Radiotherapy

I began radiotherapy on Wed, July 25^th. I will have 25 days of radiotherapy, every day for five weeks (except weekends).

The first day, a nurse showed me the ropes. I have a pigeon hole where I store my over-washed, blue hospital robe and ever-so-attractive white hospital gown. It is here I come every day, collect my gear, change in a side room and put all my belongings in a little plastic carry thing; the type you see at Foodland.

So far, I haven’t had to wait, there has been someone waiting for me once I’m changed. They escort me into the room where the machine lives.

The Machine

I’m in awe of her! (I don’t have a name for her yet and am happy to accept ideas.) She’s a marvel of engineering and technology. The pictures below are similar models and illustrate how she rotates around me.

The folk in these pictures look way too comfortable. I have to be positioned with my arms over my head in stirrup-like holders. The staff fiddle and pull and push until I’m in exactly the right position. I am aligned with my tattoos, lasers, rulers and the machine itself to within a millimetre.

Once in position, the process only really takes a few minutes. There’s a thick skin-like mat that is placed on my chest which has something to do with the depth of the radiation. I go off to my safe place and relax until I hear, ‘Deep breath Kristina’. I take that deep breath. ‘Perfect. And hold…’ Ten or so seconds later I hear, ‘Breathe normally’ and so I do. This is repeated a number of times while the machine turns to the angles and measurements it’s designed to, for me.

When it’s all over, I have been in the same position, as still as possible, for between 30 and 50 minutes. Now comes the hardest bit of the day, getting up. My shoulders seize up in that position for that long and it takes me a little time to get my arms to my side. They hurt so I can't use them to help sit up. There is also a ledge under my bottom to stop me from sliding which makes sitting up really difficult. I get a bit of help from the staff who use my gown to help me sit up. Chemotherapy and surgery have left me without much core muscle strength and I’m embarrassed by it. But that’s the worst of it.

After the treatment, I am fitted with film, which helps keep moisture and oils in my skin and promotes healing. It doesn’t seem to stay on me for more than 24 hours so over the weekend, I lathered the site in Sorbeline as prescribed. I learned today that I'm not supposed to get it wet. I'll try keeping the water off it and see if it lasts a bit longer. 

I'm lucky to be able to stay with a friend nearby a few days a week. The daily commute would be too exhausting. 

Four days down, 21 to go.

I’ve got this.  

https://thebreastcancerwarrior.wordpress.com/2013/05/30/my-journey-through-radiation/

http://pinkrepublic12.blogspot.com/2016/04/the-only-radio-therapy-machine-in.html

CURABLE

It’s official. All specialists are now convinced my liver is not involved in any cancer and therefore I am CURABLE. If the liver was involved I would be ‘treatable’ but not curable. It is my favorite word and I cannot tell you the difference it makes to my mental health.

(Exhale)

My oncologist started me on hormone therapy. I have one ‘pellet’ injected under my skin just below my belly button every month (yes, ouch!). I call it my slow release fertilizer. The other is a tablet that I have to take each day. These drugs will keep progesterone and estrogen from being produced as this is what fed my cancer.  

So now I have to prepare for stage three; radiotherapy.

Last week I saw the radiation oncologist for the first time. He will see me once a week when I get started. He went through the procedure with me and explained everything. I was worried about my skin burning after seeing a friend suffer. He explained there is a film called ‘Mepitel’ they will put on me each day to prevent the burning. I will also have to lather on sobeline cream three times a day. The main issue with radiotherapy is fatigue from the daily procedure. Five weeks, every week day will take its toll.

To further prepare, I was booked for a CT scan. As my cancer was in my left breast, I have to practice “Deep Inspiration Breath Hold” (DIBH) technique. Basically, I have to take a deep breath and hold it while I have the radiotherapy dose. This technique helps to ensure my heart isn’t affected by the radiation. The CT folk (a practitioner and an assistant), put me in the right position, lying on my back with my arms supported over my head. I was glad I’d been doing my exercises since surgery and had good movement. It was also a good thing I was feeling happy and relaxed because it’s a daunting and confronting thing to be laying in that position topless, with strangers, albeit strangers who were extremely professional and friendly. Once I had been carefully positioned and they had drawn some markers on me, I had to practice taking a deep breath and holding it for 20 seconds. Easy. Apparently I was consistent so they tattooed three dots so the position will be the same for each dose. I have a dot under each arm and one on my breastbone. They look like blackheads really, nothing exciting at all.

I have some weeks to rest and recover from chemo and surgery before radiotherapy starts. This time is so valuable to me. I’m well enough to start going for walks again and aim for 5 days a week. My main side effects at the moment are aching joints. This is not unusual after chemo and is made worse by my instant drug-induced menopause. Panadol Osteo is my friend.

I struggle emotionally when I look back over this time of cancer so am still staying in the present as much as possible.

At last I can smile when I dabble with my thoughts into the future. 

Curable! Wow! J

Pathology, healing, counseling and oncology hope.

Eleven days after surgery, I visited my surgeon, had the stitches out and got the pathology results. They weren’t great. 6/16 lymph nodes were still involved in cancer when they were tested. The surgeon delivered the news like it was the end. She depressed me and I cried. I wasn’t even sure what it all meant but she made me scared with her somber tone. All that horrible chemo to no avail? It didn’t make sense to me. I felt ripped off and angry. 

On the way home questions poured from me (poor Lynton):

·      Maybe 16 nodes were involved at the start and the chemo did work. (That’s not a question!)

·      What percentage of women with my type of cancer have similar results?

·      What about the immunotherapy I’ve heard about? I’m not giving up.

·      You took them out and cut off my breast, maybe you got all of it?

With a few recent hits, I felt like I needed to offload to a counselor so I booked a session with someone at the Cancer Council. She was great and understood my overload moments really well. I explained how I’ve learned to stay present and compartmentalize each hurdle but sometimes I get thrown an extra load and overflow. She made me feel like I was coping really well and admired my resolve. I’m going again to learn some more techniques.

Last week I had an ultrasound on my liver. The idea was to see if the little spot of concern in there could be seen with ultrasound and then at a later date, biopsied. I could clearly see the ‘spot’ when the radiographer found it. I have never been concerned about this little 12mm dot in my liver. My liver function is fine and the spot hasn’t changed throughout chemo.

Today I went armed with questions to my oncologist. Thankfully I saw Jacqui again. The last two times, I’ve seen her intern and he hasn’t had many answers for me. She was wonderful and pre-empted my questions. Apparently 6/16 is good for cancer of my type. It’s definitely NOT the end of the world. There are many options.

The big one was that the radiographer did not think my spot in the liver was cancer! Jacqui explained that he thought it was a hemangioma, a benign tumor made up of blood vessels. Another complication is that it is very close to my bowel. If they try to biopsy, they could perforate my bowel or cause too much bleeding in my liver.

So we monitor. If it is actually cancer, I’m guessing it will grow and eventually cause me some grief.

My next specialist appointment is next week with the radiotherapist to discuss the action plan for my radiotherapy. The week after, I’ll see Jacqui again and start on either two or three different medications (Letrozole, Goserelin and maybe Palbociclib or similar). Palbociclib is an immunotherapy trial drug ($5,000 month – I get it for free). If there is any metastasized cancer, it will be hit by this drug. As there are questions as to whether I have any metastasized cancer, I may not get to go on this medication. I apparently have to start it at the same time as the Letrozole.

I left the Lyall Mc with hope and a spring in my step today.

I’ve got this!

X

Kristina

Mastectomy Day

I arrived at the hospital at 8.30am and before too long was shown my room where I waited.

It wasn’t until after 11am that they came and got me and walked me around to recovery where was given a sedative. I had been told I was to have a nerve block, which would cause numbness post surgery and prevent pain for up to 24 hours. The anesthetist explained the procedure to another doctor as he used ultrasound to find the right spot, injected me with a local and then the other drug into my back. It’s like an epidural but outside the spine and around a nerve. Deb, the breast care nurse had promised to see me and I wondered where she was. Just when I thought it was too late, she popped her head over the curtained area where I lay and shone her loving smile my way. I was glad for the sedative as a few slow tears rolled onto my pillow. I felt sad, scared but assured that this was the only option.

A few days prior, I had spent moments in the mirror with both hands over my diseased breast, trying to imagine what it would be like without it. It was both overwhelming and a relief at once. All in one big step, Pauline would be gone and I would be two thirds of my way through my breast cancer treatment program. But I would be without a breast.

All of a sudden, my surgeon was there with her warm smile and she held my hand as we made our way into the operating theatre and I transferred to the table where it would all happen. Before I knew it, I was out.

Back on the ward, I awoke periodically to visits from various nurses and doctors. At some point I remember taking a peek at my missing breast and felt amazed at how flat and neat it looked. As promised I had no pain.

It was time to go to the bathroom at around 9.00pm. Upon return, I sat in a chair and waited for the nurse to remake my bed. A huge wave of indescribable nausea mixed with heaviness descended over my whole body and as I shrunk forward in the chair, I said, ‘I think I’m going to faint’.

Code Blue was called and apparently within no time, a large team of fast moving doctors descended on the room. They moved the bed closer to me so I had two supported steps to take back to my bed. As soon as I was flat, they slapped ECG tabs all over me, took my blood pressure and tried six times to find a line to collect blood. (Isn’t it ironic that my infuser port was taken out that day.) My BP was 60 something over 40 something and they discussed taking me ‘upstairs’. ‘What’s upstairs?’ I asked. I hate it when doctors talk about patients rather than ‘to’ patients. I wasn’t unconscious and needed to be informed. I was told it was a general postoperative ward. The fear was that my potassium may be low and I could have been at risk of heart issues.

I improved very quickly and the blood tests and blood pressure and ECG returned to normal within 20 minutes. Bloody scary at the time. I gingerly got up a number of times throughout the night and managed without further issues.

The clever anesthetist who did the nerve block visited the next morning and told me to stay on top of the pain as I got feeling back. Due to the scare the night before and the unknown effect that pain relief would have on my temperamental body, I stayed in hospital a second night. Oxy-Codeine knocked me to sleep so when needed, I took the minimum dose. I used this only a few times at night to get comfortable and survived very well on paracetamol.

So, I was home on Thursday and on Friday a district nurse (and ex-teacher friend!) visited and took out the two drains. Each drain had approximately 40cm of drainage tube in my body! Brave hubby watched Fiona remove them. I was so glad when they were out and I could feel a bit more human.

I have now completely lost my voice and had to visit my local GP twice in two days to ensure this virus is not heading to my chest. Not sure where the bug came from but I’m doing everything to get over it.

I will have the stitches out on Friday and probably be aspirated of some fluid around the site. All good things to look forward to. I’m also diligently doing all the recommended exercises to ensure as few complications as possible.

X

Kristina