My personal journey with cancer has been a whirlwind of diagnosis, operation, recovery and home. If you would like to know about the first phase of that journey, click here.
Now my pathway has shifted from cure to chemotherapy, just to make sure I can hope to keep this awful disease at bay for a while longer. During my weeks at home since my operation, my body has healed well with regular walking each day and I have at least for the moment, re-gained some of my energy.
The malignant tumour in the right hand side of my bowel has been removed and in many respects, my understanding is I have been cured. However, cancer is not that kind. If it can it will leave a deadly trail behind, meaning a new tumour may suddenly appear in another part of the body, challenging us all.
My post-operation pathology was not promising. It revealed the cancer had penetrated 11-16 lymph nodes removed in surgery. Since then, coming to terms with being a high-risk patient has been hard. But, I am secure in the knowledge that with additional treatment, my surgeon and oncologist are seeking to give me the best odds possible to aid my quest to enjoy a few more years with my family in the future.
The cycle of the style of chemotherapy I am starting will take three weeks. There will be two weeks of treatment followed by one week off. The hardest part for me to come to terms with at least in the first instance, has been that my treatment will be over a six-month period, which seems to me to be a very long time.
Every treatment I know can be different. What you are given is tailored to suit your particular circumstances and administered through a drip directly into a vein. In my case as well as the drip of chemicals, I will also be taking tablets twice a day on days 1 – 14, before having day 15 – 21 off.
Facts to me have always been important. My career path has meant the most important element of any work I have undertaken, has been about getting the details right in order to succeed. This is no different, despite it being so much more personal.
My knowledge of self means I don’t like being lied to or the truth sugar coated, because unless you know how deadly the situation you are facing, is how do you work up a plan or fix your mind on going forward, doing your best to defeat this invading inner enemy.
Gathering relevant facts I am sure will assist me to practically apply knowledge gained to every part of my life going forward, including my diet, my actions and my determination.
Persistence I believe, is the only asset that will bring me through, as long as it is accompanied by a very large dash of love and laughter, the most contagious of all human emotional experience. A highly sophisticated social signalling system, laughter helps people from all walks of life and all backgrounds, to not only bond, but also negotiate their way ahead through difficulty. And, it is also not only limited to communicating mirth, but also triggered by social discomfort.
It was during the fourth week following major surgery, my son and I met with my Oncologist to discuss ongoing treatment. Specialty is the name of the game in the Medical field and the Oncologist the doctor who takes your treatment forward. It is part of his practice, to continue to collaborate with my Surgeon and my Endocrinologist and GP who are managing my Diabetes and general well-being.
I have had many follow up appointments with them all to make plans, especially for my diabetic condition for when the chemotherapy starts. I have since learned one of the things to counteract nausea if it happens with chemotherapy, is steroids, which may send my blood sugar high. If so it will require quick action to bring it back again. I have written instructions for a few different number scenarios typed up and stored in a folder on my computer for back up.
When you have the initial appointment with the Oncologist it is very important to be accompanied by a family member or friend who is going to offer you support. Their presence with pad and pen is important. They can write down instructions you may not remember well later, because for some parts of the meeting you may find yourself in a daze as your senses are assaulted with very hard information.
The possibility of side effects and there are a great many, needs to be addressed. I felt panicked at first learning about some, including losing memory and taste. Then there is the one that if it occurs will affect my ‘typing’ fingers.
The printed information I left the surgery with listed them all and I felt a bit panicked until I visited my GP a few days later and she challenged my thoughts. “Let’s look at the side effects for just one of the drugs you are taking for Diabetes” she said.
Putting the list of just one of the tablets I take daily for my diabetes on her computer screen certainly helped my perspective. It was very long and I had only experienced one – a less than 5% chance, based on the numbers.
Within a few days of the appointment with the Oncologist I had numerous calls from his assistant and staf from the hospital booking me in for a raft of appointments in advance of day one of my treatment. A few days before I had blood tests, followed by an education session about what to expect ahead.
While I came away with a clearer understanding of my treatment and the preparations I need to make in order to negotiate my journey, however I would say to anyone entering this phase, you will also need a note book for even if you do have a great memory, the information fired at you can be so overwhelming it is good to have your instructions written down.
Preparation for the first session also involves making up a variety of soups and casseroles and freezing them so I am able to look after myself during the immediate period following each treatment. Those first three weeks is sure to go wizzing by. Cold food, raw food and drinks with ice are out of the equation… everything needs to be ‘cooked’ and/or taken at room temperature.
My first treatment is already underway and yesterday I checked into the hospital as the sun rose to have a type of catheter (port) inserted for the duration of the treatment. There are generally two places this is placed. Upper arm or in the chest.
Once installed, from then on you receive all chemicals, blood transfusions, antibiotics and intravenous (IV) fluids via this semi-permanent portal, rather than a needle into a cannula inserted into your hand or inner elbow every time.
Having an overnight stay is all about ensuring carers can monitor my initial progress including any nausea and vomiting, which will be monitored so that a plan can be put in place to help me, if required, to manage.
The fact I live alone is a big factor and adjusting my schedule and daily rituals may be a priority. To start, a whole raft of new numbers will need to be entered into my phone. Then I have to be sure I keep the battery charged in case I need to call for help quickly.
Cancer is very scary for us all… this is a fact there is no getting past easily… especially for my family as there are so many unknowns for them and there will be days and weeks ahead where they will not be able to race to my aid and somehow I will have to deal with whatever the latest challenge is.
My only way of coping will be to stay informed of the facts and hope to fall back on my commonsense and experience. Am practicing Yoga breathing to help me keep moving along and also, advised by a very dear friend, have booked myself into a Look Good Feel Better workshop run by trained volunteers.
She tells me to expect to pick up valuable tips and tricks to assisting in coping with physical side-effects. For me it is about putting my best foot forward because I do understand it can and will be easy to fall into depression as treatment progresses.
That’s not a feeling I really want to experience at all; remaining positive and calm for me is vital to my inner well-being.
My educator has also advised I may lose more hair from the chemicals, as I did with the onset of the disease due to a dramatic loss of iron. This was a surprise as my Oncologist had advised I wouldn’t… so it remains to be seen.
Am actively practicing wrapping my head in a turban with a long scarf from my fav brand: Seed. Then I can imagine myself as one of those fashionable ladies of the Regency period in England.
It will certainly help disguise I am having a bad hair day!
In the meantime, I have had my hair cut very short, making it easy to manage on a daily basis, because I will have enough to deal with.
The first story published about my journey; my experience with Cancer had a wonderful response – thanks to you all out there… I have been contacted by both friends and followers of our website, including people overseas sending wonderful words of good cheer.
From other friends, who have already negotiated cancer challenges, I know having goals out there are important. And so initially I am pinning my hopes first up on reaching my 75th birthday on December 13, 2019.
If I do my three sons and a great friend who always joins us, can go with me to see Episode IX, the final movie in the current Star Wars trilogy and I can appreciate some may think this a flippant goal, but it is important to me.
My three sons and I share a love of sci fi and we went to see the original story in the first trilogy when it came out back in the late 70’s. For all of us, and I know many other people around the world, following the Skywalker Solo saga has been a happy memory to share; one enjoyed down the years as family.
Carolyn McDowall, Writer, Editor, Publisher, The Culture Concept Circle, 2018