to face, along with everything else.

    Liked by 1 person

  12. Sue, I don’t even know what to say. There is no way to make sense of what is happening. To be expected to do this on your own is cruel. I understand the need for caution….but where is caution when it comes to making sure the patient is safe, understanding and processing what is happening at a time when it would be expected to be upset/nervous/worried about missing something or misunderstanding something.

    Liked by 2 people

  13. quiall says:

    We will be with you in spirit my friend.

    Liked by 2 people

  14. Hi Sue. Can’t the doctor give you a printed list of all instructions? My doctor does, without even having to ask him. But, just in case he can’t or won’t, Mary’s advice is good – record the consultation. Wishing you the best of luck and lots of healing vibes. xx

    Liked by 2 people

  15. Jules says:

    Perhaps as well as recording you can ask the professionals to say six feet away or at the other end of the room with their mask off? Or you or they can both wear a clear visors. Also make a list of questions before you go and make sure they are all answered. Another option too is after that first meeting to set up a zoom meeting with your family members present at your end so the professionals as well as yourselves don’t have to wear masks and an additional discussion can take place where you are comfortable and have your family support with you.

    We have a relative going through a similar process… for a second time for a different area…

    Know that good thoughts are being sent in your direction. Hugs ~Jules

    Liked by 2 people

  16. Paula Light says:

    ❤️❤️❤️ wishing you strength and healing, Sue

    Liked by 2 people

  17. Mary Smith says:

    I am sure there will be no objections to you recording the discussion, Sue. It is impossible to retain all you hear. I don’t see why you can’t have someone with you – masks and social distancing should ensure it is safe to do so. My partner was welcome to join me and even with two of us and my attempt at note-taking we forgot half of what the oncologist said. I also wrote a list of questions I wanted to ask – and my partner had his questions, too, which were different from mine. And, while I know time is of the essence and you want to get started on treatment, don’t be pressured into making a snap decision.

    Liked by 2 people

  18. indishe says:

    Hi Sue,
    These are difficult times and recording is a great idea for processing and understanding the scenario.
    Stay strong and positive!
    Sending you healing energies and prayers for good health!🙏🙏

    Liked by 2 people

  19. I’m sure your emotions are all over the place – mine would be, and I wouldn’t want to go through this by myself. Praying for wisdom, strength, peace, and an understanding medical team. We can’t all be there in person, but your found family is surrounding you with love and support.

    Liked by 1 person

  20. lizannelloyd says:

    Sue, could you ask him to follow up with a telephone consultation a few days later when you will have thought of new questions to ask? It is so unfair to expect you to cope with this without a loved one by your side.

    Liked by 2 people

  21. Sending healing thoughts, love and prayers, Sue…
    ❤ 🙏

    Liked by 2 people

  22. rivrvlogr says:

    I hope you are able to record. When I saw a specialist about my heart condition in July, I recorded. Even with masks, I was satisfied with the consult, but that recording helped me sort out specifics.

    You have much more riding on this, especially with immediate decisions. And while yours should be pretty direct and free of any nuances, listen to your recording as soon as you are home, so you can associate it with the experience of the conversation.

    I hope for the best.

    Liked by 1 person

  23. Mary’s advice is so thoughtful. I know from experience that a second set of ears is essential – even recorded ones. May everything go smoothly and better than your can possibly imagine. I’ll be thinking of you. ❤

    Liked by 2 people

  24. V.M.Sang says:

    It’s hard enough for you without not being allowed someone with you for moral support. But I suppose they have to obey the rules just as the rest of us do.
    I don’t see why they should have any objection for a recording. The oncologist must know how hard it is to take it all in at such a time.
    Hugs x

    Liked by 2 people

  25. I think it is cruel and unkind not to allow someone to go with you Sue. Could you not push the point? I’m all for arming yourself with a reamful of questions and recording the conversation.
    Will be thinking of you on Thursday and hoping the oncologist makes an exception. ❤

    Liked by 2 people

  26. memadtwo says:

    This is such a burden on top of the illness itself. I hope they will let you record it. I too do not understand why they do not allow a companion. But you must work with what you are given–best of luck. (K)

    Liked by 2 people

  27. Dear Sue, I feel for you at this difficult time. The frustration of coping with a terrible illness in the middle of Covid19 must be almost too much to bear. Wishing you the strength to cope with all you are going through. Take care my friend ❤️

    Liked by 2 people

  28. Jim Borden says:

    I hope you are able to record the meeting; is it an appointment you need to be physically present for? If not, as Jules notes, perhaps a Zoom call would be better for both parties.

    Liked by 2 people

  29. balroop2013 says:

    Dear Sue, you are in my thoughts and prayers. Hope all goes well.

    Liked by 2 people

  30. Widdershins says:

    Recording it or having someone, live, (Zoom, or even your phone on speaker phone) in your digital pocket, as it were, is a brilliant idea.
    Big hugs and a gazillion loves.

    Liked by 2 people

  31. Eliza Waters says:

    I’m continuing to send healing thoughts and light your way, Sue… all the more across the miles as our Wed. ends and your Thurs. begins. ❤

    Liked by 2 people

  32. Annette Kalandros says:

    Prayers that everything got well. I hope you were able to record the appointment. My late wife and I recorded everything at each appointment with her oncologist. I did not trust my note taking skills enough and it was helpful to review it the next day.

    Liked by 2 people

  33. dgkaye says:

    Prayers for it working out for you Sue. I always take an old fashioned pen and paper out when consulting with doctors. I know I won’t remember anything. 🙂 Hugs ❤ xx

    Liked by 2 people

  34. TamrahJo says:

    Oh…Sue…. how challenging a path you are walking right now on so many levels – the restrictions placed upon you when you are fighting for basic energy to heal, let alone taxing yourself to be at ‘your best’ to choose options, when you are at your energy lowest – I cannot and do not know what to say, except to rail against the fates that have transpired to find you in this position – to know what, on some level, you need, but to also know, most likely won’t get it, or even close to it, given conditions – I rail internally at reading yet another example of ‘things’ that so vastly restrict and hurt those I’ve grown to love – I wish to find someway and some battlefield I can take and put myself between them and that which threatens them, makes their path harder – and yet, the only thing I can, here, right now, try to have faith in, is, “i believe in Sue – her strength, her grace, her moxie, her surrender with grace to things outside her control – I am powerless to change a durn thing – I’m not able to take the field in her place and take ‘this cup’ from her lips – and so, I shall say me own prayer – that the gift of navigating, hearing, and clarity be given to you while you are told and then assess your options – That your history of strength and faith in the deepest core of you shines forth to avoid bullying, manipulation or calloused handling by your fellow mankind – that the gates of Heaven and the Universe, and the ancient gods of yore, hear my plea – “Gift her this moment – give her what is needed, right then, right there, for continuing to walk her path of destiny, creativity, on her own terms – no matter what the challenge of the field looks like – ” – – No matter how it plays out, no matter how easy or hard it is to play life by someone elses rules, no matter how hard it is for your friends and loved ones to feel muzzled and sidelined because of the rules of others – I, personally, deeply, believe, in my heart of hearts, cellular knowing level, without question, without doubt – you and yours, have, over and over and over, defied the odds, defied the stats, kept your chin up when the going got rough and everything around you said, “it will never…..” and yet you defied them over and over and over on many fronts and proved it could be done – or surrendered with grace to that which must be – that is the one thing I do not question – not ever meeting you, sitting for tea with you or working with you in backyard garden areas – or playing ball with Ani – or dancing in a field of bluebells – and it is only my deep ‘knowing of this’ so strong, so true, so cosmically unquestioned, that helps ease my worry, my love, my desire to charge forth with sword in hand to ‘do something’ when I know, there is nothing I can do – If the gates of mankind’s systems must be breached – – IF the Fates must be stood against or gracefully succumbed to for higher good for you and many – well – in the end – I’d place my bet on you and yours over and over again – because, in the end, you all are a better ‘bet to place’ than any of the other options, challenges, etc, going on – Sorry for long, rambling, ‘talking about myself to try to convey the depth of my frustration and all, for you” and my sorrow and pre-grief should you no longer be avaiable to me on this plane of existence in the future – but still, knowing all of that – my failings, my selfishness, my fears, my frustration, my wish to ‘charge’ and take no prisoners, just to ‘do something, anything, rather than sit idly by’ – yes, in spite of all this self knowledge, I still believe you and those who love you, surround you, will persevere – despite it all – ❤ – – ❤ – – a million times ❤ because, in the end, only so many emojis to demonstrate my heartfelt feelings on both sides of hope and fear, right now – I shall hold onto hope, tell you – I love you, your being, your spark, your creativity, your strength, your grace and no matter what happens – that will never change for me – even if let go of grace and curse various parts of the path, here and there – still the same, for me, your beauty –

    Liked by 2 people

  35. willowdot21 says:

    The Covid rules are so harsh, no back and support allowed when it’s needed most. Yes indeed harsh lines drawn …. does it really matter …you will not of been alone, I can promise that 💜

    Liked by 2 people

  36. My heart goes out to you. May the news be better than you expect!

    Liked by 2 people

  37. Hopefully they’ll let you record – that sounds like a great idea, and I’ve never heard of it before! I’ll have to remember that one.

    Liked by 1 person

  38. I’d be shocked if they don’t allow you to record what’s said in the appointment, Sue. My fingers are crossed that they allowed you to record the appointment.

    I have seen face coverings that have see-through perspex so you can see the mouth. However, I’ve not come across them on the internet, so don’t know if they’re available everywhere. Who knows, maybe they’ll already have some.

    I hope all went well.

    Thinking about you.
    xx

    Liked by 2 people

    • Sue Vincent says:

      Thanks, Hugh. I recorded the lot and they were brilliant. The transpaent face coverings are good…if everyone is wearing them 😉 And if they don’t steam up… though they are ot apparently as efective a barrier.
      All went… ‘well’ is a different kettle of kippers. I start chemo on Wednesday. xx

      Like

      • Good to hear that the medical staff were brilliant, Sue. It’s such a shame you were not allowed to take anybody with you. Under the circumstances, I can’t understand why they don’t allow it. However, I’m sure you know that we’ll all be thinking about you and will be with you on Wednesday.
        xx

        Liked by 1 person

        • Sue Vincent says:

          The saddest thing, Hugh, is that the staff themselves were up in arms over that too… an admin error that should never have happened is srtopping people having the support they need at that crucial moment. The doc and cancer nurse are on the warpath. x

          Liked by 1 person

          • After reading Mary’s posts, I did wonder why you were not allowed to take anybody with you. At first, I thought it may have something to do with all the different restrictions depending on where you live, but it’s good to hear that the medical staff are on the warpath. Hopefully, you’ll soon be allowed to take somebody with you, Sue.

            Like

  39. Jennie says:

    My hopes and prayers are with you, Sue. You are strong!

    Liked by 1 person

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