Things we wish we knew at the start of our son’s cancer journey and some tips that will hopefully help make life at the hospital that little bit easier for you: To help save money, consider paying for a weekly parking ticket- You will be at the hospital a lot and the price of hospital car parking adds up quite quickly. We were paying for hourly parking for quite awhile before we realised that it was cheaper for us to pay for a weekly parking ticket. A one hour appointment can quickly turn into a four hour appointment. Which brings me to my next tip.. Be prepared. Try not to make other plans- If you have been given an appointment and it’s only suppose to be for a couple of hours be prepared that you could be there for the majority of your day. Emergencies, staff shortages and unforeseen things happen all the time at the hospital. We have never had an appointment that has ran on time but that’s okay, because we are now prepared for the unexpected time delays and we don’t plan anything else that day. Example; we had an appointment yesterday that was booked in for 9:30 am, it was suppose to only take two hours. We left the hospital at close to 3 pm that afternoon. Health care card- Apply for a health care card for yourself or your child as soon as possible. Medication is costly and the health care card can help reduce some of that cost. The application process takes quite awhile to get approved. We are still waiting and it has been nearly two months since our application was submitted. Talk to your doctor/oncology pharmacist, they may be able to hold onto/extend your invoice payment date for you until your health card comes through. To help save money, take food/drinks with you - Pack yourself some food to take with you to the hospital. Cafeteria food/coffees are also quite expensive and can quickly add up. There may be a parents room in the oncology section that have refrigerator’s that you can put your lunch boxes/drinks in. Buy yourself a journal/diary- There will be so much going on, especially at the beginning and it is hard to keep track of what is what. A journal is a great way of recording appointment times, jotting down information that has been provided to you and to record anything out of the ordinary that may be happening to you or your child’s body due to treatment. e.g: rashes, high temperature, bleeding etc We take our journal with us every time we go to an appointment and it has been extremely helpful so far. Take advantage of Support services- I know that I mentioned this already in a previous blog entry but I’d like to include it in this tip section also. There are so many support services available to people who have cancer. Not only is it there for the person who has cancer but also for the people in their lives. I highly recommend utilising these services. It could make a huge difference in your life and the way you and those around you cope with having cancer. You should be appointed a social worker at the hospital who will help guide you through this process and can provide you with referrals to services that are available to help. These services can include; financial support, counselling, education programs and information, support groups, accomodation, practical assistance, physiotherapy (and more) Here are some links for Cancer support organisations: www.healthdirect.gov.au www.childhoodcancer.asn.au canceraustralia.gov.au/affected-cancer/cancer-support-organisations www.cancersa.org.au/information/i-have-cancer/support-services www.canteen.org.au/how-we-help/other-support-services/ www.redkite.org.au www.variety.org.au/sa/ Grab a business card or letter head- There are going to be so many appointments that you will need to attend during your cancer journey. This will either be at the same hospital or different ones. Each area will have their own contact number. E.g. Dentist, Pathology, Radiology, Oncology, Oncology ward, Pharmacy etc. You may have to contact them at some point to either schedule or reschedule an appointment or to ask a question. Business cards/letterheads have all their names and contact details on them. We stored all the business cards that we collected in our journal folder but you could collate all those contact details and store them on your phone (if you have time) or write them in a word doc/spreadsheet. Don’t forget to write down names- I have to admit that I am hopeless with remembering names-but I try!. You will meet so many new faces and a lot of these people are going to be with you through your entire cancer journey. It could be the nurses who give you your chemo treatment, the staff in the ward, the different doctors coming in to speak to you, the pharmacist, the social worker, the hospital school teacher, the chaplain and so on.. Writing down their names gradually helps you to remember who they are. We still get their names wrong on occasion and have to check our journal. I believe that addressing someone by their name helps you to establish a better connection and makes them feel just as important as they make you feel when they use yours. Not only that but it helps save you the embarrassment of saying things like “I’m sorry, I can’t remember their name? The nurse with the long brown hair, I think her name started with an S or maybe it was an M?” :p And the last tip.. Don’t forget your phone charger, cables and/or spare battery packs- You will spend a lot of time in hospital either waiting or for treatments and what else can you do besides watch ABC for kids on the hospital television or surf the internet? ;) There should be places that you can plug your phone in to for charging but sometimes the outlets may be out of reach. Having a spare battery pack is handy in that situation. You don’t want to miss out on watching that funny cat video do you? :p Extra tip: You also might be lucky enough to have free wifi in the hospital too! So don’t forget to ask for the password before you chew through your own data. If you have any tips or things that you have picked up along the way that could be helpful please feel free to share in the comments section below :)
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AuthorHi, I'm Tj's Mum; Zoie All Blog Entries
August 2018
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