What you won’t see/ painful handshakes 

This past Sunday I preached at my home church. When I volunteered to do it two weeks ago, it seemed like a good idea. I had not considered the impact post-radiation issues would have on my ability to focus on study and writing or what would be involved I  preparing for the service itself.

What people didn’t see at church was the seeping mess I had to clean off my underarm area before I could even consider getting dressed, or the hassle of coming up with a top to wear that was appropriate and was least likely to show seepage or staining that I knew would be continuing throughout the service. There was cream to apply to the non-open areas when the burning is making the skin hot and super dry as well as medicated cream for the open area. In order to wear a top at all the last area needed to be covered with a non-adherent dressing. There was no way to secure this as the skin around was also damaged. This along with Advil and Tylenol and I was ready to go.

After service it is traditional for the person who preached to stand at the back of the church to meet and chat with those in attendance. I love this part of the morning! What I hadn’t thought of, and hopefully people didn’t notice was that a nice firm handshake turned out to be quite painful. 

As of today it has been a week since I finished radiation which sounds like a week past the struggle, but that is far from the truth! By Saturday I was at my wits end as to what was the best thing to do for wound care. Was it better to leave it open to the air (which meant no clothing and my arm up in the air like a wing or something) or should I try to find a way of covering it, and with what? Tom and I have been to almost every pharmacy in Fredericton trying to find the items that had been suggested to us for skin care. Most places didn’t have what we needed, some didn’t even know what we were talking about. How did the hospital think I was supposed to do this on my own?

On Monday Inlucked out and got in to see my family doctor and she immediately set me up with an appointment with a wound care nurse. When I finally got in to see her yesterday she explained that the reason for the level of pain where my skin has broken open is that it exposed the layer with all the nerve endings. Rah!

I showed her the directions I had been given and she was surprised at what they thought people could handle on their own. Then she cleaned it up and put a dressing on it that is pretty similar to what I had for the mastectomy. It needed to be so large to keep the whole area away from friction as well as having healthy skin on which to anchor it. The relief from this was awesome! Not only that, but the relief from the pressure to go it alone was significant. The dressings can stay on up to three days and I can go to the clinic for changes. I am not looking forward to the tape removal, she warned me to take stronger pain mess for that, but overall things ar better.

Some other things people in my cancer circles have mentioned that people don’t see include; 

  • the amount of energy they expend to get out
  • the fact that, while they may seem perky for the duration of an event, it may be the only time they are active for the whole day
  • some people feel their illness is somehow dismissed when people say how good they look (I haven’t minded this at all so far, keep the compliments coming)
  • the level of their fatigue

I have put links to two pictures below. I didn’t put them in the post itself because you may not want to see 
The first is of my skin before I went for help, it had progressed. https://www.flickr.com/gp/70909221@N02/zj56Vr

The bandaging from the wound clinic. https://www.flickr.com/gp/70909221@N02/4E002P

An Aha Moment

bitmoji158916047When I discovered that I never really understood!

I went to visit my best friend the other day and came to the realization that while I thought I understood what she has gone through in her life, it is not until now that I can really understand.

My friend, not yet 55, lives in a nursing home. She has advanced Multiple Sclerosis and it has been many years since she was able to work, walk, drive, etc.  She has dealt with so many losses due to MS as well as struggles in terms of services and financials.

I remember  all the hassles she had with forms for disability coverage when she was first forced to stop working. I was reminded of it while filling out forms for salary continuation and had a new understanding of just what she dealt with. Given the “protestant work ethic” which was ingrained in our generation, it is demoralizing to write on paper that you are unable to do your job!

Another thing I have realized we now have in common has to do with people’s automatic reaction to us. Her disability has almost always been visible and I remember seeing people’s various reactions to her when we were out shopping or for a meal. While some people seemed uncomfortable, the main reaction seemed to be pity.

I didn’t really think of cancer as being visible, but the fact that I have almost no hair seems to work like a neon sign over my head blinking “cancer patient!” I remember the first time when a woman came up to me before yoga class with a sympathetic look on her face and told me that she understood, she had gone through chemo too. I felt really uncomfortable that day, somehow like my privacy was violated.

Most of the time I don’t think about cancer…though I guess it may seem like I do based on writing about it. So there I am in a store thinking about what I need or whatever, make eye contact with another shopper and there it is, the sadness, pity, or whatever. The, “Oh, you have cancer!” look flashes across their faces and at first I wonder what is wrong. Do I have something on my face, or in my teeth? Then I realize what it is, oh yeah, cancer. Thanks for the reminder!”