I've been reflecting today. Trying to remember the lessons the last year has taught me. Tomorrow will be exactly a year since I first sat in Day Stay and received my first round of chemotherapy.
|The fabulous and hilarious Stan administers the evil concoction...|
A part of why I included so much about my treatment and myself on this blog was because I want other people to maybe benefit from my experience - or at least to know there is someone else out there who knows what they are going through...or about to go through. So here's my advice from my own personal experience to anyone who is making this journey through chemotherapy and even for those who have someone they love going through it.
1. Keep energy for yourself and those most important to you. For example, during treatment I had a woman I knew through one of my children's kindy who kept texting me and sending me invites to have the kids over, or for a party. Some of these I replied to and declined for reasons that were perfectly valid or otherwise I didn't reply as I was just too low on energy or too sick to even think about lifting a finger to text back. I did that a lot, and I did it to everyone. There were no special cases. Towards the end of treatment I recieved a text from her asking why I never replied and what the hell was my problem? How did I react? Well normally I would have cried but by this time I had grown a spine and any unanswered messages/emails/text/phone calls were because I just plain couldn't. Or if I had a small bit of energy then I would have spent that on my husband and kids. Because basically and shortly put - they were more worth it. I was unapologetic and told her exactly why. Being honest is the best thing really.
2. If your bloods are low - keep away from crowds.
This was a hard one for me. I missed a whole two and a bit terms of school, hardly visited the supermarket and parties were occasional. I couldn't visit Owens dying grandmother in hospital and I was so often an absent mother - I couldn't go to school for pick up except maybe for the very odd occasion, and only if my bloods were okay. But this is important - If your bloods are low and you expose yourself to the worst bug carriers (kids) then you are going to spend time in hospital. Don't do it. Being neutropenic can actually kill you. I was unlucky enough to have to spend a week in hospital because I caught the tummy bug that went around while my white blood cells were way down. There are some things you can't control and that's your own kids coming home with a bug! But exposing yourself as little as possible will help.
3. Don't be hard on yourself. Before I started chemo I had heard of one woman cutting down her daily run to a walk and a weekly run when she went through chemo. I blithely imagined it wouldn't be that hard for me so I committed myself to a daily morning walk to keep active and balance out the steriod weight gain. HA! As if! There were many days where just making it to the bathroom was a struggle. One time I managed a walk around the block with about 20 stops along the way and the whole way around I though my heart was going to explode. I was so disappointed in myself. So when I had the energy I went hell for leather and then left myself empty for the next few days. I eventually found a balance, but I had to be kind and listen to my body.
4. Take ALL the anti nausea drugs prescribed to you. Don't imagine that you will be okay because you felt fine the first night after chemo. Because its the next day and the day after that which start beating you up. Its much harder to get a handle on nausea and vomiting once its started, so take everything that you are told. Its not worth being as sick as a dog because you don't want to take more drugs!(which is the way some people think - after being pumped full of nasty toxic chemo drugs!)
5. Accept as much help as possible. If someone offers to cook for you, say yes. If they offer to collect your children from school, say yes. If they offer to fold your washing, shop for food, bring you fruit and veg, clean your house....say yes. All those little things are energy sappers. Even my husband who thought he could keep a handle on all these things lost it after a while and we ended up with some amazing help. We couldn't have kept our sanity and gotten through it without the help and assistance from some magical people. Its also a chance for others to help when they feel SO helpless.
6. Check what WINZ can do for you. This organisation is great and there are many things people don't know about if they don't ask. I went in to see what help we could have as I wasn't working, and we were offered a great amount of help. Because I was Johnny's main caregiver we were given a subsidy for up to 50 hours a week for childcare and also the cost of fuel to and from the hospital for the entire duration of my treatment, including doctors visits. (Note: we didn't have private medical cover so the deal might be different if you do) Its worth filling out a few forms for this in the long run as it saved us around $2000+ per year, plus the staff were incredibly understanding and kind. If your gonna have cancer, at least let a few things work in your favour!!
7. Make regular special dates. If you have a significant other in your life then when you get the chance to spend quality time with them - do it! Thursday nights became Owen and my date night as I needed something to pull me through the week and make me look forward to something. It was also the day before I crashed after a Tuesday chemo infusion so I had a little more energy. Even if it was a walk, or a movie, dinner, a drive, or a couple of drinks next to the fire it was always so nice to have an excuse to dress up and pretend normal for a wee while. I got out the wig, the lippy, the clothes I could (just) fit and we would pretend for a night that we were just a normal couple. And its something we still do every Thursday now and its been great for our marriage.
|All dressed up...but no lippy!|
8. Expect that some people will disappoint you. Like the woman up above most people aren't going to understand. It hurts though when there are people you love and imagine are close who back away. Everyone deals with a cancer diagnosis in SUCH different ways. What I couldn't handle was people not educating themselves properly and therefore jumping straight to the conclusion that I was going to die!...awkward!
But its okay, its not worth your energy to make everyone happy as you have to focus on yourself. Some people will surprise you with their distance, and others will surprise you with their overwhelming desire to help.
9. You will probably hear LOTS of cliches. "It happens for a reason". "Stay positive". "You'll be a better, stronger person". I heard those A LOT. I don't particularly like them either. It doesn't mean the person saying them is wrong, because I'm sure most of the time they were just trying their best to say something meaningful. The thing is though, staying positive is downright hard, nigh impossible at times and if you've been through anything traumatic you are probably nodding. Through most of chemo it just kept hitting me over and over again how my main thought was "this is so unfair" or "I can't believe this is really happening". I cried all the way through the 18 weeks, pretty much everyday. It's not something that you can be positive about, apart from focusing on the end and knowing that one day this will all be finished and you can maybe be yourself again.
Here's a tip for those who don't know what to say to a cancer patient: The best thing to say rather than "be positive" is "you WILL get through this". You can't promise they'll be a better stronger person because of it, because maybe they will, maybe they won't. But they will get through it, and if you are there encouraging them and letting them know you care even in the littlest way...then that means more than all the cliches in the entire world.
|You're not always going to look pretty though....|
So there you go. There's a general couple of tips from me. If you have any questions or found this helpful then I'd love to know. I've always said I am open to discussing my journey and if its helps even one person not feel alone and scared then I'll be pleased.