30 days of sunburn…

Varian radiation therapy machine

(Photo credit: IndyDina with Mr. Wonderful)

In response to those who have asked, I thought I would try and demystify the process of radiotherapy.  Most women who have breast cancer undergo this – also called radiation treament.  It is also used to treat many other types of cancer.  I had my  course of radiotherapy after finishing my primary rounds  of chemotherapy in 2011.  And this is the way it went….

First step in the treatment schedue is a “planning meeting”. The treatment team require this to happen a month before starting radiation, to get all systems in place.

As we were living in Rockhampton at the time, the nearest treatment centre was is Brisbane – some 600 kilometres south. So between cycles 5 and 6 of chemo ( when side effects have built up and are pretty much at there worst!), my husband and I caught the 6.30am flight down to Brisbane and then taxi to the hospital for a 9.30am meeting.

I was there given information about the treatment plan, and taken into a room full of technicians and doctors.  At least eight of them ( I’m sure the cleaner had been invited too) gathered around the skinny bed where I lay topless.  They proceeded to poke and prod my poor old left breast.    They  attatched wires to it and xrays were done. Next marks were made on old boobie, and photos taken. And scans. And it was traced onto a sheet of plastic.  And a few  changes in position and all done again. By now we were all old friends!  Which is just as well, for now came the tattoo gun. Yes two small tattoos were made. I asked for hearts, but artisic flair was missing, and I got dots.  ( I just cheked – yep, still there and just dots).  My first appointment was made for 3 weeks after my final chemo session, and we were able to fly home that afternoon.

So.  The time came for me to begin, with a schedule for 30 shots of radiaton, monday to friday for 6 weeks.  The Linear Accelertors that give the radiation are very busy machines.  There are 4 of them at the Royal Brisbane, and they work all week from 7 am until 10 pm.  This means appointments can be at any time within that frame.   Each patient has all their treatment on the same machine – I was ascribed to LAC 3.  I requested daytime appointments as I would not have transport apart from my own two legs.  Only twice did I  have to walk in the dark.

I was very blesssed to be able to stay in accomodation provided by the Cancer Council.  It was a lovely self contained room with a kitchenette, and at very little cost to me. There was also access to a full equipped kitchen and laundry. The complex provides a wonderful service to many families from all over the state, and I am very grateful.                                                                                               My darling husband was able to be with me for the first few days, before returning to Rocky  for work.  He also returned for the last week, which was lovely. I was pretty weary by then.

Each week day I would walk down to the hospital at the appointed time and wait my turn. When called, I would go around to the change cubicles, where I had a small cubbyhole in which was kept  my stylish purple hospital gown.  This I put on with the opening at the front.  A technician would then lead me into the room with LAC 3.  While I lay on the very hard narrow bed, two technicians  would position the bed and myself  in a very specific placement.  Arm above the head, gown off one side. Then 2 cm left, 9 cm up, head over……etc , until the co ordinates matched those devised in the planning meeting, and the laser beams were positioned exactly.   Once satisfied, the technicians would leave the room to go to the protected room where they could see me and operate the LAC without being exposed to the radiation themselves.  If the readings did not match exactly, they woulld come in again to get the position perfect.   Each time they left the room, an alarm  beeped 16 and a half times.  When all was set, the actually radiation was administered.  This took less than ten minutes, during which the machine whirred and moved around the target and cast it’s deadly beam. The technicians then returned to reposition the bed so that I could make my escape until the next day.     Each week I also had a consultation with a Radiation Oncologist.

The radiation treatment  damages the skin – it’s a bit like getting badly sun burned every day for thirty days.  To minimise damage, I applied creams as advised three times a day.  Moo Goo and a mixture of calendula and comfrey ointment helped a lot,, and I had no blistering or skin breakdown.  I do , however, have a two tone breast, as the skin that was irradiated remains a little darker.  The other major side effect is fatigue.  It takes the body a lot of energy to repair damaged tisssue, leaving a defecit  for other things

All in all, radiation is a lot more pleasant than chemotherapy – the hardest thing was being away from home for six weeks.  I am very grateful for the staff who were unfailingly kind and patient, and the wonderful Cancer Council staff who provided a home away from home for that time.

Phew, this has been a wordy missive.  Hope it has helped you understand what so many people experience along their cancer journey.

monday, monday…

Just thought I would tell you a bit about my life as a chemo chick.

Since October 2012, I have been to the local hospital every Monday.  On average, the process of getting my chemotherapy takes about 4 and a half hours. I know the oncology part of the hospital pretty well now.

I present to the desk, then take a seat in the waiting room. the magazines are usually pretty old and wel used, but help to pass the time – there is always a bit of waiting to do.  The nurse collects me, and we go into a clinic room where she proceeds to take two tubes of blood.  Chemo can’t proceed until blood resuts show that my neutrophils are adequate to keep up the body’s fight for the immune system.  They generally take a beating from the chemo, and must be above 1.5 for the drugs to be given.  Normal is 2, and mine have been down to zero before, but are currently doing pretty well. Other numbers they look at are red blood cells and kidney function.

Because chemo can damage the veins, making blood tests and inserting cannulas difficult, I have a PICC line.  That is a Peripherally Inserted Central Catheter.  This is a very fine tube that is inserted ( using ultrasound guidance) into a vein in the upper arm, and fed through the veins for 40cm until it sits in the bigger, tougher vein just above the heart. I had it put in back in October, after my veins gave up. It is great and saves me at least two needles a week, but must be kept dry – I use a lot of gladwrap and rubber bands – and dressed every week.  So once the bloods are taken, the nurse cleans and flushes the PICC line. This is a sterile procedure, so takes a little while.

Then, back to the waiting room until the blood test results are back. Once these are in, we proceed to the treatment room and are made comfortable in a day bed.  Weight, blood pressure, pulse, temperature are all recorded.  The questions are the same every week, and asked first by a nurse, then a doctor. Any nausea? vomiting? diarrhoea? mouth ulcers? rashes? fevers? numbness?  problems?  When the doctor has determined we and our blood results are in a fit state to go ahead, the chemo is ordered.  While waiting for this, IV lines are set up and connected to the PICC.  Then the premedications commence.  As I have not had any major reactions to the drug I am getting ( paclitaxol), I requested that we drop some of the premeds. The IV steroids had the effect of jangling my nerves in a very unpleasant way, and the IV phenergan used to knock me out for the rest of the day. I am so pleased my oncologist was happy for me to no longer have these.  I still have two pre meds, but they are fine.

Once the premeds are in, the nurse caring for me gowns up. For her own protection she must wear gown, mask, goggles and gloves whenever she handles the cytotoxic meds.  She connects it all up, and away we go.  It takes an hour to go through, then another flush with saline and I can be disconnected.   Yaah! I can go home now.

I generally feel pretty flat the following day, but am happy that the side effects are minimal, and at the moment, the paclitaxol  is doing a good job.  It is palliative, and not curative, but is keepng things under control.  As well as the routine blood tests, every three weeks my tumour markers are measured ( these measure the activity of the tumours), and every two months I have CT of the chest, abdomen and pelvis to monitor the situation.           I see my oncologist every three weeks. She is a lovely lady – very calm and quiet and clever.   The nurses in the unit are also very caring and kind and take good care of us all.

I am grateful.

Shadows

Sometimes life seems full of shadows.  It’s hard to see the light, and all seems dark and dreary.   Now, picture a mother hen, with little chicks gathered beneath her wings.  They can’t see the light, and are certainly in the dark, yet there they are very close to their mother’s heart.

And so it is with us and God.  He promises to shelter us in the shadow of His wings.                      And there, we can rest, secure.  Around us, storms may rage.  Things will go wrong.                         Yet we are safe and close to the Father’s heart.

No better place to be.

What can I say?

Have you ever come across someone going through a time of grief or sadness, and not known  what to say?  Have you felt uncomfortable and found it easier to say nothing at all?  Pretend it hadn’t happened, or even avoided the person?  Me too.

But now I have been on the other side of the fence, I realize that these actions are really more hurtful than helpful.

 “But what can I say?” I hear you ask. Good question.  And I am happy to share my thoughts on the matter.

First and foremost – don’t ignore the situation. It is most likely consuming the person, and is the most important thing in their life at that moment. To ignore it is to pretend it is of no concern.

I know it is often hard to confront the pain of another being, but it is so important to acknowledge the way it is. The words don’t have to be eloquent or profound – just genuine and caring.

“I’m so sad for you”

“I’m sorry to hear your news”

Such simple words, but they can be enough.  It’s even OK to say “I don’t know what to say”

 A hug can help a lot too.

If the one you are speaking to, has lost a loved one, it is good to speak of their lost one.  Relate a time when they had impacted on your own life, or an affectionate memory of their beloved.

Please,please,please can I ask that, if they have been diagnosed with a life threatening illness, do NOT share with them the latest “miracle cure”. If you knew how many diets, potions, creams and recommendations I have been given…….  It can be really overwhelming and even guilt inducing, and most often not helpful.

If you want to help someone in a practical way, it will be well received, but be specific.

“I want to come and do your ironing – when is the best time to come?” or  “I will bring around tea for the family – is it OK to drop it off tomorrow afternoon?”, will be greatly appreciated.

So many want to help, but I find I can’t respond to  “If you need some help, let me know”. Like most people, I don’t want to put others out, so I won’t ring and ask for help.

 

So, there you go – my ideas on what to say when there is nothing to say!

 

 

Trials?

Someone commented to me the other day about the many trials I have been going through. But do you know what?  They don’t feel like trials.  Just life – with a few bumps along the road. We all have them, and sure, some may be a bit bigger than others, but everyone faces issues. Mostly every day.  And amongst the rough patches, there are moments of joy and laugher,  times of annoyance and crankiness and days when I don’t even want to get out of bed. Yep, life. Made up of all these moments -sorrowful ones, happy ones, mundane ones and silly ones.

Yet our gracious God takes all these moments, and in His loving hands, turns them into something of beauty. Something to be treasured – life.

Getting to know you

I thought it was about time I told you a bit about myself.

So here goes – some random things about moi:

* I love people – I think they are the most interesting thing in the world

* I am terrible at parking. A good driver, but can’t park for nuts. My beloved on the other hand is grand at parking, but…..

* I have been a Registered Nurse for over 30 years

* My favorite food is mango – yum

* I have no skill with a hairdryer

* The above fact has no relevance to me. My hair fell out back in October. Saves a lot of time in the        morning

* The greatest blessing in my life is my family. Love ’em to bits

* I like to keep my hands busy with quilting and crafting

* My favorite toys are my ipad, my kindle and my sewing machine

* I am no good with a camera. Oh, you guessed?  Just because there is not a single photo on this        blog? I will have to try harder

So there you go. A bit about me. And I am happy to answer any questions if you want to know more.  But what about you? I have loved your comments, and would like to know a bit about you. Please share….

Hupomone

Mmmmm. Interesting word. I don’t even know how to say it. But it is a word that means a lot to me. A word I am trying to live out every day.

Hupomone – the Greek word for endurance. Steadfast endurance.

Not only the abiblity to bear hard things, but the ability, in bearing them, to turn them into glory.

Not an easy thing : not a romantic notion of flying over the difficult times and dancing through the hard places. Not something I can do by myself.

But I don’t have to. God promised a comforter, a guide to lead me through the darkness and the pain. I take His hand, and He leads me and helps me to turn it into Glory.

I am grateful.

*thankyou for the loving and encouraging words during our hard time. It was sad to say goodbye to our beautiful girl, and to see the pain of our boy. But to be there was special, and we are glad we got to share her life for those years.