I want to help people who cannot see the light but live in darkness. This blog is about bringing positive back for people who have lost all hope and help them strive to do better and become driven to follow their dreams.
This blog is dedicated to all human beings. I want people to be aware of, and support, what happens to a person and how to help people in different situations. I want people, who are in different situations to know there is light at the end of the tunnel. I want every person to know that you can work your way through things and that there is always hope, even when there seems like there is none.
SURVIVING CANCER - Pt I
I stewed on how to write this blog. I know of people still going through this horrible disease, and recently had someone I know die from it. A bright light extinguished, and the world is worse off. The only bright side to going through this horror is that if you make it, you are a bit stronger. Six years on I am still suffering the side effects of chemotherapy.
I can only speak to my experiences
WHAT IT CAN DO TO YOU:
Feelings of despair
Isolation and loneliness - disconnection
Changes in temperament
Not knowing the outcome
People not really understanding the process
People not understanding exactly what you are going through
Constantly feeling ill - nausea, diarrhea, headaches, sweating, aches/pain, dizziness
Constant feeling of fatigue
Loss of brain function
WHAT CHEMO DOES TO THE BODY
(I can only speak to what I went through. I did not do radiation therapy)
While going through Chemo
Nausea, Diarrhea, hair loss, skin conditions, unable to eat,
prolonged use of steroids - weight gain
Regular body functions suspended or become irregular
Neuropathy - loss of feeling (nerves) through hands and feet
Loss of memory retention and thought processes - “Chemo Brain”
Not able to touch anything cold (otherwise electric shocks to the body)
Regular body functions suspended or become irregular
Neuropathy - loss of feeling through hands and feet
Loss of memory retention and thought processes - “Chemo Brain”
You see it’s not just the disease that halts your life, but the toxins they put into your body that wreaks havoc for years to come. My experience is that you get support during the disease and chemo phase, but people think you are fine after that. The thing is... that is where I crashed and that is where most of the support ended.
I was diagnosed-with stage two bowel cancer six years ago. I was positive and did not respond to the sea of worried faces and words until I knew exactly what I had, and what I needed to do about it. Always being asked “are you okay?” was a question on a day-to-day basis. I was more worried about how I was going to afford two mortgages without a job. Thankfully my family said not to worry. After 8 months off it nearly broke me. I was single and had to fend for myself. I did not have constant company, so I had to be strong for myself ... and others. I never cried or had a worry, even past the first operation.
My mindset was this: it’s stage two, I’ll be ok, I have support, I can do this, it’s not a death sentence, I will worry and deal with issues as they arise. My doctors often told me my positivity was outstanding. My strength was amazing. I was ok. I pushed on living in the moment. Truth - it was terrifying, but I just had to battle on. I had no other option. So set with a tough mentality I set out to get back on my feet as soon as possible.
I went in for my operation late November. I was told, by my surgeon that only 3% of his patients had complications. We were both positive. When I came out of the operation, I was told they had found a secondary site for cancer cells, so I was deemed a stage three and now had to undergo chemotherapy. My heart sunk a little bit, but I still believed I would be ok. Onward I went.
I went home to my parent’s place (on a Thursday), in the country, for recuperation and support. I was back in hospital one week later. After a few days at my parents, I began to feel ill. The feeling got worse. Mum took me down to the emergency ward, at the little country hospital, to which I vomited up two litres of green liquid. I was dehydrated and very ill. After consultation with my surgeon, I was admitted into hospital, for the evening, to see how I went. I felt so sick I didn’t care. They were asked to give me a gastro nasal tube (tube from inside my nose to my tummy) but could not achieve it. They could not get intravenous drips or bloodwork from me as I was so dehydrated my veins did not work. I ended up with a subliminal drip (to the abdomen), which is usually what last stage cancer patients needed due to their veins no longer working.
A night in hospital and I was no better. My doctor asked that I be “flown” or “ambulanced” back to the city hospital. Australia is fortunate to have the “Royal Flying Doctors Service (RFDS)”. This is a flying emergency health service, funded by donations. I ended up being flown back to the city late in the afternoon. The ride was effortless and amazing. The ambulance ride from the airport to the private hospital was bumpy. I am thankful that the RFDS is in operation, and that the people of Australia donate to this amazing cause.
At this stage I did not care. I was too ill to think, but knew I was in good hands. I got to the hospital, and it took them 20 seconds to get a gastric tube down my nose... painless but an experience I never want to have again. Days of scans, blood tests and more scans. It is hard to get blood out of me at most times, but I was so dehydrated that no one could get blood out of me. The needed to do bloodwork as I was now getting fed through a tube. The bloodwork determines what they put in the liquid food. The only time I cried is when the ladies came in every morning to try to ‘jab’ me to get blood. They never succeeded. They once had two doctors and an anaesthetist in my room, with a portable scanner, to try to navigate my veins to get blood. In the end they tried extracting blood from my feet. I was in so much pain so I was screaming - my veins would not assist.
So, it was decided I would have to get a PIC (Peripheral IV Canula). To put this in, as it was highly sensitive and prone to infection, I had to go to recovery. This was put into my left shoulder down the vein into my arm. It took them a hand scanner, three attempts and three hours to get it placed correctly. This, however, was a godsend. It had four ports. This was a blessing. It took then a hand scanner, three attempts and three hours to get it placed correctly. This, however, was a godsend. It had four ports.
One port was for intravenous feeding, this had to be sterilised and changed every 24 hours. I would get my bloodwork done in the morning then, based on that bloodwork, a special chemist would make up the proteins and nutrients to go into my body. This process was also sterilised and had to be hooked up with gloves as it was highly infectious. Two ports were for taking blood only and one was a spare port.
For a week, every second day, my nasogastric tube was plugged up and I was given a solution for a machine that could see what was going on in my abdomen. Problem was, when my tube was plugged up, I knew I would eventually vomit. It was inevitable but had to happen. They were trying to explore what was wrong with me. I hated those days. Feeling that sick was horrible. I would be lay down and be strapped to a machine. The machine would then rotate up, down, sideways, and upright. They were trying to find out why my bowel was blocked and would not work.
They found the problem, and after a week of being at the hospital, I was ready for my second surgery. At the same time, they were going to implant a small round disc in my top right pectoral. This was called a port. Because I had problems with my veins, they decided this was best, as it was a long-term solution and could stay in place for longer. A canular could only stay in for three days. My PIC could only stay in for up to six weeks. They did not know how long I would be in hospital for, plus I still had Chemotherapy to go. That required bloodwork on a weekly basis.
Back up in my room, after my second surgery and groggy after the anaesthetic wore off, I started to have incredible pain. Usually, I have a high pain threshold, so it takes a lot of pain for me to give into it. In the end, about every two minutes, I was cramping. The pain was unbearable. I was having muscle spasms in my tummy, and due to my recent surgery, the pain was immeasurable. It took several hours to get an anaesthetist, but I had two injections each side if my waist in the back. I was then told had to go on pain medication…
Several years before this I had major back surgery. A tale for another day, but when I was weaned off the drugs I was taking, I underwent severe withdrawals. Headaches, cramping, nausea, sweating. I thought I was dying. But I stuck to my guns and got through it in the end. I learned from that experience that I have a hell of a lot of willpower. Strength in bucketloads. The main drub that affected me was called Tramadol.
Once again, they were telling me I had to take tramadol. I did not want that drug in my system. The medication had to be in drip from, due to the fact my body was not digesting properly. No way was I going through that again. I argued with the doctors. We made a compromise - 2 days was how long I was willing to use this drug. Then they all had to take me off it or find something different, with less side effects. I was constantly told off for not hitting the dispense button enough, so they put me on automatic. I was no longer in control of how much dosage I was getting. Looking back, I find that funny. You’d think I would want to be all doped up. But I knew where that path landed, and it frighted me.
Throughout all this my surgeon was the nicest, down to earth, human being. Even the staff through very highly of him. He was a Mister… not a doctor. The only days I did not see him were Sundays and New Years Day. He even came in Christmas day, to check up on me. I was told by the staff he had been very worried. I often joked with him that I was a 3 percenter. He had booked a holiday, towards the end of my stay in hospital. He did not want to go and felt bad, but I had a wonderful replacement and I trusted them implacably. Apparently, I was put on a special list of a group of doctors that had patients they were having problems with. They then would proceed to problem solve how to go about my cure.
Before I went into hospital, I was seeing a psychologist and a psychiatrist. They both worked in the hospital so I would have weekly visits from both to make sure I was okay. One of the main concerns, was the fact I was on antidepressants. I could no longer take these as I could not ingest anything orally. Seeing I was on the top dosage of an opioid everyone was very worried about how my body would respond. They were all amazed at how well I was doing. The thing was that I as so very sick, I did not notice or care. It all seemed to play in with how I was feeling. Which was very, very, very ill.
One thing I was very disappointed with was I had Hugh Jackman tickets for a show he was travelling with. I never got to go. It was something I had organised with family. They dropped me off a program and told me how amazing it was. But it was not the same.
It was now a waiting game. I was in hospital for a further 5 weeks. I took it 1 day at a time. I walked every day. They told me this would help my bowel to work. After 3 ½ weeks the gunk being leaked from my tube was minimal, so they decided to start to feed me clear fluids. Seriously. If I never have chicken, beef, or vegetable broth again it will be too soon. I persevered. I did well and half a week later they decided to take the tube out and feed me solid food. My joy could not be expressed. At that point in time, I was elated.
The hardest thing I found, to be honest (and after the PICC line was put in), was the fact I could not wash my hair. I had long luscious hair, but the pic line meant showering was, well, a bit difficult and cumbersome. I did not get my hair washed for 5 weeks. I hated it. When the drips were removed, I was allowed to go out of the hospital for a few hours at a time. I had to tell the staff where I was going, the person taking me had to sign me out. It was ridged, but better than what I was used to.
My day consisted of the following:
Walking, walking and more walking. Breakfast, lunch, and dinner. By 4pm I would start to feel ill. By 6pm I would vomit up about a litre of green liquid.
One of these days my friend came and took me to a hairdresser. I cried when I had my hair done. I felt clean and almost normal. After a week of throwing up I was told I would need another tube put in, further into my abdomen this time. I cried. Asked them to give me two days. The thought of going back to being fed through a tube almost broke me. It was mainly the fact that I felt I was going backwards and not forwards. Spending more time in the hospital and having to communicate via phone. I was lovely that people wanted to know how I was. But repeating the same story over and over, each day, was something I did not like or want to do. Some days I did not even want to talk to anyone.
Then a miracle happened. Busy going about my mundane life, in a hospital, I looked up at the clock… hang on its 6pm. I don’t feel sick. I cried and cried. I waited another two hours. When they came to check on me, I excitedly told them I did not feel ill. No nausea. The doctors in the morning told me that if I could go two more days, without vomiting, and performed the poo-wee tests (to ensure all was working normally), I could finally be discharged. Everyone in the ward was ecstatic. Being there for so long I formed a solid bond with the staff. They were amazing, funny and beautiful souls. I made friends with some of these people. I still am in contact with some of them to this day. On my last day they brought me balloons. Knowing full well how happy I was.
My only sadness on leaving was that my surgeon was not there to get the thanks and satisfaction he deserved. All his worry, long days and constant visits. He was amazing. I was discharged on a Friday. One month later I would start chemotherapy. I went home to my parents for some recouperation.
… let the fun begin.