The people that I have spoken to on this issue, have very contrasting views. There are also different cultural views too. A hospital visit, can be quite a daunting prospect at the best of times, so I can understand why people would want the comfort and support that a friend or relative could provide. In some cultures it seems like a lot of family members attend, with the patient, for added support.
My personal view was very different to that at the start.I was always aware that a hospital visit would take up a lot of time. I knew that appointments never ran on time, so there would be a lot of waiting about.I wasn't so much worried about my own time, as I always left plenty of time either side of the appointment. I was more concerned with my wifes time. Even with papers books etc, there can be a lot of waiting around. Then if I was called for tests, there was more waiting to be done. That gave me more pressure than when I was on my own! ( below pic, not me, for new readers!)
However I realised that I was being selfish, as Sue actually wanted to come with me, and support me, during what were in honesty, some very difficult meetings. She thought that I was trying to shut her out. I thought I was trying to save her time! As usual, she was right. The fact that Sue was with me during my early meetings, was good, as we could discuss what was said, and sometimes I hadn't fully understand what I was told.Sue became the proper part of the decision making process that she should have been.
This changed, however during my regime of chemotherapy. Sue came to the first one, to see how it went, but sitting there for four hours became rather tedious, and we both decided that I would be better off on my own.I came with my constant companion for hospital visits, my Ipod, and spent my time catching up with the latest music.
During chemo, there were many people on their own but also several with friends /family. I did wonder if the people on their own, were like that by their own choice.Following the chemo, came my stem cell transplant, and six weeks in isolation, then a continual period of treatment as an inpatient and outpatient, right up till now.
The support that I have received from my family and friends has been fantastic. It is a very difficult journey for both parties. There were times when I was so exhausted, I just didn't even want to pick up my phone, let alone see people. However I also understood that everyone wanted to offer their support to me.
At times, I struggled with visitors, even Sue and my boys. There were many occasions were I didn't feel that I was going to make it through the process. Daily, my results were getting worse. I couldn't face telling them. I worried that if I told them the truth about how I was feeling, they would stuggle, and we would be in a downward spiral. It was ok for me as I had a fantastic team of clinicians around me, but who was there to look after them?
I spoke to a professional member of the clinical team about this and he explained that I was using a lot of energy that I didn't have, pretending that I was fine. He suggested if I told the truth about what I was feeling, then I would have more energy to fight my disease. In the end, I was able to do this and he was right.
Without the support of my family and friends I don't think I would be alive today, as they gave me a purpose. There were so many things that occured that I couldn't have coped with on my own. even today there are still things that I need help with.
This made me think about people who are not as lucky as me.People who are on their own. How do they cope with the physical and mental torture that is a cancer diagnosis? Even getting to and from the hospital. Cooking and daily tasks, let alone the psycholigical release that can happen when talking about your issues with others.
When you are stuck in hospital for weeks on end, a welcome visitor can be a positive distraction from the daily tedium. what if there is no one to come? There were days when I didn't feel like having visitors, but at least that would have been my choice to make! I imagined, finally getting through your treatment, then going home to an empty house. How difficult that must be. No one to share your highs and lows with.
Even if you don't have a long term illness, it must be very difficult to live life without family or friends. Most of the truly meaningful experiences in our lives only mean something when they are shared!
Did you find the same as me? It would be great to hear your experiences.
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