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 II
I can only speak to my experiences
Part two of this saga. I was released from hospital in early January. I started my six months of chemotherapy later that month.
I must admit, I did not know what to expect. All I had really seen was what everyone sees on television. People sit around, hocked up to an iv drip and look solum or talk about how bad they are. I purchased a pair of pink sketcher shoes. I called these my ‘chemo’ shoes. Trying to put something nice in the mix in an otherwise horrible situation.
I was told that on my first day I was to rock up to the hospital (an hour away), early in the morning so that I could get my bloods taken. Then after a few hours of waiting I would go up to the cancer ward and wait to be admitted. My bloods determined what would go into my “cocktail” of poison. I tended to start my day super early so that I would not have to be all day at the hospital. The fact I lived an hour away from my treatment meant that if I was not admitted early enough, I would spend ALL my day either at hospital or in traffic. I was not supposed to drive myself… but then how else could I get there? The first day was very long. I had a 2 hour ‘introduction’ on chemotherapy, what to expect, as well as all the possible side effects of chemotherapy. My treatment was every second week from a Wednesday to a Friday.
My treatment would consist of the following:
1. Get to hospital to get my bloods taken through my port (a godsend as it spared pointless pricking without any result).
2. Go have breakfast in the café and wait for the blood to be analysed
3. Head up to the cancer ward, where I would wait to be admitted for the day – sometimes I would wait up to 2 hours. Wait time soon decreased when I spoke to my oncologist about why I was there so early and why I wanted to leave early – If I did not leave the hospital before 3pm I would be stuck in traffic for over 2 hours. Basically, I was always trying to beat the traffic. If I left early enough, I would avoid the early morning rush into the city. If I left early, I would beat the early afternoon rush to get home.
4. Once admitted onto the cancer ward, I would be weighed then I could either choose a room (for 1 person) or a chair. I requested a room on an ongoing basis. If there were none available, I would have to sit out watching everyone else get their treatment (which I hated). My process for the day was a 5-hour dose. This was in 3 stages, and everything went through my port. They used to numb the skin where the port was, then prick it with the iv. So much better than having holes in my arms at the attempts to find a vein.
5. There were wonderful volunteers who would come around and do different things. Chat, rub your feet, feed you (well in my case I would get snacks, drinks, and lunch).
6. At the conclusion of the day, I would get a portable pack of my own special brew of chemo. I would then be able to go home with my ‘port-o-pack’. The pack lasted around 50 hours so when it was done, I would drive back, sometime on a Friday, and get everything taken out.
7. I would then spend the next 5 days with no energy, no appetite, feeling nauseas, dizzy and constantly taking my temperature.
So “chemo brain” is an actual thing. It’s not pleasant and it is very frustrating. Changes in thinking and memory. Some people have trouble thinking clearly and concentrating after chemotherapy (cognitive dysfunction). This condition usually improves or resolves after chemotherapy ends.
Common side effects of chemotherapy drugs include:
· Hair loss
· Loss of appetite
· Mouth, throat and facial sores
· Easy bruising
Many of these side effects can be prevented or treated. Most side effects subside after treatment ends. I had ALL of these symptoms ☹
Long-lasting and late-developing side effects
Chemotherapy drugs can also cause side effects that don't become evident until months or years after treatment. Late side effects vary depending on the chemotherapy drug but can include:
· Damage to lung tissue
· Heart problems
· Kidney problems
· Nerve damage (peripheral neuropathy)
· Risk of a second cancer
Neuropathy (nervous system) effects that are now subsiding include these nerve or muscle symptoms:
· Weakness or numbness in the hands, feet, or both
· Weak, sore, tired, or achy muscles
· Loss of balance
· Shaking or trembling
· Stiff neck or headache
· Problems seeing, hearing, or walking normally
· Feeling clumsy
Most side effects go away after chemotherapy is complete. But some continue or come back or develop later. Six years on I still have neuropathy, slight chemo brain (getting better), and fertility problems.
My first “chemo” experience
The first few days I thought I was fine. My parents were holidaying in their caravan, about 3 hours away, and wanted me to join them. I think my mum just wanted to keep an eye on me to make sure I was okay. I got my ‘portable chemo’ taken out on the Friday and headed down to Busselton on the Saturday. I loved going camping with them. A lot of laughter and fun usually.
By the Monday I had constant diarrhea and was severely dehydrated. They took me to the local hospital who gave me some medication and checked all my vitals. Needless to say, I was quite ill. I also had to purchase a thermometer. Chemo patients have to keep a close eye on their temperature, as it is prone to rise quite suddenly. It’s also quite dangerous. From this point on I was nauseas 24/7 for the whole 6 months. There was NOTHING that the doctors game me that would work.
It took me a full five days to recover from my first round of chemo.
Home life with cancer and chemotherapy.
Also with my chemo, while I was in the ‘on’ week, I could not touch anything cold. I would get an electric shock sensation. I was told to “stay away” from anything cold. Seeing as it was summer in Western Australia (so very hot) and I had a swimming pool at the house I was living in, this was a tough ask. But I soon learned to head the warning.
All I felt like eating, most days, were fruit and vegetables. You think I would have lost a tonne of weight, but apparently my chemo mix had a lot of steroids in it. So, I gained weight not lost it. Some days I found it hard to even get out of bed. The lack of energy astounded me; I would take three steps then ‘nope’ I need to lay down.
I had visitors come to make sure I was okay, and I shifted into a new home several months into the chemo. My parents came up to the city, when they could, and helped me ‘around the house’. The constant diarrhoea then constipation and nausea would be enough to do anyone’s head in. not being able to do much also weighs on your mind. Depression sets in. I tried very hard to combat all of this. Still seeing my psychologist and psychiatrist on a weekly/monthly basis. I had to keep telling myself it was just for six months. It was not for ever.
I remember when I went to get my chemo in May. I kept thinking seven weeks to go… seven weeks to go. Then my bloodwork came back, and my neutrophils were at zero. This meant my white blood cells had no battery. My risk of infection was on alert. I had to skip chemo that cycle. I cried so much as that added two more weeks to my deadline.
I felt like I was just living to be in constant pain and feeling sick. My life did not exist outside of this six month of hell. Rest, recoup, chemo, feeling sick, no energy, boredom was all that I had. Every now and again I would get a burst of energy, overdo it and be right back to square one again. I soon learned to curtail my energy bursts, so that they would last longer. To people who get a recurrence of cancer, then say they will not do chemotherapy anymore. I UNDERSTAND you and your choice. It is not living. You feel like the living death. Existing not living.
I found it hard to answer the myriad of phone calls and well wishes. Tired, feeling sick and regurgitating how I am and how my day was… plays on you. I did not want to ‘people’ on the phone. It took too much out of my mental strain and anguish. I learned to do the little things I loved, bit by bit. Worried about not working, feeling sick all the time, and having not much to do soon saw me return to work. I was told by my oncologist I was not to go back to full time work. But how was I to survive.
By late May neuropathy had set in. I had to wear gloves on my hands and watch everywhere I walked. Not being able to feel your hands and feet were one thing. The pain, electric shocks, and everything else that came with it, on top of all the other symptoms, made life even harder. I was basically on my own. My parents did what they could when they could, but they lived 2 hours away. Everything I went through; I went through alone. My thoughts were my own, my struggles where my own; but I did share my accomplishments.
Work life and finances with cancer and chemotherapy.
All through my hospitalisation for my surgery, I was building a house. Just before I was diagnosed, I signed all my paperwork to build my ‘forever’ home. Now, not being able to work, I was scared. All I was allowed to take, out of my superannuation (401k for the US citizens reading this) was $10,000. That barely covered my bills each month. I had to go on social benefits, which I hated. I was used to earning a good salary. I got a full-time job in the March of that year. They knew I was going through chemotherapy. I was not supposed to work full time. But I had to. How was I going to afford a new home and monthly bills?
Basically, having all the time off for my operation (since November the previous year), plus paying for my rental property (which was not rented at the time), then building my new home saw all of my savings’ wither and die. I never fully recovered from this debt.
I would get every second Wednesday off work as well as a few hours on a Friday afternoon, to get my portable chemo devise taken out. The chemo brain had a massive impact on my work. I left one workplace and started at another. This massively impacted my mental wellbeing. Most people do not understand the impact of chemo. This workplace was not interested and made it very difficult the thrive. The new workplace was much better.
I still have neuropathy today. I often say to my husband he got a broken Australian. He loves me regardless of my weaknesses. I often ask him if he wants his money back 😊
In Australia we have the Cancer Caouncil. They operate under three main banners: Research, Prevention, Support.
They organise workshops for all different situations and people. For me I had the benefit of volunteers at the hospital that would come and generate conversation - during a 5 hour stint each day it was a relief - makeup and presenetation workshop. I got to invite a friend to attend a workshop about how chemotherapy alters your skin; how to apply makeup; wear a wig or headdress. Then we got to keep the makeup. All donated by Revlon, Maybeline, L'Oreal etc. It was well worth the attendence.
A global website for Cancer resources:
Cancer Council is a respected global leader in funding and conducting cancer research, and has made key contributions to progress in cancer prevention, treatment, and support. Their investment extends across all cancers, and all stages of the cancer journey. They have become one of the largest non-government funder of cancer research in Australia, investing almost $250 million in Australian cancer research over the past five years alone.
Develop programs that encourage and empower Australians to lead healthier lifestyles to help reduce their cancer risk. Cancer Council provides information and support to help reduce their risk of cancer by taking action that helps prevent cancers, including quitting smoking, being SunSmart, eating well, maintaining a healthy weight, limiting alcohol intake, being physically active and getting checked by participating in cancer screening programs.
Supporting people affected by cancer is challenging, and when you, or someone you love, is dealing with a cancer diagnosis; travelling for treatment; or adjusting to life after cancer treatment; getting the right information and support is crucial.
Cancer Council is the only charity in Australia that delivers a comprehensive range of support services for all people, affected by all cancers, across every state and territory. Their support services include information, counselling, practical and emotional support, all designed with and for people affected by cancer, for every stage of the cancer journey.
Global Charities and Advocacy Organizations: Mystic Mag is a wonderful and helpful website resrouce.