Be at Ease
Being calm is the key to Chemotherapy
Patience
These things don't happen overnight
Talk
Most importantly, Always ask Questions
My Chemotherapy
in Townsville
About Me
My name is Dennis, I am 59 years old and I have liver cancer.
Before we get started, I would like to point out that this is a personal point of view from what
I have experienced and what I was confronted with. I cannot speak for those with other forms of cancer
as I would only be pretending to know anything about them.
This is my effort to tell people what I am going through and what others can expect. Each person will
have different conditions and effects due to the chemotherapy (chemo) that they will endure but be
assured, conditions and environments will basically be the same.
Back in February of 2019, I started to have problems with my bowels where having a poo was becoming difficult but as always,
life always seems to get in the way and in my situation, I was moving house and not being able to afford removalists I moved
everything on my own.
Then I had planned a holiday in which all was paid up front, so I decided to go on that while making a mental note to see the doctor
upon my return.
With everything out of the way and settled back at home, I made the appointment to see the doctor. Being given a kit of
test tubes and forms, I
submitted my stool samples and waited. The result was blood in my poo. With the referral done, they told me that it could be a little while
before the colonoscopy could be done. A long story short, I was supposed to have the colonoscopy done within two weeks of the doctors visit
but the hospital forgot all about me and after six months, I had to make the phone call to the hospital.
Pushing me in-between other patience's,
the procedure was done and after waking up, I was informed that the camera could only go as far as 150mm into
my bowels and they will be arranging
an operation to see what the blockage was.
They told me that it could be two weeks before the operation and I said, "You better make that now because I can't poo anymore".
Three days later, I was under the knife and the blockage ended up being the size of Arnold Schwarzenegger's
clenched fist. The blockage was cancerous
and with extra bowel and lymph nodes removed, I was informed several days later that they got all the cancer out.
The next problem was my liver. After several CT Scans and one PET Scan, the spots on my liver were everywhere and I was told that
it was inoperable. Bit of a blow to the ego but it is what it is I suppose. But hold on, they told me it was
inoperable, they didn't say anything
about terminal!
So what does inoperable mean?
This is where I started to ask questions. One doctor is telling me that urgent chemo is required to eradicate
as much of the cancer as possible
and then cut the rest out of the liver while the oncologist is saying I have three years left to live. Who's telling the truth here and why is
one doctor giving me hope while the other is saying you will be dead soon (Not in those words mind you but you get my meaning).
As with all such diagnosis', the first question people will ask is "How long have I got?" The answers can be
confusing and yet most are straight
to the point but in my case, confusing would be an under statement. The oncologist said, in an ordinary way,
three years but four could be possible and
that is based on treatment. Without treatment, they estimated (Guessed) eighteen months.
More questions started to come to mind. If I didn't have the bowel obstruction I would never known about
the cancer in the liver and I would've just kept
living day by day without any clue what was going on inside my body. I mean, you only go to the doctor when
you are sick, right! So the first question I
had was, which came first, the bowel cancer or the liver cancer? There is no true way of knowing this but
the most logical answer would be, the
bowel cancer first and then the liver cancer second. When it comes to livers, you have to understand that
75% of the liver can be cut out and it will grow back, but
in my situation, the cancer had transferred from the bowel to the liver meaning it had spread thus making me a cancer patient.
In my situation, inoperable means that I have cancer spots everywhere on my liver which means the entire liver would
have to be removed. As I am classed as a
bowel cancer sufferer, even though they have removed all of that cancer successfully, I am not a candidate for a liver
transplant. In plain text, my situation of
inoperable also meant, terminal.
The future?
So how long have I had liver cancer? How long do I truly have? How did I get it? So many questions with no true answers!
The truth is, alcohol, smoking, food with preservatives, meat with steroids, fly spray, deodorant, mobile phones, the air. So many things in this world
can give you cancer and whether you like to hear it or not, everyone has the cancer in them. It is a simple matter of what makes it active. My grandmother
smoked and drank her entire life but never got cancer, in any form. A close friend never smoked, drank or even masturbated, but
yet succumbed to bladder cancer. How???
It is now a matter of luck in our day and age of the 21st century and when they talk about diseases spreading throughout the world, wouldn't Cancer be classed
as a Pandemic.
I have cancer and I have a limited amount of time on this planet. Because of that, I had to make one of
two of the biggest decisions in my entire life. Do I choose quality of life or quantity of life?
As that sentence states, do I want to live the rest of my days out in comfort and taking each day as they come or do I want to extend the maximum
amount of time allowed with my life? They will be the two biggest questions you will have to ask yourself. Let's talk about the first one.
Quality of Life
Quality means what it states. Think back to a time when you had the best years of your life. For me, it was the 80's and 90's. I was in my prime then,
fit, healthy and able to do anything I wanted to do. In fact, I was almost bullet proof with the things I got up to. So in choosing quality of
life, I will still continue to live each day as if nothing was wrong with me and I would continue to do so until the cancer started to take control.
When it comes to cancer and quality, your time on this earth is unknown and if you have an idea of the amount of time left, then trying to finalize
everything before dying becomes a rush. If you have 12 months to live, that time will go quicker than you think but you also have to allow for the time
you will be in hospital on your death bed. That could range from 2 weeks to 2 months. If it is the latter, then your time to finalize things before you die
has now been reduced to 10 months.
Quantity of Life
This is where chemo comes into it. Chemo is actually giving you the time to do everything but you still can't sit around and wait for it. Instead of
having 10 months, you now have 3 years. Even then, 3 years will go very fast but once again you will have to allow for the time you will be in hospital. This
could equate to being 2 weeks to 2 months. It all depends on how fast the body is willing to give up or fight.
The Choice
This is going to be the hard decision for you. Do you want to spend your days out having as much fun with your wife and kids until the time has come, no
matter how short of time you have or do you want to have the maximum amount of time with your family? This is where it gets tricky, the first option is
no brain teaser but it will be short. The second, though, will have you last the longer time but think of the pain and discomfort you will be going
through when you have started the chemo. Whatever choice you make, arrangements will have to be made such as ensuring your wife and kids are well looked after,
discussing funeral plans, how you want to leave this world whether it be in a box or cremated. If you are the sole money earner, then you have to make sure that
your wife has full access to your bank accounts, ensuring that your superannuation will go directly to her and if you have any investments. The biggest thing
you must do is to have your wills done. With the knowledge that you are going to be dead soon, don't wait, just do it.
The most difficult part about all this is not you. You have been told that you will die soon, a bit of a blow, I know, but you will undoubtedly accept it, especially when the end is near because you will be wanting it to end. The hardest part about this is your partner, wife or spouse. They are the ones that are hurting. They are the ones that are in pain. It will be a pain you cannot see or hear but their pain will continue long after you have died. Knowing your time is nearing an end, it is now, right now, you have to start looking after them.
I have opted for quantity. That, for me, was a difficult choice as I had a compromising situation. One thing that has to be noted here is that my wife is a nurse. She has worked in all environments of the medical area including cancer patients. She was then thrust into a place of uncertainty as she has seen first hand what it is like to see a person go through the process of chemo but yet, she is my wife and being jealous of losing me, she wants me to be around for as long as possible. Right at that point, I knew that it wasn't all about me. I understood that other people were hurting. I lost my father to prostate cancer on 31st December 2018 after a 3 year battle and after 12 months, I had to inform everyone about my death sentence.
But what is my death sentence? With chemo, I am guaranteed 3 years but when I pushed them about how long I would have without treatment, one doctor said 8 months and the other said 18 months. That tells me that they have no idea. Let's put it like this. Someone with cancer goes on chemo, they do the chemo until they die. Now, the doctors now know the person lived for 3 years on chemo as they have a record of this persons chemo treatment and death. Let's do the exact same scenerio for 99 more people. The same situation, same criteria and they all lived for 3 years.
Out of the 100 people, they now have an average of 3 years of life on chemo because of the written records in their files.
Let's look at the person that chose not to do chemo. Do the doctors have an average for them? Not really! The only way they will know if they lived for 18 months is if that person, died in the same hospital where they were to have the initial treatment for their cancer and even then, the clinic would have to physically follow up on that person. Let's look at the other 99 people who opted out of chemo. Once again, same scenerio where they would actually have to follow up on each of the 99 other people to see if they are still alive only to find out they are dead. How do they know the averages? In truth, they wouldn't have a clue.
To get an actual average of life for someone not doing chemo, they would have to phone each person up and ask them, basically, are you still alive? The medical centre would have to do this once a year for all the 100 people until they started to get replies that they had passed away 6 months ago or 3 months ago or whatever. Then they can go back to their records of the people who opted out and mark in their records that they lasted for 'X' amount of time.
I asked several doctors, spoke to dozens of people and they always state the average life span of someone not doing chemo, is 18 months. With no records to prove this, they are simply guessing. What would happen if they actually did keep records and discovered that out of the 100 people that chose not to do the chemo, 75 of them lived for 6 years, then how do they justify chemotherapy? If that scenerio was true, then without chemo, you could live for 18 months, 6 years or even 15 years. The doctors can't say that won't happen because they have no definite answer nor the records to back them up. With chemo, though, you are guaranteed 3 to 4 years and then you die.
This is where hard decisions have to be made. Do you go on chemo knowing you will be dead in 3 years or take the chance and live day by day not knowing what your fate will be. Strange when we put it like that. We live our lives each day not knowing what is in store for us. As a healthy person, you don't know when you will die. Be it by self, murder, car accident or Mars hitting you on the head. We simply live day to day.
Is it worth it?
That is your choice.
If you have been told you have cancer and you don't want to know how much time you have left, go down that path.
If you have a family and you want to ensure your spouse and family are looked after, then most definitely as that will give you the time to arrange everything.
If there is a chance the chemo will kill off the cancer to the point where they can cut the rest out, then that is a must.
If there is a chance you can go into remission, go for it.
If you think they are full of crap, then that is denial until you realize that they were right and then you will have a short amount of time left.
There are so many things that the doctors and nurses won't tell you except from a medical point of view. They don't talk to you from the heart with human emotion. This is not by design but by choice as they have a job and if they get emotionally attached to the patient, it makes it harder to do their job. It's even harder when children are involved. When it comes to chemo, it is a cold world but they do treat you with the utmost respect.
“A brave heart and a courteous tongue. They shall carry thee far through the jungle, manling.”
The Treatment
Right then. You have been diagnosed with cancer and you have opted to do the chemo. If you have opted not to, then you wouldn't be reading this.
You have seen the oncologist, you have spoken to the support nurses and had your bloods taken. The day has come to start the chemo treatment.
Your in the waiting room and it all seems surreal as you look around you at the other people waiting to be seen. Some women have head scarf's on while men sit there
reading a book and then your name is called. Everyone looks at you as you stand but in all honesty, it is no different were you at the local medical centre waiting to see
the doctor about a headache or sore toe.
The nurse guides you into the chemo room and it opens up to a large area where there are dozens of recliner chairs with medical equipment next to it. You sit down and wait
for ten minutes while they prepare everything. Depending on your situation, you will either have an IV needle, PICC Line or a Chemotherapy Port in your chest. In layman
terms, the IV connection is used for light duty injections as they can't use this type of line for chemo as the chemicals will destroy the vein in no time. The PICC line is
used for direct injection into a main artery. In most cases, if a Port cannot be inserted but they want to start the chemo straight away, you will have a PICC line
inserted to start the process. Because it is going directly into a main artery, the more heavier duty chemicals can be implemented in this way. The last being the port
which is an access point under the skin at or around the chest. The Port is used for permanent injecting or if they need to take blood.
IV Line
(Image courtesy - Aboutkidshealth)
PICC Line
(Image courtesy - National Cancer Institute)
Port
(Image courtesy - National Cancer Institute)
In my case, I had a PICC line inserted as they wanted to start the chemo sooner rather than later but I eventually ended up getting the port installed. In all honesty, it sounds like
something from a sci-fi movie but yet we don't live in a world of Star Trek or Star Wars and even though medicine has come a long way, when it comes to chemo, it is more reminiscent of the Spanish
Inquisition or the dark ages. So, once seated and the nurse has everything ready, it is a simple matter of connecting the feed lines and letting the chemical do the rest. It all depends on what stage
of cancer you are at, worst case scenerio is you could be sitting in the chair for at least 5 hours. If your cancer is at a stage where they just want to control it, you could be there for an hour.
If it is the first, take some reading material or a tablet with movies on it as this will pass the time away.
The clinic I go to, I think they could truly do with more comfortable chairs but it is what it is, as I am usually there for 5 hours.
Where were we?
That's right, we are in the chair, and they have started pumping that crap into your body. At this stage, you don't feel anything at first as stage 1 is to prime your body. It is the second part that
has you feeling, well, different. Everybody will have different effects where some people will feel sick, others will sleep but for me, my eye lids fluttered but the main thing here is, if you feel
wierd in any way, tell the nurse.
If you are one of those that will be there for a long time, they will bring you something to eat and if you want a coffee, tea or water, just ask. I always took my iPad with me as I had heaps of pirate
movies on it and a few hacked games which I downloaded from the Apple store. 5 to 6 hours later, they were un-plugging me, filling out the forms and telling me to go home. But, wait, there's more.
That's right, I was one of the lucky participants to get a bottle connected to me so as I can take it home to finish the job of legal poisoning for a further 48 hours.
Comfort Chairs - Not
Image Courtesy - S.A Health
Takeaway pump
Image Courtesy - Cancer Research UK
The Poison
Image Courtesy - Express.co.uk
“If man doesn't learn to treat the oceans and the rainforest with respect, man will become extinct.”
The Side-Effects
With the treatment of chemotherapy, a group of drugs used to destroy cancerous cells, it comes with several side-effects of its own. Here we will list the range of effects you might or will be confronted with and to coincide with the range of effects, I will place a comment next to the ones that I have been lumped with.
Illness and a weakened immune system
Cancer and the treatment, can weaken the immune system.
Because chemotherapy kills healthy immune cells, it can make
a person more vulnerable to infection. Since a person's immune
system will be less able to fight off germs, infections may
also last longer. Eating a healthful diet, frequently washing
hands, avoiding people who are ill, and seeking prompt medical
care for signs of illness, can reduce the risk of serious infections.
This is the most important part that you will have to remember.
When I first started chemo, I inadvertantly stayed out in the sun
a little too long and suffered sunburn on the face. This took about
4 weeks to heal and I was covered in blisters and scabs until it healed.
So, in learning my lesson, staying out in the sun for 30 minutes is okay
but you will burn slightly. Any longer than 30 minutes, long sleeve
shirts, a broad rimmed hat and sun screen is a must. Have several bottles
of anti-bacterial hand wash in the house and car and use it regularly.
Buy the good multi-vitamin tablets and take two per day as this will help
in the healing process. Just remember, if it won't heal, go to the doctors.
Image Courtesy - University of Brimingham
Bruising and bleeding more easily
Chemotherapy can cause a person to bruise or bleed more easily.
Many people having chemotherapy experience this side effect, and it does
not usually cause concern. However, bleeding following a serious injury
can be dangerous. So it is a good idea to take precautions, such as
wearing gloves when gardening or cutting food. Also take proactive steps
to reduce falls and the risk of injury.
People should contact a doctor for any serious wounds, or for a bruise
or injury that seems to be healing very slowly.
Don't panic
It's not as bad as it sounds but as stated, you will have to be careful.
I am predominantly right handed and virtually crippled in my left except
when I need to pick my nose or hold the nail before hitting my thumb. Here
is an example of when a simple bump to my wrist showed a massive bruise the next
day. It still hasn't healed after 4 weeks and a bang to my head gave
me a small cut that has only just healed after 6 weeks.
As disgusting as it sounds, everybody picks their nose but here you have
to be careful, digging too deep or shovelling too hard, will cause bleeds.
This is because the membranes are so thin inside the nose that just rubbing
the inner surface will make it bleed. Get use to blowing your nose.
But not too hard
Image Courtesy - The Oklahoman
Hair Loss
Chemotherapy can damage hair follicles, causing the hair to weaken,
become brittle, and fall out. Any hair that regrows may be much thinner, or
a different color. This pattern usually continues until chemotherapy ends.
Hair almost always regrows after chemo.
A study in the journal Skin Therapy Letter estimates that 65 percent of people
receiving chemotherapy experience hair loss. No specific treatment can guarantee
hair loss prevention, but proper hair care may slow the loss of hair and promote
regrowth after treatment.
This was never a problem for me as I am virtually bald anyway.
For women, though, the idea can be traumatising and there isn't much
that can be done. For a female, if you haven't started your chemo yet,
start caring for your hair now. It won't stop the hair loss but it
may not take all of it. In saying that, not all women lose their hair
and let's not forget about the body hair such as arms, legs and pubic
hair.
My operation on my bowels resulted in the nurses shaving me bald
down there and my old pubes are still struggling to regrow but I still
have leg and arm hairs. The same should be for the women but for the
men, that's right, you are still stuck with shaving but be careful.
The skin on your face will be very tender and a cut may result in a
longer bleed. Where possible, try using an electric shaver or safety
blades for extreme tender skin.
If that doesn't work, just let the facial hair grow like me. I use a beard
trimmer which keeps it at a neat level.
Image Courtesy - MSN.com
Nausea and vomiting
Nausea and vomiting can come on suddenly,
appear after each chemotherapy session, or happen
seemingly at random.
Dietary changes, such as eating smaller meals or avoiding certain foods,
can help. Anti-nausea drugs may also be helpful, particularly for people
who experience nausea at predictable intervals, such as immediately after
chemotherapy.
I might be one of the lucky ones here as I haven't felt sick or nauseated.
The key here is the drugs. Funny word that is, here they are pumping you full
of illegal drugs legally and to counteract all the bad things, they give you
a whole pile of legal drugs. Before you start your chemo session, you will be
told to take a nausea drug an hour before. Then they pump in some drugs to stop
the vomiting and then they give a further needle to stop the stomach aches.
After they kick you out of the clinic, they would have given you a bunch of drugs
that will stop the nausea and vomiting and it is imperative that you take 2 tablets
per day (Morning and afternoon) for the first fortnight. If you need to take more,
then knock yourself out. This is what I did at first as it is easier to control those
feelings rather than try to get them under control which would be very hard.
The main thing is use the drugs and if you never dreamed yourself of doing this
in your entire life, go down to the chemist and get a tablet dispenser that has small partitions
that allow for 4 sessions per day. You will only need to use two of those partitions
as you will be taking one tablet twice a day. The daily dispensers will be no good for you.
Image Courtesy - Healthline
Constipation and diarrhea
Chemotherapy may trigger digestion problems because it can damage
cells that help digest food.
Other side effects of chemotherapy, such as nausea, can force people to
change their eating habits. These sudden changes can also cause digestive
problems. Avoiding foods that irritate the stomach may help, and
over-the-counter remedies for constipation, such as magnesium,
can make bowel movements less painful. Proper hydration can reduce the
severity of constipation and also prevent dehydration due to diarrhea,
which can also be a side effect of chemotherapy.
You would have recieved tablets for this as well.
After my chemo, I was informed that I could get diarrhea and they gave
some tablets to take for this as well. The list of tablets will be stated
later and what they are used for but in the mean time, let's discuss The
remedies.
First of all, when you get home, take two diarrhea tablets straight away. This
doesn't cause diarrhea but controls it. If you start taking too many, you end up
getting constipation. It is a fine line between the two but what worked for me
was two tablets straight away then one tablet twice a day for the first week. You
will notice that pooing won't be often but you won't have the diarrhea and in case
you forget about the tablets and diarrhea returns, then start all over again.
If you noticed pooing is difficult, stop the diarrhea tablets and let the body
do it's job. Sooner or later, you will find that right balance of poo or not to poo.
Then take one tablet once in the morning every second day. This balanced out
everything for me but it could be different for you. The one thing that must be
remembered is for your bowels to work properly, there has to be fluid in the body.
It is like trying to wash the dishes without water. No need to drink heaps of water
but if your mouth is dry, drink water and not soft drink or coffee or tea. If you
hate plain water, mix it with cordial.
Image Courtesy - MSN.com
Dry Mouth and Mouth Ulcers
Some people notice painful sores in their mouth 1 to 2 weeks after having
some form of chemotherapy.
The soreness can vary in severity. Sometimes, the sores may bleed or become infected.
Some people find relief from rinsing their mouth with warm salt water. Numbing gels
may also help. People should see a doctor for treatment if the sores are very painful
or weeping. To coincide with mouth ulcers, is the dry mouth syndrome which isn't
painful but annoying. The dry mouth can also cause mouth ulcers
I wasn't so lucky here.
Although it took 3 weeks to get the ulcers and 4 weeks for the dry mouth, the ulcers
were the worse. The key here is keeping your mouth clean. Washing your mouth out with
salt water is one remedy but one teaspoon of baking soda in a glass of warm water was
the saviour for me. An extra extra extra soft tooth brush with very mild mint toothpaste
should be used as the normal toothpaste may burn your mouth just like spicy foods.
Using numbing gels are a must also but be warned, always use rubber gloves and not your
heavy duty cleaning type. The ones that are used in hospitals can be easily
purchased from a chemist or grocery store. Whenever you put your hands in your mouth,
make sure they are sterile or you will cause more ulcers. By the way, the numbing gel will
sting like hell.
Dry mouth is annoying. You don't notice it so much through the day but more common of a night.
This is because you are starting to wind down, relaxing and watching television. You go to
bed and wake up a few hours later with your toungue stuck to the roof of your mouth, breathing
through your nose or worse, waking up gasping for air as you have blocked nostrils.
Not much can be done here except washing your mouth out and one good remedy is is constantly
use a dry mouth wash and is must have zero alcohol in it as that will cause ulcers.
Image Courtesy - Healthline
Dry Skin
Chemotherapy may cause dry skin.
Dry skin occurs when the layers of the skin lose essential oils and moisture and is quite often a side effect of chemotherapy.
Certain drugs which are used in the treatment can cause skin to become dry, flaky, cracked and peeling. Depending on the severity,
slight bleeding between lines of skin fold covering joints such as knuckles and elbows may occur. The splitting of skin will be most evident
on finger tips and at the tips of the toes.
There isn't much here than can be done accept preventative measures.
The dry flaky skin started around my third dose of chemo as I am almost naturally bald, it was most prominent on my head.
This was my main concern as I didn't like the idea of covering my scalp for the better of humanity. So to prevent this, I rubbed some skin cream
onto my head with soft but firm rubbing of the skin.
What worked for me was the Redwin Sensitive Skin Sorbolene Moisturiser. As I had dry skin before I started any chemo, this was the
perfect choice for me as it healed the dry skin and it absorbed fast without leaving my skin greasy. The skin you might have will depend on
whether it is greasy, normal or dry and from there, you have to work out which will better suit you. As there are a lot of brands out there for dry and greasy skin, the Redwin brand only makes one for any type of skin but is long lasting and it worked perfect for me.
The next chapter of dry skin will involve exfoliation. For women, this is easy as they most likely do this everyday but for the men, using
an exfoliate cream might seem un-manly, so an exfoliate brush or puff spounge can be used while the man is in the shower. The "Puff" isn't
as bad as it sounds as this can be rubbed with normal soap and then your body scrubbed clean in this manner. It doesn't get rid of it all but
it certainly does reduce the flaking of the skin. With me, it is perhaps every 3rd or 4th day I have to use the cream as well but this
could be more often for some men. To start, keep an eye out where the dry skin is forming and concentrate on those areas. This goes for the
women as well. At the last, if you are having a massive amount of flaky skin after using the methods above, see your oncologist or GP to see what
they recommend.
Image - Denlyn Computers
“A nation that destroys its soils destroys itself.”
The drugs
As chemo can get annoying, frustrating, painful and depressing, if you opted to go down this path,
then you should have some idea on what to expect. If you are new to it and you are reading this then
I hope I have helped you out. Now before the drugs are handed out, I cannot emphasize enough about
cleanliness. Hands especially but mouth, hair, skin, teeth and just about anything connected to that
beautiful body of yours you must keep clean always.
This doesn't mean all the time. If you doing the gardening, then that is good because you have to keep active.
Just make sure you wash your hands, face and mouth out when you are done. Having chemo doesn't mean you have
stop your daily tasks, you just have to limit and watch what you do in those tasks.
Now, there was one thing that I didn't mention about and that is the Rashes associated with chemo.
Depending how soft your skin is, don't be surprised if your face is attacked first. I found that rashes were
slight for me but they were still rashes on the face because that is where the thinnest part of your skin is. The
second area I found with me was my groin and yes, I always kept that place nice and clean. It just appeared.
If you are starting to get rashes, this means the chemo is working and if you had any sun spots or skin cancers that
you were always planning to get looked at, then the chemo will get rid of them for you but bruising, scabbing and rashes
will appear in those areas for a short time. As for the rashes, yep, they have a tablet for that as well.
At the last, if any side effects are causing you pain, try to range the pain from 1 to 10 with 10 being the worse pain.
If the side effects are bad, see your doctor straight away. If it is severe, admit yourself to the emergency department
at your nearest major hospital. Make sure you tell them you are on chemo.
| # | Problem | Drug | Solution |
|---|---|---|---|
| 1 | Dry Mouth | Biotene Dry Mouth Wash | Use 3 to 4 times a day and before going to bed. This will ease the dry mouth but not completely. After several days of use, you will start to notice longer sleeping hours. If you want to save the biotene for night time, mix up a large container of and bi-carb-soda into warm water. This will equate to 1 level teaspoon to 1 cup of water. Wash your mouth whenever needed throughout the day. Otherwise salty water. Make sure the mouth wash is alcohol free as the ouch will send you to the emergency department. |
| 2 | Ulcers | Bonjelo Ulcer Gel | This is where the ouch comes into it. Using medical rubber gloves, place a small amount onto your finger while wearing the rubber glove and rub into the ulcer. It will hurt and sting but this means it is doing good. If isn't stinging, you haven't hit the mark, try again. If that is too hard, mix a fingernail amount of the Bonjelo in with the Biotene and wash around your mouth. The results will be slower but just as effective. If the Bonjelo gel doesn't work for you, try Medijel Ulcer Gel. |
| 3 | Nausea & Vomiting | Metoclopramide | Don't worry about the name, After chemo treatment, they would have given you some of these to take home. For me, I took 1 tablet twice a day for the first week and then reduced this down to one a day. The reason is to control the vomiting and nausea. If you don't take the tablet and you start vomiting, it is harder to stop. | 4 | Diarrhoea | Loperamide Hydrochloride | Take 2 tablets as soon as you get home after treatment, then one tablet that afternoon. Then 1 tablet twice a day for one week and then 1 tablet every second day from then on. If you find that you aren't pooing within 5 days reduce the tablets. You will find a balance. | 5 | Rash | Akamin 50 | This a great drug. If you already have the rash, then it will take a while to get rid of it. The problem with this issue is they won't give you the tablets. They want you to get the rash first and then they will give you the drug. Not only is it embarrassing with a rash all over your face, you are then confined to being at home until it goes away enough to be seen in public. I still went out and anyone that looked at me strange, I said I got sunburnt real bad and you should have seen me last week. lol Whatever works, do it. | 6 | Panadol Osteo | 667mg Panadol | Mainly for pain and whenever you need it. I usually take 2 in the morning and afternoon. The Osteo has that extra kick in it and you don't need a script for it but you can only get them at the chemist. | 7 | Health | Centrum | Being over fifty and a mere male that seems to be dying at the mere mention of the flu, I found these vitamin tablets to be perfect for me. I always rode my pushbike but as I am now limited with going outside for long periods, I need to replace the energy for the lack of it. If you of a different age, talk to your chemist and they will help you out. | 8 | Mouth Care | Misc | This is a bit of a range. Rubber gloves used for rubbing gel into your mouth. Avoid using just your fingers. Soft tooth brush and mild toothpaste (Nothing hot).
Hospital grade hand sanitizer and not the cheap crap. I use Signet Microshield but I think they are fazing that out for a better range. Talk to your chemist about the best one and use
it all the time. A soft hand cream to rub onto the dry skin that you will undoubtedly get. The dry skin is associated with chemo and if you are getting dry skin, you will get a dry mouth but please, don't put the hand cream in your mouth. It doesn't taste nice. The above methods worked for me only and it was my way on how I balanced everything out. You will have to experiment with what works for you and you may even find out that you have to take the tablets as prescribed. I opted for my balance of drugs as I hated the thought of taking a mass amount of drugs two or three times a day. So far it is working for me but it may be different for you. |
9 | Dry Skin | Sorbolene | Dry skin is a nuisance. Take your shirt off and you sill see flakes of skin float to the ground that resemble dandruff. I stated previously to use the Vaseline brand of Intensive care skin cream but that ended up stinging my skin a little and it was even worse after I had exfoliated. The best product I found useful for me was the Redwin Sensitive Skin Sorbolene Moisturiser. Rub this all over your body and it will last well over a week without having to repeat everyday. Well worth the shot and it has a very nice smell for you beefy blokes out there. |
“No one will protect what they don't care about and no one will care what they have never experienced”
Final Thought's
It is all a matter of what you want. Prolong your life (Quantity) or enjoy what's left (Quality)
Once again, it's not about you. You know what is going to happen. This is going to effect everyone in and around your life. You have to start planning
your funeral, what you want said and how you want everyone to see you off. It doesn't really matter because you will be dead but it is more of a benefit
to the living, how they can look back and say that was a nice funeral or that funeral rocked.
For me, I plan to have a quick and easy funeral, wave me off as I get transported away in a cardboard box to the crematorium. After that, everyone
goes to the pub, has a feed and perhaps get smashed. I just have to make sure everyone is there for my wife as she will be an absolute mess. There
is so much to consider. Wife, spouse, partner, children, family and friends.
That's about it for now. If something pops up later, I will try to add to this page to give you an insight of what it is like to be on chemo. As a side note
there has been a lot of talk about the benefits of marijuana and the benefits of CBD. It has to be pointed out very clearly that marijuana does not cure cancer.
It has a lot of benefits in easing pain and has been known to control autoimmune disease, inflammation, seizure disorders, psychiatric disorders and substance use
disorders, withdrawal, and dependence.
All that is doing is easing the condition but it does not cure cancer. But is does have the potential to delay it. This is an on-going argument with many factions
and as long as the government has it's hand in the marijuana money box, they will not be making it legal for the entire nation any time soon. Funny, though, it seems
there are a lot of marijuana users in Canberra. They make it illegal throughout the entire country but legal in the nations capital.
Updates
9th April 2020
After three months of doing chemo, I finally had to get a CT scan done to see what the effects of the chemo was doing to erradicate the cancer. The results, opinionated by the doctor, was of absolute pleasure with the scans showing a massive reduction of the cancer cells in my liver. My cancer blood count was down and it seems that if all goes to plan, I might be around for a few more years. This still isn't promising as I continue to have the cancer inside me. The surgeon that did the partial bowel removal is still confident of me surviving a lot longer than anticipated. Now I have to wait another three months before the next scan to determine if all is going well for me. There is always that chance when things can turn for the worse.
12th April 2020
With my dosage of chemo on the 2nd April going as usual, I found myself in a predicament of not handling it too well. As like the very first dosage, I seemed to handle the treatment quite well where the treatment was done and I would be feeling well after two days. After the tratment of 2nd April, I discovered that it was taking a lot longer to get back to feeling some what normal. It was as if I was lagging behind, feeling lethargic, out of sorts, tired, ill and worse of all, a constant sickness in my belly. After telling the doctor of my symptoms, he decided to delay the 17th April treatment by one week. This was a good thing as I started to feel a lot better. Sometimes, a break of a week is what it takes to get back to a some what normal feeling.
17th July 2020
I had a CT scan a week before and after talking to the oncologist, he is very happy with the results. Almost zero cancer count in my blood and the lesions in my liver has shrunk quite significantly. As the nurses keep saying, my bloods are very boring. No change to the way I give myself the drugs that I need. I still have a problem with split skin on my fingers and toes and now it has started to appear on the heels of my feet. Even though the split skin on the fingers makes it very hard for me to grab things, the zero degree temperatures isn't helping me either. Apart from the dry and splitting skin, all is normal for me. The doctor has extended my treatment for a further three months to see if there are further reductions in the cancer.
20th November 2020
After several more months of chemo, they sent me to get a PET, CT and ultrasound scan to see how I my liver was coping. Just remember, when I was first diagnosed with cancer, you virtually couldn't see my liver for all the cancer that was in it. After the recent scans, 99% of the cancer had been eradicated. A small spot could be seen while two specks didn't have them worried. A week after the scans, my oncologist phoned me and said we have a chance to operate to cut out the large spot (Which was about the size of a pin head) and laser the other two dots out. Good news for me and excellent news for my wife. Plans were in effect and because they cannot operate with the chemo inside my body, I started the two month weening of the chemo.
2nd December 2020
Good news. We have sold our house in Tasmania for double what we originally paid for and we are now looking at moving back to Queensland.
Bad news. The Oncologist and liver surgeon are not happy with me because of the intention to move to Queensland. Long story short, Plans have been implemented for me to continue my 2 month weening off the chemo in preperation of the surgery and once in Queensland, I fly back to Tasmania, get the operation done, recover for two weeks and then fly back to the sunshine state.
28th January 2021
My oncologist warned me about the move and what the oncologist would do in Queensland. After settling in Townsville, I went to the cancer clinic at the Townsville University Hospital (TUH) and saw the oncologist there. Plans were to restart my chemotherapy while they discuss the possibilities of having the operation. My oncologist in Tasmania warned me that they may not operate as each doctor has different views on what outcomes might happen.
11th March 2021
After getting an MRI scan and PET scan I went to see the surgeon about the operation. He has confirmed he will not operate.
From having a zero chance of living with the initial diagnosis and then getting the chance for an operation to remove the cancer, I was given a one percent chance of living a long life. This has now been thrown out the window because a surgeon at the TUH doesn't want to take the chance that I may die while under the knife. If I had continued with the original plan of having the operation in Tasmania, it would be done and dusted and I would now be recuperating from the surgery. Any chance of beating cancer is a good thing but this has now been disregarded. I would take the 1% chance any day of the week. I have come to the conclusion that the TUH are more concerned with making money and prolonging lives rather than saving them. Isn't it the whole idea of doctors to save lives!
22nd March 2021
Back onto the chemo and I have realised that the Holman clinic in Tasmania are for more superior in their work than the TUH. Where I spent no more than four hours at the Holman clinic, I now spend ten hours at the TUH. They are so amateurish. Don't get me wrong as I have the highest respect for the nurses there but they are restricted by what the oncologist requests. As for the oncologist, he should find a different occupation as he doesn't care about the patients needs. He doesn't listen, he doesn't understand and as soon as you walk into his office, he's trying to kick you out within seconds. Now there is a doctor that only cares about money and not saving lives.
24th June 2021
Another cycle of chemo has passed and I have just done an MRI, PET and CT scan. The oncologist, after seeing the CT scans, said he will review the possibility of surgery with the hospital admin but he also wanted to confirm the results with the MRI and PET scans. He is starting to feel confident as the scans are showing good results and my blood doesn't show any cancer at all. They want a sub-atomic scan on my blood to make sure there is no cancer there and they are confident that it will show no cancer. The final say will be with the liver surgeon but not sounding like a broken record, if there is a one percent chance of living a long life, I will take that one percent any day of the week. When we first moved to Townsville, I was working so hard in the heat that I began to lose weight as I was mainly drinking water and hardly eating. I was 80kg in Tasmania and I got down to 76kg due to the heavy work and heat and fluid. I am now back to 80kg, I am eating normal, my blood pressure is perfect, my blood results are perfect, my heart rate is perfect, I have two spots on the liver where they can cut one out and burn the other off, so what is the problem with the surgeon? I will find out in the next few weeks what will happen.
14th July 2021
Just found out about the operation on my liver. I still have two tiny little spots on my liver but because they are on opposite sides to each other, they won't operate as that will take too much of my liver out in which case I could die on the operating table. Even my argument about them telling me they will cut one out and burn the other off still won't persuade them. Seems at this moment in time, I am doomed to die of cancer. I am getting tired of all the chemo as it is starting to take it's toll on my body. What do I do? Go for quality of life or quantity of life?
18th October 2021
Went in for more scans. Had an MRI, PET and CT scan and all came back with encouraging results. The cancer hasn't grown or spread anywhere but then it hasn't disappeared either. Now a new round of chemo but this time they have changed some of the chemicals. Not going into detail, the old treatment gave me split skin, dry skin, mouth ulcers and no taste. This new regime is supposed to cut the blood flow from the cancers which should kill them off. They did say the new treatment will effect the blood vessels in my mouth, lips and throat so anything I drink that is cold, it will feel like my mouth is freezing up. That will be fun to feel.
20th December 2021
They were right...........The new treatment does effect me differently. No more cracked skin or dry skin. No more mouth ulcers and wahooooo, I have my taste buds back. It is now the end of this three month treatment session and they were right about the freezing sensation in my mouth and throat. No matter how cold it is, the feeling in my mouth is a freezing sensation and my throat closes up slightly. Nothing to be worried about as now I know what to look out for, then I know what I can do. Sipping my beer is on the agenda for now on. I have noticed that with the old treatment, I always look pale and I felt weak straight after the initial treatment. This time with the new treatment, I don't look as pale but I do feel very sick for about twelve hours after the initial treatment. The feeling is if I want to vomit but the requirement isn't there. I will have to inform the doctor on this happening. As stated, I have come to the end of this three month session so in early January, I get more scans and they are hopeful some progress has been achieved. Once again, I persevere with the cramps when crossing my fingers.
23rd April 2022
It has now been nearly two and a half years since I was diagnosed with liver cancer and after several changes to my regime, the doctors have once again changed my treatment to something a little less horrific. The last scans show several lesions had reduced in size and the doctors now feel I am at an impasse where there are no real growths happening but no shrinkage in the lesions. It seems nothing is happening. I have no cancer in my blood and all functions of the body is running as per normal for a healthy person. I am now on a treatment which involves going to the hospital and getting some poison pumped into me for about fifteen minutes. (A lot better than sitting in the chair for five or six hours) After fifteen or twenty minutes, I am then disconnected and I then go home where I have to take four tablets in the morning and four tablets in the afternoon for my treatment. One positive note on this is I no longer have to put up with the freezing mouth when drinking cold fluid and touching things cold don't effect me anymore. The downside of this is I have numbness and tingling in the fingers and toes and it is as if I am walking on foam when I move around. My feet are swollen and my belly has grown in size because of the tablets. There isn't much I can do about this as it is a side effect but at least I can taste food, drink cold fluids and the best part is I no longer have to take that dreaded chemo bottle home attached to my chest. The treatment is the same as the chemical treatment but I have a lot more freedom because getting the chemical treatment for five hours, I was like a vegetable for five to seven days after that and in worse case scenario's, I would be laid up for nearly two weeks while I get one day reprieve and then back into it. Two more lots of treatment with the tablets and then I get scans done again. Depending what the scans show as, I either go back to the chemical treatment or remain on the tablets.
8th June 2022
It seems things have gone backwards for me. The tablets I was taking seems to have an impact on my feet and hands. The problems I was faced with was numbness and tingling in the fingers and feet. This had grown worse over the twelve weeks I was on the tablets where the numbness was actually up as high as my knees. To avoid permanent nerve damage, they have taken me off the tablets and as from next week, I resume the treatment where I sit in the chair for hours on end and take the dreaded bottle home with me. The change of treatment is due to the scans showing the cancer has actually jumped into one of my lymph nodes and a few extra lesions have appeared. It seems the tablets did nothing for me and made the situation worse. I will now be treated by injection for five to six hours and the coldness will be returning to my mouth. I am not looking forward to this lot of treatment as they will be hitting me hard and fast. They are hoping that the return to the old treatment will kill off the new cancers but I have a feeling that won't be happening.
8th June 2022
It seems things have gone backwards for me. The tablets I was taking seems to have an impact on my feet and hands. The problems I was faced with was numbness and tingling in the fingers and feet. This had grown worse over the twelve weeks I was on the tablets where the numbness was actually up as high as my knees. To avoid permanent nerve damage, they have reduced my tablet intake from four to three as from next week and I resume the treatment where I sit in the chair for three to four hours. The good thing here is I don't have to take the dreaded bottle home with me. The change of treatment is due to the scans showing the cancer has actually jumped into one of my lymph nodes and a few extra lesions have appeared. It seems the tablets did nothing for me and made the situation worse. I will now be treated by injection for three to four hours and the coldness will be returning to my mouth. I am not looking forward to this lot of treatment as they will be hitting me hard and fast. They are hoping that the return to the old treatment will kill off the new cancers but I have a feeling that won't be happening. The swelling in my belly has increased and my breathing is very laboured when I lay down. I am hoping this is a short term problem.
5th July 2022
I saw the oncologist today and even though he was a different doctor to the one I normally see, it seems there was a fresh new look on my situation. From a different perspective, I now have a second opinion on what can be done. He has left notes to all the doctors that I am willing to talk about new tests involving new discoveries. The problem here is, most of these tests do not occur in regional hospitals such as Townsville. For me to undertake the experiments, I have to fly to Brisbane which will be out of the question unless they pay for the flights and accommodation. As of now, I will leave that in the hands of the hospital.
15th August 2022
I saw the oncologist today and once again, he was a different doctor. As I had a CT scan done two weeks ago, I thought it was to check up on my liver
but it was actually for a lung scan. Long story short, I have had this nagging cough for several months now and not being a full blown coughing fit, it is a little niggle
in the back of my throat. In normal scans, your lungs should show up dark but with the dye they put through the veins, it shows all the odd bits
and pieces. It seems I have a sand blasted look at the top of my lungs. It could either be an infection in which they could possibly clear up with
antibiotics or it could be some sort of congestion in which they may have to clean my lungs out. They haven't given me a cause on why it's happening which is much like the massive belly I have. No fluid, no gas so it has them confused. I am getting a little grumpy here because three doctors in Tasmania told me not to go to
Townsville because they will not do anything for me. You know what, they were right. I am in the hands of hospital that employs doctors that are
unwilling to try different things. I get the full range of scans in the next two weeks so this will tell us what damage has been done with this so called new treatment.
12th September 2022
It seems I am seeing a different oncologist every time. This time, it's bad news. The growth has spread and become more dominant. As there were no suggestions or ideas, they gave me an option of going onto a tablet once a day for a fortnight, have one week break and then resume. The tablet is more potent than any of the other treatments I have been on so I am starting to wonder. The doctor couldn't give me a time frame on how long I have left and when I said to him that I might as well go completely off the treatment, he disappeared and returned with another doctor. They have suggested I try the tablet for one round and see how I feel afterwards. As my wife is a retired nurse and she has seen plenty of cancer patients, she explained to me that the new regime of treatment will be severe. She said I will most likely end up as sick as a dog with vomiting and headaches and diarrhea. She is supporting me all the way through this and as she has seen what other patients have gone through with the treatments of chemotherapy, she doesn't want me in the same situation. If I stay on the treatment, it may give me a few more months which isn't much when you think about it. I chose quantity over quality when I was first diagnosed with cancer as I wanted to get things finished but I am thinking about quality of life with what time I have left. That time is a mystery to the doctors as they simply don't know. I am kind of pissed off about all this. My resolution to death is adamant but as I said before, if the treatment is working, pounce on that opportunity. Unlike the surgeon I saw a year and a half ago, he bluntly said to me "It's the chemo keeping you alive. I'm not going to go anywhere near you" but as I said to him, dying is easy, the challenge is to live. No matter who the person is, if there is a one percent chance of survival, I will take that one percent any day of the week. Their window of opportunity was a year and a half ago and they threw that chance out because of what one person said. The open window has closed now so I am preparing everything for my funeral and to make sure my wife is okay when I am gone.
I'm not dead yet and I feel perfectly fine. I will continue with my updates. I hope someone out there is reading this to understand that if you have less than a forty percent chance of survival, Townsville hospital will not look at you. I was warned by three doctors in Tasmania about this and they were correct in everything they said. Townsville hospital will not do what they can to give patients a chance There is even a lymphnode that is effected and they won't even remove that to slow the spread. Be careful on what you are told as you will undoubtedly want a second opinion at a different hospital. Think big, think Brisbane or Melbourne.
9th January 2023
That time has come where I am now on a downward path.
Saw the doctor today and everything seemed okay when I saw him. Still no pain, except for my back every now and then. He has sent me off to get the port-a-cath flushed and a blood test to see how far the cancer has spread.
14th January 2023
Went to bed last night feeling all good and slept well.
Woke up in the morning wracked in pain. Concentrating around the right side of my body where the liver is, I thought at first it was because I had slept wrong, you know, like you wake up with a crook neck.
The pain was intense and on a level of one to ten (Ten being the worse), it was definitely sitting around a six. I couldn't bend down without feeling a lot of pain so I took some paracetamol which eased it quite a lot. I have had a problem over the last twelve months where if I needed to poo, I would get discomfort in the right side of my body roughly below where the liver would be. I have been telling the oncologist about this discomfort for quite sometime but he has never done anything about.
I have decided to resume my Tramal to try and control this pain.
17th January 2023
It's currently 12.00am and my entire right side of my torso is in pain
Everything was fine last night but at one point, I tried to sneeze and the pain I felt was so intense I thought I was going to feint.
The pain I am feeling now would be around the eight or nine on the pain scale. I have taken two tramal and two paracetamols. It's been half an hour so far and the pain hasn't gone down. I will wait another hour and if it hasn't gone by then, I will be going to the hospital.....Waited one hour and found the pain in the right side has gone but the intense pain in my chest hasn't dissipated at all. It feels like reflux but with the pain on the very bad side. I am wondering if the stew the wife made last night is the cause
6th February 2023
Going back to the 17th, the pain in my chest ended up being heartburn. I took a heartburn tablet and the pain went away in about thirty minutes
Saw the doctor today to see what the blood results were from my last visit. It seems in my blood count, I have a reading of twenty six where as normal should be five.
My wife started to shake her head and started to explain to me what that means. I had to cut her off as I told her that I did not need to know this. I know
I am dying and being told all the time is not helping in my mental state. I understand that it is extremely difficult for her to see this but she must also remember
my side of the situation. I still have a few thing on my bucket list but we need to have the gutter fixed and drainage outside completed. I still have a
few more jobs inside but it is getting the right day to do this.
9th February 2023
The pain in my liver has intensified today. I am now at the point where I will start having good days and bad days. The Tramadol isn't working and I
can't take the other pain killers I got because they make me feel sick.
I am eating a lot less now but it's not because I'm not hungry, it's because I don't seem to enjoy the food. The finishing of the renovations is
becoming overwhelming for me mentally. The work is always on my mind because my wife cannot do it herself and we don't have enough money to get people in.
We are getting the front gutter replaced at the front of the house for $450 and even then, it has taken us three months to save up for it.
All I want is to finish the reno's off so as my wife doesn't have to worry about anything.
5th March 2023
The time has come.
The pain has increased and my doctor has upgraded me to 100mg of tramadol and I am now on Endone.
My skin has started to change color to yellow which means a liver shutdown is inevitable. On average, once the yellow skin starts to appear, people live for about one
and a half months Not sure how long I want to live now as all the expert doctors have failed me. The surgeon flatly refused and the oncologist would have to be the most
useless human on the planet. My time is coming to an end.
Depending on how I feel, this maybe my last entry. I just want to thank mother nature for putting up with me, my mother and father for raising me
to their best ability and my sister for always being there. oh' and by the way, fuck you god. Goodbye.