Saturday 7 April 2012

Coping with Chemo and Radiation Daily

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My treatment consisted of a combination of Chemo once a week and the highest dose of radiation available on a daily basis (Mon - Fri) for a period of 3 months.  I was given week-ends free to recoup.

I was advised that the radiation would cause internal as well as external burning and that after 4 weeks I would loose the ability to speak and eat... Well, it took only 2 weeks for that to become a reality!

My body reacted to the radiation so early in the process so I was put on to a daily routine of two additional injections. These were administered into my stomach in order to counteract the effect of the radiation.

 One day, I remember looking down at this swollen mound of flesh, that once was my flat stomach ,and not recognising it as my own body. It was blue, green yellow and purple from the bruising; it was difficult to find a clear patch each day for the next round of injections.

Having Chemo every Tuesday for 2 hours before my daily dose of radiation was not an easy task and this became the worst day of my week.

I received the Chemo intravenously over a period of 2 hours while sitting in a comfy chair in a big room with other cancer patients all receiving their doses too.  Cancer patients sit there, lost in their own world of silence in a struggle for their own survival. Chemo drips in their arms and portals in their chests, looking sad and depressed and it takes enormous strength not be affected by it.

 I was the youngest in the Chemo room and I found the atmosphere very depressing even though the nurses did their best to keep it cheerful. Apart from the odd comment or conversation there was an element of such sadness and even a cheerful story or joke only changed the energy for a short time.

I could not bring myself to speak to other patients about their treatment or condition. I did not want to compare "war stories" with anyone as I found it difficult enough coping with my own.

I felt that if my cancer at stage 4 was more severe than theirs or if I had of received that pitiful look from anyone...it would have undermined my belief and faith that I could survive this...... so, I did my best not allow myself to be engulfed by this negative energy.

Craig, my husband on the other hand, was amazing, and chatted to everyone about their health or inspired them by talking about food  and recipes that he cooks. It really was a wonderful distraction for all of us in the room.

He even baked cheesecakes for the nurses in oncology which they still talk about every time they see us at check up appointments.

After my first day in Chemo I made a decision.!.......
I enjoy dressing well and love fashion, so to help me feel good and keep my mind strong, I decided to dress well, do my hair and put make-up on every day to go to treatment. I did not want to look as though I was dying!

I truly believed that if I did not look sick I would not be sick !

The nurses in the oncology rooms still joke about how good I looked each day and how my  handbags always complimented my outfits.

I feel this helped me so much from a psychological point of view........although walking in high heels while vomiting into a bucket does take a bit of practise!

 Facing the treatment was daunting so Craig and I decided that the best way to cope with this overwhelming task ahead, was to deal with  it.....ONE DAY AT A TIME!

By doing this I experienced a sense of relief when each day was over and marked each day off in my mind like a castaway on an island. I compared days with each other so that I could recognise and acknowledge a good day when I experienced one and that kept me hoping for more.

Eventually I got to that point and  to the realisation that I was having more good days than bad and it was the most amazing feeling as I knew I was on the road to recovery.

 The Radiation  treatment really surprised me and caught me off guard! I expected the Chemo to make me ill  but after the first few radiation treatments,  and all was still going well, I thought radiation was going to be easy . It seemed so gentle and there were no side effects for at least the first 7 treatments....until.......after a short 2 weeks the external burns started to show on my throat.
My voice disappeared as my voice box was being burnt and I could no longer eat solids.
 Swallowing  became increasingly painful until it became impossible to even get liquids down without taking painkillers first.

 By the end of my treatment my neck was burnt black and peeled from tiny suppurating sores due to the radiation burn.

If that was the external damage, imagine the radiation damage to my throat and organs internally!

I had lost all my taste buds and had no taste at all.
My saliva glands were also damaged and  my saliva dried up completely.
 The pain was so intense that I was on morphine 5 times a day.

I  was losing weight ! I am a slim person and I  knew that I could not afford to do that, so my husband Craig, bought me a juicer.
I lived on painkillers to numb my throat and fresh juices daily, in order to maintain my strength and give my body every nutritional advantage to repair and heal.
I knew that nutrition was a key element to my survival as much as believing that I would survive this!

I will discuss nutrition in a later blog.

 Radiation made me violently ill and vomiting became a daily routine.
I used to carry a lime green bucket with me each day to radiation as I would get off the table and not even make it to the front doors before the vomiting started for the day!

What really surprised me was when my hair loss was affected by the radiation, not the Chemo.

I was warned that my hair could fall out and I dreaded the day. I have long hair that when left to dry forms soft locks like a gentle perm.
I stood in front of the mirror one day and an entire lock just came away in my hand. I looked at it and burst into tears as I could not imagine myself bald.
I have one ear that stands out further than the other and all I could think of was how am I going to hide my ear, as the tears streamed down my cheeks.

I lost my hair from the back of my head to the nape of my neck as that was the area affected by  the radiation treatment ... luckily I could wear the rest of my hair down over the bald section.


My hair grew back beautifully  over the next 2 years, with baby soft locks that curled their way down to join the length of the rest of my hair.

Before starting radiation treatment, a  wet mask was moulded to the contours of my face and  once left to dry, set into a hard casing that mirrored every detail in my face.. This was then fitted onto my face each day and then used to clip me onto the table in order to hold my face in the exact position required.

The markings on the mask indicated where to radiate and where to protect  my face in order to minimise the burn damage to facial nerves, tongue, arteries .
At first I felt claustrophobic but soon learnt to calm myself down and  "zone out".  Imagining all the good the radiation was doing ... not the destruction.

It was an opportunity for me to visualise the cancer healing and take myself to a calm and peaceful place before the vomiting started for the day!
 The consequences of radiation after 2 years are that my saliva glands have still not recovered and I drink water constantly during the day and night to keep my mouth moist.
I have also learnt that water does not dissolve food like saliva does and have virtually given up eating pasta's or breads.

My sweet taste bud has also not recovered.

 I miss this the most and sometimes get very frustrated....as chocolate tastes like cocoa, cookies taste like flour and marshmallows taste salty.
Foods don't taste like I remember them and I am often disappointed when I have a craving as my brain and my mouth no longer speak the same language
 BUT....
I keep reminding myself  of what it took to get to here and I am so grateful to have survived this that I find it a small price to pay for the GIFT OF LIFE!

It's hard to believe that my body was poisoned and burnt to that extent and then recovered to look and feel so healthy again.

I marvel at the capability of the human body!

It made me appreciate my body so much and I have such respect for the capacity to heal. I  am very conscious of what I put into my body now as I know that my continued survival and ongoing health is directly related to the fuel and nutrition I feed myself.

Next Blog:  How Craig ( my husband) dealt with my Cancer

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