MarySmith’sPlace ~ Cancer Diary 11 – Uncertainties

Monday, November 16: I had a wonderful week in the hut although on the Tuesday I was more tired than I’ve been for a while. I suppose the rushing around on Monday, packing and sorting out food supplies, writing the blog – and the sudden exposure to sea air – did for me. And, maybe I was tired because of cancer and having chemo, though I tend to look for other causes first for some reason.

Tuesday, then was a day of doing not very much – that is what holidays are about, isn’t it? I rallied when the weather brightened in the afternoon and went out for a walk. In fact, there was only one day I didn’t get out. I also spent vast amounts of time sitting in the veranda, supposedly reading, but simply gazing out and the endlessly changing vista, watching the waves.

I’m back at home – no more sounds of the sea to send me to sleep. And it’s chemo week. Well, I hope it is chemo week – there’s always the uncertainty something might be wrong with the bloods and the treatment be postponed.

The uncertainty of it all is starting to get to me. If the bloods are all right, then I’ll have my fourth chemo cycle on Friday. After that I have no idea what’s happening. I should have a CT scan to see what effect the chemo has had on the tumour and lymph nodes and to check it hasn’t spread to other organs. I haven’t yet received an appointment for the scan, nor for a consultation with the oncologist.

Before radiotherapy – five days a week for four weeks – can be started – if it’s going ahead, another uncertainty – I have to have a 4d scan to have the places marked where the radiotherapy will be focussed. I have no idea when this will happen, nor how long after it the process can start.

I’m feeling totally in limbo right now. I have no idea what is going on with the tumour – is it shrinking, staying the same or growing? Spreading? Is my case being discussed at the weekly meeting? I won’t say am I being discussed because I realised to the oncology medics we are not really people, we are cases. Why does no one feel any need to let me know what they are planning next and when?

I am so very glad I had such a good break at the hut last week because if I’d been here – checking the post for appointment letters which don’t arrive – I’d have been in a far more worried state than I am now.

The last scan showed the tumour was stable – hadn’t grown and hadn’t spread. The prospect of the possibility of extra time was still being talked about. But, I don’t know of there will be extra time, nor how long it will be – neither, it seems does the oncologist so the uncertainty is all encompassing.

I have things to do, places to go and people to see. If my time is going to be very limited I’ll break all the Covid rules to which I’ve so steadfastly adhered and go ahead and get on with things I want to do while I’m still able.

I hope I will have had the toxic drugs and know a bit more about that’s next when I next write.

99 thoughts on “MarySmith’sPlace ~ Cancer Diary 11 – Uncertainties

  1. Your blog has answered my question and it’s understandable that you’re feeling anxious. I just wish the cancer nurses could only give you a quick call to update with you what’s going on ‘in your case’. Feeling human is important. Thoughts and prayers going your way.

    Liked by 5 people

  2. If there is one thing that really helps it is knowing exactly what is going on… at least as far as anyone does. Being kept in the dark, given conflicting or piecemeal answers… having ‘them’ assume someone else has told us. .. none of that helps a bit.

    Liked by 7 people

    • You’re so right, Sue. Being so much in the dark is getting to me now. I had the appointment for the last scan long before I had my second chemo session. The next one is only four days away. And I get ticked off at the assumption I’ll be free to attend because I won’t be doing anything else, will I?

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      • I know… I got a blood test order in thenpost today… no instructions or explanations, no covering letter, just the assumption I’d get it done (one assumes) with the pre-chemo ones…
        It does make you feel like a ‘case’ rather than a person…

        Liked by 2 people

            • This breaks my heart, compassion and empathy were a part of nurse training back in the late 60’s early seventies – along with the message that it can be done without soppyness that helps no one.

              Liked by 1 person

              • As Sue, says, above, some nurses are excellent but don’t have enough time to talk – they have mountains of paperwork to do for one thing. Having said that, there are some who don’t have empathy and I don’t believe you put that into someone. You are right that soppyness doesn’t help anyone. Sympathy without empathy is not helpful. I suspect the training in the 60s and 70s produced a different breed of nurse than we have today – and that comes from the experiences I had with my dad in hospital, not so much me.

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                • I am so sorry, Mary and Sue, to read this. I had the most horrible experiences with nurses when my boys had their many times in hospital. This is why I always stayed at the hospital overnight, sleeping in a chair, when they were admitted. It’s such a pity.

                  Liked by 1 person

  3. I found out that they only tell you the bare minimum. I remember being told back in 2007 that 2 nodules had enlarged from the previous scan that they had been keeping an eye on. That was news to me that I’d had 2 suspicious nodules. I ended up having more surgery to get rid of them.

    Liked by 4 people

  4. Mary, I am holding good thoughts for you. Waiting is hard especially waiting on answers. Your tiredness could be attributed to just finally letting go of some tension you have been holding. I am so glad you had some time away.

    Liked by 2 people

  5. What a lovely place to chill out, I love the photos. On the other hand the uncertainties are a right PIA. Patience is not a viable thing when your life is on the line. Fingers crossed everything goes ahead with the bloods and the chemo. Thinking of you and sending best wishes.

    Liked by 2 people

    • It really is a great place. Apart from the sea practically at the doorstep there are fields and hills all around. The uncertainties and the endless waiting are getting to me now. Thanks so much for thinking of me and sending best wishes – really appreciated.

      Liked by 1 person

  6. Thank you for those lovely photographs, Mary. So pleased you had a relaxing time at the hut. I hope all goes well on Friday. Sending my love and positive thoughts your way.

    Liked by 1 person

  7. I have to wonder why it is so hard for the medical people to update patients about what is going on. Even if they don’t know something it would be better to tell you, “I don’t know,” rather than a black hole of no information. I hope you do have your treatment and maybe some more information.

    Liked by 1 person

    • A great place and a healing place. If the cat wasn’t so skittish I’d have taken her along but she’d quite likely have raced off onto the beach and been lost. My last cat loved the place – sat for hours staring at the wall because it was occupied by field mice. Uncertainty really does suck!

      Liked by 1 person

  8. Surely it can’t be that hard to give people a rough even, idea, of what will happen when. But communication isn’t great I always found, in the NHS, and often there was no one person ‘seeing to everything’ about one person’s journey. If they could get that together, stress and tension would be much less in the ‘patients’ and that would surely help any healing possible. And it would help the ‘patient’ to feel they were a ‘person’ and not a case. And at times like this, feeling like a person seems especially important. Fingers crossed for next dose, and for good or at least stable news in the days to come. x

    Liked by 1 person

    • Communication isn’t great and I can’t see it improving any time soon, Janette. I’m not sure ‘they’ consider how stressful it is for patients to be always waiting and wondering and not knowing what’s happening when. Yes, I should focus on getting the next chemo dripped into me – hopefully on Friday – then we’ll see what’s next.

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  9. Thanks for the oystercatchers ❤

    Have you got someone who's been through it to talk to? I think my friend Mo had the same trouble at this stage. I got the impression that they limited the amount of information they gave him partly because things can change so much; they wanted to give neither unwarranted worry, nor some hopes which might end up being dashed. Time for some Zen, perhaps?

    I think MacMillan runs a free chatline. You probably know all about this kind of support though.

    We're still here, thinking of you. Keep up the good work so far. Think of the waves and the tides doing their thing while the world goes around.

    love
    Jemima and the boys

    Liked by 1 person

    • Yes, the oystercatchers are for you, Jemima.

      I know there are helplines – there’s even a dedicated cancer specialist nurse – but the problem is they don’t know the answers to my questions. Perhaps you are right and it’s time for some Zen – or sorting the kitchen cupboards. At least I had a week of restorative tides. My best to you and the boys.

      Liked by 1 person

  10. Nothing is harder on me than not knowing what is happening, so I can absolutely understand why you are in a quandary about what lies ahead. I always feel stronger when I’m armed with information, and I am praying someone updates you soon. Hanging about in limbo is wretched. If that’s what you’ve got to deal with, I say go back to your vacation “hut.” It’s a stunningly beautiful place to vegetate and free your mind from worries. Be strong, my friend. Still sending prayers and love and loads of healing energy your way! 🤗💌

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  11. The hut is perfect, and in a wonderful location. You are lucky to have that place to relax in, and to overwhelm your senses. Imagine living in a one-bed high rise in a big city, and going through the same fears?
    I have no easy answers, and no pat comments. You know what you are facing, and I know it vicariously, through my former career. But you are stronger than most, have more support than many others do, and your character is strong.
    Do your best, my friend. It’s all you can do.
    Best wishes, Pete. x

    Liked by 2 people

    • It’s a great place. Unfortunately, as I said to Marcia, the owner shuts it up for winter. I could have stayed on for a bit longer but this week is bloods and chemo so I had to come back. Believe me, I know how very lucky I am to have had such a wonderful week. I’d have been a lot more agitated now if I hadn’t. Fingers crossed I hear when my scan will be – then, I’ll just have to be anxious about the result…

      Liked by 1 person

  12. Oh Mary, not having information about the illness, or about time, and feeling in such limbo is a real bummer. I think, too, that another holiday in the cabin by the sea again soon would be a good idea if possible – the busy little oystercatchers are lovely and in a much more picturesque setting than the CD roundabout! I’m not surprised you were shattered on the Tuesday. Good luck with the next battlefield of chemo if it does go ahead soon. Juliet xx

    Liked by 1 person

    • It is indeed a real bummer, Juliet. The owner shuts the hut up for the winter now – and to be honest, I have no idea when I’ll have another free week feeling healthy after chemo effects wear off and before anything else is scheduled. It was great watching the oyster catchers – can’t think why they’d choose a roundabout rather than Carrick shore.

      Liked by 1 person

  13. In the absence of communication, we fill the void with our biggest fears.
    It’s criminal they are not keeping you totally up to date, or even letting you know when they will have something to say, Because during that silence our imaginations can be far crueller than reality.
    So glad you managed to spend so much time staring at the sea.
    ((hugs))

    Liked by 1 person

    • I know they can’t tell me anything about the tumour until I have the scan, Kim, but not knowing when that will be is depressing. And, yes, when we don’t know, we imagine the worst. Carrick worked its usual magic, I’m glad to say.

      Liked by 2 people

  14. Mary, can you not call the oncologist for information? Do a virtual visit, if necessary? Someone should be keeping you informed. In America, we are assigned a patient advocate—a person to act on our behalf. I can’t imagine how helpless and frustrated you must feel, not to mention frightened. I hope you can get some answers soon. In the meantime, I’m praying for a positive prognosis! Also, glad you enjoyed your break in such a lovely area. Very pretty pics.

    Liked by 1 person

    • No, Linda, the oncologist is not someone I can call. They protect themselves by putting several layers of people between them and the patient. There’s the nurse who doesn’t know anything and there are secretaries who can’t give information even if they knew it and can only pass on a message to the oncologist – who might call me if she’s not too busy. At the moment she doesn’t know any more than I do about the state of the tumour. After two chemo rounds I had a scan ten days later so that should happen again after the next chemo but so far no appointment.
      I am so pleased I went for a break last week before the anxiety kicked in. The chemo being given depends on the bloods being OK so there’s another anxious wait to find out. It seems to be an endless round of waiting and wondering. Glad you liked the photos – and thanks for your support.

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    • No worries about your language – I’m using a lot worse at the moment 🙂 The seaside was wonderful, definitely restorative. I’d have stayed a bit longer if I didn’t have medical appointments this week. Onwards and upwards.

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  15. Time by the sea must have been a welcome retreat, Mary. I’d have been staring out to sea all the time, too. 🙂 I find the repetitive rise and fall of waves the best balm.
    Hope it all works out for you this week and the news is good with the scans. Sending you love and light. ❤

    Liked by 1 person

  16. Hello Mary, Thinking of you. It must have been so good to get awway toi the hut and the healing effect of the sea and the countryside. I prescribe more of the same! So sorry you are not gettihg the guidance and answers you deserve. I think you need to do a bit of shouting. It is not good enough. There should be a clearly laid out plan with plenty of communication.
    With love, Ann

    Liked by 1 person

    • Hello Ann, I had a wonderful week at the hut. The healing effect of sea and countryside should be prescribed by the NHS 🙂 I’m going to do a bit of chasing through the oncologist’s secretary to find out if anyone has booked a scan for me. Last time, the appointment came quite a long time before my last, pre-scan chemo and I rather assumed it would be the same this time. Thanks for your concern

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  17. Such a lovely place, Mary. I am not good at dealing with uncertainty even about minor things, so I’m sure I’d be beyond anxious in your place. I think the comment about not wanting to give conflicting information and not having enough information to tell might be the case. I wonder also if in the current circumstances (with COVID-19 and all that) procedures keep changing, and it’s difficult to keep everything under control. It might be an idea to talk to support groups, even if they don’t have the answers, but they might be able to advise on what worked for them, and sometimes comparing notes can be useful. Anything is worth trying, at least once, but you know better than anybody how you feel and what suits you best.
    I’m keeping my fingers crossed and thinking about you. Take care.

    Liked by 1 person

    • It is a lovely place, Olga and it was a very relaxing week. If I’d come home to find the appointment letter for my next scan I would still be relaxed – well, apart from worrying about tomorrow’s bloods being OK. At this stage, of course, no one actually knows what’s happening inside me and what the chemo is doing and I do understand that – it doesn’t stop me worrying, though. Thanks for keeping your fingers crossed 🙂

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  18. Two of the things I’ve learned along the way through this life are 1. Worry solves nothing but can contribute to the problem, and, 2. It is easier to tell someone else not to worry than convince ourselves.

    The week in the hut was a gift to yourself and a wise one at that. The sea always helps me. Did you know that salt air has a higher natural concentration of Lithium which makes it a natural choice for so many reasons.
    You are such an excellent writer and communicator, perhaps a letter to your doctor, the program director, and other such personnel about the negative aspects of treatment such as being left out of your own health care when you should be captain of the team. It could help you and countless others. It may also be cathartic and perhaps empowering? I know you will make the right choice.

    Love Lea xxx

    Liked by 1 person

    • Yes, I know it is pointless to worry and, actually, until quite recently I was able to remain fairly stoic about it all.
      The week by the sea was wonderful. I didn’t know salt air had a higher concentration of Lithium – no wonder I slept better. I am going to go try going through the oncologist’s secretary to find out of the scan appointment has been made. Thanks for being in my corner 🙂

      Liked by 1 person

      • Pointless, indeed. Stoic, yes, I thought you were but even the most stoic among us, has a soft underbelly of vulnerability and that keeps us human. It was essential in the work you did and continue to do by sharing it and educating those of us who will never have that experience.
        The sea is one of the reasons I love my village as it is only minutes away by car. If it were any closer, I would spend all my time there and get nothing else done. Nature has many healing properties and I am continuing to discover some of them. It doesn’t mean I shun western medicine, but nature has been around a long time and her gifts have few if any side effects. I choose to incorporate her gifts as much as I can. I shall remain in your corner. 🙂

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  19. What an amazing place Mary and to be there watching the sea with all its changing mood must have been very calming. It is the uncertainty that takes its toll on top of the chemo side effects. Hopefully you have had some new now on this week’s treatment and an appointment for the scan. Unfortunately the medical profession give nothing away, they don’t want to promise you anything or say everything is going to be alright as they have no idea. They do know that the treatment protocols have a statistical chance of shrinking or halting the progress of the tumours.. I love reading everyone’s comments and you have us all pulling for you…we will kick ass….along with those boots of yours..♥♥

    Liked by 1 person

    • I hope so, too, Robbie. You are right, until the scan is done the doctor doesn’t know what’s happening. At least now I have the scan appointment, although not the follow up appointment with the oncologist. And I had the pre-chemo assessment today and am good to go for the treatment tomorrow.

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  22. That looks such a lovely place to have had time at, Mary. I hope the sea air helped you relax and get some sleep. The sound of the sea can be very calming.
    I hope you have a better upcoming week and that you’ll get some clarity soon.
    Take care, and know that you’re in my thoughts.
    Hugs to you.
    xx

    Liked by 1 person

    • I had a lovely week at the hut and I miss the sound of the sea now I’m home – rain battering on the windows isn’t quite the same. I now have the date – 2nd December – for my next scan so not too long to wait. xx

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