It has been a weird few weeks. It started well enough… Three of us actually sat and talked through one day’s whole treatment. That is highly unusual… few people seem to want to talk in the chemo suite.
The usual side effects from the third batch of chemo were not too bad, apart from the fatigue, which was, and is, worse than debilitating. It is not like any fatigue you have felt before, but you feel as flat as a pancake to begin with, just from your body’s attempts to resist the cancer, then the chemo laughs and sucks out any remaining energy from every corner of your being. A vacuum cleaner with that level of efficiency would sell by the million…
The unusual side effects, came from the second round. The extravasations… where the chemo leaks out of the drip and ito the surrounding flesh. Some of the medications dissolve muscle, apparently… and you can end up needing treatments up to and including amputation. I had one on each hand and they were still playing up. One had been caught, treated early and inspected daily. The other, which had looked worse to begin with and had not been caught or treated at all, had been ignored. It didn’t approve, waited until after the third cycle of chemo, swelled up in a lump and went red. At the same time, I started feeling ill. I was a tad worried.
I called the specialist nurse… was called in to see the medics, who looked at the hand and sent me home with steroid cream. The feeling ill bit slipped under the radar. A follow up call and appointment were arranged though. I also got a letter through which detailed the full extent of the cancer for the first time… and it was scary. The worst ratings on the TNM scale, extensive stage, because it is metastatic and invading everywhere including the lymph nodes, cancerous fluid on both heart and lungs… and a squashed pulmonary artery.
It is enough to get you down a fair bit, wondering if all of this is going to buy you back any worthwhile time at all.
Then I had my scan… the one to see whether the chemo and immunotherapy was actually working.
I kept on feeling ill. But when the oncologist called a week and a half later, it was with very good news… the tumours were shrinking. Had shrunk, in fact, by up to half in places…!!!
That was unbelievable! I was bouncing… but only mentally. I didn’t feel as good as I thought I would on such news.
Next day, I had the follow up appointment for my hand. I had spoken to the oncologist the previous day… and finally got across the ‘I am not well’ that had been worrying me for so long. My face and torso had swollen obscenely. The first thought was that the steroids were to blame. I had stopped them weeks earlier, though, and taken diuretics for a fortnight and was little better. And I really felt ill. I had been sleeping up to seventeen hours a day, on and off, and had been pretty much useless for the last week.
The doc looked at my notes… “Hmm… good news. Congratulations on the tumours shrinking.” I had a long list of questions about those scan results… but didn’t get chance to ask any of them. “You are not well,” said the doc looking at me for the first time and noticing how breathless I was. He prodded, poked… and pcked me off to Accident and Emergency.
So much for the ‘high’ of shrinking tumours…
I spent the rest of the day and all evening in the same room where I had been almost killed between a spider bite and an allergy to the antibiotics they gave me to combat the bite…
Which was less than reassuring.
Shrink the cancer only to be killed by the side effects? Hmm…
Blood tests, another scan, ECG… you name it. But apparently the swelling is not being caused by blood clots in the lungs, a squashed vein to go with the squashed artery, or any of the other potentially lethal nasties they were looking for. And apparently a resting heart rate of 110+ beats per minute is nothing to worry about either… for a cancer patient.
As a cancer patient with a DNR … a ‘do not resuscitate’ signed and sealed… I beg to disagree. I chose to go with the DNR because, if my heart gives out, it will be because it cannot cope with the cancer any more. There is no point in putting me and my body through the hell of CPR to bring me back to face a recurrence because my body still cannot cope. Death is not the enemy… it is a natural end to the process of life. We can do so much to extend life or save it… but there are times when we should perhaps leave well alone.
Anyway, they eventually sent me home. After filling me with steroids by the handful, sticking me full of blood thinners and bruises and doing another CT scan.
By this time I was shattered. The five mile drive home seemed like climbing Everest and, although I’d missed meals and was dehydrated, tea and toast constituted dinner. I was utterly exhausted.
But then, I looked at my discharge letter… in the week and a half since the previous scan, the tumours had shrunk even more than the percentage I’d been told!! Basically, from tumours the size of say, large jam doughnuts, we were now looking at walnuts.
I couldn’t muster the energy for a wild celebratory dance, but I did one mentally. This has to be excellent news!
Even if, at the back of your mind, there is the doctor’s voice warning you that with small cell cancer, it responds very well to chemo for a while. Then it stops working, for no reason anyone can fathom, and you deteriorate fast.
And that has been the past few weeks. Up and down… as fast as a rollercoaster ride. You do not get time to celebrate the victories… even though this is not a battle, but a trial of acceptance and peace. There is little time to bemoan the down days before something positive can happen… largely because you sleep or sleepwalk through them and it takes something positive to wake you up. The goal is impossible… and yet you walk towards it anyway, believing and wondering if you will make it, both at the same time.
It is a rollercoaster of uncertainties…and as Mary suggested, someone should be researching the effects of uncertainty on cancer patients.
As for me, I have never been a fan of rollercoaster rides…
Sue Vincent's Daily Echo 
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Oh, Sue!
Huge, gentle hugs 🤗🤗🤗
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Thanks, Ritu x
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Reading this was a bit of a rollercoaster ride too, but thanks for sharing the ups and downs. Uncertainty is hard to deal with. Wishing you strength for the long haul. 💚 💜
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It has felt very up and down for the past few week, Audrey! x
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Uncertainty is the most difficult part of this treatment. But if the tumors are shrinking, the treatment could be coming to an end and then your body will get the time to recover its energy and feeling of well-being. Hugs and prayers for you
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I hope so… though part of it at least looks as if I’ll have to continue with it lifelong.
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There are meds that one needs to take longer long after recovery.
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Normally I tell people to ‘stay well’
In this case it isn’t really appropriate is it 😦
In your case I’d suggest ‘Stay fighting.’
Because your blog, it’s honesty and wit, are doing a lot of good to help a lot of people
So stick with it 🙂
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I’ll settle for satying breathing and upright at the moment 😉
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I assume satyring was the word you meant 🙂
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No…but that’ll do nicely… 🙂
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😉
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Good news about the tumors shrinking. Hope you can start feeling better. Thanks for sharing all that you’re going through.
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❤️ Sue ❤️
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Such good news about the shrinkage, Sue, but what the treatment has done to you is alarming!
We have every faith that you can fight this thing, just wish we could help somehow…
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Reblogged this on Anita Dawes & Jaye Marie ~ Authors.
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It sounds as though you’re suffering from another of the side effects of modern medical science—doctors who don’t listen. Too many of them look at charts, results analyses and not the patient, the person who is being treated. You can tell them how you feel (if they let you get a word in edgeways) until you’re blue in the face but they don’t hear.
The shrinkage sounds like good news and they’re taking your ‘little side effect’ seriously at last. I hope the next post will be to say that you’re actually feeling better!
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What can I say to make things better for you? I can’t but as always I can sent you love and healing strength. Your helping so many just by sharing this journey…. I don’t like rollercoasters either! Keep gritting your teeth 💜💜💜💜
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Me neither – roller coasters are exhausting all on their own. Adrenaline can only take you so far… Look for the positives – angst never healed anyone.
Fingers and toes crossed for you.
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I don’t like the angst these situations can cause.
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I gave up roller coasters as a very young person. I don’t mind going up and down but I prefer it on the mountains where the vision and views are worth the effort. I was thrilled with the vision of the tumors shrinking. I’m not a ‘hugger’ Sue….but I send you thoughts of hugs and love.
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I just heard via Jim Webster. I am so sorry you’re having to go on this crazy ride. Gentle virtual hugs are the best I can send. And best wishes – it sounds like the doctors have SOME idea of how to handle it. Now they could add a big serving of empathy.
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I only wish I lived next door to you or in the same village as you, Sue. It feels hopeless reading what you’re going through and only being able to say I’m thinking about you. Is there anything I/we can do to help? I make a great pot of tea (it’s about the only thing I can do in the kitchen), and I’d love to be able to share one with you.
Keep fighting and take care.
Hugs
xx
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I hate rollercoasters, too, Sue. Trouble is once on one, it’s risky trying to get off it until it finally stops. I really hope they say you can go ahead with your chemo this week as it is clearly doing its work on the tumours. Read an article today about developments going to trial in delivering chemo in a bubble directly to the cancer cells so health cells are not affected. Bit late for us but it sounds promising.
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Thanks for the update. The highs and the lows. It has indeed been a rollercoaster ride for you. The shrinking tumours is very good news and I hope things settle down for you soon. I am impressed with your courage. I wish I could do more than send positive vibes and virtual hugs. xo
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What can I say, except how sorry I am that this is happening to you. You are stronger in spirit than I could dream about being. Good thoughts and wishes that your small cell cancer tumours will keep shrinking and you will have a few years yet of livable life. Love and best wishes, Sue.
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Wow very powerful are your hearts words! Much that I could feel be a passenger just to sit with you if only for a moment on that rollercoaster. What a ride, I can’t even begin to imagine what you are days are. All I can do is say I pray your body continues to respond to the Chemo, and that you begin to start feeling well so you can be celebrating the tumors shrinking. God be with you, and many prayer!
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Thank you, Lisa. 🙂
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Hi, Sue. Thanks for the update. Great news that the tumours have shrunk; but it is most certainly a hell of a rollercoaster ride for you. Even in the darkest of days there remain positives; and, because of who you are and what you are made of you are able to call upon them to strengthen your spirit and resolve. Sock it to them lass. Best Regards.
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Sue, sending you hugs and strong healing vibes. Hope you are doing better, every day. I know you don’t know me, but you don’t have to, for me to wish you well.
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Don’t like pushing the ‘like’ button Sue, but thank you for sharing your journey as bumpy as it has become. Hugs.
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At least some of the bumps are good ones, Lynn x
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thank you for haring such a personal account of your battle with cancer. your courage and sense of humor, and ability to write, have not diminished in the least. I hope YOU start to feel better and the cancer continues to dissipate…
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Thanks, Jim… so do I 😉
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Pingback: MarySmith’sPlace ~ Cancer Diary #15 | Mary Smith's Place
I’ve been through this with someone, and it’s disheartening that they don’t seem to care about how you feel, how you are actually coping with what the treatment does to your body and psyche while it is shrinking the tumors. Have they suggested acupuncture? That seemed to help my friend a lot with the side effects. Sending strength and hugs,K.
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There are usually several alternative therapies available to help with the side effects… but now we have COVID instead so they are all off the menu …
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It seems like they ought to be able to figure out a way…. Suffering on top of suffering.
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A lot of the things that mighthelp and make this easier for so many have suffered from the pandemic.
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I hope the tumours continue to shrink, Sue. Sending you healing thoughts. xx ❤
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Thank you, Annabelle … so far, so good x
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That is such good news that the tumours have shrunk, they will keep on shrinking they will. So sorry that the side effects are so horrible. Sending love and prayers for you to feel better. Love ya Sue. xxx
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Thank you, Adele. We’re doing well so far. X
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Fantastic, Sue. ❤
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Sending much love and positive vibes, Sue. Having the flu is trivial to what you have undergone/are undergoing. But you are right, the uncertainty, the idea that someone knows more than you about what is happening in your body is both wrong and unfair. And is a longstanding failure on the part of specialists. You and Mary are more than a good team ( when strong enough)to get together to write a piece about that to send to medical Journals. I know this is a bad time all round with the virus – and I know the work they do is exhausting and time consuming – but even so we are all individuals – people who need to be seen as people. Take care. xx
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Just at the moment even getting my head off the pillow took work… but things need to change. Feel better soon, lass . X
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Huge congratulations on the shrinkage 😀 …. ginormous ‘bugger!!!’ about the associated unwellness … and a monumental ‘up your arse’ to each and every ‘specialist’ who has shed their humanity in the service of their ‘careers’ … but best of all, and entire planet’s worth of hugs coming your way. 🙂
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Couldn’t put it better myself 😀
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They’ve shrunk! That’s terrific news Sue! The rest sucks though and I hope they can sort your hand out. Sending you positivity by the ton, hugs and everything else, hoping you can sleep and rest.
❤ ❤ ❤
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Shrunk lots too 😀
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It’s great!!! Absolutely brilliant. I’m dancing a happy jig for you by proxy. ❤
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Please do… I’m not up to dancing yet today 😉
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On it………… a lot, round the Christmas tree, round the table, in the hall……………………. ❤
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Heh ❤
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Can’t imagine going through all of that, and wouldn’t wish it on anyone. Praying for you!
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Thank you, Alexander x
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You are so courageous, Sue, to write about your rollercoaster ride with cancer. I admire your attitude and strength in fighting this. Hope, love and wishing you all the very best. ❤
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Thank you, Carol. There is no courage in it… just one foot in front of the other:)
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You and your family are always in my prayers. I’m glad you got some good news, and I’m rooting for you to come through this, too. A friend of mine has you on her prayer list, too. We’ve both lost people to cancer and understand some of the hardships. Sending you lots of positivity and hope this week!
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Thank you , Ena. So much care and kindness out there … it is a beautiful thing x
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Oh Sue, rollercoaster ride doesn’t even cut it, my gawd. But I will say, that is fantastic new about the shrinkage of the baddies. And that’s what you need to keep your focus on. Not any other dark possibility. ❤
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The shrinkage makes the rest bearable 😀
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Yes it does, and the best part to focus on. ❤
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❤
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I’m reaching out across the miles to surround you with a huge, all encompassing hug, Sue, and holding you in that warm embrace for as long as you need it. xo
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Thank you, Eliza x
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I thought of it as going through a long, long tunnel. You can’t stop, you can’t make any choices. Everything is about cancer and treatments and tolerating something horrible be done to you. One way or the other, it’s physically distressing, emotionally scarring, socially and financially limiting. And because it’s cancer, you don’t have time to worry about anything else Sometimes you get some extra time. I think you will. I sort of feel that. Don’t think to much. Survive. The rest will work itself out.
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That is pretty much it in a nutshell x
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Good news even if you don’t feel well enough for celebrations. I hope you’re feeling better today. A moment at a time, rather than a day at a time, Sue. Big hugs. ♥
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A lousy day today and chemo for the next three… but each day will have its moments 🙂
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Harrowing indeed, Sue. I am concentrating on the positives of the shrinking tumours for now. Thinking of you and Mary both, during these difficult times for you two.
Best wishes, Pete. x
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Thank you, Pete, I wouldn’t wish this on anyone, but sharing the journey with Mary is a blessing. x
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I can imagine it is, Sue. Someone else who really understands just how horrible it is. x
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The conversations we share, Pete, you could only share with someone going through it 😉 x
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Hugs to you, Sue. I hate roller-coasters, too. And this is certainly one, but look on the positive side. The tumours are shrinking!
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That’s what is carrying me at the moment, Viv 🙂
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Thanks for the update. Healing thoughts, hugs and prayers, Sue… 🙏💞
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Thanks,Bette… all most welcome ❤
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This really is a roller coaster ride, Sue. My cousin was diagnosed a couple of years ago, and given less than 12 months. The news was shocking and scary – he’s only a couple of years older than me. And yet, earlier this year, having had the treatments recommended, he told me things were looking good. You really can’t tell how it’ll turn out. Take the wins and celebrate them – as much as you can, anyway! X
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That is great news, Graeme.
I celebrate all I can. As much as the buggers will let me anyway 😉 x
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I’ve been thinking of you, Sue. Thank you for sharing your experiences…. I can’t even imagine what you’re going through. May the tumors continue to shrink and may you recover your sense of well-being in the weeks and months to come.
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I am hopeful of a good outcome on all of those, Betty. Thank you 🙂
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Thank you for the update, albeit quite the roller coaster ride. Oh, Sue! Surely those shrinking tumors are very good news. I hope your body can feel better soon. I think of you often, you’re in my prayers.
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Wow, that really is ups and downs ❤
I can't say how amazed I am you are still finding the energy to keep up your blogging – you are one tough cookie! (Though maybe don't mention the 'cookie' word in Ani's hearing 😀 )
I do hope you get some respite from the other symptoms, but congrats on the shrinking tumour news.
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That’s the best bit, of course…the shrinkage… but I could manage without the beetroot colouring, moonface and overinflated limbs 😉
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Ouch! Yes, I can imagine. Or maybe not 😦
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😀
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It is so helpful for us to read about your experiences Sue – lucid and brave. I hope you have good days as well as the ones when your energy is drained.
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There are good days and not so good, though I consider myself to have been one of the lucky ones who do not get the worst of the debilitating symptoms, even though I have, it seems, had amongst the better possible results so far.
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I have always hated roller coaster rides, and yet they are nothing compared to a life of them. I wish you health and ease.
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Thank you.
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Oh, Sue – What some of us humans have to suffer….Cling to the good, shrinkage, news and fervently hope it continues. Here’s to much better days and nights. Thinking of you. Hope and love.Joy xx
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Thanks, Joy… I’m just glad I’m here to grumble 😉 xx
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*Hugs* And puppy kisses from Lilie and Logan
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Hugs back to you 🙂
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I am late to the party again playing catchup…Upright and breathing sounds like a plan and shrinkage sounds like a good result…The rest sucks I do hope that by now you are on the way to being sorted…Hugs xx
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Stuck in mid-chemo-side effect stuff at the moment, but it could be much worse. x
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