Tag Archives: DOs and DONTs with cancer patients

How To Help A Cancer Patient – Are You Also Clueless?

I have been living with cancer, recovering from cancer, in fear of getting the cancer again, rinse and repeat cycle for the last 5 and half years. The chances are that you read this article right now, because you know someone who has cancer too, want to help, but don’t know how. Join me in my very personal story to teach you how to help cancer patients!

I have written many updates on my social media profiles about my cancer simply because it helps me to talk about it. People have reacted in different ways, some positive, but also often in some very negative ways.

Cancer Cells
Nasty cancer cells

I wanted to write down my thoughts how you can help someone who is living with cancer. This post originally appeared as a rant on my Facebook page, I have altered, updated and edited it for the purposes of making it into more of a guide for people who want to help a friend, relative, child or spouse living with cancer!

In order for people to help, the need to understand how it is to live with cancer, so here it is, my raw and very personal take into being a cancer patient!

Living With Cancer Day In, Day Out

How does one deal with impossible work deadlines, kids, household, friendships, upcoming holidays while trying to take care of oneself, get rid of the cancer and all the other health problems it causes and heal?

The answer is; you don’t

It’s just not possible

Nobody really understands

They all say they do, but they don’t

Deep inside they are just mad at you

Angry at you for not pulling your weight around

After All, the live goes one around you

It is only for you time stands still!

 

They don’t understand the guilt not being able to be there for your kids!

I am so tired all the time
I am so tired all the time!

Not to have the energy to clear the house, wash the laundry or sort out the garden!

Do the paperwork of running 2 companies and trying to concentrate working full time for third!

Do some exercise, yoga and meditation and of course train the dog, because I am the one who wanted to have him in the first place!

Take care of ones impossible diet and get some sleep.

Least of all, they will understand how tired you are ALL THE TIME!

They Tell You

They tell you to take it easy, not to work, but get mad if there is no cash to pay all the bills in time.

They tell you shouldn’t use your time and energy on traveling if you are feeling so poorly, but expect you to be present at every business meeting.

Still love skiing
I still love skiing, even if for just few hours!

They tell you to rest, but when you try to spend time alone, they tell you are never there for the family.

At Home

My every waking moment goes into either into working or sorting out the chaos inside the house or in the garden, running errands and doing paperwork.

The house is falling apart and the garden is a jungle. It feels like I get nothing done, ever and everyone is just mad at me 🙁

No energy for kids and even going out to walk the dog, something I always loved becomes a chore…

I start one thing but never have a chance to finish it, at night I fall on the bed dead exhausted but unable to sleep from the stress and often lay awake all night worrying.

On The Road

If I am on the road, I leave the kids to their father or grand-mum, I am a bad mum. It makes no difference if I am going away on business because I want to make a difference and actually care about our future or to the clinic to receive the treatments. I am not there and therefore I am not a good mum.

Me sitting in the office, fulfilling my CTO role
Me sitting in the office, fulfilling my CTO role

If I am work, people are blaming me for things that were happening when I was not there, things nobody bothered to discuss with me or even inform me about. Other people make technical decisions, changing plans without consulting me and causing a huge mess. I get blamed for not keeping to deadlines which would have been difficult even under the best of circumstances.

At The Clinic

Me at the mountain lake near my cancer clinic
Me at the mountain lake near my cancer clinic

If I am at the clinic, nobody understands how hard the days spent there are. People see pictures of me sitting by the lake or
on the mountain after the treatments, not hooked up to the machines at the clinic or having my body put through yet an other set of tests.

Everyone seems to think it’s just an other holiday that I didn’t deserve because after all I am not pulling my weight and and other people are working way harder that I am.

They don’t understand connectivity problems and times it takes to get to this remote location or how exhausted the treatments and the medication make me.

Where Is The Support From My Loved Ones?

Nobody even bothers to ask me anymore how I feel, nor cares when I almost faint from pain or cannot walk or drive the car properly. If I can do it on Monday, surely Friday cannot be any different?

They are all tired of hearing from my health problems, treatments and medication, it’s always the same. Better not to ask anything if what you will hear is unpleasant, right?

I know everything about cancer!
I know everything about cancer!

Everyone has their own opinions of cancer treatments, which their learned from Internet or their friends and for sure offer them freely. If I don’t want to listen with a lot of attention and care, I am a fool for not keeping all my options open. After all their cousins mother-in-laws brother got well by using this or that method!

When my body swells as my kidneys refuse to function and my missing lymph nodes are not making things any better, people think I am fat and disgusting. Other females look at my swollen legs smugly and claim I have cellulite, my own son tells me to do some exercise and men remark how much weight I have put on.

Swollen with water retention, in pain at company event
Swollen with water retention, in pain at company event

When I don’t fit into my trousers they tell me to wear looser clothing so they don’t have to look at my disgusting body. When I am not able to wear bra from my scars, which hurt from swelling, I am provoking and slutty. When my stomach, deformed from the operation scars, protrudes trough my clothing, people stare with disgust.

When I cannot eat what others do, they still wave stuff in front of my nose, because it tastes good and they want to make me feel excluded. Who cares if the smells of food drives me nuts when I am fasting?

How Do I Get The Strength To Carry On?

My favorite moments are me sitting in my car, driving somewhere, because I can play loud rock music and pretend for just a moment that I am not ill and it is all just a nightmare.

On the good days when the sun is out, I love to take walks with my dog and think about my life. On bad days I like soaking in a hot bath tub or taking a sauna. I love spending time on my own.

I keep on telling myself that I am beautiful despite the scars and the swelling and worthy of peoples love. That it’s worth fighting for to get healthy again. I avoid looking into the mirror and buying clothes.

Me at summer festival
Me at summer festival

Those are the moments I live for, that give me power to continue my fight. And of course for the few rock concerts I have lined up  and look forward to.

That and the support of the few amazing people who are always there for me, ready to listen or just hold me when it all gets too much.

What Can I Do To Help?

If you got this far, it’s because you actually wanted to understand how it is to live with a cancer. You should be able to related better to the reason which got you started reading this article in the first place!

So next time you see your loved one, either me or someone you care about, try to remember the following:

  1. DO NOT MAKE EMPTY COMPLIMENTS! If someone has just lost their hair as a results of cancer treatments, they do NOT want to hear they look OK, trust me on this one! If they complain about it or want to go shopping for hats or wig, offer help and your opinions, but DO NOT TELL THEM THEY LOOK JUST FINE!
  2. DO NOT COMMENT ON CANCER PATIENTS WEIGHT! Cancer can cause you both LOSE & GAIN weight. Just because someone you once knew lost a lot of weight due to cancer, it doesn’t mean someone else can’t suffer from excess water swelling due to cancer!
  3. DO NOT TELL THEM THAT THEIR CANCER POSTS ON SOCIAL MEDIA ARE ATTENTION SEEKING! When people talk about their cancer, it is not because they are just seeking attention and pity posting on social media or by taking up cancer related issues in a conversation. It HELPS to talk about it and this is what your doctors and therapists teach you to do!
  4. DO NOT OFFER YOUR INSIGHTS INTO ALL SORTS OF NEW CANCER TREATMENTS YOU HAVE HEARD ABOUT! She does NOT want to hear about, it, TRUST ME ON THIS ONE! She has spent thousands of hours reading about it, researching the topic, if she wants to discuss it with you, she will ask you of your opinion!
  5. DO NOT TELL HER WHAT TO DO OR HOW TO SPEND HER TIME! If she likes to travel or party, let her, it gives her something, energy perhaps, or just a moment without worries.
    Me enjoying a Metal concert.
    Me enjoying a Metal concert.

    Maybe she is just filling her bucket list. If she wants to be alone and listen to sad music, let her, maybe it helps her mentally. Let her find out what helps HER and be supportive!

  6. DO NOT TELL HER TO KEEP TO HER DIET! Cancer diets are often very difficult, they require enormous amount of strength and will power. If she decides to let go one day or for a duration of the holiday, DO NOT JUDGE HER!
  7. DO LET HER BE THE ONE TO START TALKING ABOUT CANCER! There are times when we just don’t want to go here and often those times we are suffering the most! Be patient, be attentive and follow our lead!
  8. DO FIND TIME JUST TO BE THERE FOR HER! Talk to her, check on her once in a while, do silly things with her
    Me and my mum at carneval in Sitges
    Me and my mum at carneval in Sitges

    Ask her how she is doing, send her flowers, take her out,  go to the rock concert with her, spend the day with her or what ever she wants to do! Don’t wait until one day she is no longer  with you to tell and show her you care!

  9. DO ASK HER HOW YOU CAN HELP! There are so many ways you can do small favors for cancer sufferers, just ask, we do appreciate it. She might be too tired to clean the house, walk the dog, wash the car or she might just enjoy a break from cooking. Respect her answer and know if it was: ‘I am OK thnx’ on Monday, it might be different on Friday.
  10. DO OFFER HER HEALTHY CHOICES! If you bring her chocolate, make it dark chocolate, if you invite her over for dinner, make sure you prepare a nice and healthy meal. DOT NOT EAT UNHEALTHY STUFF IN FRONT OF HER AND TELL HER YOU ADMIRE HER WILL POWER! Take her to that new juice bar or ask her to join you in gym or a walk. She often struggles to make those choices on her own!
  11. DO DEFEND HER IN FRONT OF OTHERS WHO ARE UNAWARE OF HER ILLNESS! She might not want to tell everyone herself, but if someone is wondering why she has her ups and downs and criticize her in front of you, let them know so they stop judging her. It is not a state secret, that is unless she explicitly asked you not to tell someone or anyone for that matter.
  12. DO INFORM OTHERS TO READ THIS POST! If they are making the same mistakes you were or not understanding what the cancer patient is going through, ask them to read my post with thought.
My alter ego Xena, fighting cancer
My alter ego Xena, fighting cancer

Am I asking too much? Actually all I ask is for you to THINK and just take a moment to CARE or talk to me next time you see me!

This post is not a rant, but rather a tribute for the ones who have been there from the moment I got diagnosed and the ones who just shared the last month of my fight. I don’t care if I have known you all my life or know you only from the Internet:

YOUR SUPPORT MEANS A WORLD TO ME AND I WANT YOU TO KNOW THAT!

Winne The Pooh about love
Winne The Pooh about love

With All My Love,

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P.S. If you want to learn how to deepen your meditation experience, take a look at the Ayurveda aroma experience These essential oils have a subtle, yet extremely powerful influence on our mind and body.