The inconvenient walking dead… II #COVID #cancer #carers

Angry bird cartoon on IV drip

Artwork by deviantART artist Scooterek

Continuing from yesterday’s post…

A few days after speaking to my GP and before the hospital referral process could kick in, both I and one of my lungs collapsed. I was lucky to have my friend with me at the time, otherwise, I would not now be here writing this.

I was admitted to hospital. Worryingly, via the resuscitation suite.

Once on the ward, they drained a massive build-up of fluid from around my heart and lungs, by the simple expedient of sticking a needle through my back and into the fluid. Not exactly comfortable, but it gave me instant relief from the months of back pain.

They also did a needle biopsy in the CT scanner. The needle is not precisely fine, they do not put you to sleep and if they have to wriggle the needle once inserted into the lung, it does hurt like hell. I was diagnosed with incurable lung cancer, ‘stage four plus’. On all the available scales for grading and staging cancer, I scored the worst. It was at this point I signed the DNR, so that should my heart stop, they will not use CPR or waste an intensive care bed to try to bring me back when my heart can no longer cope.

Still officially a carer and employed, I was signed off work for two months. Another two would be added later… with the unlikelihood of ever returning to my job making itself felt. My options were limited. Radiotherapy and surgery were not possible, which left only chemotherapy and immunotherapy with which to attempt palliative treatment in the hope of extending life of a decent quality.

Chemotherapy has been around for a while, but immunotherapy is relatively new. It does not work for everyone. The only thing you can predict with any certainty is that the side effects are going to be as unpleasant as, and very similar to, chemotherapy. They include, but are not limited to nausea, vomiting, sleeplessness, oedema (swelling), mood changes, hair and nail loss, digestive problems,  liver and kidney damage… the list goes on. It is extensive and appalling. You need a really good reason to put yourself and your loved ones through that.

Because of the COVID-19 situation, I was categorically told at the time, both in writing and over the phone, that I could have no-one with me for the appointment when I was to be told all this; no hand to hold, no shoulder, no moral support. I was later told that this was wrong, that I could have had someone there… but as with much of this COVID debacle, by then, it was too late. Once passed, you do not get these opportunities back.

So, alone with the oncologist, the nurse and more information than a stunned mind can process at once, I took the difficult decision to go for the chemo/immunotherapy combo. This entailed having intravenous drugs dripped into my bloodstream on three consecutive days every three weeks… three drugs on day one and another dose of each chemo drug on subsequent days. These drugs are so toxic that only the fact that they can conquer cancer makes them acceptable. Veins which had always cooperated until this point ran away and hid, so each session also ended up needing several attempts at inserting the cannula into a  vein, and arms that were black, blue and swollen. My stomach was little better, as each cycle of chemo sessions was followed by seven nights of giving myself injections in the belly. Thankfully, I have no fear of needles… just of runaway veins…

The first month wasn’t too bad, aside from the inability to sleep and the constipation caused by the drugs which caused both much merriment and severe distress. I hadn’t been sleeping well for months because of the pain I had put down to my back. But the side effects are cumulative and towards the latter end of the treatment, the ‘good’ days between treatment cycles were few and far between.

By this time, I was so grossly swollen and breathless that I was sent to Emergency for further scans and tests to make sure I did not have blood clots, blocked veins in my lungs or some other unforeseen horror. Nothing was found and it seems I just have to live with looking like a fat, over-inflated caricature of myself, with mole-like eyes that occasionally disappear, a reddened face… and completely bald too, apart from the ‘Tintin-esque’ fringe that seems to have survived so far.

It is all very depressing. And, because, behind the masks it is less easy to read people by the normal cues, I am now judged as a fat old woman and treated accordingly… and you would be surprised at how much of a difference that makes to people’s attitude towards you. That too is depressing. Of course, as I have what is officially classed as ‘breathing difficulties’, I officially don’t need to wear a mask… but try that and see how you are treated then… That is just way too depressing.

Just days before Christmas, I finished the chemo, although the immunotherapy (and, I fear, the injections) will probably go on for the rest of my life. I had tried to maintain good humour, but I often failed… Being exhausted and yet unable to sleep made it worse and I got snappy, I cried a lot in private, set off by the smallest of things, and was desperate for a hug. Then would come the days when I would catch up, like it or not, and sleep for eighteen hours…usually on the sofa and with the door open for the dog.

Sometimes, I really wondered if I had done the right thing. It was unlikely I would have made it till Christmas without the chemo. But, maybe it would have been better to just slip away quietly… die quickly and solve the problems for everyone… except those you love. Or maybe, I thought with more hope, after Christmas, I would be able to spend time with friends and family, get out into the land, just have bought enough time to compensate for the three months lost to COVID restrictions.

Because love was the reason I was doing all this. Not time.

Yes, another decade would be nice. Okay, even a couple of years would be good… but I knew that was unlikely to happen. Only one in five people with this type of cancer (SCLC) who are diagnosed at this stage will live for a whole year after diagnosis. I had done plenty of research.

We have been in a similar situation before too. My late partner, who my sons had thought of as a father, had died of cancer. Even so, his death at that point was unexpected and I had only been able to watch my sons suffer as they grieved.

I just wanted enough time to be able to spend with the people I love… to play with my granddaughters, to be with my sons and my partner, to hug friends and family and make memories. And maybe, being able to spend that quality time in love and laughter together, we could all grow used to the idea, at least a little, and it might make my passing just a touch easier for them with every temporary ‘goodbye’ and ‘see you later’.

At least, that was the idea…

(To be concluded tomorrow)

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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115 Responses to The inconvenient walking dead… II #COVID #cancer #carers

  1. edwardky2 says:

    I love you Sue. Many, many hugs. Thank you for your writing. My mother had to endure this. Seeing your words I know she did it also for the love she had for her family .❤🌻❤💐❤

    Liked by 2 people

  2. gmvasey says:

    Reblogged this on The Magical World of G. Michael Vasey and commented:
    Part 2 – please read Sue’s account…

    Liked by 2 people

  3. Ritu says:

    Oh, Sue. Hugs 🤗🤗🤗

    Liked by 1 person

  4. Darlene says:

    Thanks for sharing your thoughts and experience. To have cancer is bad enough, but to have it at this time of COVID is a double hit. My heart goes out to you and your family. You are loved by so many. Sending hugs to all of you. 💗

    Liked by 2 people

    • Sue Vincent says:

      That is one of the things I wanted to highlight, Darlene. Not ust cancer patients, but many with chronic and terminal illnesses are having to go through the journey without the emotional and/or physical support they need. ❤

      Liked by 3 people

    • Dear Sue and Darlene,

      I definitely agree with you that surviving a pandemic (and cancer) is about more than physical health, for it is also about mental health. One wonders how much longer we have to contend with and adapt to the situation, as the vaccines are still unavailable, and social distancing is making people lonely or isolated. Having some good hobbies and pastimes are essential in maintaining good spirit. Having people to love and support you is also important, and I hope that Sue will continue to have good company during such a difficult phase of your life.

      Moreover, as we maintain spatial distancing and stay home to avoid contracting and spreading the coronavirus, please kindly allow me the pleasure to entertain you with a bespoke poem and music recently published in the multimedia post entitled 🎼🎹—THE—🎹—LAST—🎹—RAG—🎹🎵🎶, where the featured composition for solo piano can be enjoyed and studied in multiple formats available to you as the audio playbacks, the video captures of score with music, and the gallery of printable score sheets, which will be very helpful and illuminating to you if you can also read music.

      The said post is available for you to enjoy at http://soundeagle.wordpress.com/2020/04/12/the-last-rag/

      Since music can be an essential part of the process of sustainability, wellbeing, healing and even social change and spiritual awakening, may my music and poem in the said post bring you and your family some creative “distractions” or “diversions” amidst the disruptions and woes engendered by the pandemic.

      I shall be very curious about your reactions towards and thoughts about my original piano music there.

      Happy listening and happy winter to you and your family!

      Happy New Year to you! May you find 2021 very much to your liking and highly conducive to your writing, thinking and blogging!

      Liked by 2 people

  5. Reblogged this on Musings on Life & Experience and commented:
    The Inconvenient Walking Dead, Part 2. by Sue Vincent

    Liked by 3 people

  6. Sadje says:

    Your treatment journey has been very difficult and stressful, more so because you did it all V on your own. Sending you lots of love and hugs.

    Liked by 1 person

  7. TanGental says:

    It’s so hard all round. For you, for you family for Ani. To know you are loved is divine though. And from this corner of frosty south london, know too you’ve inspired by your poetry with such echoes of my late father, you beautifully constructed posts and your selfless support and promptings. And, as in the Grail ‘I’m mot dead yet’ so more to come while you can even as you channel your inner bibebdum…

    Liked by 2 people

  8. What you describe is so unfair, Sue. I cannot find the right words to show how much I care, I am so very sorry…

    Liked by 1 person

  9. jwebster2 says:

    I’ll stick this on my facebook page, more people will see it than see my blog. I think it needs to be shared, for people to know
    So take care and consider yourself virtually hugged 🙂

    Liked by 1 person

  10. CarolCooks2 says:

    Just love and hugs xxx

    Liked by 1 person

  11. willowdot21 says:

    Sue you tell it as it is and it is awful. I have not got words. So I will just send you love light and hugs.
    What you have said here will be of help to many and hopefully a wake up call to more 💜

    Like

  12. Wrapping you in much <3, Sue and hugs. ❤ xX

    Like

  13. Everyone has already put into words what I want to say. You really are one of the most wonderful, incredible, inspirational ladies I have ever had the fortune to meet. Sending love and hugs xx

    Like

  14. memadtwo says:

    Having been through cancer treatment as a support person, I can’t imagine how it could have been managed from either side without an actual physical presence of the many people needed to deal with all the aspects of treatment. There is no reason to enforce such stringent rules in these situations. My heart goes out to you. My grandfather would not allow us to see my grandmother when she was dying of cancer, and I will never get over that loss. (K)

    Liked by 1 person

    • Sue Vincent says:

      It is so important for those who wish to be there to be able to be there. Already there has been grief from those who know we will not meet again, for the likelihood of friends from overseas being able to travel widely for a long time is low. This is all so unneccessary.

      Liked by 1 person

  15. As difficult as it is to read your words, and no doubt much harder in many ways to write them, it is also a gift to share an intimate, raw journey like this. I think of you often and send my love through the ocean that divides us. If I could be there, I would be. ❤

    Like

    • Sue Vincent says:

      I know, Alethea… and in many ways, you already are. I don’t find it hard to talk about dying… only about howthose I love will inevtably feel. Oddly, though, Ani sets me off a lot… ❤

      Like

  16. noelleg44 says:

    A wonderful insight in the workings of your mind, Sue, and a tribute to your tenacity and love for your family and friends. As I’ve mentioned, I think you will have more time than you think and all of us are glad for it.

    Like

  17. V.M.Sang says:

    Such moving posts, Sue. I’m at a loss for words to express my feelings. Sorrow does not seem strong enough. Love and Hugs. Vivienne.
    xx

    Like

  18. Virtual hugs from me, and puppy kisses from Lilie and Logan – since that’s the best we can offer at this stage.

    Like

  19. Sending you huge hugs, Sue. This made me so sad, but your choice to add time that you can fill to the brim with love is very you. ❤

    Like

  20. You are so brave, Sue. I know we haven’t met face to face, but I enjoy yours (and Ani’s) writing so much, and I think of you as a friend. I so wish you didn’t have to go through this. ❤

    Like

  21. I can do nothing but hope that you can have a better quality of life. I wish I could help. Sending love and hugs

    Like

  22. Widdershins says:

    Have some more virtual hugs. 🙂

    Like

  23. This is the bit that makes me so FUCKING angry when I see the dickheads flouting the rules and Boris and his similarly out-of-their-depth cronies fannying about when they should be acting. Not that the rules make sense, but there are some common sense things we can do to minimise the spread of Covid-19. Sadly, the selfishness that seems to occupy a sizeable minority in society has taken priority. If people showed a little more restraint, we could operate in some approximation of normality. I know it only forms part of your experience, Sue, but the impact has undoubtedly been high. One day, I’ll share our story with you. The consequences were less severe, but still significant, especially when you know the situation is being played out repeatedly around the country. That sharing needs to take place with a cold drink, though. I know Ess has already commented here, but you are very much in our thoughts.

    Like

  24. Pingback: Courage: Grace under pressure. #DonaldTrump or @SCVincent ? #POTUS #Cancer | Barb Taub

  25. The ability to write this so openly and honestly shows your amazing strength of character, heart, and soul, Sue. May LOVE keep you here with us, your fans, and with your loved ones, as long as you’re able. You are a special woman. ❤️🙏

    Like

  26. Sending you blessings, and feeling sorry about the things you have to deal with, during this sad Covid-time. Be sure, you will overcome it, and enjoy a wonderful future. Michael

    Like

  27. Wendy Janes says:

    Thank you for sharing your experiences with us, Sue. Sending virtual hugs and positive thoughts your way.

    Like

  28. Gwen M. Plano says:

    Dear Sue, I’m so sorry you are dealing with the worst that cancer offers. To face it during COVID makes it even more hideous and my heart breaks for you and yours. My diagnosis came in October, but I am doing well. It will be a lifelong journey, but I’ve been given – time. You’ve written beautifully about time, something we don’t think about until health betrays us. Because of your sharing, we all pause and realize the sacredness of moments, hopefully minutes, sometimes months. Time is a gift we too often ignore, but you’ve put the spotlight on it and shown us its preciousness. Thank you for sharing your beautiful soul. I wrap you in love and in prayer.

    Like

    • Sue Vincent says:

      Thank you, Gwen. Time is not something I am being promised, though I have done exceptionally well on the chemo and bought more time than expected… as long as all the other bits hold out 😉 We do take time for granted, even as we age and know it will run out eventually, until something stops us in our tracks. I hope your journey continues to go well and that your outcome is good. xx

      Like

  29. This sucks, I can’t think of any other way to describe it that’s printable. Thinking of you every day Sue. Hugs by proxy, and positive vibes being sent your way ❤

    Like

  30. Eliza Waters says:

    I’m so heartily sorry about this rough road you are on, Sue. Sending you huge hugs. xo ❤

    Like

  31. Jim Borden says:

    thank you being so open about what you are going through; it is inspirational…

    Like

  32. Sending more of the gentle virtual hugs. So sorry that you are finding people treating you like this, especially when it’s the disease making you puffed up. And not letting you have someone with you when you could have had is completely heartless – AND counteproductive because it’s impossible to listen well when you get these diagnoses dumped in your lap.

    Hoping that they are not incompetent at helping you as well. And wishing the best possible outcome – may you be among the luckiest.

    Like

  33. dgkaye says:

    Thank you for sharing your deepest thoughts with us Sue. I imagine as a writer it helps to document your journey and helps us to understand despite my heart feeling so heavy for you. Take in the virtual hugs, they may not feel the same but they are sent with good intentions. ❤

    Like

  34. I’m so sorry for what you’re going through, Sue. Thanks for having the courage to share these details.

    Like

  35. Jennie says:

    As always, I love your thinking. Of course you’re doing this for love. My heart right now is probably as swollen as you are. Bless you, Sue.

    Like

  36. Dalo 2013 says:

    The struggles you are going through are even more heartbreaking with the current situation of covid and the stressed medical systems/community. Mentally, I have a tough time imaging how I could cope with such a situation. My thinking becomes a bit clearer when you mention, “…being able to spend that quality time in love and laughter together, we could all grow used to the idea, at least a little, and it might make my passing just a touch easier for them with every temporary ‘goodbye’ and ‘see you later’.” It is a sentence like this that while there is sadness, this sadness is overwhelmed by a flood of love; for you, life, and those precious around you. Thank you so much for writing about all of this ~ take care.

    Liked by 1 person

    • Sue Vincent says:

      I just wish that we all had that opportunity at the moment, Randall. With so many in isolation, lockdown or shielding, spending any time with loved ones is so much more difficult for so many. I manage through video calls at the moemnt.. though as I have now lost my voice, that is proving amusing 🙂

      Like

  37. Sending lots of love and hugs.
    May god bless us all.
    Things going to be alright.

    Liked by 1 person

  38. How did you manage to write, etc. while you were going through all the treatments and side-effects?

    Like

    • Sue Vincent says:

      Witing actually helps. I’ll be in treatment until it shows that it has stopped helping… or until I die. Writing helps me focus and, let’s face it, with a full covid lockdown, there is not much else to do unless you watch TV…. which I don’t 🙂
      Plus, with limited time, there are a lot of projects I woul dlike to complete.

      Liked by 1 person

  39. Rowena says:

    Ouch, Sue. Feeling very emotional reading this. You’ve shared your experiences so beautifully which makes it even harder to process. Sendng hugs.
    Best wishes,
    Rowena

    Like

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