Since my last blog post, I started chemo and I'll say the positive thing straight away. I had one day of chemo almost 3 weeks ago, and saw the doctor yesterday. She is very encouraged because my cough/wheezing have almost disappeared at the moment. I got the impression she thinks it's because the chemo is working, which is really good news, but I'm trying not to get my hopes up too much (hard not to!)
I was really nervous before the chemo, I just didn't know what to expect. They put SO many drugs into you, and have to monitor you really closely the first time in case you have an allergic reaction, so I was scared. We got there at 9am, and left at around 7pm. LONG day, and the worst thing turned out to be the boredom! Nick came with me and I had lots of things to read/do/eat but still it was very dull. I had three separate chemo drugs over the course of the day, as well as various anti-sickness and steroids. I also tried the cold cap that I mentioned in the previous post - it's supposed to help stop some of your hair falling out. It's a hat you wear which has a constant stream of liquid going round it at -5 degrees C. Some people find it too uncomfortable to wear but I was so hot it was actually quite nice to wear! I grabbed myself a bed for the day at the advice of my friend Tom which was definitely a good move.
That night I went back to my parents house (where I stayed for the following week), and felt mostly ok, apart from for an hour or so where my whole body started to feel very agitated and I couldn't sit still. We phoned the triage number (24/7 number for people having chemo) but they said it was normal after having a dose of steroids, so I had a bath and it was ok after that.
The next couple of days were ok as well, I was just coughing a lot still and my ribs were hurting from that. I was taking anti-sickness pills and they seemed to work which was lucky. The third day after chemo I started to feel more achey - my back, ribs, head, neck were all hurting and my scars from surgery started to hurt - the doctor said that anywhere a bit sensitive or weak starts to feel sore. My friend Sara who had chemo a year ago (and has been another v. useful source of information and empathy!) had similar symptoms and gave me the good analogy of it feeling you've been hit by a truck. The truck got bigger the next day and then I started to feel a bit sick as well. When you're feeling like that it's very difficult to be positive at all and emotionally I was very up and down. There were a lot of tears and my parents, Nick and my sister were amazing at helping me through this. The next day the truck turned into a car, and the following day it was just as if a kangaroo had jumped on my chest. Day 6 I could see the light at the end of the tunnel. I had lost about half a stone over the week - I couldn't eat very much but luckily was able to eat enough to keep me going.
I had my hair cut short. I wanted to do it so it would be an easier transition (and less traumatic) if and when my hair started falling out. It was quite exciting to get it done and I was quite pleased with how it looked, then I got my nails done for good measure too!
I went home that weekend and Nick and I went out for curry, had a takeaway and generally relaxed and enjoyed the fact that I felt vaguely normal (and much happier and more positive!)
That week Nick and I went to a group therapy session at the charity Maggie’s called ‘Living with Uncertainty’. It is for people with incurable cancer and their partners/families. We were a bit apprehensive about it but it was definitely worth going. There were 3 other people with incurable cancers and 4 other people who were partners of patients. They split us off into these groups (patients + partners) to chat. Nick found it very useful to be able to chat with people that have been through similar situations. They talked a lot about the scary word ‘incurable’ and said the way they look at it is the doctors have to say that word, because it is unlikely that they will be able to get rid of it all, forever. But in many cases there are so many things they can do to get rid of much of it. There are many incurable diseases around, but cancer has particularly scary connotations connected with it. I found it useful to talk to other patients, hear their stories, get some tips about pain relief or what to expect. It’s monthly so we’ll definitely go again.
For the last week I’ve been very sociable - lots of people visiting me, and bringing me nice things. Went out for a friends birthday at the weekend and had lots of giggles. I am a bit paranoid about catching colds - because my immune system is low at the moment, but my doctor says I should not surround myself in cotton wool and it’s more beneficial for me to see friends. The only thing I have had to avoid is going to Brownies - kids tend to have lots of bugs - especially in september/october time - so unfortunately I have to miss pack holiday :(
I did manage to go Bridesmaid’s dress shopping for my wedding which was great fun and lovely to hang out with my Bridesmaids (apart from Katherine who couldn’t make it). We chose the exact wrong day to go shopping right next to the Olympic stadium where Ireland were playing Italy in the rugby - we couldn’t move for the sea of green shirted folk for a while! We were successful though and bought 6 beautiful dresses! (not green!)
I also went to another session at Maggie’s with my parents about healthy eating. I was pretty skeptical about the whole thing before going - I’ve been relatively healthy all my life and I still got cancer, so I didn’t really think I could change much by eating differently (also I’m loving chocolate and cake and stodgy comfort food at the moment!) By the end of the session I was totally swayed. They told us about lots of evidence that healthy eating can have a positive effect, and even if it doesn’t it makes you feel better… there were lots of tips and recipes and they gave us lots of yummy food. So I have made positive changes (what harm can it do?!) and have asked people to bring less chocolate and cake…! (caveat: for the week after chemo this goes out of the window and I will be eating whatever I feel like because I’ll need the calories!).
Today, my hair is falling out like never before, I blocked the plug hole in the shower with it, and I’m constantly brushing it off my shoulders. So I’m going to decide before my next chemo session (this Friday) whether to just remove it all - which may make me feel less stressed (and give the hoover a break) and I can commit myself to the pretty scarves that I have bought myself…but I’ll decide that later.
I’m no where near as nervous about chemo as I was last time, I know it’s going to be boring on the day, Nick will be there and my lovely friend Rachel is also coming to keep me company and bring me lunch (yay!). I am nervous about the days after chemo but at least I know what to expect now (apprehension is half the battle for me!), and I’m so pleased that I’m feeling almost normal at the moment - that should help me for next week.
After writing my last blog post, I was overwhelmed with lovely comments and messages, it was amazing to have so much support from friends and family. Lots of people thanked me for writing the blog and being so honest, so I’m really glad I did it, and will carry on doing it. It was so helpful for me to write it down (and I’m sure it will be helpful for me in the future because I have trouble remembering things!). Thank you for reading and like last time please feel free to ask me anything you like. If I don’t reply to messages just nudge me again!
