So I thought I should do a little update :)
First off, I went on an amazing cruise holiday with my family in February! I celebrated (? Lol) my one year cancer-versary, got to feel like a princess in a gorgeous dress, and spent time on some beautiful islands. Unfortunately due to the virus a few islands were cancelled, and we had a few surprise stops instead, but we still made the most of everything and I got to actually relax. It was so great. We went to Sydney first for a few days, then got on an incredible cruise ship for 14 nights. We sailed to Noumea (New Caledonia), then Lautoka and Suva (Fiji), then to Tauranga (NZ), to Eden (Australia) and back up to Sydney.
My favourite place was Lautoka, as we went to a tiny paradise island and got to swim, snorkel and play on the paddle boards. I also quite liked going to Tauranga! Even though it was back to NZ, I haven't spent much time in that area, and I got to climb Mt Maunganui on my cancer-versary which was a pretty awesome achievement.
I am currently back at work, and trying to do 6-7 hours a day, which can get pretty exhausting. I love being back in the real world though, but am now obviously a bit nervous about the virus! My immune system can be compromised up to 9 months after chemo has finished, so if you are sick, please stay away!
I am also back riding Louie. We are having lessons and lots of fun treks. He has improved so much, and I can now take him on long treks which is so amazing. He is loving our hill canters, and is just so lovely to be around. I am so happy with our progress.
Most of this blog is a bit about what I have learnt going through treatment. It will probably be a bit whiny… but oh well, sometimes I need to get this stuff out. I don’t want or need any sympathetic messages, and I don’t want to upset anyone either. I just would like more people to understand a little and potentially be more aware of things. But even if no one reads this, it's always therapeutic writing my little rants :) Sorrynotsorry for the depress ahead!
When you are first diagnosed with cancer, EVERYONE wants to see you. Everyone wants to catch up. Everyone wants to help. You are a shiny new toy. Which is sort of lovely, but sad that some people only want to be a part of your life if they think something might happen to you. Then you start chemo, and you can’t go and see people because everything is hell. And so people start dropping off. You get a lot of empty offers though. If you know someone going through cancer treatment, or just needing help in general, try not to say ‘let me know what I can do to help’. Because the person probably won’t tell you or will feel like a burden actually asking for something. I had friends send magazines, drop off food, and help look after my horse. When my family came down they helped cook and clean, and tidy up the house maintenance. These were the things I needed help with the most that I wasn’t going to ask for. If you know someone who is going to go through chemo and don’t really know what to get them, you could also get them bed sheets! I know it sounds weird, but sheets are important. My sheets had to be changed so regularly as I would sweat so much at night time. I would wake up drenched, and the smell of the sweat was just chemicals from the chemo. I just wanted nice clean sheets that didn't stink of chemo. I have washed my sheets so many times, and they are permanently ruined from chemo. I had another friend bring over horsey magazines, plain salt crackers and a lemon barley syrup to put in my water. That was an actual lifesaver as I couldn’t stand the taste of normal water. Salt crackers were also the main food group in my diet while having chemo, so they were also an incredible thing to bring round! I also had a lot of offers to take me to and from chemo which was so nice, but no one really followed up and I would never feel comfortable asking. If you know someone starting chemo and want to go with them, definitely ask what day and time they would like to be picked up and what to bring as well, rather than just making the offer. I’m sure my mum and partner would have loved a break from sitting with me in hospital, and I was always really grateful when someone stepped in when they couldn’t make it to any appointments. And I am so grateful for the people who stood by me all year and continued to check in.
I am a person who likes to be ok. I don’t particularly enjoy being not ok, and If I am not ok I don’t really want people to know. When I went through chemo (and surgery and radiation), I would pop into work and say I was ok. I would tell my friends I was ok. I would say chemo is going ok, and life was ok. But it was not ok. It was horrific. And I wish I hadn’t down played it so much. No one wants to hear that you are no okay though. If you know someone who is going through treatment, they are not ok. They might be having a slightly less shit day, or feel slightly less like a human pin cushion filled with poison, but they will still feel horrific. They will be feeling sad they are isolated from friends and family (before corona this was/is the norm for all cancer patients), they will be feeling frustrated this is happening to them, they will be feeling left out that life continues for everyone else but not them. They will feel so insanely sick and so insanely tired. They might be feeling guilty, knowing others who are not surviving yet they are. They will feel like this isn’t even them as they watch their body changing, growing puffy from steroids or maybe thin from not coping with medicines, and feel like they’ve lost their identity as they lose so much hair. They will be feeling like they have never felt before. There will be so many needles, so much medicine and poison pumped in to them, and so much fear. And everyone will tell them to be strong and positive and give them stupid advice that they don’t want to hear. You try being strong and positive as all your hair falls out, and you go into hospital every week to be filled with poison, just to come home and be injected multiple times so you don’t get even more sick from infection and so you can still maybe have babies, and then take handfuls of medication three times a day that make you want to throw up. Please don’t tell you friends to eat more kale or turmeric or that essential oils will cure them. They have wonderful medical staff who are absolute angels who will tell them what they need. I will never forget my oncologist taking me in for a last minute appointment one afternoon, and he just let me have a meltdown. They are amazing people.
This is a snippet from a blog post that was posted on one of my cancer groups, which I think is still so relevant now after treatment.
“My life was filled with suffering, yet no one wanted to hear about it. ‘Tell me happy news,’ they said. Or ‘What else is going on besides cancer?’ Positive stories were the only thing people were willing to hear. Everyone knew I had a life-threatening illness. Yet, they preferred to lie under the deception that I wasn’t sick. ‘Get better soon,’ they said as If I had a bad cold. People’s inability to make room for the reality of my cancer experience made me feel invalidated. I felt like my true self had no seat at the table anymore. The only part people wanted to see was the cancer warrior who smiled on photos and filled them with hope. That was such a small part of my experience. Minimizing my condition was a way for them to manage their fears.”
It’s only the positive that people want to hear about and talk about. And a lot of the time we need to talk about the negative.
As soon as I had ‘recovered’ from surgery and had finished chemo, it felt like everyone thought I was suddenly better. I still had radiation to go, which was so exhausting, but it’s not chemo so it’s fine, right? I still have burn marks from radiation, three months on. I think it’s a bit sad that I feel lucky that most of the area is so numb from surgery that I can't feel most of the burns. Once radiation is over, apparently I am magically cured. Everything is fine and dandy and I am exactly the same person I was before cancer. I wish it was as easy as that.
I met some amazing friends around the world who also went through BC at the same time as me. I have been talking about how ‘after treatment’ life is with one friend recently (my almost cancer-versary twin), and this is what she said about the ‘after’:
“No one gives a shit anymore. It is astonishing. Everyone just sees the hair growing back, the daily routine. I am NOT okay and no one is listening to me when I try and explain it. I’m sick of everyone thinking I’ve beat cancer so I’ll be fine until I’m 70. Nope, fear of reoccurrence every single day. Trying to figure out where I am going and what I am doing. Realising my whole life has changed. It infuriates me. I’ve sat at coffee with my friends and they’ve asked how I am, I am honest and say I’m shit and I hate my life. But no one calls me to check, no one follows up, and no one acknowledges I said those words. It’s like maybe I imagined it (having cancer). I wish I could work from home so I can sit when I need to and not have people judge me for needing a nap. And I’m done with the comparisons to older ladies. Seriously, stop telling me about your aunt/grandma/friend who was in their late 40s/50s/older who won’t see their kids grow. I probably can’t have any!!”
She summed it up so well. Which is heart-breaking. People see you back at work and back trying to get through life and enjoying activities, and presume that means you are perfectly perfect. And how I look 'so healthy' because I am tan from my holiday. Even though I have ugly bald spots and thinning hair and feel very not healthy.
Life after cancer is so scary. The fear of reoccurrence is so real. I think for me I am terrified of having to go through chemo again. And what would happen with my job. Each time I have to have a blood test I freak out. There are so many endless ‘what if’s’ that go around in my head. After cancer things change so much. I am so tired all the time. It is hard to sleep. Sleep is one of the best ways to stay healthy, and my oncologist said I should be aiming for 8-9 hours a night for my recovery. But that is something that definitely will not happen. My brain struggles to remember things, and I often can’t think of the right words I want to use at work. A lot of the time I want to lie on the couch in a patch of sun and just rest my body and my mind. I am so insanely thankful for my horse. He gives me the escape I need from reality. We can go on a trek together, I can put music on and just sing and forget about everything and my mind just gets to chill out.
It has been three months since I had my last radiation treatment. This time last year I was one session in of 6 months’ worth of chemo. 6 months of having litres of poison going through my body. Plus two surgeries. Plus 19 rounds of radiation. All the endless blood tests, port flushes, injections, scans, appointments and medications. The amount of aftercare for my surgery site I have needed this year already. I have had scans and blood tests, and was going in every week to see a nurse. And everyone thinks because it is ‘over’ I will be back to normal. What?? I can’t even deal with the smell of hand sanitizer as it reminds me too much of having my port site cleaned before treatments and makes me feel so ill. It blows my mind that you are just thrown back into society after all of this, and everyone expects that you will just be the same person you were before. Because I am a people pleaser, I so desperately want to be that positive, energetic fun Vicky everyone wants me to be now I am ‘better’. And honestly, I like being positive and energetic and fun. But sometimes I need to not be. And I need to rest and be sad and process everything. And that is going to take a lot longer than three months, and I really want everyone to know that every day is hard and it will be hard for a long time, mentally and physically.
If you got this far through all the sad rants, thank you for reading my not so happy but so very needed post. And I hope that maybe it'll help spread some awareness about the after. Or maybe it'll help someone help out a friend with cancer. Either way, I like to hope it has helped in some way.
Love always,
Vicky