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

The bell gets rung but the burning will go on!

Today I will have my last radiation treatment on my chest area and I will ring the bell to celebrate finishing 25 treatments.
Up until last week the treatment was pretty easy to handle. There has been no immediate discomfort from being ‘zapped,” but rather a cumulative effect of a worsening sunburn. Last week though the skin under my arm broke open. It is both more painful and a but gross. While there will be no more radiation, apparently the damage will continue to progress for around a week. 

That being said, today is indeed a time for celebrating!

Woman on fire!

bitmoji-673346187It seems a little hard to believe right now, as I am huddled under my electric blanket with a fleece throw over my shoulders, but I have every reason to believe that tonight I will once again become a woman on fire.

It is chemo day. If the experience of my other two treatments holds, that means that this evening, and especially while I am trying to sleep, I will overheat. If you are familiar with the tv show Dr Who then you will know what I mean by regeneration. For those who don’t, it is when the Dr changes to a new body. Anyway, that’s what I feel like. Like heat, if not flame, is pouring out of me with no sign of stopping. Watch this little clip of River Song regenerating to see what I mean.¬†Doctor Who – Melody Pond Regeneration

So, there is no screaming, and I don’t turn out to have a different body at the end, but the sort of blow torch extremities part, that is pretty accurate. I must say, I was never more glad that I have lost my hair than I was the first couple nights after my last treatment! I have taken some steps to prepare this time. I have actually broken down and spent the seemingly ridiculous amount charged for moisture wicking pajamas, most often marketed to women in menopause. I have also searched for tips, like take a hot bath before bed. I know! Hot!?! Apparently it tricks your body or something. It is like the thing about drinking hot tea in the heat, which cools your body. I don’t get it, but I’ll try it!¬†bitmoji-729608686

Of course it is possible that I will not have the same reaction to the treatment this time and the expensive pjs will just be a nice addition to my sleepwear collection. That is one of the other joys of chemo, I’m told, you don’t necessarily have the same symptoms every time, even when the drug is the same. In the meantime, here I sit as my normal chilly self contemplating life.