You’re right that it’s hard on the caregiver as well. I went back to see my therapist after I was told that John’s immunotherapy trial did not work. I recognized that I needed someone to talk to and friends were not the best people to reach out to. They just could not understand the complexity of oral cancer and its treatments. John had a therapist that he saw too on a regular basis.

All through John’s treatment, it was important for me to get up early enough so I could have breakfast quietly on my own. That was the one time I really valued. I guess it’s a way of saying that I needed some “me time” during the day. I am a knitter so I ended up doing a lot of knitting both in the waiting room or when I went with John to his treatments. Knitting is also calming because I could focus on something else. I read too, but it was difficult to read because my mine would be so busy that I literally lost the plot. I knew from the very first that being diagnosed Stage 4, John’s chances were not good. I did not focus on the “what if’s”, instead I focused on the next step, like I would not worry about an upcoming scan until we were sitting in the doctor’s office waiting for the results. I kept meticulous notes on medication, intake and I could talk to the doctors and nurses knowledgeably about whatever they needed to know. It’s my way of contributing to his care — I did not just do what we were told to do, I actively managed the case. (One time, I had a hospital pharmacist asking me if I was a pharmacist as I was talking to her about serotonin syndrome and she couldn’t understand how I knew all that.) I actively advocated for John. If he was in Emergency, I would be making sure he was getting the help he needed in a timely manner. When he was in hospital, for example, I made sure his sheets were changed and if not, I would go talk to the nurse in charge.

Then, of course, I was on this forum everyday picking up pointers and cheering people on. I’m sure you’ve felt the camaraderie here. I learned a lot from here that I could use in caring for John and I got a lot of comfort too.

Going back to your first question, yes, the anxiety can be overwhelming. I honestly felt I suffered from PTSD and it took me two years after John’s passing to feel like my old self again. During John’s treatment, knowing where and how I could get help was the crutch I leaned on. John had a fantastic family doctor and he would ask to see John every month to check on him and if John was ever unwell, we knew we could get in to see him the same day. (John once had the hiccups for hours on end and the doctor gave us an appointment at the end of his day so he could get relief.). John had a nurse from CCAC visiting weekly and she’s a gem. The pharmacists at my Shoppers talked to me as a friend, explained stuff to me and even offered to deliver the medication when I couldn’t leave the house. Having the support network and being able to use it was so important. I am very grateful to all of them who gave me the help. Someone recently commented that that’s what these people were trained to do — that’s true to some extent, but I needed to want to accept their help and tell them I needed the help.

The most important thing is perhaps knowing that you are not alone in this. If you or your wife would like to send me a PM (private message), please feel free to do so. Tap on the little envelope on the top right hand side of the page next to your name.