Hello new friends, old friends and everyone in between!!!
I woke up this morning to a message from my friend Liz saying that I was in the news again! Oh hi, it me! It goes a little something like this:
Apart from giving me slight cancer fraud by initially saying my chemo was only 3 weeks long (those of you have been here a while will well know it was actually 24 hrs/day for 5 days a week, 3 weeks in a row, then 2 weeks off, rinse and repeat 6 times – for a total of 7 months!!!!) It was a really lovely article! Very nicely written. And they were kind enough to amend it quickly. Though might I just add that I’m not ‘returning to work soon’, I’ve been back at work for 6 months!!!
I spoke to the reporter a while ago and have been waiting for it to surface and was hoping one of you lovely people would let me know when it did. And in fact a few people have found it! And it appears a few other newspapers have run the story too based on the Daily Mail article.
I’ve already been contacted by a couple of people who saw the article who have been through or are going through similar things. I can not tell you how happy this makes me. Obviously I am devastated to hear anyone has had to endure such things too, but very happy to hear from them. I will get back to you all in due course! Thank you for reaching out.
People who have cancer often say it is isolating. I think this is quite an interesting thing to note for people who have been fortunate enough to dodge cancer so far. I have felt so supported and loved through the whole thing, and I can’t thank you all enough for helping me to not feel alone. But there is truth in the fact that going through this can be really isolating, especially if you don’t know other people who really get it. I’ve found such comfort in my amazing online community of all sorts of different cancer people. You can find similarities between any type of cancer, it is quite a leveller of playing fields. And to be fair, even people with the same cancer and treatment can have quite different experiences, so you can find similarities and differences in many places.
But with a super rare form of cancer, in an even more rare location (jaw), it can sometimes leave you thinking ‘am I the only one who knows what I’m going through?’ From ridiculously extreme chemo to having your face rebuilt and having to deal with the aftermath not only of cancer but also of having a new face to come to terms with.
I follow the ‘osteosarcoma’ hashtag on instagram and I have found a couple of lovely osteosarcoma people (or other types of sarcoma too through similar routes) but the demographic for this type of cancer is pretty much children and dogs. And polar bears. Seriously. (Poor polar bears!)
I do have a couple of people who have found me through the blog and we are now in contact. But I can’t even begin to explain how amazing it feels to know that you are not the only one, you are not the first, there are people out there who really get it.
Sometimes I think it would have been helpful before I went into surgery to see someone who’d had a similar thing. So that in those days when I wondered how on earth I would ever have a normal life again, I would know that it is possible.
And to any of you who are going through similar things, or in fact any things, it is possible!!! A lot of people with cancer use a term ‘new normal’ to describe their life after cancer, and although I think it comforts some people, it has always bothered me. To me it seems a negative thing, often used to describe things you were once able to do but no longer can. Things that cancer has taken away from you. But in classic Jen style, I won’t let cancer change my life, my life will only change if I want it to!!! (probably said with a fist in the air or something). I was speaking about this with a friend the other day who had her osteosarcoma in her leg and it has caused her many ongoing struggles, impacting her life a fair bit. She has to admit that shitty horrible cancer has affected her life. And yeah I totally get that! Please don’t think I’m glossing over serious life-changing things that cancer has caused people (or me), that I’m minimising them by saying that my life hasn’t been changed. I’m not trying to isolate people who’s lives have drastically changed. If I let my guard down for a moment, peer through the gaps of this heavily reinforced protective wall that I’ve constructed around myself, yeah there are things I can no longer do. I can’t stay out all night, I can’t manage a full five days in the office, there are days I wake up and can hardly move if I had been active the day before, I’m waiting to see if the neuropathy (painfully numb hands and feet) gets better and if I will ever be able to play music again. And I already know I’ll never be able to sing like I used to, and that was an incredibly big part of who I am. But what is the use of mourning? If I can never sing and perform again, I will work on shifting my focus to writing music or something (I’m still in hope I’ll work out the singing thing). While I will be kind on myself, I won’t let cancer have the power to take things away from me, I will only find new ways to do things and new things to do.
Staunchly independent, control freak, yeah I know! I think my stubbornness can have its pros and cons but it has been useful in taking control through cancer, and also in helping with my recovery after surgery.
Anyway. To all you lovely new people, I hope you find some interest, perhaps even solace in the words I write. Please feel free to put your email in and subscribe if you want to follow along or say hi on Twitter or Insta (@thecancerchrons). I hate shameless self promotion, but the fact that telling my story can help others brings me no end of joy. You are not alone. You are never alone.