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Sick as a dog, thank you Chemo. I am meant to be on top form tomorrow. It’s hubby’s very special birthday and we have a full day of fun planned. Thanks, thanks a million for deciding to be ‘a bad Chemo’ day. Team, my wonderful team, I feel let down. There has been a mistake. You forgot to give me my steroids. I trusted you. I felt safe. I wasn’t safe today. It made a difference, a huge difference. I let myself down too. I forgot to do my own checks. I forgot to ask for my steroids. Consequences. There are always consequences in this Cancer game, some big, some small, some easily remedied, others drastic and most, a right pain in the arse. Consequences, you can rip the rug right out from under my plans. A plan to; feel good, not have to go near a hospital and not have to be in, manage my mood mode because something unexpected and unhelpful has triggered me.
Monday, you didn’t start out a bad day. In fact, you were brilliant until 6pm. I went for my morning blood test, at 8.30, later than usual after a wee welcomed sleep in and a fab, fun, friends packed day, on Sunday. Then, I moseyed to a café near hospital to do Italian language practice before my lesson with the fabulous C from Sardegna. I wandered back to Macmillan to a meeting with my therapist who helped me think about my recent test results, the meaning I was adding and my plans to up the ante on the work front. As usual she was a great help. My pink smoothie, a nutri-bulleted beetroot and green salad was yummy. My call with friend and coach M, was great. Even Chemo went smoothly. Or so I thought.
I got home and started feeling wretched. More wretched than I have in ages after a Chemo day. Even drinking water was difficult. Pain, everywhere. Nausea, constant. Stuck close to the bathroom. The Dom anti-nausea pill wasn’t doing its thing. Sweat, cold, sweat, cold. Aaargh. Why? Why today? This is sh*t. Will I function tomorrow? Hubby’s birthday is so important to me. He has even taken the day off work which is so rare. 10.15pm rolls around and Chemo you bit*h, you have me sitting on the couch, head in hands and between my knees.
Then it dawns on me. I didn’t receive my steroids today. Dexamethasone, I wasn’t given it and I was so busy watching Americans on Prime to distract me from any pain of the cannula going in, that I didn’t do my own checks. Bugger. Now what. Now, I’ll have to telephone the Haematology Registrar on-call and see if I can take my day 16 (tomorrow’s dose) of Dex now. It’s not a great time of day to be taking a steroid, they’ll keep me up all night…but hopefully I’ll feel better. Priority right now: feel better.
Then I realise. Pissed off. If I take the dose I have at home, I’m going to have to go to hospital tomorrow now, the very day I didn’t want to go and normally don’t have to go near it. And on your birthday, darling Man. I don’t know how long it will take, to pick up a steroid on a day I am not usually there. VERY PISSED OFF. My feeling wretched, my having a problem, my having to go into problem solving mode, my having to deal with the impact, accept the consequences, pissed off…it was all so preventable. Annoyed. Sad.
I ring the hospital, ask for the Haematology Reg on call. Operator says she‘ll page him and he’ll call me back very soon, often straight away. I wait. 40 minutes later, I’m still waiting. I’m so sick, I can’t get angry. Hubby calls. The operator is surprised I haven’t heard. She pages him again. He calls back in 5 minutes. No apologies, no explanations (e.g on another call). He runs through the usual questions – have a vomited? Not yet. Do I have a temperature? No, just the sweat, cold combo. Do I have diarreah or constipation? No. Just pain, a lot of pain and nausea that pills don’t kick. Finally, he confirmed I should take the Dex I have at home and go up to hospital for another dose tomorrow.
I take the steroids and Hubby manages to find another stronger anti-nausea tablet amongst my large array of pills in ‘the pill box’ (a large bread bin, works a treat). I cuddle up to Hubby, focus on his breathing and wait for drugs to kick in. By the time we move it’s 1am and despite the steroid, I feel like my body is now desperate for sleep. Good. Happy to oblige. I drag myself upstairs to bed.
Hubby’s birthday day. I feel a whole heap better but very drained. He drives me to hospital. I go to get my steroid and my fear about how the day may unfold starts to be realised. Cancer, you bit*ch, you don’t make life easy. My steroid isn’t ready. I don’t get to drop in, collect it and get out again (my hope). Despite having an email back from my specialist in the morning, acknowledging that a) my Chemo, carfilzomib is hard to tolerate without the steroid and b) containing his request that I be dispensed the steroid today, directly from the Chemo Day Unit (CDU) and c) that the clinical trial nurse should call the CDU nurses to make sure they have the steroid ready for 9.30am – it’s not ready. I even get there about 10.40am, figuring I’d give everyone a bit more time to communicate and prepare.
I explain again, what has happened. The CDU nurses won’t give me the steroid and when they call the Clinical trial nurse for information something is lost in translation so they now think they need a prescription before they can give me anything. I show them my box of Dex with the prescription and dose details AGAIN. I start to get upset. Really upset. I could be waiting for ages for the clinical trial nurse to come to the CDU with a prescription (I’ve been through this before so know how long it can take) and then if I must go to the regular hospital pharmacy for it to be filled, I can write off another hour, it is hideously inefficient.
Tears. Yep they’re coming. I cry. M the wonderful receptionist comes to comfort me and says ‘this is not like you’ and to find out what’s going on. I fleetingly wonder ‘what is like me, when I’m here?’ I feel bad because I know the team have had someone die today and one of the head nurses has had to race off and manage that. My tears over impacting my day with my hubby seem trivial in comparison and yet not, nothing is trivial in this Cancer journey. It’s all bearable for me most of the time, yet it is all sh*t too. I cry some more.
Nurse L comes to my rescue. She looked after me all last year and I missed her when she left to do a stint in private practice. She asks what is going on, I tell her, show her my empty box of Dex and say I just need my day 16 dose because I had to take it last night after not receiving the steroids yesterday. I don’t say which Nurse forgot to give me the steroid. Nurses are human. We all make mistakes. She is usually so so good so must have had an ‘off day’. AND, it was my mistake too. It’s not really fair to hand all responsibility and agency of my care over to a Nurse. After all, I bang on about being the agent in your own health and treatment for as long as you possibly can. Nurse L goes and gets the Dex dose immediately and finally I get to leave.
Thank you M and L. You saved my day. I know my Clinician plans to talk to the nurses about how the steroid was missed but I don’t worry about that now. I know mistakes happen yet between us, the Nurses and I are usually so good at going through a checklist each time. It’s a shame it went wrong.
On this day of all days.
Psychology Tips – Working with your and others’ mistakes
Admitting mistakes can be hard. Research shows there are links between our beliefs about whether we can change our behaviour or whether our personality is fixed and if mistakes and admitting mistakes are perceived threats.1 Cognitive Scientist, Art Markman summarised the research results2 and explains when you believe that your behaviour can change, you are more likely to be willing to admit responsibility. You recognise that by admitting what you have done wrong, you can work to make it better, to grow and so you are not threatened or are less threatened by admitting mistakes.
People who do not believe that they can change, can be stressed by admitting their mistakes, because they believe that those mistakes say something fundamental about who they are as a person. Understanding that people see their own mistakes as a threat, and have different beliefs about their own and possibly others’ ability to change, can help us to remember to avoid showing unhelpful frustration and anger when managing mistakes. We can all change our behaviour. We can all learn from our mistakes. We can all repair and improve relationships. It can take some people longer than others, to recognise that change and growth is possible, especially when their starting point is one of: I and others have fixed personalities and mistakes are flaws.
It’s easy to get frustrated with others’ mistakes when we feel something is unfair (it can be completely justified) but does it help the situation to show the frustration? A compassionate response will get you more powerful results and responding with anger and frustration negatively impacts loyalty3,4. In my case, I want the Nurses to like treating me. I want them to feel we are on the same team, to feel loyal, committed. Showing my frustration and upset was normal, human, yet unlikely to have been the optimal way to have managed the situation. Remembering that frustration, anger and stress raise heart rates, make it harder to think, mean that when recognising frustration, a good first step is to pause, be mindful, and then choose a more powerful response. One of clear communication, compassion, kindness, empathy, forgiveness. This is more likely to invoke compassion, kindness and loyalty in return.
Recognise too that anger, frustration and upset at mistakes of yours and others are often underpinned and exacerbated by worry and a catastrophising thinking style. I was worrying that my need to go to hospital on Hubby’s birthday day would ruin our day. Ruin his day. Eventually I managed to realise an unhelpful worry and thinking style was probably in play and ask myself, was my hospital visit really the worst thing in the world? Were my thoughts true, would our day really be ruined? How much time in our day did it take up really? Was it more likely that hubby was happy to help and had enjoyed his rare time alone, in a café, doing things he wanted to do, without having to be at work, while I was at hospital? Regaining perspective enabled me to let my frustration and upset go. An hour later I noticed I was laughing at something Hubby said and our day was going well. Yes, it meant we came home earlier than expected because I was really tired yet we relaxed together and the evening was a good one. I could easily have been very tired anyway. It’s not unusual for the day after Chemo.
1 Who accepts responsibility for their transgressions? Schumann, K and Dweck, CS. Who accepts responsibility for their transgressions? Pers Soc Psychol Bull. 2014 Dec;40(12):1598-610. doi: 10.1177/0146167214552789
2 Markman, A. (2014) What makes some of us own our mistakes and not others?
(2009) Witnessing excellence in action: the ‘other-praising’ emotions of elevation, gratitude, and admiration, The Journal of Positive Psychology, 4:2, 105-127
4 See Adam Grant, Psychologist and author of Give and take: A revolutionary approach to success. See also work by Emma Seppala, Center for Compassion and Altruism Research and Education.
Shadow and Dex pictures by Me
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Myeloma Treatment, Psychology for Cancer, Symptoms and Side Effects Tagged with: Cancer, Carfilzomib, Compassion, Consequences, Dexamethazone, Frustration, Mindfulness, Mistake, Mistakes, Myeloma, Nausea, Psychology, Sick, Steroids, Sweats, Tears, Worry
Hello Blog. I’ve missed you. I’ve been writing to you, in my head, a lot. There have been many opening paragraphs that have never made it to fingers and keyboard. Today is a beautiful day, helped along immeasurably by clear blue sky. Today is the day I put the last month to bed, put it into the past and leave it there, take out the learning points and not allow past negative events to colour my future.
I really wanted to say I haven’t forgotten you and provide a brief update…a reality check…
Health-wise. I have been good on the Myeloma presence front; it’s still low. I have been knocked for six coping with a compromised immune system. Two viruses back to back, an extended chemo/bronchial style cough, even worse sleep patterns (didn’t think this was possible) and fatigue, weakness and low motivation to do anything…these have left me reeling with a very low mood. I’ve felt like a patient, an invalid, more than ever before in the last three to four weeks. Especially when I end up in bed for days, need to avoid being on public transport and wear masks more often. Concentrating to write seemed like an impossibility. I’m here now.
Despite my low mood and fatigue, I managed to push ahead in small chunks with some of the ‘to do’ list. No wonder I’m overwhelmed. Have you ever felt like your ‘to do’ list doesn’t have any small, mundane admin items on it? Instead it is a long list of huge, life-impacting topics that all require maximum brain power, planning and the ability to make decisions – something that is very, very elusive if you are even slightly depressed.
My list has included (though not exclusively by any means);
Finance. How to finance the next few years, mortgages, budgets, investments, trying to find independent financial advisors, palliative care costs, home care costs…the list goes on).
Clinical Meetings. I’ve been chasing meetings with clinicians to get a fresh, up-to-date view of the realities or at least their best guess on what my next few years will look like; how mobile I’ll be, how much treatment will be needed, whether I can do, plan for, bother costing out, some of the life passion things that are important to me – travel adventures, skiing, swimming, road cycling. Securing these meetings has been a challenge and ongoing for weeks now (still unresolved) all because I want to see the original clinician I met and not my trial lead. Dr L is both a realist and optimist. We have worked together for months now. It feels intensely important to hear up-to-date details from someone else, so that it lands in my head with clarity, so that Hubby and I can be exactly on the same page. This is why I am trying to secure a meeting with Dr B. He was the one who was honest about worst case scenarios, the very real lesions in my spine and possible paralysis if treatment was not started. I need to hear it again; where I am and where I’m not, what I must do. I need pointers on how to live. Do I maximise the next two years assuming they are my best or plan pensions and assume I’ll live a lot longer and with mobility? Therefore, what will I need to finance? I know Dr B will find this tough – I’m under 50 after all. I really need his help with this.
Work. How to work, earn income, contribute, have energy to work. Figuring out how much I can work, what work should look like so that I can strike a balance between treatment, time for doing things that are healthy, fun and will give best chance of prolonging life expectancy and support good quality of life.
Academia (My Legacy?). I worked on my first paper and was rejected for the second time by one journal. I’m now working out how to revise and resubmit to another journal, getting ready for the all so common rejection again while visualising acceptance. I’m also working on a second paper, one a senior academic in my viva encouraged me to publish.
Nutrition. I lost too much weight. I had to stop my super careful eating. I tried to reintroduce dairy. I felt worse. I stopped the dairy. I couldn’t get enough calories in without eating constantly which is impossible if you want to do anything else in life! I reintroduced the odd treat (good quality bacon and cake once, twice per week). I felt better and worse. I was advised to put on lean muscle and get my weight up. My weight is up to 63.8kg. I feel good that my weight is up and bad that I’ve introduced things that welcome cancer into my terrain again. I feel unable to control things. I have no appetite and then I’m ravenous. I find it hard to do food balance. I want it to be healthy all the way or…I can’t entertain, the ‘not at all’ option, it feels irresponsible. My nutritionist has recommended a medical protein powder, not high in calories but specifically designed to help create lean muscle for people losing weight due to illness. I try to order it. The site won’t let me. I contact them. They don’t get back to me. I cry with frustration. I finally ask the Nutritionist to sort it out. She does. I haven’t had the energy to try again. I will, this week. I need to feel back in control. I miss enjoying food, I used to love it.
Last and by no means least, Parents and Friends. Spending quality time with Mum and Dad; how to do that, when to do that, how to have the energy and good mood for that. Ensuring we don’t feel like flatmates co-existing under the same roof and make sure we make the most of the time we have together – how?. Sounds easy but it’s not. A great, precious, long, hard-to-adjust-to five months (not sure how that happened… and I laugh that Mum and I laugh about that now). Yet as it spins into the last half of their stay, it is quickly feeling like I’ll look back and it will have gone quickly…
Chemo. This crazy, demanding to do list is all with a backdrop of six days of Chemo, recovery days where I have felt worse than on Chemo days, many many days when I have just wanted to hide under the duvet with the cat for company and stay there for weeks.
Low mood. I’m in it. Up to my eyeballs. Depressed. I’ve been resisting it. Resisting acknowledging it but I’m there now. I feel demands on me everywhere, a sure sign of low mood and overwhelm for me. A weekend away with hubby last weekend, staying at a very generous friend’s home near the sea, culminated in a roller coaster ride and frequent mishaps. From misread maps, and ten minute walks turning into a 40-minute wait in the rain and taxi, to random laughs (singing Delilah with a bunch of strangers in a gorgeous restaurant with fabulous view), deep tonic breaths of sea air, cocktails and a feast, before spending Sunday crying uncontrollably (on the train, at a restaurant, in a cab, just standing, sitting, in the shower, trying to put makeup on; I gave up, behind my mask, walking in the street, everywhere, leaking.) I’ve been so withdrawn. Haven’t wanted to be around anyone except hubby. And have not been a fun person to be with when we have been together. Trying to be practical, talk about future, plan, create with him; this just exacerbated difference in wants, needs, timeframes and how difficult these discussions are. Overwhelm took residence. Overwhelmed. I landed. Here. Rock bottom. Time to acknowledge my situation even more than I have already. I have cancer. Its terminal. It’s Sh*t. It has turned my life upside down. It’s created extreme intensity across all areas of my life. It’s ok to be overwhelmed. It’s likely to happen many times over the next few years and I’ll be alright.
Off track. All the things that help overcome and prevent low mood have fallen off. I’ve fallen off the track. It’s time to get back on now. This low mood feeling won’t disappear overnight. I do know what to do. Start small, just start. Compassion. Compassion. Compassion. Work on basics; begin exercising again, for 5 minutes, an hour, then a few times per week. It doesn’t have to be all at once. The mindfulness and meditation have slipped to once per week. Get it back to daily. It can be five minutes, 10 minutes and eventually longer. Put a good sleep routine back in place, get up at the same time, get rid of the mobile from the bedroom, breathe, use progressive muscle relaxation. Order the protein drink. Get some good music back into my life; it’s been missing. Look for the positives.
Today is a good day. There is a blue sky. I’ve just been to the gym. I’m doing fine. To coin the essence of a phrase my fab friends use on their date nights and that they wisely borrowed from Julia Roberts… If I forget to tell you later, I had a great time today.
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
So now you show up. Its 3.30am. I’ve only had three and half hours sleep and now you have woken me. Why now Pain? Where were you before? Where were you when I was meant to have known you, during this stage one of illness that I seemed to have skipped? Are you Myeloma pain or chemo pain? Or universe forbid, something else pain? and sheesh, why butt pain? Is that your sense of humour? If it is, you are not very funny. Especially when my heat pack doesn’t stretch that far!
Though….now that I think about it. Thank you. Thanks for not showing up too much in the past. Yes, I’ve been in and out of physio so much that it had begun to feel like a second home. Friends sitting behind me in lectures were probably sick of my constant fidgeting and neck stretching. Yet in the scheme of things, I haven’t been in much pain at all over the years. I’m grateful for that. You haven’t stopped me doing the things I love. Until now. I love sleep and would like some more please!!!
Interesting that you show up tonight when I’m also fasting for a glucose test in the morning so am probably unable to take anything for the pain. Why is that? Having been so kind in the past, are you now going to make up for it? Will you get worse? Will you always be here? You do like to scare people. Scare me.
Do you fancy some mindfulness? I think you do. I think you need some deep, slow, compassionate and kind breaths, deep into the heart of you so that is what you are going to get. Take care Pain. I suspect you and may have to become firm friends before I send you on your merry way. Know this though. Good friends are soul food. They’re uplifting, inspiring, funny and kind so if you want to hang around for any length of time, you have to join that club. There is no room for draining and negativity here. Come on then. Let’s breath together and see what we can discover about ourselves. You, me and breath. Right here. Right now.
Illustrations: Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.