Part 1 - Some Background
This morning around 6 AM I will once again head to the Clinic for my brain radiation treatment and it is my last treatment. So in a few short hours another battle with cancer will be over. For that, I am very thankful.
I've had other battles with cancer, but none as scarey as this one with brain cancer. Even though I knew my cancer would eventually go to my brain, hearing that diagnosis totally freaked me out. It took me a couple of days before I could even tell anyone. I finally told a couple of dear friends because I got to the point where I just had to tell someone and I felt bad about doing that. I felt like I was "dumping" on them, but they didn't see it that way and came over to comfort and help me. That was the first of many visits by them.
As soon as my Oncologist got the results from my brain scan he pulled together a group of doctors and within days they had devised the best treatment plan for my situation and it was brain surgery followed by 15 low dose whole brain radiation treatments. He also scheduled appointments for me to meet with all of the doctors all on the same day and I knew I needed someone with me during these appointments even though I had always gone alone for others. The friend I asked to go agreed and I'm so very thankful she was there.
I let my family know what was going on and got a big surprise - my brother and his family came up to see me just before I went in for surgery. Also, my aunt offered to come stay with me when I came home from hospital and I accepted her offer. Hospitals like it when there is someone for you at home and I think they tend to release you sooner. Considering how I am when in the hospital getting out quickly is best for me and there was an added bonus in having my aunt come stay with me. Since she was my Uncles second wife after a late in life divorce and our families were no longer getting together for holidays and stuff, we really didn't know each other so her coming to stay with me gave us an opportunity to get to know one another.
My surgery went well and I was home after only 2 days in the hospital. So I let my aunt know and she came up from Columbus and was at my house when I got home. It was great having her here and I know my recovery went better because she was here. She stayed for about a week and I was feeling strong enough by then that we decided it would be okay for her to go home. The day she left I had my first visitors and that was nice. I didn't expect anyone to come see me while I was in the hospital because I wasn't there very long and I just figured folks stayed away when I first got home because I aunt was here.
I really enjoyed the visit from my friends, we went out to lunch and then they came back to my house and we chatted for awhile. The next day I had an appointment with my primary care doctor for my monthly B-12 shot and decided to run some errands while I was out. Evidently I over did it because the next day I was so weak that I called my aunt and asked her to come back and she did for about another week and that was perfect. After she left the second time I was more careful about how much I did each day and had a couple more visitors.
It was so nice when I had visitors and after 2 months I'm a little surprised and disappointed in how few visitors I've had. Those who did come, didn't surprise me because they have been here for me the whole time I've been recovering. They actually came to see me more than I expected but it was always great to see them and their visits really helped in my recovery. The surprise and disappointment in the lack of visitors comes from me thinking some of my other friends would come visit, but they didn't. I know people are busy and it can be hard to find the time, but it still hurt a little bit that folks I thought would visit, didn't visit.
Not only is it nice to have a visitor now and then, but at least for me, it eases that feeling of being so isolated. While I was doing well with my recovery and my radiation treatments, it really wasn't possible for me to go out on my own because I just wasn't strong enough for that yet and I just feel so isolated and even worse - trapped in my own home. At least for me there's nothing worse than feeling trapped and not being able to go out and/or do things you really want to do because you just aren't up to par and I've been feeling this way for a long time due to the fatigue I'd been experiencing long before my surgery which was from my last radiation treatments over a year ago.
A couple of times I tried to rides to different things that were going on and sometimes that worked and sometimes it didn't. Either I ended up feeling too weak/tired and had to cancel with the person that was going to take me or no one offered to give me a ride. I've given up on asking for a ride for now because it's just impossible for me to know in advance if I'm going to be able to go and even if I am able to go, if I'm going to have the energy to stay the duration. I don't want someone to leave an event early just because of me.
With my current radiation treatments ending today it won't be long before the fatigue kicks in. I have a slight idea of what that will be like which is basically the same as what I've been experiencing from my radiation treatments over a year ago. I just hope my fatigue isn't worse since I really wasn't over the fatigue from the last time. I do plan on seeing my palliative care oncologist and working with him to find a way ease the fatigue. I was working with him on my fatigue prior to my surgery but we hadn't found the right med. So I'll go back and we can pick up where we left off. .
I've had other battles with cancer, but none as scarey as this one with brain cancer. Even though I knew my cancer would eventually go to my brain, hearing that diagnosis totally freaked me out. It took me a couple of days before I could even tell anyone. I finally told a couple of dear friends because I got to the point where I just had to tell someone and I felt bad about doing that. I felt like I was "dumping" on them, but they didn't see it that way and came over to comfort and help me. That was the first of many visits by them.
As soon as my Oncologist got the results from my brain scan he pulled together a group of doctors and within days they had devised the best treatment plan for my situation and it was brain surgery followed by 15 low dose whole brain radiation treatments. He also scheduled appointments for me to meet with all of the doctors all on the same day and I knew I needed someone with me during these appointments even though I had always gone alone for others. The friend I asked to go agreed and I'm so very thankful she was there.
I let my family know what was going on and got a big surprise - my brother and his family came up to see me just before I went in for surgery. Also, my aunt offered to come stay with me when I came home from hospital and I accepted her offer. Hospitals like it when there is someone for you at home and I think they tend to release you sooner. Considering how I am when in the hospital getting out quickly is best for me and there was an added bonus in having my aunt come stay with me. Since she was my Uncles second wife after a late in life divorce and our families were no longer getting together for holidays and stuff, we really didn't know each other so her coming to stay with me gave us an opportunity to get to know one another.
My surgery went well and I was home after only 2 days in the hospital. So I let my aunt know and she came up from Columbus and was at my house when I got home. It was great having her here and I know my recovery went better because she was here. She stayed for about a week and I was feeling strong enough by then that we decided it would be okay for her to go home. The day she left I had my first visitors and that was nice. I didn't expect anyone to come see me while I was in the hospital because I wasn't there very long and I just figured folks stayed away when I first got home because I aunt was here.
I really enjoyed the visit from my friends, we went out to lunch and then they came back to my house and we chatted for awhile. The next day I had an appointment with my primary care doctor for my monthly B-12 shot and decided to run some errands while I was out. Evidently I over did it because the next day I was so weak that I called my aunt and asked her to come back and she did for about another week and that was perfect. After she left the second time I was more careful about how much I did each day and had a couple more visitors.
It was so nice when I had visitors and after 2 months I'm a little surprised and disappointed in how few visitors I've had. Those who did come, didn't surprise me because they have been here for me the whole time I've been recovering. They actually came to see me more than I expected but it was always great to see them and their visits really helped in my recovery. The surprise and disappointment in the lack of visitors comes from me thinking some of my other friends would come visit, but they didn't. I know people are busy and it can be hard to find the time, but it still hurt a little bit that folks I thought would visit, didn't visit.
Not only is it nice to have a visitor now and then, but at least for me, it eases that feeling of being so isolated. While I was doing well with my recovery and my radiation treatments, it really wasn't possible for me to go out on my own because I just wasn't strong enough for that yet and I just feel so isolated and even worse - trapped in my own home. At least for me there's nothing worse than feeling trapped and not being able to go out and/or do things you really want to do because you just aren't up to par and I've been feeling this way for a long time due to the fatigue I'd been experiencing long before my surgery which was from my last radiation treatments over a year ago.
A couple of times I tried to rides to different things that were going on and sometimes that worked and sometimes it didn't. Either I ended up feeling too weak/tired and had to cancel with the person that was going to take me or no one offered to give me a ride. I've given up on asking for a ride for now because it's just impossible for me to know in advance if I'm going to be able to go and even if I am able to go, if I'm going to have the energy to stay the duration. I don't want someone to leave an event early just because of me.
With my current radiation treatments ending today it won't be long before the fatigue kicks in. I have a slight idea of what that will be like which is basically the same as what I've been experiencing from my radiation treatments over a year ago. I just hope my fatigue isn't worse since I really wasn't over the fatigue from the last time. I do plan on seeing my palliative care oncologist and working with him to find a way ease the fatigue. I was working with him on my fatigue prior to my surgery but we hadn't found the right med. So I'll go back and we can pick up where we left off. .