It happened again today. Someone said the wrong thing. They didn’t mean to. They just didn’t seem to think. In that moment, it seemed that it was important for them to say what they wanted to say, so they said it. Important to them, not me; about them, not me.
I’m sure they didn’t mean to have their words upset me. But they did. A nurse started telling me HER chemo story, uninvited. Maybe she thought I wanted to hear it, after all she went through ‘hers’ seven years ago and she’s still here; that’s something I’d want to hear, right? Wrong. I didn’t want to hear it. I very rarely want to hear others’ stories.
I didn’t want to hear it this morning when I was running later than usual and really looking forward to a much overdue call with one of my best friends, someone who always makes me feel great, even when we have talked through sad stuff or tough stuff or vented or cried together. I didn’t want to hear someone else’s story when I hadn’t asked to know. The nurse looked at me, waiting expectedly for me to ask more about it. I just wanted her to get on with taking my blood so I could get out there and make my call. She looked again. Today, I had no energy to ‘hold her off’ so I obliged. I smiled and she launched in with more detail and things I didn’t really hear, other than the ‘good luck’ at the end. Another thing I don’t always want to hear.
I couldn’t get out of there fast enough. On top of that the needle had hurt this morning; maybe because she was so focussed on offloading her story instead of taking my blood? She didn’t know how her words landed, she probably thought she was doing me a favour and on another day, maybe I would have wanted to hear her and chat away. How could she know?
I’m scared to write this blog. I think it might be taken the wrong way. Friends, family, blog readers might stop being in touch or think I’m ungrateful for all the contact, well wishes and kindness they have provided to me. Nothing could be farther from the truth. I am so grateful. I’m deeply astonished at the amazing volume, regularity and quality of support, I have received. Although, it hasn’t always been easy to receive it. I have often felt overwhelmed, sometimes smothered and obligated to respond.
There, I said it. Gosh it is hard to say in my head, let alone see it in black and white. I feel instantly guilty…and yet, honest. When I started this blog journey, I said I aimed to be real with it and share good, bad, up, down, times. I almost didn’t do that with these feelings as they feel so controversial, so risky, potentially hurtful; the last thing I want to be, ever.
I feel very vulnerable. What if you don’t understand? What if I describe how I have felt at certain times and I lose you; the very people, the very support, that has helped me get this far, that has helped me to feel loved and never alone. What do I do if after reading this, you don’t reach out again? Or don’t want to? Or think of me differently? Or want to reach out and are left not knowing if you should, or what to say?
I do hope you read to the end of this post. I do hope you understand.
Please believe me when I say I am not talking about any one person; I’m not. I’m trying to share the cumulative impact of these interactions and understand my own response to them. I’m trying to share the overall feelings, curious, conflicted, visceral and confusing reactions I have experienced, when people have been in touch, shown they care, tried to help and asked ‘How are you?’.
How are you?
Ahh, those three little words…’How are you?’. Now that I have cancer, the words, the question, feel so loaded, so complicated, with no easy answer. Being asked ‘How are you?’ isn’t helpful to me. Not right now anyway.
How on earth could you know that? It’s not your fault that you have asked me, many times, that very question; it’s a natural question to ask. You couldn’t know, that I am only now observing my reaction to the words, reflecting and working out for myself, that these three words are some of the most unhelpful to hear. Today, I was reminded that my experience and feelings about this, are not unique. Surveys show one of the things people living with cancer find unhelpful is people asking, ‘How are you?’.
One of the reasons I set up the blog, is so I didn’t have to say the same thing, give the same update, say the same answer to the question ‘How are you?’ to everyone who was kind enough to whatsapp, call, message, facebook, email. I hoped people might head to the blog, get a feel for how I was doing and leave a short comment if they wanted to. In that way, they would let me know what they thought of the blog or let me know they were thinking of me.
This wasn’t fair. It wasn’t fair on you. My hope, expectation, request doesn’t reflect human nature. Everyone has different ways they prefer to do things, different ways of communicating, connecting, showing love, showing kindness. It’s natural to do things your way. It is also fine for me to try and figure out, how, I can make that work for me too.
Friends, family, strangers, clinicians, all say the ‘wrong’ thing, quite often. You don’t mean to. Most of the time I’m convinced people are well intentioned or at the very least trying to manage their discomfort in the best way they can in the moment. I also know, I have done the very same thing; been well intentioned but said something to someone or offered unsolicited advice that they may have found unhelpful, inappropriate or ignorant. When it has happened to me in the past, such as during an IVF journey, it used to make me angry. Now I’m living with Myeloma, when people say the wrong thing, anger is only one reaction amongst a range of reactions, and the whole communication situation – well, it’s weird.
Sometimes it is easy to let comments, questions and advice go. Other times, most times, communication is fraught. I want to scream; ‘not every cancer is the same’, ‘no one person’s treatment and side effects and best decisions for them are the same’, ‘No, I’m still doing chemo’, ‘ I don’t want to give you a low down on my treatment cycle in the middle of the street or maybe ever’, ‘Read my blog!’. Please don’t tell me about the person you know who has the same cancer as me and who is ‘still going after 20 years’ (I’ve been told by the people who know, clinicians and studies, that I have considerably fewer years left in my life so how is hearing that, going to help me? And my diagnosis came at stage two, was the person you are speaking about diagnosed at stage 1 or pre-stage 1, with smouldering Myeloma? How is that like me? Oh, you don’t know? Then how do you know it is even remotely relevant or interesting to me?
Please ‘don’t tell me you were speaking to a friend and their cousin has Myeloma and you can get me their number if I want’, In fact, please don’t even hint you’ve been talking about me with someone else (because that feels creepy) even though, I get this too, is a natural thing to do….and unless we are in the middle of a discussion and are talking about nutrition and supplements, or even then, please don’t suggest the next fad in ‘cancer cures’ (I’ve done my due diligence and made my choices).
Please don’t say, ‘it’s not your time’. As much as I’d like to believe it too, hearing it makes me feel very strange. On one hand, I want to agree and step into that idea, after all I have already said previously, I was sitting with the idea that my specific Cancer would become a chronic illness rather than terminal in my life time. On the other hand, I get washed with anger and want to say ‘wake up’, ‘get real’, ‘if you can’t accept it, how do you think I feel? How do you think I’ll ever accept it?’ Or ‘I’m accepting it, why can’t you?’
I just wonder what it would be like if a good friend instead said to me, ‘sh@t, x years, that’s a real nasty one, do you fancy talking through how you going to spend those years? What the years will involve treatment wise, how much time that will take up (that you know about now) and what you might want to do when you are not at hospital or having treatment? Do you want some help to work that out? and…’I know you might not know right now or have the energy to think about it but please when you can, say how I can help make the years the best they can be’. This would be helpful, I think. I won’t know until it happens. What I do know is that the conversations I have had, along these lines, with these questions, felt; useful, helpful, hopeful and realistic. Thank you.
I read this back and I fear I sound petty. Does it? The feelings are real, I can’t stop them. Like thoughts, they just show up. What do I do with them? For a short time, I felt less conflicted, less weird, when I realised my feelings are experienced by other people with cancer. Macmillan is working on a media project which will look at the social experiences of people affected by cancer and recently asked, ‘What they are tired of hearing about cancer?’ A flood of responses poured in and were so achingly honest. I was surprised at how many people felt like I did and how many also felt conflicted by their feelings. My heart poured out for them because I ‘got it’; then I remembered I was one of them. My heart pours out for me too….and then it retreats, curls up in a corner, getting ready for whatever comes next.
I’m going to say it again, in case you have forgotten: I love that some of you are taking an interest in Myeloma and taking the time to find out more about it. I don’t expect everyone to do that. I am so grateful for the good intention when people say things or get me a number or offer advice. I am grateful for people wanting me to feel there is hope, that there are things out there that may help me feel better, wanting me to hear of others’ good fortune and hope that I experience the same. I am grateful. However, my gratitude seems to get overshadowed by other experiences; anger, irritation, desperation for quiet, peace, no demands, no messages that require an answer and these are followed by guilt, confusion, being scared. I don’t know what to ask of you, regarding communication. I know my need might change day to day and what is unhelpful in one moment, might be what I crave the next week. I’m scared to feel alone; I risk pushing you away by writing this post.
About me or about you?
Life has been so socially busy since my diagnosis, I have had to laugh. Why wasn’t I going out, meeting up, going away on breaks with friends as much before all of this happened? Why now? Is it because I want to ‘pack in time’ with the great people in my life? ‘Grab it while I can’ and in case, I become so ill that I can’t see my friends? Well yes, that’s part of it though only a small part as I’m not initiating many of the social arrangements at this stage. Do people need a fix of me? Surely not; I’m not that interesting! (I’m not fishing for a compliment here). Do they need to check and see for themselves that I really am OK right now? Do they simply want to show they are there for me? Or do they want to check in with Si, see that he is doing OK, for themselves, and because I asked them to, in the beginning, when all this crazy cancer-ness began.
Or…is the contact all about you? Is it you, the gorgeously caring soul who wants to do the right thing? Or be seen to do the right thing? Or to do, what you think you might like done, if roles were reversed, if you had cancer?. Being vulnerable again and at the risk of losing you, I am going to say that sometimes it feels demanding; “When can we next meet up?”; “Do you want to go away for the weekend?”; “Do you want to go abroad with us?”; “What can I make you?”; “Can I get you something?” Yes, I do want to go abroad, but I can’t fly right now; Yes, I do want to meet up though I have seen you twice in the last month and I need to see others too. I have smaller windows of non-hospital, non-chemo recovery time and less energy than I used to have right now. When I do have time and energy, I want to see all my good friends and family. If I see you, you my good friend, again, who do I not see, and when do I rest?
Or is it conflicting and demanding for me, because I never want to say ‘No’? In case next month, I’m not well enough to be social. I say ‘Yes’ and then get irritated that I can’t find time to rest. In an earlier post, I recommended being social while you can, as connection is good for the soul. I may need to revise this recommendation as not all socialising is helpful, inspiring or a good thing: sometimes choosing rest, quiet, alone time is important too. Also, I don’t want to miss out on experiences, so if you suggest a meet up (in the UK) to go and do something new or go somewhere new to do something fun, then I would love to say ‘Yes’. Rather than demanding, right now those suggestions seem to land differently; they feel nourishing, a chance to maximise quality of life.
What is helpful?
What is helpful communication wise? I’m not exactly sure yet. I think being in touch (please don’t stop being in touch!) but let me know how YOU are doing…rather than asking about me. I am having to focus so much on myself right now, my health, my hospital appointments, my food intake, water intake, my mental health, on an hour to hour basis, that it is so so so lovely to hear YOUR news, even a snippet, an up, a down, both or simply letting me know a ‘is what it is’ in your life, is great.
So…here’s another question / dilemma that has been whizzing around in my head, ‘ What level of selfishness is acceptable in a person living with cancer?’. Is it a different level for those living without cancer, major illness, other major challenge? How much selfishness is the right amount? How selfish am I allowed to be? What is my selfishness allowed to look like? Is it selfish, to want a fair amount of space, alone time, no sadness from others, people to be decisive and direct, to not have my time wasted (remember, its short and precious)?
Is it selfish to not answer messages that have questions in them, any question, and particularly ‘how are you?’ because it feels like a demand, something someone needs from me. Is this whole post selfish? Am I a selfish person? Have I always been selfish? Is selfish different from self-focussed? Is it ok for me to be self-focussed right now? What is that allowed to look like? What is acceptable? Should I care? Yes. I’d stop being me, if I stopped caring what impact I was having on others. Whizzing around……
There are helpful psychology theories and practices that I can apply to help myself with this. I’m not ready to do that right now. Readiness is crucial in psychology. Seeking help is often a first sign of readiness, though even then, someone can still need time to become ready to explore difficult feelings or be willing to make changes in line with their goals. I haven’t sought help from myself yet. As I consider it now, briefly, two main ideas cross my mind; compassion for me – my feelings are normal and valid and, no-one can ‘make’ me feel a certain way. When I hear something unhelpful, I may react with a range of feeling and thoughts. I still have control; I can still choose what I focus on, choose my lasting reaction and choose how my day is impacted by what I hear. More about this in another post. I’m still ‘in the experience’ right now and not quite ready to seek help.
I’m strong and I’m not.
I’m working out what is helpful and unhelpful. I don’t expect you to know. Its ok to ask.
I need space. I still need you.
I’m scared how you will feel when you read this post but I can’t control your feelings and how you choose to react; they’re your feelings, your choices.
I do hope you choose to stay in touch.
Resources that might help you to know what people with cancer find helpful and unhelpful
BBC: Things not to say to someone with cancer. A great little video. http://bbc.in/2kK4Wst
Si, A, S and J who encourage me to be me every step of the way.
Image (sleeping me): B
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.