Life Unexpected...: Chemo

April 2014 - September 2014

In April, I started chemotherapy at Hopelands. There are so many different variations of chemo and it is very rare to find a person who has the same combination of drugs as you even if you have the same type of cancer. This is because different stages require different approaches and often you find that each Oncologist has a different approach to treatments for their patients. Shane is known to be overly cautious and I’m comfortable with him and his ways, I know he won’t leave anything to chance and that I have best plan possible.

I started with a combination of drugs called ABVD; ABVD is widely used as the initial chemotherapy treatment for newly diagnosed Hodgkin's lymphoma. The name is an acronym for the following drug cocktail:

A: Adriamycin

B: Bleomycin

V: Vinblastine

D: Dacarbazine

(Not as good as a strawberry daiquiri!)

I had ABVD chemo once every two weeks, this is known as one cycle – I needed twelve cycles. In an ideal world this would mean that I would have chemo for 3 months and it would be over... Unfortunately things never go to plan and cancer doesn’t like playing by the rules, instead you learn to take things day by day otherwise you are constantly let down and left feeling disappointed. My chemo lasted double the estimated time due to unfortunate setback that I will explain below.

The Doctor orders blood tests before each cycle of chemotherapy - it’s a bother and it’s painful. You wonder whether it could be avoided but unfortunately there is no way around it. Chemo kills cancer cells and is a vital part of treatment, but in the process it also kills some important normal cells in the body. The most important of these are cells in your bone marrow which produce blood cells. White blood cells or leucocytes are important for fighting infections in the body; drugs used in chemotherapy can kill these cells and increase the chances of getting an infection. Chemo also kills platelet cells in marrow which are important to prevent bleeding from different parts of the body- if platelet counts fall, there is a risk that bleeding may occur.

Before each cycle of chemo it is important to make sure that the numbers of white blood cells and platelets are acceptable. If not, you have to wait for them to rise to normal levels before having another cycle of chemo. It may be necessary to give some medicines that help the blood counts rise; also platelet or blood transfusions are sometimes required. This whole process is SO frustrating, you will feel completely normal and well so you pack your bag and make arrangements to have chemo and then you get the dreaded phone call from the Sisters at Hopelands to say that your bloods are too low! Back to the lad the next day (and quite often the next and the next) until your cell count is high enough.

A normal chemo session

There is a big room at Hopelands called the “Chemo Suite”, there are about 20 big, leather lazy boy chairs arranged in a circle and this is where we receive our treatment. You can pick your seat and get comfortable! It opens at about 8am and patients come in and out all day depending on how long their chemo sessions are. My ABVD took about 6 hours to complete, a loooooong day of sitting! Each chair has a drip stand next to it and one of the sisters brings you your "shopping tray" which is a plastic container filled with all of your drug bags and pills. Chemo can be given in four different ways although not all chemo drugs can be given in all the following forms:

Intravenously, as a slow drip through a thing needle in a vein in your hand or lower arm. The nurse will put the needle in when each infusion beigns and take it out when the infusion is done.

Orally, as a pill or capsule..

Through a port which is inserted in your chest during a short outpatient surgery. A port is a small disc made of plastic or metal about the size of a coin that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.

Through a catheter (sometimes called a "long line") in your chest or arm. A catheter is a soft thin tube that is inserted into a large vein during a short, outpatient surgery. The other end of the catheter stays outside your body. This is basically the same as having a port, only you don't have the port itself. Your chemo medicines are given through a special needle that fits into the catheter. You also can have blood drawn through the catheter. When all your cycles of chemotherapy are done, the catheter is removed during another short outpatient procedure.

NB: Unfortunately not all chemo can be administered in all 4 ways so it's pretty much luck of the draw in terms of what you could be viable for.

My veins were nice and strong when I first started chemo so Shane didn’t think it was necessary to have a port fitted and my chemo was administered intravenously. Unfortunately, as time has gone on I have had many, many, many needle pricks and most of my veins have become hard and uncomfortable. Sometimes it can take up to six needle pricks before the Sisters find a vein that they can use to administer chemo or draw blood from- very uncomfortable! We did a quick calculation the other day and I have had a minimum of 230 needle pricks from March up until now (December).

All hooked up for chemo

My first session was very daunting as I had no idea how the whole process worked or what I needed to take along with me, I read a few blogs but none of them really explained what you would need. Here is a list of things I take along with me in my chemo bag:

Provitas with a bit of Bovril on them
2 blankets: one to cover the chair with (I have become a bit of a germ phoebe) and one to put over my legs (I usually feel very cold during chemo)
Bubblegum (anti nausea technique)
Fruit juice
Socks and slippers
Very comfortable clothes (unfortunately chemo makes me swell and retain A LOT of water), I sometimes weigh up to 5kgs heavier when I leave Hopelands after a chemo session (rookie error wearing jeans to my first session!)

There is a very strong medicinal smell in the chemo suite and every time I walk into the room my tummy churns, it’s very hard not to feel nauseous instantly! I battle to eat in the chemo suite and often go and sit outside when it was lunchtime so that I could get some fresh air. Generally I don’t pack lunch for myself as I never know what I’m going to feel like eating on the day, whatever I eat on the day of chemo I generally will not be able to eat again for months! I think my brain associates the food item with the nausea, smell and pain on that particular day and from then on I can’t even think about it. The one day I had such a strong craving for chicken strips and even the thought of them now makes me feel ill, I also can’t look at or think about sparkling water or pancakes.

You aren’t supposed to eat hot food in the chemo suite because the smell bothers the other patients, one man obviously didn’t get the memo and whipped out his bowl of pilchards for lunch – cue throw up bucket!

Everyone chats in the chemo suite and I have met such amazing people who have become great friends. The standard line is "So what cancer do you have?" and that gets you started. I have met all types of people and there is a mix of all ages and races, it seems like cancer no longer targets the old and helpless... everyone is at risk. I will do a separate post about a few precious souls that have amazing stories because I don't feel like I will be doing them any justice if I only write a few words about them. When I feel sorry for myself I just picture all of the people in the chemo suite and realise how lucky I am, most of the patients are just buying time and are never going to be cured and it's so incredibly sad to look around and realise that many of them wont be sharing Christmas with their families this year.

Post Chemo

I am so thankful that I was fit and healthy when I was first diagnosed and that I carried on exercising until I started chemo, it definitely helped me to recover quicker and to deal with the side effects better. I found that as chemo went on, it was more difficult to recover between cycles and I felt worse and worse. Here are some of the side effects I experienced from ABVD chemo:

Anemia
Infections
Mouth Sores
Nausea and Vomiting
Appetite Loss
Extreme fatigue
Hot flushes
Rashes and blisters
Flu like symptoms
Numb fingers and toes
Hair loss and thinning
Brittle nails
Skin discolouration
Headaches

The day after chemo, I always feel I had a seriously bad hangover on steroids. The side effects usually only kick in the following day and generally last for about a week.

When I was first diagnosed with cancer I was determined to carry on working- I loved my job as a Finance and Insurance Manager in the Motor Industry and I hated the thought of sitting at home all day. I lived for the fast paced, target driven position! My boss was very understanding and encouraged me to carry on working; I managed for three months but eventually had to resign in July. I found it so incredibly difficult to juggle work with a chemo schedule that was so unpredictable, also I found that my recovery time wasn’t long enough- for example if I had chemo on a Monday I would be back at work again on the Wednesday. Also, the only way to increase your blood count before receiving chemo is to rest, this doesn’t exactly fit in well with a job that requires you to work six days a week. I often found myself putting on a brave face and trying to be as productive as possible when I felt terrible and wanted to crawl into bed, I also couldn’t just leave work if I suddenly felt sick as there was no one to cover for me at such short notice.

After having chemo I had to give myself a Neupogen injection in my tummy, once a day for five days. Neupogen helps to stimulate the production of white blood cells (these fight infections). The injections are painful! I found that after a while I psyched myself out of being able to give myself the injections and asked my friend Hayley to do them for me- she is incredible- hands down the best needle operator in the world! After four injections I would wake up in the middle of the night with intense bone pain in my hips and pelvis. It feels like a series of electrical shocks and my body would literally jump with every shock. Big ouch. The only way to cope with the pain is to pop a few painkillers and to lie on your tummy with a hot water bottle on your back. Without these injections I wouldn't recover quickly enough between chemo cycles, obviously this delays the entire process so they are very necessary.

The Neupogen Nurse and I

Unfortunately I wasn’t able to exercise while having ABVD chemo as Doxorubicin can affect the way the heart works and lead to permanent damage. I wasn’t allowed to let my heart rate exceed 120 which was SO frustrating. Shane would joke and say that i should get a cup of coffee at the gym because it would be enough exercise! I definitely wasn't pleased with that idea and I was craving a serious workout and lots of sweat, hah! I wore a heart rate monitor when walking on the promenade or around our neighborhood and would have to pull over for a few minutes to get my heart rate down if I got too excited and walked to quickly or chatted too much. Towards the end of my treatment I started doing light exercises with Gav’s Intern, Virgilia; she is amazing and really got me going! Hayley was on maternity leave at the time so the two of us trained together at Prime Human Performance Institute on days when I was feeling well enough. Hayley trained like a champ, I mostly did core exercises and was banned from all cardio- I snuck in a few fast spins on the spinning bike during warm up when Vigilia wasn’t looking (sorry Virgilas - at least I'm still alive!.

Virgilia and the cutes gym mascot, Meg.

I know this post has been exceptionally long but I really want to share one last very special event that fits into this time frame before I move on

When I started chemo I knew that I was in for a really tough time. My friends and family have been so incredibly amazing and I honestly couldn't be blessed with more special people in my life. I have to mention one particular person in particular - my fiancé Gav. When you find out that someone close to you has cancer it really can't be easy. I don't know what I would I would do if I found out that someone close to me had cancer as I know how truly horrific and soul destroying it is. To watch someone go through all of the pain and suffering, tears, hours spent slumped in bed not able to lift their head off the pillow, rushing off to get special medicines and foods, taking care of the house and making sure our bills are kept up to date, cooking meals and the me not being able to even look at them; this my friends is true love. I pray every night and put my fingers on Gav's back to that the Lord for blessing me with such an incredible man. Most people would run as far away as possible when faced with such an uncertain future and bumpy road ahead.

As I said above, I started my first chemo in April and Gav and I decided to book a love shoot with Meg Rowbotham from DELLA ROW PHOTOGRAPHY & DESIGN. We wanted to capture a few happy moments before I got too sick and lost too much hair, Meg was incredible and she helped us at such short notice.

On the way to our little shoot at my parent's farm in The Midlands, Meg got a little lost! Gav and I were dressed and ready so we went walking around the garden trying to find good photo spots. We went down into the indigenous bush along a little stream where there is a quaint little wooden bridge you can cross. My sister, Leigh, is a very talented photographer and she was following us around pointing out good spots and taking casual pictures. As we got to the bridge I put my arms around Gav and gave him a little love, all of a sudden he let me go and got down on one knee and he asked me to be Wife! I was totally and utterly shocked and had NO idea it was coming, I obviously said YES and was beaming like crazy! Such a HUGE surprise! Another special part was that Leigh had captured our entire engagement on camera - she was equally as shocked as me as she had no idea it would happen either!

Literally a few minutes later, Meg arrived ready to do our Love Shoot although it would now become our engagement shoot! Gav and I were both so excited that it was extremely hard to keep focused and pay attention - I think that may be the reason for all of the kissing pictures...