5 things you can do (a carer’s perspective):
Coming into Brendans next review; rereading this post from my previous blog (The Story of Us), dated August 2015, is a timely reminder. I have curated it here:
My top five: choices I remind myself to make (most of the time) to help deal with my husbands cancer diagnosis, ongoing treatment and recovery. Tomorrow they may vary, but everything here has helped me as the carer, to this point, in what continues to be a long, exhausting and unexpected ride.
If you were to ask my husband; as the cancer patient, his top 5 would probably be very different, or maybe a little similar, I’m not sure as although we are on this rollercoaster together we are experiencing it from different perspectives.
5 Things I try to do:
Own it: you can go down all the poor me, why me roads you want, it won’t change anything. You can even try to dull down what’s happening with copious amounts of alcohol, drugs or whatever else you think may protect you from the pain of what you are going through. It won’t. So the best bet as far as I can see, is to choose to own it, and move forward. Resisting the fact that your loved one has been diagnosed with cancer won’t change the diagnosis, but can put you at a great disadvantage from the get go. I have found accepting what is and moving with the fast pace of the cancer juggernaut is the only way I can keep up with and support my husband as he goes through treatment, and all that comes with that emotionally, physically and spiritually. The freight train was taking off whether I liked it or not; I was either on it or off it. I could not help anyone if I was still standing on the platform feeling sorry for myself as it rounded the first bend.
Look after me: If your family is touched by illness or disability and you are the primary carer, then it is essential that you are looking after your own well-being too. Your loved one/s is depending on you. In many cases, for a time at least, everything outside of making your loved one well will become your responsibility; from running your home, caring for other family members, scheduling appointments, arranging accommodation, shuttling to and from treatments, and tending to the needs of those within and some outside your home, especially the patient – If you are exhausted make time to rest, if you feel overwhelmed take some time for yourself and if you are scared… talk to someone; a family member, close friend, counsellor or someone who has been through a similar situation. There are people and organisations that are only a phone call away, and are ready and willing to help. Understand that your family, friends and for the very fortunate…your community, all want to help; their offers are genuine and are made in the hope that you will accept.
Stay Calm: You will need to find something to help keep you calm and centred. Something to keep you anchored to solid ground. You will be hit by a barrage of information, a lot of which will be extremely difficult to hear and take in. You will receive advice and experience emotional, physical, mental and spiritual upheaval. You will easily burn out if you don’t find a way to keep yourself centred in all areas of your own well-being.. .Find a simple tool or technique that you can use daily (a daily practice) to help keep you on track and energised. This can be anything from exercise, yoga, meditation, reading, dancing, playing or listening to music… anything that allows you to reconnect with you. You will be continually sharing small pieces of yourself in a very big way. So you will need to find a way to re-gather… and please remember to breathe. The tools and techniques I use to keep myself calm and centred have been learnt through the daily practice of Reiki an Energy Therapy, which I use in self-treatments. This practice has sustained and supported me through the most difficult period of my life, and continues to. You will need to find a way to stay calm amidst the chaos, for your sake and those you care for
Ask Questions: As mentioned above; you will be given an enormous amount of information and may need to support your loved one as they are asked to make difficult, life saving decisions. Or you may need to make decisions on their behalf. You need to know that throughout this journey there are no silly or small questions. If you don’t understand something ask, and continue to ask until you understand clearly. We are blessed here in Australia with amazing medical practitioners and access to them. They will address your concerns. Do not be afraid to ask questions.
Don’t get ahead of myself: Very early on in my husbands cancer story his oncologist was explaining his up coming treatment to him. When he was finished I asked what the next step would be, if that treatment didn’t work. He looked me in the eye, and with a firm gentleness said “Let’s not deal with hypotheticals. We will just work with what we know.” He did not make me feel that it was a silly question and he answered with clarity and compassion. It was a perfect answer and a reminder for me to stay present. We have to work on what we can do today to improve our situation. Placing our focus on the here and now is one of the most important things we can do to aid recovery, and yet sometimes the hardest. As much as we want to know what tomorrow will bring, it is much more important to get through today. So in my families case we have worked very hard to not only take one day at a time, but to enjoy that day to the best of our ability as it unfolds.
Although our life isn’t carefree, it is still happy, and for that we are all very grateful.
Life is good and hope is limitless.
You can find more information on Sarcoma Cancer by following this link: sarcoma