HOW TO HELP
A CANCER WARRIOR
When Al was diagnosed, we saw an amazing counsellor on a regular basis. Having an expert to help us with our feelings & fears was crucial. We found we talked a-lot about well-meaning people who were trying to help but weren't.
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As we navigated our way through the cancer whirlpool our counsellor suggested we write a letter of Do's & Don’ts for family & friends with tips on what would actually be helpful for us. It was a lightbulb moment!
Here I aim to share a bit of that here to offer a little advice on how to be an amazing friend to a cancer warrior & their loved ones.
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It's horrific watching someone you love or care about going through cancer, but that doesn't mean you have to act differently, be someone else or say the wrong thing unintentionally. Just be you, take a deep breath, listen, don't judge & learn to say "what can I do to help" or simply "I don't know what to say."
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We have had some absolutely bonkers things said to us & we have also some of the most heart-warming experiences from truly incredible people along the way too.
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The truth is most people just don't know what to say, what to do & nervousness takes over spraying verbal diarrhoea out uncontrollably. You watch them & you know they are thinking to themselves ‘stop, stop, stop!’ but they just can't.
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Here are a few things (as we say in New Zealand)
"that stuck out like dog's balls"
"Hey don't worry they will find a cure"
"My sister had breast cancer & she is absolutely fine now"
"I think you should try cannabis, I have read it cures cancer"
I watch these car crash conversations in silence thinking, "oh no, here we go again," knowing it will be me picking up the pieces later, while Al calmly explains our situation, matter of factly.
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One of the hardest comments I struggle with currently is
"You must be in the all clear by now are you not?"
Never assume anything when it comes to cancer!
Not all cancers can be fixed or cured & many people have to learn to live day to day with this shitty disease. By saying "you must be in the all clear by now?" adds extra pressure to the warrior & can make them feel like a failure, or just waste more of their energy trying to explain the prognosis.
Ask open questions like "how are things going for you at the moment?"
Any way enough of my lecturing & ranting. Here is my/our top tips of what to say/do that actually helps as well as what not to.
HOW TO BE A LEGEND
(things we have found really helpful)
I refer to Al as the warrior, he isn't keen on being called a warrior, he prefers me calling him a stubborn old goat but that doesn't read as well & in my eyes he is a warrior!
1.
Make a meal that can be frozen or reheated without the pressure of joining them...
Why it's good for the warrior:
Not only will they be physically exhausted but they will be mentally exhausted too. Sitting trying to eat with you may not be ideal when they are tired, maybe feeling nauseous or suffering from lack of appetite. They will feel pressured to show appreciation by forcing food in that they may not be ready for.
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Basically they will feel loved by your efforts & appreciate the space to graze when ready though.
How it helps the carer:
The person who often gets forgotten about is the carer. Often they are too stressed to eat, too tired to cook (especially if their partner is in hospital). Keep it super simple, make something they can just reheat or stick in the oven.
The memory:
Coming home to find a cottage pie from Jen in the fridge after a full days treatment made the day so much less brutal.
After driving Al home from Edinburgh after his first stem cell transplant, we got in the door to find a note from Queenie to say there was fresh milk in the fridge & some bread to get us going.
2.
Ask what you can do to help...
Why it's good for the warrior:
They may not have the answer straight away, so check in again once they have had time to think. Don't offer once & give up, remember the warrior is having to face being vulnerable for potentially the first time in their life.
They will remember your offers & feel ok to ask you later on if they need something. Just remind them occasionally you are there to help.
How it helps the carer:
Offering to share the driving, put some food in the freezer or simply hanging out with the warrior so the carer can go for a walk or have some down time, will make such a huge difference.
The memory:
Jamie taking Al for a pizza & to the movies when Al was wired on steroids, so I could get a break, what a total hero!
3.
Stay in touch consistently
not constantly...
Why it's good for the warrior:
Just a text or phone call once a week or however often you normally would, thats all they need to feel less alone. Don't be offended if they don't pick up or reply straight away. Things may need to be a little more on the warriors terms for a wee bit.
Its really important you treat & speak to the warrior as you always have, you can be concerned & really want to help, but don't treat them like a freak of nature because they have an illness.
How it helps the carer:
Friends checking in asking how I am & not just how Al is doing, makes me feel less alone. So often the carer is bombarded with how is the warrior questions, it's really important to remember they are living with cancer on a daily basis too. Some people feel too scared to ask the warrior, however I have found Al talking about how he feels actually helps him & his mates.
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I really struggled at the start, I became bitter & angry because everyone was so focused on Al. As a carer you are already putting yourself second & by not asking how the carer is you are reinforcing the carer being less important than the warrior.
The memory:
Getting a message from a friend saying "hey knob head, how are you guys doing? Ive not heard from you so I think you are having a hard time, can I help?" Communicate how you normally would (it just happens Queenie & I always call each other knob head)
Try to be as normal as possible & ask questions, assumption leads to the mother of all f**k ups!
4.
Think outside the box...
Why it's good for the warrior:
It was really hard for Al when he started to feel a little better, his pals/colleagues were out biking, climbing & getting into the hills, when he was trapped in the house walking up the garden using a stick as support. We worked really hard to find positive ways to get him out & about. Jamie & I would drive him up the coast, or we would have a bucket BBQ beside the Spey. Just sitting outside made all the difference to both our mental health, by also having a mate join us helped us have a laugh or non cancer chat. Even cancer patients get sick of talking & hearing about cancer!
How it helps the carer:
I found it really hard to not worry or fuss when Al started becoming independent again, if you are taking someones warrior for an adventure, have a plan in place & include the carer in your plan. It's really important the warrior feels they are making the calls & the carer is there as a back up plan if needed.
A good memory:
Drinking tea from a flask parked up at Burghead with the windows of the car down, smelling the sea air, listening to the birds, looking over at Al, he was smiling for the first time in ages.
We also managed a small walk on the beach & we helped Al get his shoes off so he could get sand between his toes. It was much less stressful having someone else to help incase Al got too tired.
5.
Educate yourself a little bit on the cancer they have...
Why it's good for the warrior:
There is a shed load of info to get your head around at the start of any treatment. Even having someone to speak out loud with about the treatment plan can help the warrior & carer process whats going on.
Al really didn't want any info apart from what his doctors told him he didn't want to know. He needed this time to process the fact his was ill. He put his energies into looking after his mind while I took on the learning role.
I spent my evenings & spare time reading about treatment, side effects & how we would learn to live with this disease.
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Being able to talk treatment & explain what was going on with friends was a huge help emotionally for us. Just having someone listen & try to understand where we were at helped.
How it helps the carer:
The two hardest parts of Al's treatment was the scary-ness of the stem cell transplants & the ongoing huge doses of Dexamethasone steriods.
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The stem cell transplants made me feel alone & scared.
The Dex days make me feel anxious like I am walking on egg shells. Just being able to share those feelings & what is happening medically with friends makes me feel less scared.
A good memory:
When a friend asked for a link to the Myeloma page so they could read about what the cancer was doing, made me feel like this was a not just a friend this was someone who really gave a shit about us.
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Queenie once picked me up at house for a dog walk one evening when Al was on Dex. We got into the woods I was in bits. She pulled out a tommy tippy filled with wine (she couldn't find a cup with a lid) & we sat on the edge of the spey in the moonlight talking cancer treatment & sipping wine.
I walked home feeling like I could keep helping Al after spilling my guts to a friend.
HOW TO NOT BE A DICK
Things not to say & do