My Nana was, as I realized from a very young age, a wise woman with a thought-provoking mind. Subsequently, I always absorbed and respected the advice she dispensed. She used to say timing is everything. And as I have so graphically learned recently, it doesn’t matter how old you are – even an old bird like me, the timing sucks when you are told you have Cancer. And let’s be frank having Bowel Cancer, followed up by Chemotherapy, is most definitely a pain in the bum!
But there it is.
One of the most important lessons I have learned going forward following surgery and its aftermath, future success will depend on how you approach the challenge.
There are all sorts of new additions to your essential habits. Being flexible is important. No matter how rotten you feel about it being not fair and questioning why, it’s about dealing with what is at hand and taking notice of valuable advice. In the first instance you need to change your routines and rituals quickly.
While somewhat overwhelming, the amount of information provided has been put together by dedicated teams of people. They are all trying very hard to help you through, let’s face it, the biggest challenge of your life.
There’s no getting away from it. Frankly again, it can feel completely over the top. So, it’s good to have a best ‘buddy’ take charge in the first instance – someone with a clear planning head not prone to panic.
My eldest son filled this role, bless him. He helped confirm my thoughts as together we looked into the nitty gritty details, organizing all the things to do and a priority list for purchases to aid my challenge ahead.
My Chemotherapy journey will last eight x three-week cycles = 24 weeks of treatment. A long time, which affects the lives of my family and friends as well.
On Day One I was injected with a chemical called Oxyplatin. It took two and half hours start to finish.
The drip is then complimented by a regime of three tablets, taken twice a day – Capecidtabine, from Day One to Day Fourteen.
This means Week One and Two you are having continual chemotherapy treatment and vulnerable to infection.
In Week Three you can take time out until the cycle begins again, which is happening for me right now as you read this.
The thing to know; each time the cycle begins you may have different side effects.
You will be given extra medications for nausea and vomiting and diarrhoea. No use wrinkling up your nose, but in case of accidents, it’s practical to wear protective under garments, at least during the first week or so of your chemo, just in case.
Prior to my first procedure a port was to be inserted into the right hand side of my chest under general anaesthesia. That small procedure turned into a minor drama of its own.
Let me explain. Putting a cannula into my arm to feed drugs required in surgery into my body prior to the port is always painful for me. I suffer from fine or thin veins, whatever way you look at it, that hide. This meant the nurse was unable to complete a successful insert the first time. To ensure it happened the second, he called on the Doctor on the procedure team to take over.
Throughout the procedure under sedation and a general anastheic my right arm shook violently. I couldn’t stop it. Then, I gave the nurse and her colleagues a fright. When the blood pressure bag applied to my calf (never had that before) went up for the first time my brain wouldn’t cope at all. I nearly rose off the table letting out a huge scream.
Should explain again; I am prone to horrible cramps in my legs being diabetic. What happened was like having one multiplied by ten. Thank heavens, the nurse hastily changed the device back to my upper arm, for at the time, I felt like I would not survive the procedure at all.
The port insertion itself, went off according to plan. Thank heavens, it will help me cope well into the future. I also have a wrist band to wear for the next 6 months or so, to inform emergency paramedics or doctors it is there. Interestingly, I have had little pain since it was finished, although a lot of bruising around the site, which is normal.
Blood tests, my chemotherapy drip and any other liquid medications can now be introduced into my body through it without any hassle. Am very thankful for that. No more cannulas… hoorah.
Staying overnight in hospital for my first chemotherapy treatment, recommended by my Oncologist, meant the staff would be able to continue to monitor my progress for the first time. They gave me a sodium chloride drip to help rehydrate my body. While I ran to the loo all night, it seemed to help me a great deal as my body needed fluid.
Drinking water continually is a big challenge on a daily basis for many. Fortunately, I have been doing it all my life as it was the drink, apart from milk, I grew up drinking with my meals. What you need to know is once you are on chemotherapy treatment the water cannot be cold, either from a tap or a fridge.
Be prepared you will not be able to buy a bottle of cold water out of the fridge at the shop or importantly, have ice in your drink … a big no no. Cold water must be at room temperature or topped up with boiling water added so it remains tepid.
This means once home you will be boiling the kettle several times each day to top up your jug of water. If you can afford one, do buy yourself one of the great eco thermos bottles on the market and fill it a couple of times a day. They keep it at just the right temperature and the bonus is, you can take it with you when you go out.
As well, you need to up the ante on your personal hygiene in around the home, especially in the bathroom. Toilets must be cleaned thoroughly every time you go and before anyone else uses it.
Then there are special creams for your face and body. Wearing 30 plus Moisturiser on your face when you go outside is a must, plus a hat. Straw hats are no good, unless they have a lining as the sun can penetrate and damage the skin on your head.
Personally, I found the QV range of products at Chemist Warehouse had all I needed and they were recommended by one of my nurses.
The first two weeks administering the Chemotherapy, you really have to limit seeing people in case of infection; a very real threat.
Crowds of people are out of the equation; you will have many disappointments to deal with. There are five days in the first fourteen when your body, heart and mind are highly susceptible.
Around home you need good books to read whether in paper or Online. An iTV is a bonus helping you to catch up on fav programs, binge on TV series as well as old movies to get you through.
For me standing at my Varidesk reading, researching and writing when my hands would allow, was best.
It is great when my grand pusses Mr Montague and his sister Miss Henrietta are in residence, while their parents are away. Just like the gorgeous therapy dog Aurora, who visited me in hospital when I was having the drip; animals are completely diverting.
It is also in your best interest to complete regular exercises. This will help keep your muscle tone intact and working well; very important. A daily mandatory walk around the block needs to be chosen to limit access to people.
During the week I strode along the banks of the river Yarra, where you hardly meet anyone except the odd biker wizzing by.
Truly, the last thing you need is to run into people who may want to give you a hug.
Saying no when you actually need one is very, very hard. Somehow you have to convince yourself they need it more than you… and that’s not easy.
Trips to my favourite place, the Royal Botanic Gardens happened on a week day when crowds are at a minimum.
It has been a long pale winter in Melbourne and a spot of balcony gardening for me is always helpful, as is catching up at the movies on a week day when audiences are sparse. Remember, if you are using potting mix wear a mask as Legionella Longbeachyae No 1, which was integral to my original journey to finding out I had bowel cancer, is spreading relentlessly.
Getting out on your free week is good for your head. As is making happy memories during a difficult time. In the end, it’s your inner well-being and your responsibility.
Early music and the joyous music of the Baroque period in England and Europe is quite my cup of tea. Great for practicing deep breathing and meditation, it feeds my heart, mind and spirituality.
Up until now I have always thought I was fairly flexible. However I did struggle a bit for the first couple of weeks as I adjusted, getting in to a flap now and then. However, I am slowly getting into the swing of it all and endeavouring to keep my days as normal as possible.
I would recommend a shopping trip for suitable clothing to wear at home or in hospital, … K Mart and Cotton On at sale time were invaluable for me.
Practically, you need loose comfy clothing at home.
I found the garments at Cotton On fabulous… tie elastic waist trousers for winter, mini sleep shorts for summer with an easy to wash long over gown and loose-fitting t-shirts underneath.
Fortunately my shopping trip happened on a ‘special day’ when each piece at the end of the season was heavily discounted
Wondrous fleecy lined socks if it is winter are necessary, because keeping extremities warm is highly important. Buy those with the rubber dots on the bottom to stop you sliding on wooden or vinyl floors.
Stepping into slide on warm slippers, a gift from my lovely daughter in law who also bought me some great tops, was another plus, especially if you do live in a house or apartment full of cold surfaces.
Good heavens, I hadn’t worn slippers for decades as I am an original barefoot girl, who grew up at the beach and loved pattering around on cold floors. Not any more!
A point to remember when chemically active – your clothes worn during your chemotherapy cycle must be washed separately from other clothes. And if you live with others, from their clothes too. This must become an integral part of your health caring regime
During the first ten days after coming home from hospital I had the side effect Peripheral Neuropathy severely. This condition includes numbness, tingling, pins and needles, terrible pain – a complete loss of feeling in the hands. It has varying degrees and is triggered by extreme cold. As if getting out of bed on a cold Melbourne winter morning isn’t enough, like all modern apartments mine contains lots of stainless steel, which is always cold. This is something you don’t realise until you touch it. On Day One back home Bang, it happened when I went to the bathroom! No warning and for the first hour to an hour and a half my peripheral neuropathy was severe.
Suddenly finding your hands completely useless is disorienting. It meant difficulties for me during the first hour when I needed to measure my blood sugar, cook my food, eat and take my Chemotherapy and Diabetic tablets on top of that food. My dear number one son rode quickly to the rescue on day one, bless him, and we sorted out together how I would start each day going forward.
Testing my blood sugar using a fine needle into fingers already in meltdown – hurt too. After two mornings I added my meter to the pile of things next to my bed to attend to before I left my cosy warm bed, when everything seems normal.
That brings me to gloves… one pair with fingers out and one pair with fingers in. Plain warm wool were best plus white cotton for summer, and disposable thin rubber gloves in a dispenser box to pull over the top nearby to the kitchen sink.
As a general rule, all food needs to be cooked – no raw food and no cereals while I am on medication. If I want a salad or fruit then I must prepare it myself, which has more rules attached.
Protein is a must at breakfast and for the first week I learned to prepare my food using the heel of my hands. This was an interesting experience to say the least. But, I quickly adjusted.
Taking food from the freezer required me to use a clean tea towel to do so and taking tablets out of their packets was a nightmare, but I learned how to manage there too.
Fortunately, the little pinkie on my right hand seemed to still work when my fingers were really bad. It became very useful, especially handy for the ‘hello are you surviving this morning’ texts arriving from my family, as well as answering questions or dialing out, albeit slowly.
Hey Siri, also came in handy. Thank you Steve Jobs.
I’m so glad I was born into your age of Apple technology. Nice to have a ‘fairy’ on hand who can respond and act remotely.
PS: A warning: going into the freezer department at the Supermarket where you shiver walking by all the fridges set my neuropathy off big time. Forced me to abandon what I needed until my son was able to go and fetch it for me. So, you may also need a shopping buddy! Oh, and driving the car… well a worry for others, so public transport is best.
Now at the end of cycle one I have learned it will be persistence, remaining positive and keeping strong through exercise, which will bring me through.
They must become the name of my game if I am to survive eight cycles. And, yes do as I have learned to do, yell help if you need to. If you feel like a good cry do have one and then start all over again.
This will be my last report until after I have finished all eight cycles of my treatment. Putting my shoulders back and best foot forward is my new byline.
Carolyn McDowall, Writer, Editor, Publisher, The Culture Concept Circle, 2018