Hi and welcome to Chemo Diaries: My experience, which will be a monthly series of posts written like a diary about my experience as I undergo chemo. This is the first month post and is also for the month of October, 2015.
Thankfully there is heaps of information out there to help understand the type of cancer treatment you need and how it will effect you. I have found CanTeen have some great resources for helping me to understand what to expect from my cancer journey (even booklets on fertility after treatment). Other great places of information I have found are from the Cancer Council as well as the chemo education sessions I attended at my local cancer centre.
As I read in the Canteen booklet "Your guide to dealing with cancer ages 16-24", chemotherapy (chemo) is one of the more commonly used methods to treat cancer and it works by using drugs called cytotoxics to kill or slow the growth of cancer cells. As explained in the booklet (and from my own experience) chemo also kills your good cells too, making you feel very sick, fatigued, and also why you lose your hair (I am yet to experience hair loss). I also experienced really painful mouth ulcers recently (was so bad I couldn't eat, read more about that below).
Initially I was planned on having monthly doses of Caelyx but after a severe (almost-died-reaction) to it my oncologists decided on weekly doses of Methotrexate and Vinblastine combination to try and shrink these tumours, and as my oncologist explained "to help give me relief to enjoy each day".
I didn't go into chemo with the expectation that one day I will be cured and tumour free, I know that isn't my reality and I don't want to have unrealistic expectations. But I just want my tumours to shrink enough so I can FINALLY be pain free and enjoy what is left of my short life. I have so much I want to still do (read about my happy list here) and I hope to be well enough one day to travel.
My experience so far: 29.09.2015:
Met with surgeon to discuss portacath surgery. I had to drive down to Port Maquarie (roughly 3 hours south) as the surgeon here in Coffs wasn't available until the end of October and my chemo was to be started sooner rather than later. I really didn't want to have a PICC line to have chemo and I am so glad I advocated enough to let me go to Port for a consult and surgery as I got a Purple portacath. My doctor thought I was strange for being excited about a colour of a device implanted under my skin... but purple is my favourite colour and it made me feel so much more positive about the whole experience.
Today was the day that I had my surgery in Port Private Hospital (their sandwiches still don't beat Baringa Private at Coffs... in fact no where yet does) and the surgery went well. I was in a lot of pain and in pain for days afterwards but you can read all about my experience over on "Portacath and What to expect when you need one for chemo".
My first day of chemo, 5 days after my port was put in and I am feeling hopeful about this treatment. It was like it was a blessing and everything fell into place, it was like it was meant to be. There was something hopeful about this one bag (below) of chemo Caelyx that was worth $6000 AUD for the bag that made me think that this would work.
The day involved getting there early to start chemo, then I had to have my port accessed and blood taken. While waiting for the blood tests to come back (to make sure I was well enough to have chemo) I had some bags of fluids to keep me hydrated and a nice toasted sandwhich.
It was about 2PM when I had my first try of chemo, and beforehand I was warned that this chemo has side effects of a reaction (in rare cases) that results in feeling hot like you're on fire, sometimes pain in your back and heavy chest with inability to breathe. It was about 5 minutes (if that) into the infusion when I started feeling warm in my face, then it radiated to my whole body. I stayed calm and thought "this is okay, a little bit of heat never hurt anyone". Then it intensified around the same time that it felt like an elephant was sitting on my chest. My chest felt so heavy I couldn't breathe no matter how hard I was trying. Then the pain started in my back around my kidneys and was rather pulsing, it was so painful and then pain shot down the nerves in my legs and my whole body was going into spasms and my heart was racing.
By the point that my chest was heavy I had called the nurse over and they were frantically trying to stop the infusion. They called over the doctors who advised an ECG was needed and to give me anti-reaction meds to try and control the pain and slow down my heart rate.
It was then decided after an hour that we would try it again, but this time at a much slower rate, which the same symptoms (despite the anti reaction meds) started about a minute or two in.
I spent the night before in hospital under observation after the reaction yesterday to ensure that I was okay and ready to try it again this morning. Except even with the anti reaction medications and slower rate of infusion (would have taken 6 hours to complete) I still reacted and realised that I am allergic to Liposomal Doxirubicin and that it is not the right chemo.
The doctors consulted with my Sydney oncologist who decided I would try the weekly over 52 weeks regime of Methotrexate and Vinblastine.
Today was the day that I started the new chemo regime of Methotrexate and Vinblastine (a low dose weekly course of combination chemo that has had success in clinical trials). I was pretty nervous about starting a new chemo given how horrible the experience was last week when I reacted and could have died to Caelyx. The day started off getting there early to meet with the doctor and to have my bloods taken. While we waited, I was lucky to be in one of the rooms with a bed so while I had fluids infused through my port, I just napped. I got very little sleep the night before as I was too scared and anxious.
Due to the high toxicity of one of the drugs, when the Nurse has to manually push through the drug she has to sit there with me the entire time to monitor my port and make sure that it doesn't leak into my skin as it can cause nacrotic skin tissue like a chemical burn. She became my chemo buddy. I didn't feel any side effects and even felt so fine that I was able to drive home.
I found an hour after chemo I started feeling the nausea and felt rather seedy like I was hungover, which I didn't feel like eating for days, for someone who loves food even the thought of it made me feel sick! I ended up feeling a bit sick all day with fevers then had a 39'C temperature, which I was told anything over 39'C means a trip to hospital. Turns out I had excoriated skin between my butt cheeks like big raw ulcers.
I spent the next 2 weeks in hospital and my chemo (was to be on the 20th and 27th) were postponed as I needed all the healthy cells possible to heal my wounds. I had twice daily applications of zinc (sudocreme), Rectinol (creame for heamoroids it has a numbing agent in it) and another gel based cream that was also an anti fungal but had local antiseptic. The most horrible part of having raw skin was when it needed to be scrubbed clean and washed. It was excruciating and while I have a high pain threshold I was screaming and often in tears. It wasn't very pleasant. They think it was a combination of chemo and my immune system was down and it was the reason for this. But I lost all dignity when many people were looking at my bum and cleaning it and poking it... I felt so embarrassed that this happened even though it wasn't my fault. But the nursing staff were great and while I felt embarrassed they did good at making sure I was okay.
This concludes my first month of chemo experiences ranging from my portacath surgery to starting two different chemo regimes and as my husband said to me recently, "I know it is horrible right now, but the sad thing is you will get used to feeling like shit... just imagine when chemo is all over and you will look back and think 'It is good not to feel that crappy'. If anyone can do this, you can".
I love that he has so much faith in my strength, although I constantly wonder and feel like I am not strong enough to do this.... my husband is like my own personal cheerleader! I don't think I could have done this without his support...