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.
Continue reading at The Silent Eye
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 🥰
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I still don’t understand why such stringent measures are needed in this instance, when there are so many other opportunities for us to ‘cross contaminate’ 😉
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So many extra complications to deal with during these trying times. Hopefully they will let you record the meeting and give you written instructions as well. Best wishes!
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I hope so!
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Absolutely. I got told off for being too close to a child today, in Early Year’s, where the guidance has stated it would be too damaging for us to be 2 or even 1 metre away from the children…
By a childminder, who should actually know this!
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No-one seems to know what is supposed to be happening any more…
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They don’t!
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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
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Thanks, Carol… Well, any objections and it will be a very long meeting 😉
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That’s the spirit 🙏 xx
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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.
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Thank you for the link, Robbie. I know without asking how much your presence will have meant to your Mum.
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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…
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But we are not… and that is adding grossly and unecessarily to the suffering of so many thousands of people and their families in similar situations.
I’m thanking Mary for the idea of recording.
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Anita says that was the worst part for her, being alone…
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I can quite undeerstand that.
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Reblogged this on Anita Dawes & Jaye Marie ~ Authors.
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Thanks for sharing, ladies.
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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
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Mary’s idea… and a darned good one! xx
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Adding my own wishes for a solution to this challenge to you.
Hope there is a way through for you
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Thank you,
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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 ❤️
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Thank you… I agree, we all have different needs at these moments. But I doubt that the doctors have time to spend on making sure all needs are met.
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Request your notes from Medical Records. You have to go through the proper channels, but it can be done.
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Good idea, Stevie…but I doubt that would get done quickly enough to help make treatment decisions at this point.
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A voice recorder would do the trick. I’m sure your oncologist would be fine with that.
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They’ll have to be. I’m taking one. 😉
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😐😥
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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
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Thanks, Ess. You do need processing time… xxx
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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?
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Only generic stuff. I know all that…I need specifics now.
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I hope it goes well. Prayers and hugs.
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Thanks, Sadje.
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💖
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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.
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I could certainly use the simple things being made easier without masks…
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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.
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Exactly, Colleen.
Frankly, I’d rather take my chance with a hand to hold…
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I get it. Completely.
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We will be with you in spirit my friend.
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Thank you ❤
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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
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I don’t want instructions, Kim. I am hoping I will have some choices and decisions to make based on what they will tell me tomorrow… other than which coffin to go for 😉
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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
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You know, I doubt if the doctors have time for so many requests when they are already so overworked…
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Requests and questions can be answered with; “No” or “Not at this time”, but if you don’t even ask you won’t even get that opportunity for a “Yes” answer.
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Oh, I’ll be asking plenty!
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❤️❤️❤️ wishing you strength and healing, Sue
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Thanks, Paula ❤
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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.
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That’s the whole thing, Mary, as you know. Such an important meeting.. but it is a definite no-ne with you. Which I cannot in any way find a justification for.
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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!🙏🙏
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Thank you.
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Take care
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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.
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Thank you, Alexander, you have no idea how much that means to me 🙂
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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.
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Probably not. If the possibility and decision is for treatment, they may want to start immediately… these weeks we keep losing to waiting are pretty curcial.
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Of course you are right. I was lucky having my breast surgery and radiotherapy last year when there were was no Covid19 hampering quick treatment.
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Covid is causing so much grief in so many less than obvious ways… quite apart from the obvious ones.
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My grandson who is 2 and a half was taken into hospital with breathing problems yesterday but is asthma caused by his allergies not Covid & he is getting better.
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I am so glad to hear he is doing okay. It isn’t a good time for anyone to have to go into hospital…and particularly worrying with breathing problems.
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Sending healing thoughts, love and prayers, Sue…
❤ 🙏
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Thank you, Bette ❤
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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.
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Thanks, Ken… I hope things go fairly smoothly and clearly. And that I end up with choices 😉
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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. ❤
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Thank you, Diana ❤
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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
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I would hope so…x
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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. ❤
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As I understand it, I am lucky to get an ‘in person’ consultation at all…
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So much for our caring health service.
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They are working in difficult circumstances.. but I think a bit of warmth would not go amiss.
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I know, and we make allowances, but there should still be compassion and kindness here.
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I agree, Di.
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🙂
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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)
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Thanks, Kerfe..= It just seems both unneccessary and counter-productive at such a moment…
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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 ❤️
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Thank you, Chrisine.
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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.
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No…this is probably the only physical meeting I will get with my doctor. I need to be there.
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then I hope you can record it; good luck at that meeting. Can you also bring a piece of paper with a list of your questions on it, and room to write your responses?
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I’ll be taking pen, paper and questions …
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I thought you would be… good luck, Sue.
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Thanks, Jim.
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Dear Sue, you are in my thoughts and prayers. Hope all goes well.
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Thank you, Balroop.
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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.
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ell, otherwise, I could be in there a very long time writing every word down…especially as they may have to repeat everything for my ageing ears 😉
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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. ❤
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All appreciated too, Eliza. It really does make a huge differecne. ❤
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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.
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I hope it does too, Annette… we’ll see in the morning 🙂
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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
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That is already in the bag 😉 xx
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❤ ❤
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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 –
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Thank you, Tamah Jo. All we can do is walk the path before us… and that I will do as determinely as I can, while I can. But I do feel as if, with so many good wishes, prayers and so much healing being sent to me and to loved ones, that we are being held and carried though this. x
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In my world/experience? “The prayers and wishes of others is what provided the net to work above and carry me, when I was in danger of falling” -I hope it is the same for you!!!
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It always has been so far 🙂
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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 💜
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No… I was not alone x
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So glad 💜😉😉
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Thinking of you 💜💜💜
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My heart goes out to you. May the news be better than you expect!
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❤
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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.
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They did… and it helps.
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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
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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
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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
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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
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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.
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Sadly not for most things, but hopefully no-one else will be told to face that particularly harrowing appointment alone.
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My hopes and prayers are with you, Sue. You are strong!
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It could be a bumpy ride 😉
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Yes, it could. You have traveled on many bumpy rides, so you can do this. 🙂
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I can… and I will 🙂
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😍
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Oh Sue, I could feel your anxiety as I read your story. I had not thought about having to go through such an event all alone because of Covid. I can tell you are a strong woman and I will pray for you.
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Thank you, Dennis, I appreciate that. So many people are facing similar and worse situations because of covid. To be unable to be there for those you love, unable to hug them or hold their hands when they are facing terrible news, awful treatments or even when they are dying is appalling and I cannot begin to imagine the emotional and psychological damage that will be the legacy of such measures.
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