Chemo done.

So that was an experience I wish I'd never had! I've now finished my six sessions of R-CHOP21 and am so glad it's over and I hope I never have to go through anything like that again. I have no hair, puffy black eyes, numb finger tips and I'm fat (I've put on about 7kg and have lost all my muscle tone). But, at least I'm beating this thing.

Worst of all I am feeling absolutely exhausted. My body aches all over, particularly my arms, legs and neck and nothing seems to help. I'm now just thankful that there's no more treatments, so it will hopefully start improving soon. Although apparently the radiation causes fatigue, so maybe I still have a while to wait.

I'd like to say thank you once again to everyone I know for their support, friendship and encouragement. I feel very lucky to be surrounded by such wonderful people.

Only one more session to go

I cannot ever recall my body being so tired. I don't really feel so tired in the sense of needing to sleep more, but my body is just exhausted. I want to sit down all the time and my arms and legs just feel like dead weights. I've also begun to get really achy muscles during the past week.

My last chemo session was awful. The needle got bent in my arm so after much digging and rearranging it was moved to the other arm, where the same thing happened! It would work for about a minute, then the machine would start beeping saying that it had stopped. We did some rearranging and so for the last 40 minutes Leah and I were holding it on an angle where it would keep going. This worked, but unfortunately Leah had to push down on it really hard, so it was quite painful. Furthermore, I still have sore bruised arms a week and a half later.

I have a CT scan next week and I'm feeling a bit anxious about it. It's really hard not to get my hopes up about a positive result. I'm trying to not think about it.

A fabulous week!

First of all I’d like to start by saying that I've re-read my last post and am definitely not feeling that way anymore. After the initial shock of my hair falling out, I actually feel pretty good about it. I guess it's a visible sign that the chemo is doing something. If it's killing my hair cells then I can be more confident that it is also killing the cancer cells!

Now I can go on to tell you the good, well actually great, things that have happened to me this week. To begin with I went wig shopping with my two best friends and my step-sister. We bought a wig and a whole heap of scarves and had a lot of fun trying things on in the shop. My long-standing suspicion that I have a pin head was confirmed when the lady had to take the wig in for me as it was too big, and was reinforced again when I was trying on hats and they were all falling down below my eyes!

We also went out for breakfast –my first outing without hair. I was thrilled when I looked at the menu and saw blueberry bagels with cream cheese. Something I LOVE and haven’t had for ages! I went up to the counter to order them and the guy behind the counter said “Sorry, they didn’t get delivered today so we don’t have any”. Forgetting about my bald head and CanTeen Bandanna I replied “oh no, I’m devastated. I was so excited when I saw them on the menu, I think I might cry”. I was of course only joking, but the poor guy went white as a ghost and looked like he wanted to crawl into a hole. He must have been thinking ‘oh no, I’ve upset the poor cancer lady’.

The following day was Australia Day which I spent at my Dad’s house. It was lovely to just relax by the pool and chat with family. The next great part about this week was going back to work, as the summer holidays have now finished. I know work is not normally on people’s list of great things, but I love my job and the people I work with, so going back and seeing everyone was wonderful. My colleagues were very supportive and it was great to have a sense of normality in my life again.

On Thursday I had an appointment with my oncologist, which was definitely the highlight of the week. He was very pleased with how well I am taking to the chemotherapy. He also told me he thought that my ‘down to earth’ personality and positive outlook would mean that I would have less side effects. That was a nice compliment to receive and also reiterated to me how important the power of the mind will be in all this. Furthermore he said that as all my symptoms had disappeared (no more visible lymph node swelling, fevers or night sweats) he was confident that my next x-ray (in 3 weeks time) would give good news!

I went into my appointment armed with a list of questions I had been wondering about since my last appointment. What should I be eating? How often should I exercise? Can I have a glass of wine? What exactly are B-Cells? Should I have paid more attention in biology in high school? I bombarded the poor guy with so many different things he ended up lending me a medical book on lymphoma! The book is very interesting and has answered many of my queries, but I will probably now just go to my next appointment armed with more complex questions!

Friday was the not-so-great part of the week. Chemo number 2. My step-sister, Dani, came with me this time and thankfully it was a much shorter session this time. It was still about 5 hours, but at least it wasn’t 7 hours again! The worse part of the day was when the nurse tried for 10 minutes to get the cannula in the back of my hand, then gave up saying that my skin was too tight. I don’t really know what that means, but I’ll take it as a compliment and assume she meant it was youthful and firm! They ended up putting it in my arm which took about 10 seconds, but I now have a bruised swollen lump on my hand!

I left the hospital feeling fine and even went for a short walk when I got home, as I wanted some fresh air. However, about an hour later I was sick. Panic set in a bit then and I worried that I was going to get the days worth of nausea and vomiting I had heard that most people experienced. Luckily, that was it and I’ve felt pretty good since. Like last time I felt queasy all day Sunday and have been unusually tired and vague, but if that’s as bad as the side effects get for me then I’m stoked!

Gobbledygook

Something that I’ve wondered a lot lately, is why medical terminology is so complicated. It’s overwhelming enough just to be told you have a serious illness let alone trying to decipher what they’ve said. Why can’t they use monosyllabic words instead of so much gobbledygook? People ask me questions about my diagnosis and treatment and when I respond they look at me as though I’m speaking another language. I’m therefore learning to respond with the simpler versions. For example my diagnosis is Mediastinal Large B-Cell Lymphoma, the simpler version being Non-Hodgkins Lymphoma, simpler version again is Cancer. Mediastinal, means it's in my chest. The same applies to my treatment. I’m having a combination of five drugs which are Rituximab, Cyclophosphamide, Doxorubicin, Vincristine and Prednisolone. Also known by the simpler acronym: R CHOP 21. It's easier for me to say to people that it's Chemo.

So that brings me to my first chemo session. The word 'chemo' conjures up images of hair loss, dark circles around eyes, weakness, sickness and the list goes on.After all it is a treatment designed to kill your body's cells. But for some strange reason I wasn't that scared. Perhaps it was because I know this has to happen to make me better, perhaps because I’m lucky enough to have so much support, perhaps because I’m so scared of the cannula being inserted into my vein it is overshadowing the fear of the chemo!

So I dosed myself up on Lorazepam for my needle anxiety and headed to the hospital. I swallowed a bunch of tablets (can’t remember what they were. Steroids and anti-nausea I think), then was hooked up to the IV tube. The first drug, Rituximab can cause a variety of serious allergic reactions, so is given very slowly the first time while you are closely monitored. For the four bags of poison to be pumped into me took about 7 and a half hours. Thankfully, all went well and I had no reactions/side effects from any of the drugs.

Overall the day was fine and I even had a few nice experiences. First of all, my nurse was great. She was very friendly, reassuring and attentive. She was also very patient with my lorazepam-induced daze. Although I knew that my mind was cloudy and I wasn’t speaking very clearly I persisted in trying to ask her questions and trying to chat!

I also have six ‘chemo packs’ that my friend Melanie made for me. I have one for each treatment and I’m only allowed to open them at the hospital. The first one contained lots of nice things to read and do during the long ordeal and to distract me from the needles! My dad also bought me a Nintendo Dsi with a brain training game, and that along with movies on my laptop helped pass much of the time.

I left the hospital thinking I couldn’t possibly be feeling this good after having bags of poison pumped through my body and perhaps the bags had accidentally just contained water. I also left with a bunch of brochures on side effects, wig shops and lists of do’s and don’ts. I have new rules to wash my hands before I eat or touch my face, since my immune system will be virtually non-existent for a while.

I slept like a log that night (probably due to the lorazepam) and woke up feeling pretty good. I felt alright all day Saturday, but because of the steroids which I have to take for 5 days after each treatment, I couldn’t get to sleep properly that night. I felt a queasy all day Sunday, but found that if I ate small amounts regularly I was fine. Apart from being really thirsty I’ve really had no side-effects so far. I’m not holding my breath for this to be true after all my treatments, but I’m going to enjoy it while it lasts.