On my last day of radiation on my rib the radiation therapists offered to take some pictures which would have gone nicely with some of my posts.
First is this picture of me holding an unmoulded body mould so you can see what I was talking about. In the original post I just used a picture of the ones they had stored on a rack.
Next is a picture of my mould which I layed in for 5 treatments.
Next is one of me and the machine for the stereotactic treatments on my rib. I hate the pic of me, but check out the machine.
Did you notice the cool ceiling? Each room had one; one spring, one summer, and this one for fall.
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
If you remember, I earlier wrote about my marking appointment for breast radiation when I thought a body mould was going to be made and it turned out that they just used a support frame with measured placements for consistent positioning.
Last week I had an appointment for marking for radiation on my rib. Gone was the frame, and instead the bed was covered by a sort of cushion with a nylon cover. It was a bit like a semi-stuffed bean bag. Once they had me in the position they needed they sucked the air out of the bag and it gathered more closely around me and became rigid. It is now a mould of my body which I will lie in for treatments.
The best part of this is that when my treatments are over, they will let air back in, clean the surfaces, and hang it up to wait for the next patient. Brilliant, reusing the mould rather than breaking it!
I am almost half-way through my radiation treatments and it occurred to me that the waiting room experience may be unique to this area. When you go to your family doctor there is usually lots of time to wait and lots of other people in the room. If there are 20 patients waiting, they may all have a different issue for the doctor. There is little sense of shared experience. This is the same at almost any type of waiting room. Even in the general oncology waiting room you know that everyone is there about cancer, but you don’t know what stage they are at or what will be happening when they are called in. This is not the case in the radiation waiting room.
At least at the Saint John Regional, each radiation machine has its own waiting room. There are chairs, a tv, a water cooler, and a little fridge with the Ensure name and logo and full of various ensure products. Sometimes the tea cart comes by with coffee, tea, and juice on offer.
People usually arrive in pairs one the patient and their driver (most people have a family member or a friend go with them to their treatments for company as well as to drive). The patients go by the door and drop their schedule in the slot and then go change into johnny shirts. And then the waiting begins. Some days they are exactly on schedule, so there aren’t many people there. You can tell things are running behind when the room is full! Sometimes it is very quiet and at other times conversations get going, especially if things are behind.
You get so you know the folks who are being treated on the same machine. In this room, you know that each person who is a patient will be called in turn. They will walk down a hallway, around a corner, and into the room with the radiation machine. You know that each person will find the threatment bed set up specifically for them. They will be settled into position, reminded to remain still, and then the technicians will all leave the room. They will be alone with the machine. As they lie still the machine, and sometimes the bed, move around and periodically the there will be a click as the “beam on” sign lights up and the machine hums. They click off together and positioning begins again. They will know when the treatment is done when they hear the technicians talking as they come down the hall and into the room.
In the waiting room you see them come out and head off to change into their own clothes and then they appear back often with an expression of accomplishment, and tell their driver that they can go. If it was their last treatment they will have rung a bell and will have a big smile as they celebrate, hoping not having to come back. When my treatments are done, I will be the one hoping never to return. I will likely never see those people again, but I expect I will remember them as they have shared in this experience with me.
Yesterday I had my first radiation treatment and all went well.
The room was much warmer than the CT room.
I still got to have a warm blanket.
The ‘bed’ was all set to match the last time.
*No pain! In fact, nothing touches you at all other than the bolus.
They can even tape the bolus without tape on your skin!
They were playing music which you could easily hear over the machine.
Your whole job is to lie still and breathe.
A good chance to pray for everyone on your prayer list.
In case you aren’t following along, I had recently received results from tests and from the tumor board meeting over the phone from a receptionist and was totally confused. I didn’t feel I understood anything from the news as it didn’t mesh with anything I had heard recently. This is not how patients should ever hear information about their health or plans!
Prior to the tests I was told I would have a meeting with the surgeon, who ordered the tests, after the tumor board meeting. That is what I expected and then to just hear over-the-phone basics was a shock! The next I was told to expect was a call from the radiation oncologist’s office to book an appointment. Since I had previously been old there would not be any radiation until far later in my journey, I was a bit freaked out! They called to give me an appointment for yesterday, which they later changed to next week.
On Wednesday I had my appointment with the medical oncologist which had been booked the day I finished chemo two months ago. It was originally to get started on hormone treatment, Tamoxifen. Tom and I went in with no idea what to expect and with memories of our first appointment with her when we were told that I had stage 4 cancer and would not be treated for a cure, but just to manage the cancer.
Without boring you with tons of details, in this face-to-face meeting she was able to explain the results, the plan and the rational in about ten minutes and we left much relieved! The board decided that since the chemo went so well they would switch gears a bit and continue aggressive treatment. So now I’m back to the mastectomy and chemo plan with an additional radiation treatment in Halifax which will directly attack the spot on my rib. When all that is done I will then start hormone treatment with a new drug which has recently been approved. The procedures may be scary, but it is action and that feels good.
So much stress and fear would have been totally avoided if the receptionist told me nothing and just set up an appointment like I was expecting when I called.
I have been working to catch this blog up to my present day, but today I am going to jump forward to today for a moment. Today I have an appointment with the doctor who will be my radiation oncologist. It seems odd to be meeting him first as it is my understanding at this point that I will be having chemo first.
There is a lot I don’t really understand about how the systems work, or what is regular timing. I was told by both my family doctor and my surgeon that things would be moving quickly and yet it has been a couple weeks and I am still not scheduled for all of the tests that have to be done before meeting the chemo oncologist. Knowing that it takes a week or more to get results from tests it is hard to imagine getting started attacking this thing before December. I lack perspective partly since I have not had any major health issues before.
Ok, so.I’m here in St John for my appointment. We were early so we went to the cafeteria for lunch. As we were walking past all the signs for radiation and cancer treatment I said to Tom, “I vote for a no-thank-you serving!” It is all just a little too real now!
The waiting room is nice and every other person has the same yellow wrist band I have. It isn’t a club I would have chosen for sure!
OK, the appointment is over. I’m glad I have written down a list of dates for all my appointments and tests so far as the doctor asked me for all of them. He went through that, did a breast exam and then went through things with us. He says it is T4 (Staging & Grading) which means I won’t qualify for the trial treatment which doesn’t irradiate under the arm. He agrees with my surgeon that he will be seeing me after chemo and surgery are done. He expects me to need 25 treatments which is 5 weeks of radiation each week day.