I have been on 3 journeys caring for my sister, mother and husband. The most recent caring journey has been as a support to my husband who was diagnosed with lymphoma about 12 years ago, which required radiation therapy (he is now in remission from that) and prostate cancer last summer, which required a prostatectomy surgery. His PSA tests are now at zero so we’re both very happy.
One big problem with my husband’s first diagnosis was doctors using fax machines to share important documents. My husband had tests done at one hospital and they faxed this information to another hospital with a request for a follow-up appointment with an oncologist for a diagnosis. The fax got lost. It took way too long for us to track down what happened and then to finally get an appointment. I believe hospitals and doctors still use faxes - this is really outmoded technology and should no longer be used, in my opinion.
With my husband’s second diagnosis he was given the option of 2 very different treatments - one was surgery and the other was hormonal treatment and radiation. After hearing from both doctors and listening to the pros and cons, we basically had to do our own research in order to come to a decision. It’s all very good to give patients a say about their treatment - but there needs to be someone available who can help guide the patient to make the best decision for them. Looking back the hardest parts of the illness journey were having to hunt for information, not feeling well enough informed, and having to wait for a diagnosis and for treatment.
My advice for others just starting the illness journey is to find someone to talk to who has had a similar diagnosis to have a better understanding of what to expect. Make sure you have a support person (family member, friend) attend meetings with doctors to take notes, ask questions and advocate for the patient.
As for my mom and sister - they were both diagnosed many years ago and have both since passed away. It was a different time - many of the issues they faced throughout their treatment have now been addressed and improved. So change is possible!