CARING IS SHARING - PART 1
Welcome to this series of blogs - This is for you... the carer, the silent hero, the rock.
You are the glue that holds life together when shit hits the fan.
Firstly, if you are reading this because you have found yourself caring or supporting a loved one with cancer, I am sorry you are going through this. You are not alone; I am placing a firm hand on your shoulder & you will get through this.
Secondly, if you are reading this because you have a friend with cancer or a friend caring for someone with cancer. Give yourself a bloody big pat on the back for reading this. You are a true friend; I hope I can help you understand what you can do to help your friend or loved one while looking after yourself.
When we first found out about Al's cancer, I felt like the world was spinning around, while we were trapped in this little bubble of our own world. I have never felt so detached, I believed life would never be the same again & that we would never be happy again. It's true, life will never be the same, it's different on so many levels. You do come through it, time heals & the good bits are there, we just have to learn to adapt, to look for new horizons & enjoy little victories.
PART 1: THE EARLY DAYS
These are some of the lessons or coping strategies I have learnt along the way. I hope by sharing I can help you find your feet or give you some space to realise you are not alone. You will find your own way to survive & maybe even blossom from the really shitty deal you have been handed.
The C bomb has well & truly been dropped
This is aimed for folks going through the earlier days/weeks of diagnosis. The summarised pointers are to steer you in the right direction & hopefully help you find a calmer place.
You have to treat this situation like a marathon to survive. Don't sprint off from the start line & burn yourself out before the half way point. You need to reserve your energy, look after yourself & try not to be too hard on yourself. This is new territory, it's a flipping emotionally draining time, so be kind to yourself, even if you f**k up. Not only are you dealing with your own emotions, you are trying to understand your loved ones, while juggling daily life.
Al said when he was diagnosed it was easy for him, he said his world became suddenly really small while he just concentrated on his treatment & surviving. For me it was so hard because I was coming at this blind. I didn't know how to ask for help. So I took everything on my own shoulders.
Taking life back to the basics might help you cope better. Food, sleep, rest & down time are a good start. Forget about all the trivial everyday shit, it can wait. Life will not stop because you didn't reply to that email or you weren't in for the meter reading. Life will go on, its all about prioritising & looking after yourself, so you can help your loved one.
Here is a list that I wish someone would have given me at the time:
PRACTICAL ADVICE (my now golden rules for when I am paddling down shit creek without a paddle).
Let the news sink in, it will take time (i'm still processing after 3 years).
Take some actual time to sit outside alone to reflect, cry, scream or all of these options.
Get some light exercise, fresh air or a walk each day.
You are not a robot, be kind to yourself, it's ok to struggle, you are allowed to have feelings too.
Try & sleep or at least rest. It's really hard I know, try using a relaxation app, I use Calm. Do not lie awake reading horror stories or researching prognosis's on your phone all night, be kind to yourself & defuse that anxiety.
Make sure you eat little & often. Eat healthy whenever possible, hospitals don't lend themselves ironically to healthy food. I survived on yum yums & danishes until a friend started making me food to take or to eat when I got home.
Avoid lots of caffeine, because when you get a chance to rest you will be wired or too jittery to chill. Caffeine will mask your tiredness & you will burn out in the long run.
Drink shed loads of water, hospitals are hot places & you will be less tired if you do. Get a refillable bottle & use it religiously.
If you are the driver, don't drive straight from the hospital home, have a cup of tea at Maggies or a breathe of fresh air (I almost crashed after our first hospital day).
Make up an emergency bag for you & the warrior to keep in the car or somewhere accessible. We have had nights when we have had an unexpected night at hospital, an ambulance ride or chemo fart accidents. Make a bag, stash it in the car & reduce your stress, it's just a backup in case the unexpected cancer dramas happen. In Al's was undies, socks, spare t-shirt, phone charger, toiletries, a list of drugs he was on. In mine was the same as Al's, but I also had headache tablets (I get bad headaches when stressed), a book to read, muesli bars or a snack, a notebook & pen for making notes.
Only read information from your doctors, nurses or proper resources such as Macmillan etc.
Keep social media to a minimum. I made myself really miserable looking at friend's holidays pictures or date night photos, while we were going through hell. I became resentful/jealous & it was ugly. I took a few months off facebook & it did me the world of good.
Talk to someone, a friend, a nurse, pick someone you feel comfortable with & blurt it out.
Let your emotions out. I bottled it all up. I am a Kiwi farm girl - we show no weakness! It is ok to cry. The doctors & nurses deal with it all the time & if people judge you they are dickheads. I have now cried at work, in public, at the hospital & in front of friends WTF! But do you know what, I am still alive & I am a bit proud that I don't bottle it all up now.