Why even ask that question?

The not being able to answer it part, came in the context of a friend clearly doing everything (literally everything – she’s amazing) she can to support me as I navigate this diagnosis. [Over]Thinking what she can do to be there for me. And she’s not the only one*, I’m extremely lucky to have many people around me (near and far) that try to support me. However, it’s (i.e., me) a bit of a minefield. I definitely don’t make it easy for people. And here is where the question came to me – what do I want? How do I want to be supported with this? And now, insert a gif with crickets chirping or a hay bale blowing in the wind – whatever it is that shows that I’m blank – at a loss at how to answer that question.

*Though she may be one of the only ones that overthinks it (and how lucky I am that I have a friend that does that for me)

So when this happened a few weeks back, I noted it down as something I should write about. Hoping that trying to process this question and why I don’t know might just help me work out what I do actually want. Two things come to mind immediately, 1. that maybe I do know but it changes almost on a daily (hourly) basis, so maybe that’s why it’s hard to articulate; and, 2. I only vaguely know but struggle to believe that I deserve to put myself first in the line of wants/needs, so find it hard to articulate or identify what I want (largely from a fear of appearing selfish).

On the second point, a more psychologically advanced person than I would likely identify a couple of key issues here, I will just acknowledge that while I’m not psychologically advanced, these are things that I’m working on. I.e., sitting here now, writing and trying to articulate what I want and that this in itself is addressing point 2. So I’ll focus on point 1 and even though it might be hard to articulate because it changes, maybe this is key to understanding what I want. To do this though, I do need to narrow the question slightly (yes, it has taken me until this paragraph to narrow the scope of what I’m writing about).

What is the actual question again?

As someone with metastatic breast cancer, how do I want those around me to support me?

The “don’t want” is a bit easier

As I started to think about this, it was much easier to come up with things that I don’t want. So I’m going to start there and then try to better identify what I do want.

I think there are the obvious answers – one liners – that are relatively easy to identify. I don’t want miracle cures thrust in my face and I don’t really want to be told about your uncle’s best friend who had incurable cancer and was cured (don’t get me wrong, I’m super happy for that person). I don’t need to be reminded that there are so many people in a worse-off situation or that anyone could be hit by a bus and die tomorrow – I know that and it’s a constant thought I already have and that pressure on myself to always be grateful or downplay what I’m going through doesn’t really help me. I don’t want or need you to tell me that I will be okay or that I will be cured (because of your faith, that I’m strong and can fight this or because of the aforementioned friend of your uncle).

The harder “don’t wants”

Then come some of the “don’t want” that are a bit harder to articulate. I don’t want you to try and relate to me (or my treatment side effects) with your own temporary ails. I’m not saying not to tell me when you are sick (whether it’s a cold or something more sinister) or when you might have a sore body part – please do. So adding in, don’t downplay your own health issues because it doesn’t compare to cancer. Being sick sucks – and I want to and can be a friend, I can commiserate with you and even get you some food or medication (whatever you need). It’s more the sharing in response to a complaint from me about a side effect of treatment as a way to relate to what I’m going through – that I struggle with because (in the absence of you taking the same medication as me or having some other life-limiting disease or chronic illness) it’s not you relating to me, it can feel a little more like you are downplaying or undermining what I’m going through (which is really hard to say and I really am fighting the urge not to end this paragraph with a “sorry”…).

I also don’t want you to try and fix me (unless you are my oncologist, my psychologist or I specifically ask to be fixed and then, well, good luck). I know giving advice and solutions – or just filling the gap – are part of who we are but I have a long list of things that I know I should be trying to do (or trying not to do…). I have prioritized some and am doing the best I can within the mental/physical space that I have. I acknowledge that I don’t know everything and that there could be something you know that could really help me (and here I’m talking outside of eating magical *insert food/plant* to cure cancer) but often in the moment, I don’t need that fix. On this one though, I think there’s an easier solution – a few days later (or some weeks), a link in a chat with a oh this reminded me of the conversation we were having about xyz could be more palatable*!

*not saying I’ll read it but it gives me the choice to take the advice.

Then there are some “don’t want” which are a bit contradictory. I don’t want you to not share what you are going through – big or small – because you think I “have enough to deal with”. Then the friendship is just one-sided and as a friend, I want to be there for the big and small things. But, ooh and it’s hard to write, sometimes I might not be able to be as present and as understanding as you need. As hard as it is to admit, sometimes I just do have enough to deal with and I am just not in the right headspace to listen or sympathise. And then on the other hand, sometimes I have too much to deal with and want to hear about the drama in your life because it’s a really welcome break from some of the heavier things in life. See the contradictions are abound in this paragraph.

And the big one, essentially, I really don’t want you to make everything about me having cancer but at the same time, why is not everything about the fact that I have cancer? Sometimes out of nowhere, I will get really annoyed when it’s not all about me and the fact that I have cancer. Yes, it’s irrational and I definitely don’t always predict when these moments are coming. My only defence is that this is something I’m living with and it is constantly there in my life. I don’t want cancer to be part of who I am – it does not define me – but it is part of my life and will forever impact (sometimes in big ways, sometimes in small ways) how I go forward. I think how to address this is key to working out what I want.

Finally, what I want.

Acknowledge its existence. I’m at risk of becoming repetitive now but I really don’t think I can stress it enough – the cancer is always there. It is constantly impacting on my thoughts, my feelings, what I say, what I don’t say, what I do, what I don’t do and then the guilt for doing some of the things that I do do. I remember a friend – a cancer survivor – explaining to me that his friends once told him that they were too scared to bring it up in conversation because they didn’t want to remind him of the cancer. We both laughed – as if we need the reminder – it is a constant presence. Everything that I’m experiencing now is on top of a bandwidth that is relatively full with cancer-related thoughts (not to mention the bandwidth being reduced – thanks surgically-induced menopause). My capacity to manage things patiently, logically, with a level-head and with a smile is severely impacted (let’s not open the discussion on how high or low the bar was before).

I don’t need you to say “and you have cancer” at the end of ever sentence. I also definitely don’t need you to congratulate me or commend me for dealing well with something in spite of cancer (really, please don’t do that – I should add that to the list above of “don’t want” [I won’t because – here we are with another contradiction – while I don’t really think it’s warranted, it is nice sometimes to get a reminder that I’m doing okay – argh, just the thought of it though makes me feel horribly uncomfortable]). But every so often, acknowledging that its still a presence around, underneath, on-top-of whatever else is going on* is meaningful to me. I will very very likely brush the comment off and say “oh it’s fine, I do what I have to do” but know that the acknowledgement means a lot to me and is appreciated. It helps me remind my own inner voice that it’s a lot and to be a bit kinder to myself when the impatience shows through.

*It’s as simple as saying, “also on top of the cancer shit, it’s a lot”.

Part of acknowledging its existence also relates to some of the “don’t want” points above – in particular the point about telling me what’s going on in your life but knowing when it might not be the right time. I think some people can probably sense it but I think simply asking “is now a good time?” can do wonders. Its a mutual acknowledgement that it’s possible that I don’t have the bandwidth available and gives me space to say what I can and cannot handle in that moment. To clarify though, when shit is real shit – do not ask – tell me you need my support, I’ll rally!

Create the space for me to talk about it. I have struggled with feeling like a burden on/with my friends and over the past year (likely longer) have shut down considerably (I wrote a whole post about it). I quite sure some of the irrational bursts of frustration I wrote about earlier (around not everything being about me and the cancer) comes from the fact that I don’t talk about it. I have spoken to different friends about this and they have all assured me that I’m not a burden and they are willing listeners to me talking about it – even if it is just repeating the same things over and over. I’m sure my friends are telling me the truth but it does not necessarily open the space for me to talk because sometimes I don’t even know what I want to say. Somethings I just can’t find the words for  – verbal or written.

My awesome friend that I referenced earlier wrote that maybe she needs to be brave enough to also sometimes ask about things that seem important even if they are hard. And I haven’t found a better way to say that this is what I want or need. I don’t need you to say I’m here if you want to talk or to ask me if I want to talk about having cancer. Because yes but also no. I want you to ask me some of the hard questions and be ready for me to say, no I don’t want to answer that now (and then be willing to ask me again another time) or, more scarily, allow me to answer it. What are some of those questions? Another great question – I think there are so many that I haven’t even thought of yet – get creative!*

*But if you really want some inspiration: Do you think about other treatment after this treatment stops working? Where are you with thinking about what you’ll leave behind for the kids? Are you still grappling with finding meaning from the diagnosis? What do you want to be remembered for? Where do you want to be in five years? Are you scared of dying? What’s the worst thing since being diagnosed? Do you see any positives from the diagnosis?

Allow the dark clouds (even if there are silver linings are so damn obvious, they don’t always need to be there). I don’t think there’s much more to say here. One of the better questions (should have added it to the list above) I got once was what are the top 5 things you are most ungrateful for since the diagnosis. No silver linings allowed, no expectations to also identify the things that I was grateful for. It is so important. Yes, there are often silver linings but there’s also a need to just say this is shit.

Remember that I’m still me (just with a few of the above caveats). I’m still me, yes all of the things I’ve written above change certain things but at the core of it, I’m still me – don’t do anything differently. I want that same friendship that existed pre-cancer – I think that is the most supportive thing I could ask for. Don’t over-the-top with the ‘cancer’ support, just be you. Say or do the thing that might be hugely inappropriate to say or do to someone else with cancer – but it’s me and hopefully we can laugh about it. Also allow me some grace. Sometimes, I will not be as present as I used to be or want to be. Sometimes, I do just need to hermit (or wallow in self-pity – same, same but different). I will never be able to adequately put to words all that I feel and am experiencing and the only one that really understands that is me (not always well but here we are) and know that I’m not asking or expecting or wanting anyone else to understand it. Allow me this and these small changes but also call me on that shit when it goes too far.