So it’s been nearly three weeks since my first round of chemo and I’m feeling pretty good at the moment. Actually I’ve been feeling well for nearly two weeks which is promising going forward. We’re all settled into our new home. It’s very comfortable, breezy, roomy, perfect for our needs – I love it. We live in a good area with plenty of handy things close by. My aunty and uncle live 15 mins away in Sherwood, it’s only 20 mins to the Wesley hospital, 15 mins for Derek to get to work, swimming lessons for Rosie every Sunday at the end of our street, new GP 3 min drive, park, coffee shop, convenience store, dietitian and acupuncturist 5 min walk away and plenty of shops a close drive away.
It was fantastic of Derek’s work to put us up in the unit in Southbank but it wasn’t ideal to go through my first round of chemo staying in such a small, confined place. I’m just glad it was only for 1 week. We moved into our new place the Tuesday following the chemo. Mum and Aunty Deb were here to show the removalists where to put everything and to start unpacking. Aunty Marie came to the unit and helped me with the girls and pack up everything there, then we made our way over to the house in the afternoon. Unpacking was a slow process. Normally I’d be in unpacking as quickly as possible. I couldn’t do that this time round as I just didn’t have the energy but I didn’t let it bother me. I just let it happen around me and when I started feeling better did what I needed to to get settled.
Looking back at the first week after chemo, it was bad while I was in it but not so bad that it makes me feel really anxious about doing it again tomorrow, not yet anyway, that could change come the morning though. I wasn’t in a great frame of mind or in a good place physically before starting chemo. I was stressed out and worn out. It would have been nice to take a little holiday, relax and really store up some energy. I do feel I’m in a much better place now. Having day surgery for my portacath insertion the day before last time wasn’t helpful either. As I said in my last post I was sedated which I amplified by taking more drowsy pain killers during the night. The morning of the chemo I was feeling very fragile both emotionally and physically. I had a good cry when I sat down in the chemo chair and just let it all out. That helped a lot and I pepped up a bit after that (although that could have been some of the drugs too!) I think that was all I needed, a release. So we (Derek and I) sat down with the oncology nurses and had some chemo education. Things like: close the lid when flushing the toilet for 2-3 days afterwards, if I vomit, use gloves and place any soiled items into a garbage bag if not washing straight away, wash any soiled clothes separately to everyone else’s, this is all due to being cytotoxic for a few days afterwards, days 7-14 are when I’m at the highest risk of infection, take temperature two times a day and if it gets to 38 or over get straight to the hospital, rinse my mouth out 4 times a day with warm salty water and brush after eating to avoid mouth ulcers, moisturise regularly, plus lots of other stuff. There was a lot to take in that morning.
We got there at 8:00 and left around 12:30. I was meant to stay the night in hospital but a bed wasn’t available until 3:30 that afternoon. I felt okay so decided to head back to the unit and be with my family rather than in hospital alone for the night. The nurse told me that the side effects are normally worse the days following the chemo, not the day of. Right she was, my worst days were 3 and 4 so the Saturday and Sunday. The nurses were great, friendly, warm and caring. Funny story, my nurse for the day used to live across the road from Derek’s boss. A tea lady came around regularly with drinks and food. Dr N was accessible and answered all of my questions. The actual injection of the drugs only took an hour or so (I think, can’t quite remember now…) There was waiting around at the start. They take my blood first up to check my blood counts, then when they have the bloods back they order the drugs including the chemo from the pharmacy and then we’re good to go. If ever I go and my blood counts aren’t what they’re meant to be then I won’t have chemo on that day, it will be pushed out a week. Fingers crossed this doesn’t happen. So, I was injected with anti-nausea medication prior to the chemo plus some steroids which helps with appetite among other things I’m sure. Apparently women on breast cancer chemo normally don’t need to worry about losing weight, due to the steroids its more commonly an issue of putting on weight. It will be interesting to see what happens to me in that regard. My appetite was shot for about 5 days but came back with a vengeance after that. Actually, I was still hungry the whole time I was nauseated but I was totally off food and didn’t feel like eating a thing. I stuck with small bland meals, eating ice, sipping water and protein fruit smoothies. It was very much like being pregnant for me. And the way I’m looking at it is if I’ve been through two pregnancies where I was nauseous and off my food but still quite hungry for two whole months, each day, every day, all day and especially at night, then surely I can handle a few days here and there over the next six months. Piece of cake! Haha, I say that now, feeling well and healthy and happy. I wonder if I’ll be thinking the same thing come Thursday to Wednesday next week… Maybe they’ll play around with the amount of anti-medication they gave me. I had 4 different types of anti-nausea meds, two that I was told to take and the other two which I was told I could take if I needed to. I took all 4 and still felt nauseous. There was one type that also made me drowsy. I took this a couple of times during the day on Saturday and have decided never to take it during the day again as I do think it made me feel worse. I slept on and off all day that day, waves of nausea coming over me whenever I was awake or even slightly awake and probably in my dreams too. Being cooped up inside the unit didn’t help either. Cooking smells hung around, plus bathrooms smells couldn’t escape (strong smelling cleaning and soap products). If we opened the doors the smell of petrol and the noisy sound of cars came blaring into the unit. I’m sure that being here, in our new home, will be a much easier, stress free experience where I can get fresh air whenever I need it. The lack of fresh air surely wouldn’t have helped last time. I’ll be much more comfortable and happy here.
Anyway, back to my first round of chemo. It’s given as two separate drugs for the first 4 rounds (which are 3 weekly). The first one is bright red and is injected manually by the oncology nurse. She gets suited up in her protective gown and thick blue gloves to protect herself from the drugs in case of spillage. That is scary in itself, the fact that she needs to do this in order to put this stuff inside my body. I tried not to think about that at the time though, it’s counterproductive to my positive attitude! The second drug is in an IV bag connected to my portacath and drips through slowly. It’s clear and much less scary looking, unlike the bright red one. I popped in my headphones and listened to some uplifting music whilst the drugs did their stuff. I’ve made a playlist that I’m going to listen to each time to help pass the time and keep me in the right frame of mind. If anyone has any suggestions of songs I could listen to at this time I’d love to hear them. Just thinking back, the whole thing was a lot less scary than I was expecting. I actually felt quite comfortable there and it was probably down to the nurses, the tea lady bringing me snacks and drinks, the people around me going through a similar experience (which was comforting in a way, although I wouldn’t wish it upon anyone). I’m glad I feel like this because the next time I go it won’t be quite as daunting. The nurse did say that some people do get anticipatory nausea which can come on before they even arrive, or soon after arriving. I really hope this doesn’t happen to me but I’m confident it won’t. Before sitting down and writing this post I hadn’t actually thought much about being there last time or going back this week. I think it’s because I’ve had plenty to keep me occupied in between the feeling unwell and this next round coming up. I’ve actually felt really good, almost normal (my new normal anyway). The left arm and chest wall is still numb and tight plus I still have cording under my arm where the tendons have shortened but all in all, I feel pretty good. I went back to the physio yesterday and she worked her magic on me. I don’t have to go back to her until January now but will attend her cancer rehabilitation exercise classes a few times before the end of the year. I had a terrible head cold which hit me on about day 5, the Monday following the chemo. I suffered with that for nearly a week but once that eased up and the unpacking was done, it was like life had returned with some normalcy (again my new normal). That is, until my hair started falling out…
So, last week my hair started falling out. It wasn’t coming out in clumps, just strands initially but when Polly grabbed a hold and pulled out a heap, I knew it was time to get rid of it. I decided to shave rather than let it fall out with any length to it. I didn’t want to be shedding everywhere and preferred the control of shaving it off rather than letting it thin out and fall out naturally. The big shave happened on Saturday afternoon, after putting it off for a couple of days. Initially because I was a bit overwhelmed by the fact I was about to shave most of my hair off but also because I wanted Derek to do it during the day with the girls there to see, rather than at night and them waking up to a bald Mummy the next day. That could be a bit of a shock for Rosie in particular, even when explained prior to the event. So we set the date as Saturday afternoon and after a couple of wines for dutch courage, got the job underway on the back deck with Rosie running around blowing bubbles and Polly chattering away in her swing. It’s not a clean shave, so super short bits are still falling out. Derek did the final cut on number 3 clippers and I’m wondering whether to go even shorter because my hair is falling out more and more and when I lie on my pillow it feels like the hair is sticking back into my head. Derek the Barber tried out a few hairstyles on the day. The first one was Private Hower, flat top army style. Yuk yuk yuk. Hideous. Then he shaved a mohawk into it for a bit of a laugh. This was a fail as we should have kept the top longer for the mohawk, it was too short and not very effective as far as mohawks go. Shame, I was disappointed as I really wanted to sport a mohawk for a day or so. Finally he did the Nothing Compares, Sinead O’Connor style.
What do you think of my different hairstyles? From punk rocker to flat top to mohawk to Sinead O’Connor. Which is your favourite? Mine is punk rocker. I really liked that hairstyle and may do it again when my hair is growing back. I like the fact that out of this I’ve found another hairstyle I can add to my collection. I do tend to revisit hairstyles that I’ve had in the past, although the mohawk will definitely not be one of them. Derek likes my current look and told me I look like Sigourney Weaver in Aliens or maybe it was Alien, whatever. That’s a compliment coming from my husband, major sci-fi fan, particularly the Alien movies. Even though it feels nice when the breeze touches my head, it’s unlikely I’ll revisit the Sigourney Weaver look again by choice. Rosie enjoys running her fingers over my head but has told me she doesn’t like how it looks. Oh well, can’t please everyone! I don’t think Polly likes it either as she’s got nothing to hold onto when grabbing at my head.
I’m not really too concerned about losing my hair. I feel relieved now that it’s been shaved. And I think I’ll feel even more relieved once it’s all gone, from my head anyway. Once I know something is definitely going to happen, I just want it to happen good or bad. I’m impatient that way! Waking up and finding short hairs all over my pillowcase is more of an annoyance than something that upsets me. Eyebrows and lashes still intact, yay! Underarm hair coming out, yay! Leg hair coming out, yay. Hormonal hair under my chin coming out, yay! Hairy toes still intact, 😦 Wondering if hair on my arms will come out… Stay tuned for that one. It will be great not to have to shave for six months.
I had a fun morning with my friend Jules last Monday. She was kind enough to fly down from Raglan/Rocky to spend the day with me. We went to the Look Good Feel Better workshop. They gave some good make-up tips, including how to draw eyebrows on if the loss of eyebrows does eventuate. I took home a bag of goodies. I also tried on a few wigs. The blue party wig was our fav and I’m considering getting one for a bit of a laugh. We finished with a lovely lunch in Paddington before Jules hightailed it back to the Ranch at Raglan. Mum and I went wig shopping on Saturday to see a wider range and of course I liked the most expensive one – $650! I can’t get a rebate from my health fund so have decided to just scarf it most of the time. It feels so nice to pull the scarf off when I get home from being out that it’s likely I’ll end up going bald also. A wig probably wasn’t a great idea over summer anyway and I just can’t justify $650 on a wig I’ll only wear maybe once a week for approx. 8 months. Some of the styles were quite hideous either too full and boofy or too short and over styled, neither of which suits me and my little head. Nor do I like them, obviously.
I’ve been to see a Dietitian and have been told I need to eat more high calorie food to keep my energy levels up. This means eating foods higher in fats and sugar, which is totally the opposite to what I’d normally eat. I’m a pretty healthy eater and the thought of eating sugary foods often just makes me feel a bit sick. It all sounds a bit strange. Surely I should be eating highly nutritious foods instead of sugary foods. I’m adding Sustagen into smoothies plus eating lots of protein snacks. The dietitian has said I need to build muscle mass like an athlete. Lots of complex carbs and protein. I’ve just bought myself a you beaut high speed blender called a Vitamix. It pulverises fruit and vege. I’m looking forward I giving it a good work out not just for smoothies but healthy dips and lots of other quick and easy yummy food.
I’m booked in to see an acupuncturist on Friday at the same place as the dietitian, both a 5 min walk around the corner which is ideal. I had a lot of acupuncture when pregnant with both girls and always felt much better afterwards so I’m hoping it will help with my nausea and general well being. My Dad bought me a secondhand exercise bike for $20 and its in great condition. I’ve got it set up in the sunroom and jump on once or twice a day and do a few kms. I’ve also been given the all clear from my physio to start swimming again. I just need to take it easy so probably just swimming with my kick board to start with. And only in our pool as I’m not allowed in public pools until after chemo has finished and my immune system has built back up again. Anyway, even though the amount of exercise I’m doing is minimal its better than nothing at all and gives me more energy.
Rosie started at Montessori on Monday, 3 days a week. She had a great first day, fantastic in fact. No tears, happily kissed me goodbye, ate well and even talked to the teachers and her classmates. The first time she went to her old daycare in Yeppoon, it took them days to get her to talk and she didn’t eat on her first day. She’s really come out of her shell since then. One of the teachers today told me that she did the Montessori puzzles with ease and that they’ll need to find some more challenging ones for her. That made me beam with pride. What a smart little chicken we have and even if she’s being really cheeky lately, I love her to bits and can’t wait to see where this next year will take her.
Polly is cheeky too but in a different way. Her personality just oozes cheekiness and I’m grinning sitting here as I type this just thinking about her funny little actions, her gummy grin and cheeky laugh. She’s really using her voice lately. She’s not sitting or crawling or even creeping yet but she is sticking her bum up in the air trying to move forward although she hasn’t quite got there just yet. She is rolling but doesn’t go too far. She’s not one of those babies that roll all over the place to get from here to there. She’s normally a very placid baby and is pretty happy most of the time. Polly is much easier to get a smile out of than Rosie ever was at this age. I think I’m pretty lucky to have such placid babies as they require a lot less energy. Must be Derek’s genes.
Derek is enjoying being close to work and having a pool to jump into when he gets home. He’s going to the cricket on Friday with the boys which I’m sure he’s looking forward to and will enjoy. Derek deserves a break from all us girls, he’s certainly outnumbered here, 6 to 1 including the animals.
David and Sue (Derek’s parents) come down for a visit next Wednesday. Mum goes home for a well deserved break on Wednesday. Mum’s been helping with the girls, virtually doing all of the housework plus washing and helping with the cooking too. It’s been great as I’ve been able to focus on the girls and also myself which isn’t normally possible as a mum of two young children. Thanks Mum 🙂 you’re the greatest! I’m not sure I’d be feeling as good as I do without having such great support from both my family and also Derek’s family plus all my amazing friends.
So that brings me up to date again. I always feel a weight lift off me when I finish a blog post. It just feels good to get it all off my chest so thanks for listening!