Early in the year, someone close to me, someone that should know better, someone that should be one of my biggest supporters, sent a text saying something pretty horrific…
‘You have been dying for two years, it is no longer an excuse.’
Ok, everyone, pick your jaw off the floor and get out those awkward giggles that come out when you just have nothing to say.
This horrible comment was said in the context of their unhappiness with Serge and I not visiting THEM enough or not calling THEM enough. Obviously I can only put my side of the story forward, but this is someone that seems to have forgotten that they have a car and phone.
I have never written about this specific situation for several reasons, mainly, that this person doesn’t deserve my time, definitely considering that they never acknowledged what they said was wrong. But, most of all, I have only now chosen to write about this because this is the very extreme case amongst very few examples of people in my life that should know better and deserve a kick up their behind.
That is as much as I will say about this specific situation because it doesn’t deserve more thought, but I do want to talk about why these comments will always linger in the back of my mind.
I have had advanced cancer for 3 years now and I feel like I am old news. I feel like I don’t deserve any more support. I have already asked for so much from my loved ones.
When I was first diagnosed with terminal cancer, everyone was shocked. Everyone was trying to take in the news that I wouldn’t be here much longer. Everyone was ready to offer the emotional and physical support I needed. If anything, there was too much, I felt that everybody I had ever met in my life were lining up to say their good byes. I didn’t want to spend the few months I was told I had left saying goodbye over coffee. I needed to be with my husband, immediate family and my closest friends.
Obviously over 3 years of cancer things change. It has been a roller coaster.
There have been months that have been spent preparing for my death and making sure that I spent time with Serge, my family and closest friends – purposely making memories. During this time, family and friends were always around because they knew how precious time was. Serge wasn’t working. They knew that I needed extra support – physically and emotionally.
Then, there was the high of treatment working and life going back to some degree of normality. I was not so dependent on people for emotional support. Obviously, terminal cancer was still floating around in the back of my mind, but it was not taking over my life. The time I spent with friends was far more relaxed. I was not avoiding social situations because I was scared of what people outside my immediate circle might ask or expect of me. Serge returned to work and I started my blog and working casually.
And then, there was the time of limbo where we really didn’t know what was happening with my cancer. I was jumping from treatment to treatment. The cancer wasn’t growing overly fast so I wasn’t fearful of the end being near. I didn’t need the same support I did when I first found out I had terminal cancer. I was definitely struggling more emotionally and physically and I definitely needed more support and somewhat craved someone saying, ‘Emma, are you ok? Do you need help with anything? Do you need me to bring chocolate over and have a big cry?’ I was jumping from treatment to treatment which kept me busy and, I guess, not dwelling on this too much.
I have the most amazing husband, family and friends, but, I started to feel like old news and unable to ask that I needed more from them. This is so selfish of me because I know that they have their own lives and, also, know that it is so hard to face my cancer and sometimes it is just easier to ignore.
This is where the comment that I mentioned above lingers.
I feel that maybe people thought I cried wolf saying that I only had three months to live – what is Emma still doing here three years on?
Just because I am still here three years on doesn’t mean that having terminal cancer is any easier for me or those closest to me. Although there have been so many highs the last three years, every morning I wake up with all the feelings and pain that comes with cancer, and every night I try so hard to push those pains and emotions to the side just to get some sleep.
Here we are now, a month into a clinical trial. A clinical trial that I was able to access because I have exhausted all treatment options on the PBS (i.e. no more options to try if this doesn’t work). This trial is knocking me around physically, experiencing more side effects than I have on any other treatment. I am experiencing the worst pain I have in the last three years.
Now more than ever, I need help, but I feel like I am old news – How many more times can I say to my family and friends that things aren’t going my way? How can I, once again, gather the strength to say I am struggling?
I am feeling lonely.
I am feeling sad.
I am feeling tired.
I am feeling like a burden.
I struggle with the fact that I miss out on social events because I am not well enough or in too much pain. I am dependent now, more than ever, on people coming to me and that is not always easy.
I am extremely dependent on my mum and Serge to help around the house with cooking and cleaning, and simple tasks like driving me to appointments when I am too tired or helping to take Ralph out to the toilet.
I struggle bringing this up because it means we have to talk about the reality of cancer. We have to bring it to the forefront of our mind. I don’t want to upset the people I love most.
Like I said, I have the most amazing family and friends that have been with me on this roller coaster for three years. I guess I need to speak up now and say that I am needing a little more at the moment. I am needing help with daily tasks, but most importantly I just need company – I need a distraction.