"A caregiver's perspective" - from a reader

                                                                    Page 13

 

Today I am posting a blog sent in to me from a reader, Cameron Von St James.

I have often said to friends...." I had morphine 5 times a day to help me through my cancer, but my poor husband had to cope with me, the emotional well being of our children and my mom while holding down his job and coping with all the bills and doctors.

Here is a valuable article written from that perspective...enjoy!

Thank you Cameron for sharing this with all of us!

 

 

 

 One Caregiver's Perspective of a Cancer Diagnosis

My wife, Heather has said several times that she cannot imagine how I managed to deal with her mesothelioma diagnosis. I spoke with her once about it, but I’d like to share more in the hopes that it might help others currently struggling through cancer.  

Prior to her diagnosis, our first daughter, Lily, was born. We were overjoyed with her birth, but the diagnosis soon after lead to feelings of fear and uncertainty. When the doctor said the word mesothelioma, I looked into my wife’s tear-filled eyes and wondered how we would cope with the diagnosis.

When I heard, I was overwhelmed and had feelings of despair. Then, I heard the doctor’s questions about my wife’s future medical care, and I was brought back to reality. This was the beginning of many days that I would feel overwhelmed, but I still had to help my wife decide the best course of action for her medical care.

 

After her diagnosis I had feelings of rage, fear and anger, and controlling these feelings was a major issue. These bouts of anger were often accompanied by profane language. However, I quickly recognized the need to be a source of strength and stability for my wife and daughter.  I knew that the last thing they needed was to know just how scared I really was. This is why I learned to control my emotions. I succeeded most days. On my weak days, I remembered why I needed to remain strong, optimistic and stable, but it wasn’t always easy.

My to-do list of responsibilities grew immensely following the diagnosis. My tasks ranged from work to travel arrangements for my wife’s medical care, taking care of our home, Lily, our pets; the list seemed endless. I had to prioritize my daily tasks to reduce my feelings of being overwhelmed. I also learned to accept help from the many generous members of our community, friends and family. Their unbelievable outpouring of support helped us understand that we were not alone in this fight.

After Heather’s surgery, there was a two-month period when I could not see her or Lily because they both were in South Dakota with Heather’s parents. Lily had been staying there during the operation, and Heather flew down following the surgery in order to recover and prepare for the next round of mesothelioma treatment: radiation and chemotherapy. I had to remain behind in order to work and take care of our home, and because of this I was able to see my family only once during those long two months.

I drove 11 hours one night on a Friday after work, in the middle of an unexpected snowstorm to see them for the weekend. I was able to sleep for a few hours in my car while the plows cleared the roads, and I arrived, exhausted, on Saturday morning. I spent a day and a half with them before making the 11-hour drive back home to be at work Monday morning.  It was a lot of grueling travel for just a few precious hours with my family, but it was worth every second. My brief separation from my wife and daughter was difficult, but it was necessary given our circumstances.

 

I learned through this ordeal that while many of the decisions we were forced to make were difficult, I had to be able to take comfort in the fact that we were able to make any decisions at all.  Our ability to choose a course of action gave us some sense of control over a situation that oftentimes seemed to dominate our lives.
I am so grateful Heather is alive and healthy six years later, and I hope our story will be a source of hope and inspiration to those currently battling cancer.

 

 

Cameron Von St. James
Mesothelioma Cancer Alliancehttp://www.mesothelioma.com/blog/authors/cameron/

 

 

 

Twitter and Facebook

Please follow my twitter page @PinkPhoenixSA for daily quotes to inspire and motivate you in the fight against cancer or,
"like" Pink Phoenix Cancer Foundation on Facebook, to follow the initiatives we have launched, the projects we fund and the present and upcoming fundraising functions....and remember

"You cannot win the race if you don't run....you cannot win the victory if you are not prepared to battle!

Here's something Funny..2

                                                                      Page 12
Here's something Funny 2:

My husband Craig was away for a short business trip and my mom had flown down from Pretoria to assist while he was away.

My mom cannot drive a stick shift car so Sam, my close friend, drove me to treatment that day.

It seemed to be a lucky day after radiation that morning, as I got off the table, out of the building and into the car without vomiting yet.

Sam was driving, my mom in the back seat behind me and I was in front, in the passenger seat.

Sam had witnessed the result of chemo and radiation but my poor mom was in for a surprise as this was her first day with me and the first "hands on experience" of the after effects.

With my "trusty" lime green bucket tucked safely between my legs and the nausea overwhelming my senses, we made it onto the road before the wretching started.

The problem that day was that I had forgotten to bring my hair clip with me so My hair, all clean and blow waved, was hanging in all it's glory around my face.

As I heaved and projectile vomited into the bucket, a large lock of hair fell into the bucket at the same time.

Sam saw what had happened, I was trying to call to my mom to grab my hair from behind but could not get the words out in-between the wrenching and vomiting .

My poor mom is such a sensitive soul and froze in panic so Sam, while still driving decided to assist in retaining my dignity by lifting the hair out the bucket and attempting to hold it back for me.

By attempting to pull the hair out before it touched the content of the bucket, she probably should have done it gently but....too late!

My lock of hair was soaked and as her hand pulled it back, the spew flicked all over her and the steering wheel.

There was nothing anyone could do, so Sam adopted the most amazing attitude about the situation and putting me at ease about feeling guilty and embarrassed, she proceeded to drive home with herself and the steering wheel in a soggy mess.

At the time we did not find it funny but now it is one off our favorite stories which crack us up every time we tell it.

Sam admits that before her experience with me she could not deal with seeing anyone vomit but....after her experience that day and dealing with it all the way home.... She can now witness all 3 of her kids and the dog vomiting without even flinching.

So you see... Even my friends gained something positive out of a traumatic experience.

I would like to invite you to find your own humorous story and send it to me on sharonvstraaten@gmail.com so that I can publish it on my blog.

Let us spread the laughter and show that we can find a moment of light and laughter in our darkest moments!

Here's Something Funny

                                                           Page 11
 Here's Something Funny

I have not updated the blog in a while as LIFE was happening and I was loving every minute of it!

It's time to share the excitement !

I was invited to attend a fundraiser for breast cancer and at the function I volunteered my time  to help out where I could.

This lead to an invitation to speak at a fundraiser !

My thoughts were not to speak about the hardship of cancer and the treatment thereof but I wanted to share my thoughts, my fears and ultimately what it took to dig deep and find the courage and determination to fight with everything I had to survive .

While thinking back and writing notes, I was intrigued that I could recount 2 humerous events so vividly that occurred during treatment. I marvelled at the strength of my mind to be able to recall the positive and happy thoughts and after only 18 months was shutting out the dark moments and the trauma associated with the treatment of chemo and radiation.

So I decided to share those with you today to show you that there is always something good to come out of any traumatic situation.... If you let it!

Story 1:
I wore a full facial and neck mask, moulded and set into every crevice of my face, clipped onto a board for radiation treatment, every day Mon-Fri for 3 months.

As I said in my previous blog.... I had to find my happy place and go there every day during this treatment or claustrophobia could have just been ONEmore thing to worry about.

It was my last day of radiation treatment and I had been counting down the days.

It was the longest treatment...or so it seemed... Possibly because I could not wait to take the mask off for the final time.

The moment arrived and the."monster machine" stopped turning and ground to a very noisy halt.

The hard wooden bed slid slowly forward into the open and stopped with a jolt.

My heart was racing as I heard the footsteps of the nurse stop next to me and felt the release of pressure against my face as the 4 clips clicked open.

FREEDOM!

I jumped off the bed, feeling the nausea already rising from the pit of my stomach  and headed for the door.

Just before reaching it, the nurse called out...."Mrs. Van Straaten....would you like to keep your mask as a SOUVENIR "....

WHAT?.......was she kidding me?

All I could imagine was bringing this thing out at dinner parties?...How to kill the party

I did not even bother answering her as I ran for the door before loosing the content of my stomach into my trusty lime green bucket tucked under my arm.













2nd Story:

How my having Cancer affected Tayla (my daughter)

                                                                    Page 10

My daughter, Tayla, is a beautiful, strong and independent child, who is mature for her age yet a sensitive soul behind her tough facade.
She has just turned 16 but was 14 years old when I was diagnosed with Cancer

Being the older of the two children ( Jarrett was 12 at that time), Craig and I assumed that she would have the better understanding and be the one to cope with what we faced as a family.

The problem was, we underestimated just how much she understood  and did not give her enough information for her to process and for her to feel secure.

On the night we told the children, Craig sat holding Tayla on the couch.
We told the children that I was very ill and that I had Cancer.

Tayla burst into tears... Craig held her as she cried and we continued to tell them about what to expect so that they would not be frightened or traumatised when they saw what was going to be happening to me.

Craig and I had already had a few days to come to terms with this as well as speak to the psychologist, so we were already in the frame of mind that I was going to survive this.

We assured them that, although it was going to be a difficult road, I was going to be alright.

As I said in a previous blog, neither of them asked "could I die"...so we never discussed the possibility  of dying or how serious the Cancer was.
When she stopped crying, I thought we had successfully re-assured them and that they would be fine.

How naive I was!

As the days went by and I showed more signs of the treatment taking effect, Tayla withdrew emotionally until she withheld all affection from me and stopped saying " I LOVE YOU"
She behaved like a nurse and would gladly hold my hair back when I was vomiting or bring me anything I needed.
 She took on a practical role and avoided any personal conversation.

I tried to talk to her and ask her about her feelings but she would not go there.
I tried talking to her about my day and she was not interested in hearing about that either.

It broke my heart as I interpreted this behaviour as her being angry with me for being ill, and not being there for her as her mother.
BUT..
I was wrong!... and only much later came to understand that....

As she is highly intelligent, she was not only seeing but hearing everyone talk about how serious it was.
She was frightened and thought I might die, therefore she was distancing herself from me to cope with loosing me.

She thought we had not told her the truth, and she could not bear to ask, so she carried that uncertainty with her and it ate her up emotionally!
We should have been blatantly truthful so that she could have known how hard I was fighting to be with her  not think I was lying to her.

In retrospect, we should have said the words
" Even though this is very serious, mom dad and the doctor's are going to do everything possible to make sure that I survive....I am not going to die"

On the day I was told the Cancer was CLEAR, we immediately told the children.
 Tayla said the most precious words...
" I LOVE YOU MOM"



Next Blog: 

Should you have any questions or comments, please use the tabs at the bottom of each blog page.

How Craig ( my Husband) Coped with my Cancer

                                                                       PAGE 9

This blog is so important to share with you as I want to tell you about how my having Cancer affected  my family.
My husband, Craig and my two Children, Tayla, my daughter and Jarrett, my son.

My husband was my ROCK!
He faced this disease with such strength and determination and just stepped up to face it HEAD ON!

I remember his words to me just after I was diagnosed
"Babe, we are going to treat this like a bad cold"
He was not making light of the fact that I had Cancer but used that idea to maintain perspective and not allow the fear of loosing me to overwhelm him.

From the start, Craig took total control of everything medical.
He dealt with all the doctors and medication.
Managed all the information that was being thrown at us from every direction , processed and made sense of it which enabled us to make the decisions together that would make the difference between Life or Death.

He was as petrified as I was but hid it from me by being brave and confident.
I actually don't know how he maintained this !

He took me to treatment every morning, holding my hand on the way in and holding me up on the way out.
His employers were very understanding and supportive during this time.

 He settled me down at home after all the vomiting every day before going to work and dealing with all that additional stress.

 He handled all the bills that were flying in from doctors, specialists and hospitals,

He had my medication on a schedule and knew exactly what had to be taken when and what  it was for. If I had any side effects, he discussed this with the doctors immediately.

He had found a woman, Jane, who made home made organic soups. Craig had told Jane that I could not eat solid foods so every few days, Jane would deliver fresh soups and put a  beautiful rose on top of the punnet for me.
Small gestures like that meant so much when I was feeling so beaten down,
Today we are all good friends!

 Craig would  blend my fresh juices for me and sit with me while I struggled to get it down, encouraging me all the way to fight through the pain....
and..
the most incredible gesture of love was....
I had 5 doses of morphine per day and the last dose was due every night at 2a.m.
Craig would prepare the liquid morphine in a syringe each night, set his alarm and get up to walk around to my side of the bed, squirt the dose into my mouth and  gently tell me to go back to sleep.

All this while trying to maintain the emotional well being of the children, my mother and himself!

He was under tremendous emotional strain watching me suffer and being so helpless to do anything about it ,
YET...
NOT ONCE, did he show anger or frustration at the situation he found himself in or direct it at me.

I admire him so much for that!

His emotional release was meeting with his friends after work ,at our local pub here in the village, to talk not about himself, but as they all told me afterwards, how
" He used to break down sharing with them how much he loved me, how brave I was and how much it hurt him to watch me suffer."

He was so grateful to all his friends for being there for him!

Craig and I can understand now how an emotional experience like this can tear a marriage apart but with us .....IT WAS THE OPPOSITE!
This has brought us even closer and that was because we talked our way through this with each other.

We were REAL with one another about our feelings and especially our fears.
BUT..
NOT ONCE DID I EVER SAY " I WANT TO DIE" no matter how tough it got.... because I knew that would break his spirit and would hurt him beyond belief.

If we had hidden away from discussing the fear of loosing each other we would have grown apart.
We cried together A LOT!

It was also so important for him to know that ..
I HAD NO INTENTION OF GIVING UP and for me to know .....
THAT HE WAS NOT GIVING UP ON ME!
So together, we just kept on giving each other the strength throughout the whole experience.

We had to face a very difficult issue together, and that was, "the updating of my will."
Under normal circumstances that is not a comfortable issue to deal with because you are facing the possibility of your mortality  ...but it was so much more emotional and heart wrenching as this was a REALITY for me.

We both felt so torn emotionally and it I knew it broke his heart putting me though this!.... It was soul destroying acknowledging on paper that I was preparing to DIE when in reality I was fighting so hard to LIVE!

I am so proud to have this man beside me in life, as I know, that no matter what life throws at us.... after surviving Cancer...... we can face it together!



My Next Blog:  The Effect on my Children



Please feel free to comment  or e-mail me.

Coping with Chemo and Radiation Daily

                                                                          Page 8

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