Saturday, 12 September 2015

About Caring for Cancer

Cancer is a strong word, for everyone! It certainly defines you and the people around you, and those you meet along the way. That moment when you tell someone you've got cancer elicits different reactions, sometimes awkward, sometimes puzzling, but most times touching sentiments. I'm writing these thoughts from my own experience and from talking to other patients as well. First off, remember that the cancer patient is still the same person that they are, you can talk to them like you normally would. If you don't know how to react or what to say, then tell them that or just let them know you care and are wishing them well. The simplest heartfelt expression of concern is best. Sometimes just listening, or a hug, is good enough. It is good to offer encouragement and to say it's going to be ok, but don't be overly positive which can be seen as false optimism, it discounts the person's sadness, anxiety, and very real concerns in directly confronting the very real possibility of death. It maybe tempting to say you know exactly how they feel, and unless you've been there yourself, please don't. No one knows exactly what a cancer patient feels except the person going through it. A common reaction is people telling you about their own experiences of cancer, their own theories of a cure, whether it's they themselves or someone they know, and while it's good to share what you know, bear in mind that everyone's different, like I've said in my past post, Cancer is individual specific. Don't ever say "oh cancer is treatable now, I've read........., just do this......., it's just like treating a cold these days....., while you want to be encouraging and positive, you don't know how tough it really is. It is very hard to describe the shift the person transitions into. Sometimes the uncertainty that comes with Cancer is overwhelming, and these strong feelings need to be vented out, often to family, friends, and caregivers. If you have been vented on, remember that it is not about you, the frustration and anger that was expressed to you is because you are a trusted person, someone deemed to have that space available for a loved one facing cancer. A safe space every Cancer patient I really wish could have. While it's unfair to expect everyone to make adjustments for you, it's good for anyone going through Cancer to be given a special place in your hearts, it gives them substance. Not everyone with cancer wants to talk about their feelings either, they may want to keep their feelings private or have other ways of expressing it. A diagnosis of Cancer changes a family forever, priorities shift, roles are often reversed. While the cancer patient suddenly takes centre stage, it is important to note that everyone needs to move forward as well. The practical logistics of how this may be achieved is a challenge, so are the emotions that everyone will go through. The urgency of physical and emotional care adds more pressure and can cause anxiety, even resentment amongst family and friends. This is where professional counselling can come in, I've gone this route a lot of times, it eases out the overwhelming burden on the family and your own expectations, it's a cancer perk patients should avail oneself of. 
Practical help is not only welcomed by patients, but also to carers, and the family. I was fortunate to have hired help during the most trying times, the first round of chemo, when I can barely move. Even then, I needed more, and the family needed more practical help. Here is when you can step up for them. To suggest a few, offer to do errands, take the kids out or babysit maybe, give their carer a break, make a meal for them, come by and juice for them, do their laundry, or clean their house, get groceries for them, help with research, or read to them if they can't, drive them to appointments, offer to look after their pets, assist them with hobbies they used to do, leave them alone if that's what they want. If you know them well you'll know what they need. The time they save on chores, they can use for healing or for taking a break from the mundane tasks of daily life so they can actually enjoy what's left of their life, especially if their cancer is late stage. I was talking to a cancer patient and her husband once and they said a lot of their family and friends have become silent. People cope differently with news that someone you know has Cancer, and that's very understandable. Some simply get lost and don't know how to best react so they choose to not do or say anything, they care but are lost themselves especially if the patient is the one everyone used to lean on. Some go on defence mode, and try to avoid the pain they might witness, they can't deal with the stress which again is understandable. Some simply brace themselves for news of your passing basing it on Cancer's brutal reputation. Still, a lot pray and send you wishes in their own quiet way, which is always beneficial. If you can't face us or talk to us, a card, a note, an email to say you care is good enough, at least you've said it while we're still here to appreciate the thought. In this case empathy weighs in more than sympathy. I recently signed up for a personal facebook page, and was touched by the messages and well wishes mostly from my high school friends that I would have missed, posts from the time I got diagnosed, thank you. 
I, personally didn't care how I looked, and still look now after chemo, but a lot of those I talked to are sensitive when it comes to the physical changes one goes through from treatment and the cancer itself, you don't need to spell out how thin they are or how sick they look, it's very likely they're already aware of it. Don't post photos without asking, we're not exhibit material. Respecting one's privacy is important. Ask them who knows and if it's public knowledge or if you can tell someone. Don't broadcast it on Facebook or social media unless you ask permission. Your good intentions are appreciated, just be tactful and respectful. 
More than the practical help though, be there for them. Cancer is more than just a physical issue, sometimes the hardest part is the emotional impact that it brings.You will have to stretch your patience and understanding on this one. Irrationality comes with cancer, in fact it is a symptom of cancer, and with all the chemicals we ingest, we can't always be expected to cope with everyday life with a clear mind and a cheery smile. Even without this, don't you think it's normal for anyone in this situation to be in shambles emotionally? Facing life or death everyday is an absolute fact of our new reality. Give us space - and the allowance we need to grieve our cancer, to deal and face our fears, our frustrations, our questions, and our confused, and varying emotions, don't take it personally. There are times we need to just be, allow us that space, give us our time. Some days we may not be ourselves. Dealing with such intense thoughts and feelings about the uncertainty of life can be overwhelming. Talking it out can reduce some of that anxiety and helps us make sense of what's happening to us, and the events that arise from it. Sometimes even when you have people around, you can still feel alone when you're not getting the support you need and want. Dr. Jeremy Geffen, a prominent US oncologist stresses the importance of psychosocial support in increasing the effectiveness of treatments, conventional or alternative. He talked about emotional healing and it's powerful effects on cancer patients and bridging the gap between, body, mind, heart, and spirit to help those facing cancer. In his book The Journey Through Cancer he offers an innovative seven level programme that cancer patients can adapt. My advice to cancer patients - if you can't find the help you need within your circles, be it practical, or emotional, it is important to go seek it somewhere else, no one should have to face cancer alone. Look at the supportive services on offer right at the hospital. Organisations like Macmillan, Maggies, and Mariecurie are all good options. Sometimes it's better to talk to a complete stranger, someone not involved personally, you can be completely open and honest about your situation. They can see the bigger picture, therapists don't criticise or judge you either. They can provide you with the confidential space you need and discuss freely, even your deepest concerns. Having somebody who can really listen and address your emotions and issues objectively, and then give you the support and encouragement you need makes you feel valued, appreciated, and understood. Create an environment where you feel safe and where you will be allowed to be selfish, sometimes for the first time in your life, remember from here on in what you experience affects every cell in your body. Cancer forums are amazing too, there's a sense of home, of belonging, of community because you share so much. You don't need to define or describe, or explain the phases you're going through. You may come from different situations but you somehow understand each other, you belong to this sub group if I may call it that. You "speak the same language". The support I get from the forums is amazing. I learn from them, I feel with them, I feel the love and support from them. A new family almost., are two of my favourites. Aside from forums, if you want to be really discreet and anonymous but need a safe place to vent out, there's Pencourage and Whisper, which are forums not just for Cancer but for everyone who feels isolated, shut down, or stuck. Journaling is an effective outlet. It is very important to get psychosocial support when needed, Cancer can be isolating and frightening, and your existing circles may not be able to cope or understand where you're at, so expand. Find that safe sanctuary for yourself. Whatever you choose, you need to do this. There are options and choices for you, you don't, and I would say it again, you shouldn't have to face cancer alone. 

Today will never come again. Be a blessing. Be a friend. Encourage someone. 
Take time to Care. Let your words heal and not wound.

A caring heart that listens is often more valued than an intelligent mind that talks.

I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel - Maya Angelou 

Compassion, empathy, and love are the real pillars we need to build within ourselves to become human. 

Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom Marcel Proust 

Those who care about you can hear you even when you're quiet. 

Compassion and tolerance are not a sign of weakness, but a sign of strength - Dalai Lama 

A good laugh and long sleep are the two best cures for anything.  

In solitude the mind gains strength and learns to lean upon itself. Laurence Sterne  
Caroline Reyes-Loughrey Photography