Caring for a parent with cancer in your 20s

• 

First of all, I would like to acknowledge you and thank you for having the courage to click on this post. I truly hope you just got lost on the way to a much better blog or better post of mine, but if you are going through what I have, and haven’t stumbled here by mistake, I truly hope my experience and this post will help you in one way or another.

If you have been following and reading the few posts on my blog, you may already know a bit about me. But for those who don’t know, my dad was diagnosed with pancreatic cancer back in November 2015. After 3 and half years fighting, he peacefully but unexpectedly passed away a bit more than two months ago, on the 22^nd June 2019.

My dad was diagnosed when I had just turned 24. Back then, I had been moving a lot the previous few years and 6 months before the diagnosis, I had decided to settle back in London to work in events, a job I loved at the time. My career was taking off and I was finally feeling like those years working to get a Master’s degree were paying off. I felt free, happy and like I belonged were I was. I am an only child and as much as my parents love me and I love them, we weren’t the type to call each other every day to go through meticulous details about our daily lives; so when they informed me something was wrong, they waited for me to get home to Paris to drop the news.

Fast forward to today, almost 4 years later, I will be turning 28 tomorrow, officially entering the last bit of my 20s and my life has taken a complete different turn. If you are going through a similar situation, especially in your 20s, here are the main few things I discovered throughout the last few years:

LIKE EVERYTHING IN LIFE, IT’S A LEARNING PROCESS

Take it this way. In life, the more you’re qualified or trained in one area or another, the least impressive and scary it is to you right? Do the same with your loved one’s cancer. Take it from the girl who was RUNNING from this word and all things medicine – and probably still is on some occasions – the more you understand about what they – let’s call them “our angels” because “they” is extremely impersonal and I don’t like it – are going through, the more you will feel helpful and qualified to help them.

Disclaimer, in no way am I telling you to ditch your doctor and become their full time oncologist; but nevertheless, I would still advise you to learn the terms, go to the appointments, know exactly what they need to take and when… Your angel –may it be your dad, mum or anyone close to your heart – is going through a lot of things which demand a lot from the body and also the mind. The least you can do is learn a few scary words to try and relieve them in some way no?

CANCER IS HIGHLY DISCRIMINATING

Hear me out guys, yes I do know people from all religions, sex, size, colour get diagnosed. But in front of the same job offer, not everyone is treated with the same chances. What I mean is that, cancer is different for every single person, even if these people have been diagnosed with the same “type”; it doesn’t treat anyone equally. No one’s body reacts in the same way. No one goes through the same exact symptoms, pain response or side effects. And this is what makes it so hard to treat on a large scale. So help your angels find what works best for them:

_Did the doctor advise to go for a walk once a day? Does it feel better in the morning or evening?

_Prescribed paracetamol pills? Which “brand” is best? Although it’s just paracetamol, you’ll find that sometimes one works better than the other for some reason!

_Meat doesn’t go down well because it doesn’t taste the same? Take them to buy some fish or veggies and try it together.

Your angels are going through so much, and all those little attentions and details are what set you apart from all the doctors. Don’t let them figure it out on their own. Help make their new daily life work for them!

THEY LIVE WITH IT, THEY ARE NOT IT: FRIENDS AND FAMILY EDITION

A year ago exactly, my dad and I spent two weeks just the two of us. At this point I had stopped working for a bit more than a month and I was just starting to find my own pace again. To this day, this is one of the best times I have ever spent with him: we were going on daily walks in the forest, having the greatest conversations, watching really cool programs I never would have watched otherwise… At this point it felt like nothing mattered but the now, and the now was much more than good enough. I don’t believe we ever mentioned the “C” word once, even though we went to another one of the hospital meetings with the oncologist and that the results weren’t great. He even went to chemo at the start of the two weeks, one of the hardest chemo you can go through, and we didn’t care. We just enjoyed being together. Do what had to be done then move on to better things.

This story is relevant because, months later, even a month before he passed away, my dad was still telling me how those two weeks were the best he had had in a long time. We had learnt to live with cancer, and not let cancer live with us; we didn’t give cancer the attention it didn’t deserve. My dad is just so much more than just this cancer s*** – I am not at the “was” stage sorry.

Same goes for family and friends. If your family is like mine, you rarely see people outside of your close circle. Those people understand that medicine, illness, treatments and their own doctors ’appointment for their flu shot isn’t the only thing your angel wants to hear about. But for the ones you and your angel aren’t used to seeing, and for whom you might have some concern, it might be good to hint that a 50min slideshow of their latest Bora Bora holiday or asking a detailed summary of the past 6 months ‘blood results might not be the best subjects to discuss. I repeat: Don’t let them give cancer the attention it does not deserve.

HOPE IS LIFE

Repeat after me: Hope IS life…. Louder! Hope IS life!! HOPE IS LIFE!

I couldn’t stress this enough. Hope is Life – with a capital “L” – This world makes you feel like a fool for hoping, for believing in your dreams and not just accepting “the harsh truth” they call it. It will take the first opportunity to beat you down and bring you back to this so called “reality”, which is nothing more than pieces of sadness, needs and disasters mushed together and designed to control you… – wooo Alix, what’s the link here please.  

Well, have you ever heard this quote that says: “Believe you can and you’re halfway there”? You can apply this to many areas of your life but it also works for your angels and recovery. Take it from my experience, my dad has always been dealing with very high anxiety, which he could manage in “normal life” by just doing things and dealing with problems. Illness is a complete new experience because you only have so much power over it all, there is no certainty about anything –unlike calorie deficit = weight loss for example. I don’t know if you are aware but pancreatic cancer “statistics” after diagnosis aren’t very positive: Take my dad’s 3 and a half years, change “years” to “months” and you have it. He would go through these moments when he would wonder what the point of trying to live was, and I would always tell him: “If we all focused on the outcome of life every day, we might as well all lie down and wait”. It’s not harsh to remind them that life is meant to be lived to the fullest of your abilities; that there is ALWAYS hope – even after you think there isn’t any anymore, as I am slowly finding out.

My dad would always thank me for “being the only one around whom still believed he would win the fight”. And I truly did until his very last moment. I don’t believe it was wrong to do so, if we stop hoping like society is telling us to, we stop living and merely exist. We didn’t come here to exist, we came here to LIVE. And to me he did win: he did so many incredible things despite the circumstances, and we managed to make so many more memories; so much so that, to me, he was winning everyday without realising.

“YOU CAN’T POUR OUT OF AN EMPTY CUP”

• Alix, it’s all well and good to be giving and giving but… what about me?

Well friend, Alix from 3 years ago would have told you that you really don’t matter and that you just have to pull through because what is YOU against LIFE?

Alix from 1 year ago, would have told you the exact opposite, that you shouldn’t be afraid to get away as much as you possibly can and think of you because you matter just as much.

Alix today agrees with both of them but would advise neither. The secret through it – and somehow also life – is BALANCE. You shouldn’t leave your loved one to figure it out on his/her own… but you also never should get yourself to a point where you cannot even think straight for yourself. After all, what good are you if you are making yourself just as tired and depressed? And trust my experience on this, if they love you, they will not want to see you sacrificing everything for this s***. My dad suffered from seeing me putting on weight, and felt guilty when I stopped working: “Alix, you have to live your life and find your purpose. It’s my fault if you’re here”. What he probably didn’t realize is that, somehow this decision is what led me to find what I believe is my true purpose and more – but only the future will tell!

FOLLOW YOUR HEART, GUT AND INTUITION

Did you know that we have “neurons” not only in the brain but in the heart and gut as well? Neurons are responsible for communicating information to your body… therefore you shouldn’t only trust your brain! – irrefutable scientific demonstration right here…  

A year ago, my dad’s health started deteriorating quicker than before. Blood tests just kept on coming back worse and worse and his anxiety was gaining control over his everyday life. At that point, my mum was exhausted and left with very little to face this new “phase”. On my side, I had been trying to juggle a full time job in London with very regular visits – basically almost every weekend and holidays – to Paris, leaving me broke, depressed and which lead to a burnout. I realized we were all heading down the same path if I didn’t change anything and I decided to stop working until I felt like I was ready to get back on track. From then on, and to this day, I decided to focus on my mental health, rest and being there for both my mum and dad.

Fast forward a year later, I can honestly tell you this is one of the best decisions I have ever made in my entire life, not only for myself, but for both my parents despite what they might tell you. It hasn’t been easy at all and I definitely didn’t do NOTHING – yes double negative – during this past year. As a matter of fact, I became a nurse, a psychologist, a private chef, a maid, a personal carer and a full-time daughter. Many people at the time didn’t quite understand my decision, and everyone thought appropriate to give me their two cents on what they thought I ought to be doing with my life at this stage; not having gone through any of this themselves. Let me also tell you that those people were the first one to tell me how wonderful I had been right after my dad passed away; and also the ones who thought asking me “what is the next step” two weeks after the funeral was a good idea.

Now.

I know it all came from a good place and I am grateful, however, I am glad I stuck by my heart and gut feeling all this time. And I am DAMN PROUD of what I have accomplished within that time. It took me a while to find the right balance, but once I did, it all started to make sense. My dad finally understood that I was doing this for all of us, not just myself.

There is, nor will ever be, a good time for someone to get diagnosed with cancer; and there sure as fucking shit isn’t a good time to lose a parent, but damn the 20’s are a bitch. I won’t speak for anyone older than me as I don’t know what it’s like, but what you probably don’t know is that my mum was also diagnosed with breast cancer back when I was about 11. I can honestly say, I barely realized it was happening while it was. Because at 11, you are in school, and your future is on cruise control for at least the next 6 years. You don’t ask yourself any questions. However, the 20’s are HARD. You spend your years going between immense freedom to complete loss, at least I did. You’re meant to be experiencing new things, building a career, travelling, finishing your studies, meeting different people… all whilst figuring out who you are. The expectations are high. So when this happened, my life slowly gained a complete new dimension, one I never expected to ever exist. I found myself stuck between the “shoulds & wants” – should think about my future but I want to rest, should eat less but want to feel better, should have a career but want to be home, should go with him to the doctor but want to stay away from hospitals, should be there for lunch but want see my friends, should have gone with him for a walk but wanted to cry alone, should take time for myself but want to make him feel better, should stay in and look after my dad but want to run away from this nightmare– and the “wants but shouldn’ts” – want to go see my friends but shouldn’t leave him alone, want to go on this holiday but shouldn’t be away this long, want to spend time with my boyfriend but shouldn’t be in London, want to be with my dad tonight but shouldn’t let my friends down again, want to take this picture before he is gone but shouldn’t think like this, want to stay beside his bed forever but probably shouldn’t be there when he goes.

Everyone has their own story, and in no way am I telling you that there is only one right answer to this situation. There are as many truths and ways to deal with this as there are stories. Sharing our struggles just sometimes helps because at the end of the day, if you and your angels are brave enough to be going through this, it just FUCKING SUCKS. I decided to write this post months ago already, when I was desperately looking for some kind of advice and relief at 1am or in the chemo waiting room and I could only come across a small handful. Most advice coming from big companies or associations listing things because that’s what they are meant to do.  I then promised myself that when the time would come, I would put my story out there.

 So if I had to summarize this very – painfully- long post, it would be this:

Nothing would have EVER mattered more than everything I got to be part of during his last year. The good as much as the bad. The happy equally as the sad.

There is no pain greater than regret so follow your heart. I hope it never gets to the point where you feel like you need to move back home, but trust your gut if you feel like you do and do NOT apologize for it.

But most importantly, there is happiness to be found in the darkest of times, so go be brave; I know you can do this!

With Love,

A x 

PS: Here are the links to the other posts I was desperately looking for – every little helps! These wonderful carers have gone through the same… We have different ways of saying it, but it’s crazy how we all come to the same conclusions. 1 2 3 4 5

What Happened When I Became A Caregiver To My Dying Father In My Mid-20s