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!

Making the mould/ marking for radiation

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!

In the radiation waiting room

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.

Radiation Day One

Yesterday I had my first radiation treatment and all went well.

Key points;

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.

Today I become a rebel!

I am sitting at the Saint John Regional Hospital right now, killing time before my appointment for marking and prep for radiation therapy. I will be joining the tattoo crowd!

Along with the tattoo they will be making a body mould which will ensure that my body is in the exact same position for each of my 25 treatments. I’m quite curious about the process for this.

My appointment is in ten minutes, I’ll fill you in when we are done.

OK, so it has been a few days since I wrote that intro. All went very well and I now have four tiny tattoo dots. My daughter said freckles and that is pretty much what they look like. It was a very interesting process.

When I first got there I had a form to fill out and then I had my picture taken for an ID. Next was changing into a lovely hospital gown, high fashion for sure.

The marking etc took place in a CT scan room and began with appologies about the cold. The CT scanner gets very hot when it spins and needs a cold room to avoid overheating. Two nurses, a student nurse and a tech did everything and made me as comfortable as possible through the process.

There were green laser lines in a T across the room which I assume guided them in positioning me. The bed for the scan had an odd looking apparatus with a metal base with a bump around halfway up, and a series of red padded arms at the top. It turns out they don’t make a mould, at least not for irradiating the chest. Each part of the apparatus was adjustable, and, like an optometrist’s set up, each minute change they made could be recorded in a series of letters and numbers. This allowed them to get me in the position they needed and be sure that each time I go they will be set precisely the same.

It all took quite a while. They got me to lie down and adjusted my height by moving the bump to show where my bum needed to be. Then there was changing the arm holders so that, with both arms above my head, I would fit in the machine and put the right side of my chest in the necessary position.

Once that was done, they put a wire tape along my scar, and used marker to make dots on my sides and on my chest. These were temporary markings for aligning the scan. Then they put a sort of jell pad, they call it a bolus, over the area for radiation. Apparently, this pad acts as a layer of tissue.The radiation doesn’t reach full power right at the surface, so this acts like extra layers of skin so that they can get near the surface most effectively. This was positioned very carefully and then taped in place, checked, adjusted, and retaped.

When all this was done, I had a CT scan which they will use to plan the treatment. After they knew that the marker spots were definitely in the correct spots they cleaned the areas, dropped on some ink, and with a pin made one poke in, wiggled it a bit, and poof I had a tattoo! In the end, I had four, and it really didn’t hurt even as much as a blood test or an IV.

I am feeling pretty good about the treatments overall. I am not thrilled to need them, and a bit worried about how my skin will react. I do sunburn quite quickly. We will see how it goes. I have the cream they recommended and if that doesn’t work there are things they can prescribe. With the prayers of many people, and mine, things have gone well thus far and I know things will work out.

Don’t mow the lawn or wallpaper the bathroom.

20170719_112512After my unilateral mastectomy (one breast removed) last week I went home with a big dressing on my chest and underarm, two drain tubes, and two pages of post-op instructions from my surgeon. I couldn’t help but laugh when I read the instructions for activities of daily living!

My biggest laugh came from the idea of resuming regular activities such as household chores…the joke is that I don’t really do much of that normally. It is really easy to return to regular activities when that only involves watching tv, playing Pokemon, and using the computer.

A couple things I really liked from the instructions are;

“The psychological recovery can be much harder, and you will get mentally better faster once you realize you are not ‘sick’.” This one was not really funny but definitely true. I don’t know if I am psychologically recovered or not, but other than some discomfort which seemed to be more due to the tape on the dressing and the drain tubes than the surgery itself, I am definitely not sick from the surgery.
“If there is a drain in place, you must avoid excessive use of the affected arm as it can result in increased fluid production and prolonged drainage. (i.e. don’t mow the lawn or wallpaper the bathroom).” This was primarily funny because of the unlikeliness of me exercising excessively, mowing the lawn, and definitely not wallpapering any room in the house.

One week later I have no more dressings, just the skin damage the tape does to me, no more drains, a line of paper tape over the incision site, a multicoloured bruise, and a new asymmetrical look. Today I have an appointment to go over the pathology report and then I’m going out with a good friend.

Tell Me Face-to-Face!

bitmoji767993325In 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.

On The Road Again!

Hi all!
004I am now finished my chemo treatments for now and so plans that have been screwed up by delayed treatments and things have moved forward. Thursday you would have found me behind the wheel on the highway between Fredericton and Vaudreuil-Dorion with my younger daughter in the passenger seat trying to sleep. It was great! I love driving and was glad to discover that two weeks after my last treatment I was feeling well enough to drive for 9 hours and didn’t need to go directly to bed when we arrived. The best part of this is that I am getting a chance to visit with my eldest sister and brother whom I have not seen since before Christmas.

So, treatment is over. After two weeks one of the first things I did was have a mani/pedi which was a real treat and I couldn’t have shellac nails while in treatment due to the strong chemical required to remove it. I’m looking forward to reduced chemo brain issues, though I gather that will take some time.

I met with my surgeon early this week and was surprised, and I think pleased, to hear that she doesn’t think I need to have the planned mastectomy. Because we aren’t going for “a cure”/ because the cancer has already moved beyond the breast, apparently it is no more likely to return in the breast than any other place in the body and so the benefit of the surgery is questionable. I am going to have an MRI to see if there are active cancer cells in the area or not and then the decision about surgery will be made. Either way I will be beginning hormonal treatment in a few weeks which is meant to slow regrowth.

It is interesting to be in this place with the cancer. When I was diagnosed originally I couldn’t wait to get rid of the breast. Now I see it as a surgery, a chance for complications, potential infections, and am quite pleased to possibly avoid it.

That Ubiquitous Pink Ribbon

Capture

Ah, the pink ribbon. The symbol of breast cancer as a sign of support and fundraising. It is everywhere and on everything from clothing to tools, chairs, phone covers, memory sticks, vacuum cleaners, car batteries, watches, jewelry, dog leashes, and even tire wheel rim valve stem caps. I have long supported breast cancer research to some extent, but not usually by buying pink ribbon things. I questioned, and still question, whether it was more useful to buy a cute shirt with a pink ribbon thus giving a portion of the cost to the foundations, or whether to just give the whole cost of the cute shirt and stick with the clothes I already own. 

I think we all have some sort of reaction when we see these bright loops of ribbon, or their facsimiles, whether we smile ; because they are pretty, because treatments have advanced so far, or because we know someone who has survived; or if our hearts sink as we think of friends or family members who are suffering or have died from the disease. 

My reaction has changed now, not surprisingly. I am actually quite torn. My initial reaction seems a bit visceral, as if I’ve been punched or something, especially if I see them somewhere I’m not expecting like on a sign as I’m driving somewhere. I understand that it is meant as a sign of hope, a sign of strength, a symbol of survival and those are all good and much as I previously reacted. Now I am reluctant to buy anything with the pink ribbon as if it has now become an identifier or some sort of team logo that has been forced upon me.

Don’t get me wrong, I don’t think anyone is forcing anything on me. It is the disease that has forced itself into my life. I realize that lots of people who do not have breast cancer like to show their support by buying, using, and wearing pink ribbon items and there is no reason why anyone who doesn’t know me, or doesn’t read my blog, would bother to think, “Ooh, look, she is wearing a pink ribbon. She must have breast cancer!” any more than I ever have when I have seen people in the pink. 

Yes, these are the weird things I think about. Maybe after this round of active treatment is done I will feel more comfortable with the ribbon. In the meantime, stay tuned for the next navel-gazing ramble.

If you are interested in pink ribbon items that are reputable and monies go to the Canadian Breast Cancer Foundation check out this link.