Chemotherapy is horrible. There is no other way to describe it, other than with my newly developed unofficial formula of C=MT…
Chemo is the equivalent of being hit by a Mack truck.
I am no scientist, nor am I medically trained, but I am certainly experienced. Unfortunately, many others are too.
After I was diagnosed with Breast Cancer and went through my mastectomy surgery, Phil and I attended a long appointment with the surgeon to go through all treatment options. I only had the option of the public health system, but wow, I am eternally grateful that I did.
There was a team of doctors and nursing staff that spent an incredible amount of time reviewing my individual circumstances and deciding as a group what the best recommendations would be.
Treatment is different for everyone dependent upon their circumstances and type of cancer. No one person’s cancer is the same as anyone else’s. There is no ‘one size fits all’. It is an extremely complicated combination of surgery, chemo, radiotherapy and so on. For me, it was decided I would need all.
It is important to understand that I was given options every step of the way. I could choose any or all. It was up to me to decide what was best. Due to my age, family history and type of cancer, the surgeon advised that having the treatment would lower the general risk of recurrence in the next ten years from 60% down to 40%. The decision was easy for me.
I knew that my Mum did NOT have chemo after her mastectomy. Thirty five years ago, they believed they removed all trace of her cancer. They were so confident at the time, and their knowledge was very different back then. Maybe, if she had chemo, things may be have been different. I don’t dwell on that thought, but at times I do wonder about the ‘what if’.
I’m into all things natural and take care of myself with amazing natural supplements but I also wanted to commit to doing everything in my power to reduce the risk of recurrence as much as possible. Being faced with my own mortality, I made a decision that I might have otherwise thought differently about as an observer. Now I was becoming a participant.
In preparation, I had heart scans and blood tests. For some people, their heart can be permanently damaged and I was to be closely monitored and screened thoroughly.
Yes, chemo is anything but natural. Yes it is revoltingly toxic. But it is also very effective at mopping up any other cancer cells that may have possibly escaped and travelled through the lymph system to other areas. The downside is that it destroys good cells also.
There are many different types of chemotherapy. I never knew before, but every single person’s combination and dose of drugs is different. I had six rounds, every three weeks, and my drugs were designed to target any cancer cells still floating around that were fuelled by Estrogen. I had a toxic combination of three different drugs. Each chemo round cost between $5,000 and $10,000. Again, thank goodness for our public health system.
The infusion centre at the cancer clinic at Flinders hospital was full. They receive over forty new cases every week. Yes, you read that correctly, it is not a typo...
Scary isn’t it?
I am told that a well-known, local, working class southern suburb has the highest number of statistics. I won’t name it, I don’t want to freak anyone out. Apparently, the residents in that suburb are the most stressed as a population, in the southern suburbs.
Because the infusion unit at Flinders Medical Centre hospital was full, I was referred to the Repatriation Hospital here in Adelaide for my chemo treatments. And I am so grateful I received my treatment there. Those chemo nurses were absolutely amazing. Beautiful women who took the very best care of me and everyone else in that infusion unit. They made a scary experience much easier to cope with and all but held my hand through the whole journey. It takes a special kind of person to be able to do that work, and they have my total admiration. All nurses do.
Before my first round of chemo, Phil and I attended an appointment with the cancer nurse at Flinders. She gave us all the information we needed as to what we could expect.
I was feeling invincible.
I was informed by the nurse that the Mack truck would hit me and knock me off my feet. I was told that I could be violently ill, experience constipation, diarrhea or both. I was told that I would definitely lose all my hair. I could lose my finger nails and or toe nails. My fingers and toes could go numb and feel like pins and needles. My skin could be severely irritated, dry, cracked or all three, particularly in delicate areas. Sex might be painful. My periods would probably stop, and should. If they continued, then that was a major problem. I could expect ringing in my ears, severe fatigue, loss of appetite, possible weight gain, loss of sleep, and I was at huge risk of picking up every bug going around because of my compromised immune system. They talked to us about chemo brain and that they don’t really know what causes it because apparently the drugs don’t affect the brain. I could expect to feel less mentally alert, confused, emotional, anxious and even angry throughout the course of treatment. I was also not permitted to work as that placed me at too high a risk of falling ill.
Phil was also told that he should not use the same toilet as me for the first seven days after each treatment. This was because the drugs would take that week to flush out of my system and he should reduce his risk of exposure. Being exposed to the drugs could potentially cause him to build up a resistance to them, which would not be good if he ever needed them in the future.
I was still feeling invincible.
I remember so clearly saying to the nurse, …”I am fit and healthy, I am strong and should get through this no problems. I never get sick, so I will be fine. You can’t keep me down for long”.
Little did I know at that point that my Wonder Woman superhero tendencies were about to take a severe beating.
I had five months to get through. I knew it would go fast, but I also knew I couldn’t wish that time away and I still needed to walk every step, of each of the days, through those five months.
I had been given four weeks to recover from my surgery and they wanted to start as quickly as possible. We were caught off guard a bit thinking we had six weeks before I had to start. My eldest son was in the middle of Year 12 final exams and was about to turn 18. He really didn’t need the added pressure and worry. For a long time I felt guilty as a mum that I couldn’t fully support him during that time. It had been a tough year for him already.
My guilt soon turned to pride. I have deliberately raised my kids to be resilient, independent and self-reliant. He demonstrated all of those attributes, stepped up and did what he needed to do. It was tough, and he felt the pressure, but he absolutely did his best and I am amazed at how he got himself through.
The first day had arrived. It was a Thursday. I felt mixed emotions. Phil felt apprehensive, but was as positive and supportive as usual. I’m sure he was as terrified as I was, but he didn’t want to tell me.
We initially expected to be at the hospital for about three hours and spent our time chatting about picking the kids up from school, what was for dinner, and other normal family conversation. We had a ‘just get on with it’ kind of attitude and wanted the day to be over as quickly as possible. We didn’t know how I was going to be affected and were open-minded with our expectations.
We were more concerned with the fact that because the first treatment was scheduled much earlier than expected, my Son’s birthday celebrations were being held a few days away and we needed to consider possibly cancelling. I insisted that the party go ahead and I would be positioning myself on the lounge! I didn’t want my Son to be affected even more than he already had been.
Upon arriving at the infusion unit we had a long wait. We had to see the Oncologist beforehand, to make sure that he was happy with my blood tests that I had the day before. I filled out the obligatory paperwork. So much paperwork, everywhere we went. We chatted to one of the nurses and then she asked me how I was feeling.
That was when I felt the fear. And I cried.
We then needed to wait for the Pharmacist to make the drugs. Because every person’s cocktail is different, they don’t store the concoction but make it as it is needed.
The unit was very busy that day and we waited three hours for the drugs to arrive. We thought we might be finished by this time, and here we were just beginning.
I was hooked up with an intravenous line in my right arm. I can’t use my left arm at all anymore for bloods, lines, blood pressure and so on because of the increased risk of Lymphedema after surgery.
The chemo drugs needed to be administered one at a time. They connected up the machine ready to go after putting on gowns, masks and gloves. This was very confronting for us, but for the same reasons Phil was told not to use the same toilet as me, the same goes for the nurses handling the drugs. They have a much greater risk of exposure through their contact with patients.
I can’t even remember the long scientific names of all the drugs, but I do remember the first one was bright red. It took about twenty minutes to get through the bag hanging on the hook. The nurse sat with me for the first few minutes, which is apparently necessary procedure. She was watching for any reaction I may have had in the first few minutes. She was also keeping a close eye on my veins.
All was going well, and then I was ready for the changeover to the next drug.
I was not prepared for what happened next.
Those first few minutes while the nurse sat with me I was fine. It was after she walked away when everything changed.
My heart started racing, my body quickly felt extremely hot and I was bright red from my toes up to the top of my head. It happened so quickly. I remember saying …”wow, this stuff packs a punch…”
All of a sudden I couldn’t breathe.
The nurses came running from everywhere. They drew the curtain, to either give me privacy or not scare the other patients, or both… I’m not sure which.
They turned the machine off to stop the drug and gave me a quick dose of steroids. They hooked me up to an ECG to check my heart, and put an oxygen mask on my face. Phil had been sitting next to me when it happened and it all unfolded in front of him. He did not know what to do. It was terrifying for me to experience it, let alone him watching it.
Thankfully, the steroids worked quickly. I could breathe easily, my heart rate slowed, my blood pressure started to come down and the lobster redness subsided.
They monitored me closely for some time while talking us through what had happened. I had a reaction. For me, the only way I can describe it is to say it was like an anaphylactic reaction. I was lucky that they were right there beside me. Apparently that kind of reaction is not common, but does happen. Most people recover after and can continue with treatment, like me. But apparently, occasionally, some don’t live through it to tell the tale.
I still needed to have the rest of that drug. Thankfully the steroids avoided any further reaction and I continued on as planned. It would also mean that I needed that dose of steroids before each round of treatment from then on.
The rest of the day was uneventful, but it was long.
We were at the infusion unit for six hours. We were both cared for, fed and watered. And when it came time to leave, we were both shattered.
We said our goodbyes, checked our appointments for the next round in three weeks time and made our way home to go back to normal life and be parents.
That Thursday night I felt fine. The next day, I got up and drove my kids to school. I was feeling great.
By Friday night I was going downhill quickly.
I went to bed Friday night, and that is where I stayed until Sunday.
The Mack truck had hit, and it was hell.
We all know the feeling of suffering through a serious flu and being bed ridden, not able to function. That’s probably the only way I can think to describe it… but magnify that feeling by about ten fold.
What was surprising, however, was that I never suffered with nausea or vomiting. Not once. That alone made it so much easier to cope with. I can only imagine how much worse it would have been if I hadn’t been well. Thankfully, my Oncologist had agreed that I could continue to take my natural supplements through treatment and they made all the difference.
I got out of bed on the Sunday morning, managed to have a shower without passing out, and spent the day on the lounge with our family around us to celebrate my Son’s 18th birthday. I couldn’t do anything, but I didn’t need to. Our beautiful family rallied around and took care of everything. I spent the day drifting in and out of sleep.
I spent several more days enduring that Mack truck state. I felt weak, it was difficult to breathe properly, and small activities would exhaust me quickly. I spent a week like that, was a little better in the second week and then the third week I picked up again and needed to prepare for round two.
Each subsequent round of chemo was different. Some hit me harder than others. It was such a difficult time and I couldn’t function for much of it.
Round two occurred on Christmas Eve. Again, I felt well that night, and I got through Christmas Day and then the Mack truck hit again. It hit harder than the first time.
I had lost all my hair by this time, all over my body. It was difficult, but I had to accept it.
After my next round my veins in my right arm collapsed and I needed to have a PICC (peripherally inserted central catheter) line put in. This means that they insert a thin tube into a large vein in your arm and feed it through to the heart. It meant that further damage to my veins could be avoided. As a result of the damage to my veins before the PICC line was put in, I don’t have too many spots left that I can have blood taken. Even now, I am often left bruised after several attempts with needles being inserted all over the place!
Because my treatment continued through the summer months, our kids didn’t have the chance to enjoy their school holidays like they normally would have. I spent a lot of that time either in bed, or on the lounge.
Those times were hard. And there were several days when I felt like I could not go on. I remember thinking ‘just take me now’, because it seemed it would be better that way. But… I could fall in a heap and feel sorry for myself, or I could rise and be brave.
Phil and I were so fortunate to have some wonderful friends and family who cooked for us and grocery shopped for us.
We would not have got through without that support.
Through this time, we really saw how wonderful the human spirit can be. Those people in our lives, who gave of themselves so much, made a very big difference in our lives and our children’s lives.
We are forever grateful to those people. You know who you are!
Chemo is long finished now. I was discharged by the Oncologist not long after my treatment ended.
I am in remission.
But, the aftermath is lasting. I have many side effects now that I live with every day that people don’t see. My body is forever changed in so many ways.
The tips of my fingers and toes are numb. My eyesight has deteriorated and needs to be monitored each year. I have a permanently runny nose. I experience ringing in my ears. I still get confused and have lost the ability to mentally plan and organise. I now heavily rely on writing lists, using a physical diary and I need to schedule reminders in my phone. Sometimes I can’t get my words out. I know what word needs to come out, but my mouth doesn’t work. My short term memory has suffered and I have begun menopause. I sometimes wake several times during the night, and in a pool of sweat. I also need to take medication for up to ten years.
However, I have learnt to manage those issues and continue to rebuild my strength. It could still take some time for my cognitive function to improve, and other side effects will be with me forever. I have adapted and accepted that I need to do some things differently than I did before chemo.
My new challenges do not stop me from working, running a successful business, walking along my favourite beach, or functioning as a mum, wife, friend or sister. I may need a bit more time to myself, a bit more down time, and time to move slower, but I can still do almost anything I want to. And I want to…
I am a warrior. I am a survivor, and I am brave. I have a second chance, and I will not be wasting it…