MarySmith’sPlace ~ Life dribbling out – Cancer dairy #21

Wednesday 27, January: Last week’s update was very late, appearing on Wednesday instead of Monday so when Monday came round it felt a bit soon to do another cancer post. And here we are at Wednesday again – perhaps this is going to be the update day for now.

There’s not much to update really. The pain on swallowing is still there – no worse than a week ago but no better. This morning when I woke I lay for a few moments before trying a tentative swallow, promptly curling into a ball at the pain. It’s so depressing. All pleasure in eating and drinking has disappeared. It hurts, whether I’m swallowing a mouthful of mashed potato or a mouthful of milkshake. Sipping or gulping – it hurts.

The ‘sunburn’ is still burning and is puffy with fluid. A friend kindly sent me gel-filled cooling pads which have been bliss to use. My skin is so hot it soon heats up the gel pad until it’s like a hot water bottle – then I swap it for the pad cooling in the fridge.

Worst of all, though, is the loss of energy. The oncologist warned me about fatigue, as did the specialist nurse in Edinburgh and the radiographers but although I expected to be tired – after all I was tired when having chemo – this is a whole different level of tiredness. This is dress, come downstairs for breakfast – need to go back to bed. This is sleep for a couple of hours, reply to two or three emails – need to go back to bed. Sleep again. I think I’m possibly awake for about six to eight hours a day.

I know – it’s one of the first things I learned since having cancer – every single person with cancer is different (even if they have the same kind of cancer) and their reaction and response to treatment is different. My friend Sue, while continuing her cancer treatment, posts on her blog several times a day – I think I’ve done really well if I manage two posts in a week – and she’s working on a mammoth editing task at the same time.

I’ve more or less abandoned attempts to finish my annual accounts, had to give up this week on Pilates and a Burns evening. I’d been so looking forward to seeing and listening to other people (on Zoom) as now my treatment is finished I see no one apart from the DH and much as I love him…

When I was first diagnosed with lung cancer I had so much energy and drive. There was much to do, to sort out and to organise before my demise and I had the energy with which to do it. Right up until I started treatment. By the second round of chemotherapy I was already jaded and faded and letting things slip. Now, after all the chemo and the radiotherapy sessions there’s a deep exhaustion. I know my throat and my burnt skin will heal – probably – but I don’t know if the tiredness will ever go away.

If not – if this is as good as it’s going to get. If the ‘extra time’ the treatment has bought me comes along with this level of no energy and tiredness – then it was dearly bought. Although, I rather enjoy the seductiveness of my bed, of slipping under the duvet – morning, afternoon or evening – and leaning back against the pillows, book in hand for a page and a half before sleep takes me.

Is it a healing sleep or is it a sign on life dribbling out?

And on a day when it would have been quite good to speak to someone involved in my care, the new specialist nurse failed to call.

122 thoughts on “MarySmith’sPlace ~ Life dribbling out – Cancer dairy #21

  1. It is a hellish thing you have just been through. I’m still in treatment, yes, but they haven’t just hit me with an intensive course of radiotherapy! Or left me dangling for weeks waiting to find out if it helped or made things worse… Give yourself time to sleep and recover.

    Liked by 6 people

    • It’s a good question, Joelle. Are you any closer to knowing the answer? I know the treatment isn’t going to give me another 20 years, which is fine but if there’s going to be a year or two I don’t want them to be like this. I’m guessing it’s almost an unanswerable question.

      Liked by 1 person

  2. Mary , as ever your being a trooper! Sue’s treatment is different to yours …you’ve had Chemo and Radiotherapy… And both very intensively I am not surprised byou are knackered!!! Sue is having chemo and immuno therapy…. And let’s face it she is super human, so are you but differently! Everyone is different, everyone reacts differently …Vive la difference. Rest as often as you need to. Sending you lots of support and love.

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  3. I hope that things will get better for you. That’s a lot of treatment to be working through so no surprise about how tired you feel – I still get tiredness but it is more manageable – the soreness of your throat sounds awful so I really hope that starts to heal and get better soon. The specialist nurses! I never seemed to have the same one for more than a couple of weeks. If I ever rang them (in response to a query from them more often than not) they were ‘not available’ or it was their day off, or ‘not here’! I didn’t ring often but soon gave up bothering. Just left messages if it was in response to something they asked/needed. I hope that improves for you because sometimes you really need advice or help and it can be such an effort to reach out.

    Do keep well, take care and look after yourself.

    Liked by 2 people

    • Thank you. I don’t think I expected to feel quite so tired, despite being warned about the fatigue. I think the throat pain will get better before the tiredness wears off – I worry about becoming dehydrated because I’m not drinking enough. Everything you say about specialist nurses rings true about the one I had before I went to Edinburgh for the radiotherapy. At least there it was fixed I’d see the nurse every Tuesday after my treatment session. I’m hoping the new one here won’t be as disappointing as the previous one. Fingers crossed. Thanks for your good wishes.

      Liked by 1 person

      • Hope the new is better. Luke warm / cool liquids may help but it sounds awful and you are rightly concerned about hydration. Hopefully, as you say, the throat pain won’t last too much longer.
        I was told to make the most of times when I felt good (not so tired) and rest as needed when fatigue set in. It can go on though!
        My very best wishes, Mary. Janet

        Liked by 1 person

  4. Reading what you say about the swallowing made me so upset for you. At least you can sleep as much as you need, (or want) with no feelings of guilt about anything else you should be doing instead. Sleep is good medicine, so the old saying goes. It that’s true, have as much sleep as you desire, dear Mary.
    Best wishes as always, Pete. x

    Liked by 1 person

  5. Really sorry that you’re in so much pain and discomfort, Mary. I reckon that doing things like blogging and getting out of bed are achievements in themselves. I hope the sleep helps in the healing process. I’m a firm believer in the power of sleep to heal. Take care of yourself. Sending love.

    Liked by 1 person

    • My body certainly seems to be telling me it needs sleep, Wendy, so I’m listening to it. It just seems weird I’m having to recover from the treatment without even knowing what’s happened to the cancer tumour.

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  6. I, of course, am very opinionated and answer your question with a resounding HEALING. You need to rest and recover. If you were a bear you’d be in a cave somewhere doing a full-out hibernation. You will notice the turn when it comes. It will come. Hugs.

    Liked by 1 person

  7. Welcome the sleep – it will be healing, and it’s less time awake with pain. You wrote about the fact the side effects could continue for quite some time – there is still plenty of time for recovery, and the sleep will be helping that.
    And once you are past this, Spring will be much closer
    ((hugs))

    Liked by 1 person

    • Yes, Kim, the doctor and radiologists said the radiation continues to work for a couple of weeks after the treatment ends so while it’s still working on the cancer cells, the side effects will also continue. It’s now ten days since my last treatment so I’m hoping I’ll turn a corner in a few days.

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  8. Mary…so many good things happen to our body while we knock out the Zzzzz’s …it is natures way of redressing the balance you and your body had a tough ride and it needs to rest and recuperate so rest lovely lady and heal…xx

    Liked by 1 person

  9. Yes I guess the sleep is what your body needs Mary. Strange isn’t it how very small things become mountains – things we all take for granted, but then become momentous mountain climbs. I wonder of you’re having dreams in all the sleeping? Or ones you remember I mean. Thinking of you……..Janette xxxxx

    Liked by 1 person

    • I’m just going to sleep as much as my body wants, Janette. I have been having odd dreams – sometimes only remembering snatches of them. In one the Hazara man who used to look after David when he was a baby was in a bed which was being lowered from a height and I was worried about him getting sunburn. Someone fired a gun. And last week I woke very disappointed to find no box of Krispy Kreme donuts beside me on the bed 🙂

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  10. So sorry to hear you are suffering but the sleep is needed for healing as everyone else has said. Your body is fighting for you and needs all the rest it can get. Rest, knowing we all have your back and you have out love and prayers. Sending massive hugs. xo

    Liked by 1 person

  11. I guess the equation is time v hope. You take the treatment pill to expand hope. And the difficult component is the knowledge that every crappy minute of this phase is as much for your loved ones as you – you suffer for them too. I wish you a lot of time eating for fun with your family!!

    Liked by 2 people

    • I think I could feel a bit less ticked off about it all, Geoff, if I knew I was fighting off the cancer but I’m only fighting off the side effects of the treatment. The cancer cells may not even have noticed the radiation coming at them. It’s all a bit surreal – but I’ll cling on to the hope there will be some eating for fun in the not too distant future 🙂

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    • It is quite difficult to stay positive, Fraggle. Usually, I’m a fairly cheerful person and even when moaning I can hang on to my sense of humour so this week has been tough. I will embrace sleep as much as my body wants it. xx

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  12. Regardless of the words, I might attempt to put down, they would be insufficient. The love is real and you are in my thoughts despite my rare appearances.

    I came across a piece of music that says so much that I want to share it. When a German man and a Russian man can stand side by side and make such beautiful music, it reminds us of the power in creativity and how those who endeavor to give us such treasure teach us another way than the destruction that seeks to delusion us. You have given so much in your writing. You have slain some of the dragons of ignorance. I do hope you close your eyes and listen. https://youtu.be/p2MwnHpLV48
    Love Lea xx

    Liked by 1 person

  13. Oh Mary I’m so very sorry. This sounds awful. As you say, everyone’s experience is different so it probably doesn’t help to make comparisons. It sounds like you’re doing exactly the right thing by taking the opportunity to sleep when you can. I hope you start to feel the healing benefits very soon xx

    Liked by 1 person

    • Thank you, Katy. It does feel pretty awful but as long as I know the side effects are temporary then I can cope. In the meantime, I’ll continue to sleep whenever and wherever – possibly until spring!

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  14. I have been reading your posts from afar and keeping tabs on you, Mary. So much hope that you will regain some of your old energy as you rest as much as you need to now, and your poor throat and chest heals up as the treatment does its job. I so loved your photos in your post of your walk with your friend, the cute squirrel and your lovely face, masked or otherwise! Big hugs ❤

    Liked by 1 person

    • I know, Olga. I’ve been saying in some of the comments that all the side effects are my body’s reaction to the treatment, never mind the cancer. I’ll try to be patient and enjoy guilt-free sleeping. xx

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  15. Mary – this is the right place, the perfect place, to vent and shout and let us – your loving blogging community – know exactly how you feel, inside and out. GOOD FOR YOU. I hope we all help by listening, feeling, sending you loving vibes of understanding, hope, healing hugs, and love. You are a miracle. Every minute you are here, you are a miracle. Never forget that. Each of us, in our state now, in our stage of being now, is a miracle. I honor you and what you’re going through. You are so strong that I imagine we’ll hear from you soon, revived a bit, slowly less fatigued. Never compare yourself to another in this mighty struggle. We each are on our own path. ❤

    Liked by 1 person

  16. It saddens me to see how difficult this fight is for you. The radiation therapy continues to work even after treatments are complete, so the effects linger. That does not make them easier to deal with. I pray for you every day and hope that as time progresses, you will regain energy and strength. For now, rest is the best medicine. I can sense a frustration in not speaking with your caregivers. I hope that is rectified soon. You are always in my thoughts, Mary.

    Liked by 1 person

    • They say the radiation goes on working for a couple of weeks and it’s now ten days since my last treatment – so hopefully, over the next few days I’ll see a lessening of the side effects. I think the biggest frustration is that no one – not even the oncologist – knows what’s happening to the cancer and I have to wait for several more weeks before finding out. Thanks for your support, Maggie.

      Liked by 1 person

  17. Oh Mary it sounds so grim for you. I’m sure you need to sleep just now to get away from the pain of swallowing until it improves, and to heal after all the treatment. Then I think you will come out of hibernation and start to have more energy. I do hope this doesn’t sound smug and bossy from someone who isn’t going through what you are going through. You certainly were fired up with energy organising things when you first got the diagnosis and I treasure your dad’s wee veterinary tablet though you gave it to me hopefully years too soon.
    We are still thinking about you every day and sending you waves of energy – I’m sorry they seem to be getting lost on the way just now.
    Juliet and Alan xx

    Liked by 1 person

    • I’m sure you are right, my bossy friend, and I will come out of hibernation with some of my old energy back 🙂 Keep sending the waves of energy – the effect – like chemo and radiation – might be cumulative. xx

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  18. Dear Mary, I think that ‘like’ button should be a ‘hug’ button … lots of these are winging their way to you. ❤️

    Oh, your open and honest post is heartwrenching to read. My heart goes out to you with your pain at swallowing and I dearly hope this heals soon. The fatigue sounds horrendous but think of the rest as healing. Your body has been through an horrendous ordeal – give it a chance to recover from the treatment. Grrr … the last thing you needed was a broken promise of a much-needed phone call!

    Mary, you’re in my thoughts and prayers, hugs xx

    Liked by 1 person

    • I like sound of a ‘hug’ button, Annika – and thanks for sending them. I’m hoping if I let my body have all the sleep it needs then maybe my next post might be less of a moan as the side effects start to wear off. The phone call which didn’t happen was pretty much the final straw yesterday – there was one today 🙂

      Liked by 1 person

  19. So sorry the pain isn’t easing, hopefully it will improve albeit slowly. Rest whenever you need to and welcome the sleep. It’s frustrating when you want to be doing things, but your body has taken a battering and needs to renew itself. Do what you can, when you can and don’t be too hard on yourself. Take care, sending positive healing thoughts as always. xx

    Liked by 1 person

    • Yes, my body really does feel like it has taken a battering. I was told I’d about the side effects but until you experience them you don’t really understand what they mean. At least, although swallowing is painful, it didn’t get so bad I needed a feeding tube. I don’t think the pain will get worse now – hope I’m not tempting fate. Thanks for your healing thoughts. I will accept my body needs to sleep.

      Liked by 1 person

  20. Hope things improve soon, Mary. These cold, dark days probably don’t help either but the snowdrops and crocuses are popping their heads up in the garden, and hopefully you’ll be feeling a lot better when the sun appears again. All these lovely responses show how valued you are by so many different people. You’re in my thoughts, sending you lots of love. xxx

    Liked by 1 person

    • I hope so, too, Alison. I don’t much care for the me who mutters and moans all the time! I went into the garden today – supposedly to count birds for the RSPB, but as the cat came, too, the birds stayed away – and saw the snowdrops about to flower and one crocus too impatient to wait has burst into purple flower already. Sunshine would help. I do treasure the lovely responses from you and others – they keep me going. xx

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  21. I know that all of us reading your post would be willing to take on some of the pain and the tiredness Mary to share it more evenly and it is not fair that you have to bear it alone..As Olga said it is still early days but hopefully the throat and burns will heal soon… rest is what the body needs and nourishment, and I know you are making great efforts there. We love you and hope each day there is some improvement. ♥♥

    Liked by 1 person

    • Monday (February 1) will be two weeks since my last treatment, Sally, and I’m so hoping the throat pain will have lessened by then. The ‘sunburn’ is bearable and the burnt area is smaller than it was, still keeping to the shape of the treatment area. I am learning to live with the need to sleep 🙂 so, really, if the throat thing would clear up life would be a lot easier and happier. I eat whatever I can and what takes my fancy – at the moment it’s very thin toast spread very thickly with butter and honey. Thanks for your continuing support, Sally – it means a lot.

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  22. goodness, three days since you posted this. I hope I’m catching up at a point where all that sleep, which is so necessary is working its magic on both emotional and physical levels. You write so graphically that we have been able to understand the perils of your journey. Keep going, we’re all on this big dipper along with you in spirit. big hugs. Well, maybe not, you’re probably far to sore for hugs even if they are virtual. xx

    Liked by 1 person

    • Good idea to wait for a few days after I’ve posted an update because, of course, things start to look – and feel – better with the passing of time. The patch of ‘sunburn’ is reducing is size and the swallowing is becoming easier so my fingers are crossed that the side effects are wearing off now. Virtual hugs are perfectly acceptable – thank you xx

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  23. Update us when you can and feel like doing so, Mary. Don’t feel guilty for not doing it. As many have mentioned in the comments, we’re all different and travel at our own pace.
    I hope when you sleep, it’s all uninterrupted sleep? I’d be interested in knowing if your dreams have changed too (if you’re somebody who can remember them). I only ask because I hear that a lot of people get more vivid dreams during uncertain times. I recently took part in a discussion about it, and it seems that many of us are having more vivid dreams since the pandemic started.
    How is your son? Have you been able to speak with him?
    Take care,
    Hugs,
    Hugh

    Liked by 1 person

    • Funny you should mention dreaming, Hugh. Someone else asked about that and I told her about dreaming about Moosa, a Hazara friend from my Afghan days. He was in a bed and all covered in white bandages and sheets being lowered from a roof or window and I was worried he’d get sunburned (probably my own ‘sunburn’ there) Today, Jawad called me from Afghanistan on Messenger and I described my dream to him and he told me Moosa has just been diagnosed with TB. He is on treatment and will be fine but how odd it was him I dreamed about. And the Krispy Kreme donuts were very vivid – I really expected a box of them beside me when I woke up – very disappointing.
      My son is about to ring me this evening for a catch up. Love and hugs xxx

      Liked by 1 person

      • Fascinating, Mary. It really makes me believe that what is going on in our lives impacts what we dream about. I’m still not sure how to answer the question – ‘are the strangers in our dreams real people, or just figures of our imagination?
        I wish Moosa well.
        Take care.
        xx

        Liked by 1 person

        • I think you are right, Hugh. I suspect our subconscious works away while we sleep making sense (or trying to) of stuff going on in our lives. I don’t know the answer to your questions about strangers in our dreams. As for dreaming about Moosa – well, I’ve been sorting out photos of Afghanistan for scanning and he is in one or two. Coincidence? He will be fine, I hope, as he is on medication.

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