Hi peeps. Sorry for radio silence but I’ve been taking a wee break. I’m just gearing up for The Last Chemo tomorrow, baking cupcakes for the nurses and getting my head prepared for feeling crap for the next week. I’m counting the ‘Lasts’ of every step, so today was the last preparatory blood test to check my cells are recovered enough to carpet bomb for the ‘Last’ time. Anyway I have been remiss in not posting this lovely bit of writing that Kat did earlier on being a carer. Here it is now just in time for the ‘Last’ chemo..
The first rule of Carers’ Club
As I was with Heidi during her second round of chemotherapy, she asked me to write something about being a carer. Guest posting on a blog where Heidi has been so eloquent, insightful, and informative about what she is going through, at first all I could come up with was this:
- The first rule of Carers’ Club is do not infect Heidi.
- The second rule of Carers’ Club is Do Not Infect Heidi.
- The third rule of Carers’ Club is DO NOT INFECT HEIDI.
While this is indeed essential advice(!) however, a lot of the issues that came up were not practical as much as emotional. So here’s what I learned from Carers’ Club, many of them I can tell you about only because I often get them wrong myself.
We’ll almost certainly say the wrong thing at some point.
I know I did. But that worry shouldn’t stop us from trying. We can always let ourselves be given feedback. Friends can withdraw from cancer sufferers because of that fear of saying the wrong thing. The worst thing of all, however, is to stop communicating due to that fear.
And in any case, probably the most important thing is not what we say but how we listen. Which is always far harder than it seems, considering all we really need to do it is a pair of ears and a beating heart.
The Ring Theory of Kvetching
Related to point one: there’s something called the Ring theory of Kvetching (ie complaining / emotional venting). I’m sure you’re all too lovely to need to be told this, but it’s a useful concept and as the author points out, at some point in our lives we’ll all get to be the one at the centre of the Circle! The article is worth reading in its entirety but the brief version is: the ill person is the one inside the Circle of Kvetching and she can kvetch all she wants. Then outside this are layers of concentric rings, going from people closest to the issue or trauma, to those farthest away, eg the 2nd layer is the partner and child/ren, the 3rd close relatives, the 4th is friends, and so forth. So the basic rule is this: you can only kvetch to people in a circle layer outside your own, never inwards. Comfort in, dump out.
The Importance of Kvetching / or Take care of yourself.
That said, seeing our friend going through something like this is upsetting and we need to know it’s ok to feel our Feelings, and share them too, as long as we are not dumping ‘in’ (see above).
The occasional rest is also ok. Caregivers can neglect their own needs, which is understandable in an urgent situation but over the long term is not sustainable. A burnt out carer is not a very helpful carer – especially if in wanting to help out we promise more than we can really deliver and then have to disappear from the situation abruptly when someone is counting on us.
Also Heidi being super smart with an emotionally intelligent spider-sense will spot self-neglect straight away and worry. And we don’t want to give her anything extra to worry about, do we?!
Simply to say that being there and seeing the situation in the flesh was far more easy to deal with than imagining it from afar.
Also, I really believe there is a grace and real strength in being able to ask for help that grows a person rather than, as many think, diminishing them. Heidi seems have known that instinctively when she got ill. And in the same vein there is feeling of connectedness and interdependence in giving it. It may sound odd to say but it was a really meaningful time.
Often when I felt helpless I wanted to problem solve.
Finding that fine balance between wanting to help, without going into problem solving mode in an overbearing way, is a tricky one (especially for me!)
That incredible cure for cancer going round on facebook probably isn’t.
Related to the above, if you have heard of an incredible new cure for cancer, please check the sources, and look for scientific evidence. It can be tiring to be bombarded with this stuff. Adam and Heidi are pretty rigorous and have already done extensive research; having said that there are things they’ve asked for help with researching, it’s worth checking in on this.
The incredible relief of being able to empty Heidi’s bin.
This relates to how we all want to help and what a relief it when you are able to do some tiny little practical thing. I know it isn’t about me (see Ring Theory of Kvetching) but helping in a practical way made me feel so, so much better, however tiny in the scheme of things.
I can’t cure cancer, but by God I can empty the hell out of Heidi’s bin. 😉
Finally, there probably are some key practical things it is good to know, in the vein of ‘Do Not Infect Heidi’. Heidi’s mum typed up a list of tips for carers, if you’re coming to stay you could ask for it. Here though are some key points:
- Unfortunately, if you have a virus or been in close contact with someone who does, please don’t visit or send food, as Heidi’s immune system is seriously compromised during her chemotherapy cycles.
- Other than that above situation, I believe vegan food would be rather welcome? Probably if your visiting generally think about offering practical help. Use antibacterial and antiviral hand gel when visiting.
- Keep the house – surfaces and floors – disinfected.
- Double check on the drugs – the nurses give you a printed out table – as it’s best to be safe even if you feel like a bossy boots.
- The best things you can do are the most practical eg washing up, cleaning the bathroom, cooking something from the Cancer cookbook, playing a game with Lilah, picking up stuff from the pharmacy, doing the laundry. I have never been so happy to do household chores! Mopping is love in action.