“… you have an appointment at ten for chemo…”
“Yeahs…” I view such calls with deep suspicion.
“We’ve been checking you blood test results…” Were they going to cancel my appointment? Reschedule? Bearing in mind I was already on the brink of braving the morning traffic to get to the hospital on time… “Your cortisol levels are low…” Again? I wouldn’t mind if someone would explain why it matters. I know what cortisol is and does… but asking why the levels matter during chemo is generally net with a blank expression. “We need you to come in immediately. So we can get a morning test done…”
“That was a morning test.”
“…the readings are naturally different between eight and ten…”
“Half past nine in the morning…”
“so… if you could come in straight away…” I gave in and assured her I would leave immediately. And omitted to point out that I would probably not be much earlier than I would have ben had I left when I was ready.
I arrive, just a tad early. They draw blood and tell me I’ll have to wait for the results. They may need to give me steroids. They may need to postpone the treatment. How long before I would know? Maybe half an hour. That’s not so bad.
Two hours later and I’ve had my pre-meds but no word… The uncertainty is worse than unpleasant. Meanwhile, no-one has the slightest idea why I am still swelling up like a balloon or when anyone is likely to attempt to find out. They did weigh me though. I’ve put yet another kilo on… oh joy. So much for weight loss in cancer and chemo…
Eventually, the overstretched nurses managed to get hold of someone in haematology who could give them some answers. My bloods were fine and the first of my three day cycle of chemo and immunotherapy could go ahead.
I watched morning turn to noon and finally watched the light outside turn to the dull grey of evening before I was done. Meanwhile, the bags of extra medications, sharps bin and self-inflictable syringes pile up in my handbag and my cancer treatment book is whisked away to be updated.
It comes back with the next two appointments. One, mid-afternoon on New Year’s Eve to see my oncologist. I didn’t have any other plans… and would not feel comfortable complaining anyway when she and the nurses are working. The following appointment is for Twelfth Night… the next round of treatment.
“Just immunotherapy? This is the last cycle of chemo?” I prepare to dance an indecorous jig whilst still attached to the drip stand and oxygen.
“Ah. Well.” I stop and wait… not liking the sound of that. “As it is working so well…”
“Yeahs…”
“The doctor might decide to carry on with another two cycles. They usually do if it is working…” Which it does seem to be… yay!
“Okaay…”
“…and the immunotherapy will be for another eighteen months, I’m afraid….”
If I last that long…
So, I may have reached the end of chemo. Or not. I might have to have immunotherapy for another year and a half. Or not. I may eventually be investigated, or treated, for my Bibendum impersonation. Or not.
If I wasn’t already bald, I’d be tearing my hair out…
(Insert fingers in ears while I scream….)
…And if anyone wants to take up Mary’s suggestion to investigate the effects of uncertainty on cancer patients… I think the two of us between us could provide a decent start to the study….
Sue Vincent's Daily Echo 
Between my diagnosis and finally finding a hospital in which I felt safe being treated, I had to wait for more than three months without any treatment. It took that long to get four surgeons to work on me at the same time — two cancer surgeons and two plastic surgeons. The waiting was terrifying. They kept telling me it was okay, really okay. It’s hard to feel OK when you have two breasts with cancer and your mother died of the disease. But i waited. I didn’t have any choice.
If they are thinking about treating you in 18 months, I believe you can take that as a GOOD sign. They must believe whatever they are doing is working.
Also, if you are putting on weight that fast, it HAS to be mostly water retention. It’s not like you are sitting around eating pastries all day. What else could it be?
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Here, although we have a right to choose, it doesn’treally work like that and we see the doctors where we are sent. On the up side, that kicks off the process very quickly.
They are looking at treating me for up to eighteen months… or the rest of my life, whichever comes soonest… but that is time I did not have, so it is good.
I am hoping you are right on that…it seems the logical explanation… it is what is causing the water retention that they need to sort out.
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Hard to like this one, Sue. I hate uncertainty, but haven’t had to endure it in circumstances like yours. Good to hear it’s working, though.
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I am not a fan either, Audrey….but can console myself with the good news 🙂
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So much uncertainty, Sue. Rest assured we’re with you every step of the way 💜
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I know, Ritu, and that does make a difference! ❤
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🥰🥰🥰
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You’re so brave. If you feel you’d like to vent or get anything off your chest just email me anytime. ((((((HUGS))))) ❤🌼
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Thank you, Jen. With lung cancer, I wish I could just email away the problem ‘on my chest’ 😉 x
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Awe. I wish you could too. 🙂x
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🙂 x
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🙂💜
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Pingback: More uncertainty? #cancer | Sue Vincent’s Daily Echo | Pattys World
I think the fact that they are continuing the treatment because it’s working is a very good sign. There is uncertainty also because the way your body responds to the treatment is a variable. Besides I think covid had blocked lot of the resources in health care.
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Covid is having many unnoticed effects, All the supportive programmes for those on cancer treatment and for their families have been withdrawn and, as only half the patients can be fitted into a socially distanced room, nursing staff are having to work long hours to see them all.
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That is so true. Things that people don’t talk about but a lot of people, specially needing medical care, have been affected by it.
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Unfortunately, that makes so many difficult situations harder than they need to be.
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Indeed. Take care. I hope things go smoothly for you.
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Thanks, Sadje.So do I 🙂
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You’re welcome
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Do you live near Mary Smith, or have both of you lived in the same town or city? If so, it would be interesting to find out if others in the area have a Dx of cancer.
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No, we were, bizarely, supposed to be meeting up at around the time we were diagnosed… the trip had been planned for ages. But I live in the south of England and Mary lives in Scotland.
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That IS bizarre. I hope both of you beat the cancer and have the chance to meet in person.
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We will be meeting in spring 🙂
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I’m looking forward to a post about it.
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More than one, if all goes to plan 🙂
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Hi Sue. I think that talking about time periods like 18 months is good. They believe in themselves and you must too.
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I have a lot of confidence in modern medicine… we can handle so much more these days than even a decade ago.
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This sounds like good news to me but, the uncertainty would drive me crazy. Enjoy your Christmas, my friend. 💖
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And you, Darlene ❤
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I’m with Audrey, it’s hard to like this one. The uncertainty must be so wearing. Good to hear the treatment is working. ❤️ Sue ❤️
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It is one of those things…some of it is unavoidable, but the avoidable ‘not knowing’ does make it harder. ❤
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I was talking to Mary about each aspect of care operating in ‘bubbles’ (not virus bubbles) and the crying need for people who were able to draw it together for each patient. Absolutely no comparison with what you are going through, Sue, but I had a young consultant recently who came off piste and also, treated me as an individual. I have a feeling that he is only getting away with it because of the pandemic and I am grateful for his courage and care. ❤
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It makes a huge difference when all departments actually know what is going on across the others. The number of people who do not know you have serious problems with one part of you health… ach.
What tickles me most is the GP’s surgery, asking me if I am well before they let me through the door! I know what they are referring to, but I not ony have cancer but I probably wouldn’t be getting an appointment if I were anything but un-well these days 😉
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How simple it would be for them to ask, ‘do you have any Covid-19 symptoms’ instead. I’ve noticed that so many people in industries that deal directly with the public are relying (almost exclusively) on what the current authority of the moment is telling them, and not going with common sense first. Seems like everyone’s afraid of getting sued and/or dodging responsibility for their actions (nothing new there, eh?) … and the ones who are going with common sense and have to deal with the others who don’t are burning out at a great rate of knots … those bloody vaccines can’t come fast enough.
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At te cancer unit, they ask one set of questions every day… till they recognise you and then you get ‘any change?’ Which works for me.
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Uncertainty is one of the worst things. Yes, there is some good news there, but it must be so hard and so exhausting for you. Sending hugs xx
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You know how it it, Ess…you just take each day at a time. Some are better than others. xx
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I guess you have no choice but to do that. I have to say, you are an inspiration, Sue. Take care xx
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You too, Esther. Hope it won’t be long before we can meet up x
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That would be wonderful, Sue. Xx
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Indeed it would. Fed up of being a prisoner… x
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I’ve often heard that the treatment (chemo0is worse than the disease, symptom-wise. And uncertainty can sometimes feel worse than not knowing.
But sneaking through the frustration, did I hear some positive news? Concentrate on that and chant ‘Om’. (My daughter does a lot of that.)
If you could find an empty corner in time to relax, it can only help.
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Lots of positive news in there… though I’ll be glad when I can sit down and discuss it properly witht the oncologist and see how it translates into time on a practical level.
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There is a lot of positivity in your post, Sue… and so glad to hear there has been progress in the right direction. I too, wish they could be more transparent!
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I just wish they would all talk to each other…and then talk to me 😉
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It’s not very reassuring, I know and asking questions doesn’t help either…
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No=one seems to have any answers they are willing to share…
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They don’t seem to realise that they scare us silly when they leave us in the dark…
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It is far worse than knowing what you are dealing with.
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We can never live well with our imaginings…
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Not the darker side anyway…
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Reblogged this on Anita Dawes & Jaye Marie ~ Authors.
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Thank you for sharing,Jaye x
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I hear you, Sue. I’m afraid my idea about research into the effects of uncertainty on cancer patients won’t go anywhere – no one is going to fund research which in all probability would result in the health service being asked to make some big changes in how they treat people.
Every bit of good news that comes our way – like shrinking tumours – seems to be wrapped up in sheets of ifs, buts, maybes.
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I fear you may be right, Mary. It is the system that needs a majot overhaul…and patients should do it.
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Hi, Sue. So many uncertainties can be distressing; but, being a fighter you’ll not succumb; as the song says ‘accentuate the positives’. Which song now escapes me. Maybe you’ll be able to remind me when you have a moment. Keep fighting gal!
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“Don’t look for Mister in Between 😉 ” I believe the title is “accentuate the positives”. 🙂
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That’s it – Bing Crosby – You’ve got to accentuate the positive – here’s the link https://youtu.be/5Qk9o_ZeR7s – Wow that brings back memories!
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Always liked Bing 😉
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Me too.
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🙂
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You’ve answered my questions about your treatment, Sue, and I think all in all, this is really good news. The immunotherapy generally continues after the really rough stuff, but if and when the chemo is done maybe all the swelling will go down? Sounds like a lot of water retention for whatever reason. You are indominatable! Lots of good news for Christmas. Hand in there!
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I would have liked thenormal number of chins for Christmas…but I can wait. If they go…
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I do hope the beginning of good news develops to a refreshing and life giving new year. I can’t imagine what you’ve been through thus far but your blog tells me it is no walk in the park nor matter-of-fact.
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No, it hasn’t beena a walk in thepark, though I’ve had it easier than many,Paul. It isn’t a curable cancer, but they do seem to have done a hue amount of good so far.
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Blessings Sue, hope more can be done.
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I’m happy to wait and see on that one 🙂
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I like your approach.
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🙂
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I’ve come to the conclusion that all medicine is based on best guesses. But with cancer it becomes multiplied. Fingers crossed for an end to at least the chemotherapy. (K)
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One step at a time will do me…as long as I can keep taking them 🙂
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Yes.
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As some people have alreay said, liking is not the right word for this one. However again, like a lot of others have said, there is positive news there. Keep on keeping on, Sue. Were all rooting and praying for you. Sending lots of virtual hugs.
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Lots of possible positives. I can’t wait to see the oncologist though and get some definite news.
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Continuing because it’s working is good news indeed but boy, uncertainy is deeply deleterious. It’s a subject that definitely needs research. We know what stress does to us and uncertainy alone creates unbelievable stress, possibly the greater part of the mix. You and Mary are inspirational posting about your journeys with such humour and insight into the human condition. I roared at the ‘Bibendum’ gag. In different circumstances, my mother described herself as the Hoffmeister Bear! Take great care. x
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I am definitely ballooning with whatever it is, Sarah. 🙂
And they wonder why my cortisol levels are going haywire…
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I wish I could whisk you to Dana Farber in Boston. Even if I won the lottery and could get you on a private plane, Covid would stop you from getting here. Sigh! It does sound like you’re mostly getting good news, Sue. Thank you for the updates!
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Covid is stopping many things…
I’ll keep updating as I hear anything 🙂
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Thank you, Sue. I care. ❤️
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I know, Jennie ❤
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I’ve read your journey and not said anything, but my prayers and good thoughts are with you, as well as kisses from my small dog Mindi. I wish your good news weren’t wrapped in so much uncertainty, but that seems to be the way of things these days. Fight on, my friend. Cancer is a vicious enemy, but it’s not unbeatable. ✌🌹💖
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Thank you, Jo.
One thing that this journey has done…it had brought a good many readers out from the shadows to the comments, where I can thank them and ‘meet’ them:)
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Up and down still, but keeping positive. Thoughts as ever are with you Sue. Hang in there.
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Likewise, Di. ❤
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Assuming your medical team knows what they are doing…. I suspect the hemming and hawing is because they can’t risk giving ANY of their patients yes or no answers. Giving someone false hope (or the opposite) wouldn’t be good for patient morale. Never fear, Ani will still love you no matter how many chins you have! Hoping you and yours have a lovely and memorable holiday. HUGS!
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I’d settle for some ‘possibly’s, if it will dispose of the beetroot moon-face and multiple chins 😉
Thanks, Alexander… and have a wonderful holiday, howber you choose ( or are allowed!) to spend it. Hugs.
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Why oh why is it all so difficult. Why can’t the doctors and nurses just tell people what is going on. No one can cope with being fobbed off, confused . Clarity please just clarity. 💜💜💜
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It would be nice… ask a question, get an answer…even if it is simply’we don’t really know’…
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Yes indeed a little candour goes a long way 💜
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Why is it positive news/information always takes on fuzzy edges? I don’t ‘like’ this for the suffering you are enduring but I ‘like’ this for your carrying on, writing, and humor.
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Just a few straight answers would be good. They don’t even have to be ‘good’ answers….
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But ‘good’ would be better 😉
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It would.
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Uncertainty is awful, Sue. I feel for you and for Mary. It raises stress which people with cancer sure don’t need. At least the treatment is “working.” That’s good news. ❤ Hugs.
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We have enough to worry about without the uneccessary stuff… ❤
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Sending love and healing thoughts and prayers, Sue… 💞
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Thank you, Bette ❤
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Rest well Sue. You are brave 💗.
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I’d rather be living not resting 🙂
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You will live and live long and happy life 💖.
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I will do my best 🙂
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That’s like champ Sue, lot’s of love and hugs 🤗💗.
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Thanks, Anjali 🙂
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Uncertainty is never easy, esp. when the stakes feel so high. Being dependent on doctors and nurses to give it to you straight is frustrating when they don’t. Hope they have some definitive answers for you soon.
Have you ever read anything by Pema Chodron? A Buddhist nun, she is a prolific writer and two of her titles deal with uncertainty… ‘Living Beautifully with Uncertainty and Change’ (2012) and ‘Comfortable with Uncertainty’ (2002). They might have a nugget or two to help ease your mind. YouTube probably has many videos of her talks as well. Sending you love, light and hugs. ❤
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Yes, she writes beautifully on living life well… I may have to re-read 🙂 x
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Just hugs. You’ve been on my mind, and I keep you in my thoughts. Hang in there, uncertainty is also all around us right now, which makes an and/and, rather than an either/or, when you have so much more of it in your personal stuff right now. Oy. Hugs. Na’ama
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That collective shadow is making this year harder for everyone… apart, perhaps, from those profiting from the situation…
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Yes … I hear ya about those (few, really, all told) who profit from the situation … Most of us are plodding a long best we can, managing best we can. And some – like you – have more than a plateful. Thinking of you! Na’ama
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Thanks, Na’ama.
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I often wonder where you and Mary get your strength from with all that you are dealing with. And then I see the humour woven through the frustration, the worry and uncertainty.As the mum of a daughter working in the ambulance service I know how hard working and over stretched everyone is in the NHS. But I just wish it was realised how stressful it is to be treated as a ‘patient’ and not a person. I think a leaflet on the uncertainty and the waiting would certainly be useful.Sending love and virtual hugs, Sue.x
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I can’t coment on what is available to help with the uncertaintis in normal years…this year so much of the volunatry and charitable support has been taken away from both patients and their families. Let alone how much that could mean as practical support for the staff on the ground. In the chemo unit, social distancing measures mean that only half the patients can be seen at once… yet they all need to be seen every cycle of treatments, often for a day at a time. I don’t know how the staff are coping.
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Uncertainty is horrible, Sue, but you already know that. Mary sent me some details about ‘Maggie’s’ Centres, a place that offers cancer support. I hadn’t realised there was one within walking distance of where I live. Do you know if there is one near you? From what Mary told me, they’ve been terrific in helping her.
Sending Ani and you lots of hugs.
xx
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My nearest is, sadly an hour’s drive away x
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I understand that its very irritating, Sue, but it is good news that the chemo is working. That is great.
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It would be even better if they could placea cannula beforre the sixth attempt 😉
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Eeek! Yes, indeed.
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So sorry to hear Sue. Both you and Mary are both rightly getting mighty fed up with the uncertainty. But good to hear it is working. Sending love and hugs, Marje x
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Very fed up… but for a good cause, we hope! x
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I’m just happy to hear that the chemo is working! Thank goodness. I can’t imagine what you are going through. The uncertainty is what is so frustrating. Huge hugs coming your way. I’m still lighting my evening candle for you and Mary. Yule energy should be good this year which is what we all need. Hugs and love. ❤
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We could all do with a little cheer, I think, Colleen! Thank you ❤
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Agreed. Hang in there and keep your lovely sense of humor. ❤
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I’ll do my best 🙂 x
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❤ ❤ ❤
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That sounds very bizarre,but i am sure you will overcome, Sue! Be blessed, and stay calmed. Best wishes, Michael
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Thank you, Michael 🙂
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With best wishes, Sue!
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🙂
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My gawd that’s a lot Sue. You’re a trooper, and I’m thrilled to hear about the good news progress. Keep the chin upward and focus on the miracles bits ❤
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Doing my best, Debby 🙂 x
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Yes you are Sue ❤
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🙂 xx
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Pingback: More uncertainty? #cancer – Cure4usall
You can’t do better than your best, Sue. It sounds like good news to me. Happy Holidays to you and yours. 🙂 — Suzanne
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And to you, Suzanne.
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Reblogged this on Musings on Life & Experience and commented:
Sue is fighting uncertainty.
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Thank you for sharing, Suzanne.
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You’re very welcome, Sue. 🙂 — Suzanne
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Hi Sue
‘Liking’ this just instinctively feels wrong
But I agree with you entirely about uncertainty and not just for cancer patients. I read a report on suicide and especially with emphasis on farmers about twenty or more years ago and one of the main conclusions was that uncertainty, the lack of feeling that you have any sort of control, are major issues along the path that leads to depression and suicide
Whilst I realise that with a medical treatment you cannot offer definitive answers, I think they’re going to have to learn to discuss things more, point out the options/possibilities and what they hope to achieve and perhaps the chances of achieving it.
I realise this means treating people like grown-ups but still, it could be worth a shot
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For a fair percentage of those running the system, treating patients like people may have to come before treating then like grown-ups…
I know full well that here are no definitites and that everyone reacts differently etc … but talk to us, as you say, cover the possibilities and options…
When my late partner was going through cancer, lack of control over his own life and body was the major issue he fought and, as you also say, the major contributor to depression.
Being aware that you likely won’t reach retirement, let alone a ripe old age, is probably depressing enough for most folk, without all the unecessary uncertainties…
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I remember reading about an American who got so hacked off he talked to his insurance company.
Basically the hospital he was in would just have people come and take samples and do tests at all hours of day and night, during visiting or when he was asleep they’d wake him up. Not only that but they were taking five identical samples for five different labs where if they’d coordinated it they could have done with one.
So because he was the one who was paying he told them he was checking into a hotel across the road. He informed them that he would be available for tests between 10am and 11am each morning, but would be flexible and come in for appointments with consults when they invited him to.
Because it was cheaper the Insurance company were happier with it (the hotel was cheaper than the hospital) and he was better fed,
The hospital staff took some time to adjust but he dates his recovery from then
He was in charge and he wasn’t at their beck and call
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I rather like that idea. In all the months I’ve been havngtreatment, I have only ever been ‘given’ appointmentments, never once asked if they were okay.
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There is an attitude problem
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I’m sorry you’re having to deal with all of this. I hope you can get some answers soon. *hugs*
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So do I, Tori. Hugs x
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All of the above with mince pies and lots of wishes for a Merry Christmas, Sue.. cheers to the good news which was among all of the uncertainty …Hugs x
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I may be waiting to see how that news translates into time, but I am still here and well enough for Christmas, so I’m already on a winner 🙂
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That’s a positive then and a big one…Merry Christmas, Sue x
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Yep 🙂
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Hi, dear Sue, If good wishes were ‘`positive treatments’ eh…but the news so far sounds promising, although the waiting periods must be hard to bear. You are one brave lady and my thoughts are often with you. Hang on in there.” Accentuate the positive” indeed.
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I have a few months yet before things start going downhill again, Joy. Hopefully we can get out to play before then.
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Treatment certainly is an all day event for me. I used to plan around it with more certainty, but labs have become more of a factor. More uncertainty.
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Hi Kristie, I gave up planning too. Even what is scheduled as an hour or so’s appointment tends to end up taking all day.But at least things are happening…
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