I just returned from another hospital appointment. I signed the form for a new trial that’s come on to the breast cancer scene. It’s specifically for people like me with an aggressive type of cancer- HER2 positive. Our cancers tend to grow more quickly and spread more quickly than other cancers. This trial will be my fourth line of treatment in eighteen months. The last “miracle” drug I was on stopped working for me after ten rounds. I got seven months out it and then the doctor told me last week that although my scans showed no new cancer body areas, there were a couple of new lesions in my liver, and one lesion had grown to 3cm. I burst in to tears even though I had a feeling bad news was coming. The male doctor passed me tissues. I tried to speak but you know when you’re crying so much words don’t come out properly and you sound a bit like a pig struggling for air?
“It’s not the end” he said. “We have at least three more things to try after your trial.” I asked in my pig voice why I don’t get very long on each drug, and proceeded to tell him how unfair it was-of course I knew that nobody knows the answers and it’s futile asking these sort of questions.
To top this shit off, I’ve become so anaemic that I’d needed a blood transfusion to get my red cells up. That was basically my week last week. Treatment ceased because it was no longer working, and I had a blood transfusion.
I’ve been pretty lucky remaining asymptomatic through out much of this, but I now have pain my my stomach like a terrible stitch. If I eat it tends to hurt more. The doctor told me today it’s my liver and tumours are pushing against the nerves.
We also spoke about the trial and what to expect. They told me not to get pregnant and to use condoms or have a coil fitted and I laughed. I told them that sex is the last thing on my mind and abstinence is my contraception. They laughed. For a brief second I wondered if they pitied me, because it must have sounded rather strange. A woman in her thirties not having sex. Anyway, all being well I’m supposed to start my trial in two weeks. I will technically be a private patient, on a totally different ward with nicer furnishings and lavender and potpourris wafting through the reception.
This last week I have found it hard to motivate myself and crawl out of this hole of deep depression and anxiety. To be fair the anxiety hasn’t been so bad but the depression has its tight grip on me. It’s laughing at me, telling me that death is catching up with me. It tells me not to see friends and make them miserable with my depression, wallow at home instead. It’s hard to shake the depression off when you feel so sad and so physically weak, but today one week on from bad news day, I am starting to feel more positive about this trial and my future.
There’s been a lot of focus in the media around cancer survivors talking about how hard it is to move on from such a horrible experience. I’ve been saying this for years, but people still lack understanding whether it’s friends and family or in the workplace. Many presume people should just be over it after treatment ends. This was me years ago, the worry, the fear, so I totally understand these women and they have every right to be heard. Their feelings are valid and should be respected- what to do with those fears though that’s the difficult part. I remember saying once, I’d rather be incurable than in that horrible limbo not knowing my future, but now I regret those words because it couldn’t be further from the truth. As hard as it was back then, I would give anything to be cancer free, to feel that immense joy when I’m told that there’s no cancer visible. I’m never going to be given that news now. The best I can ever hope for is reduction in tumours or cancer staying the same and not growing. Isn’t it sad when your good news sounds absolutely hideous and frightening to another? I would give up everything I owned, every penny, to be in that limbo again because the probability is that cancer would never come back, I’d see my grandchildren and my kids weddings. I’d outlive my 73 year old dad, but none of this is going to happen. At least in limbo you have a good chance of being ok. So I say to people please focus on that. This comes from a good place, and from the heart because I love and care for people deeply and it hurts me to think of people worrying so much about something that may never happen. I say to people be nice to yourself and your body. Tell yourself that you’re amazing and believe it. Try not to think the worst, I did that a lot, sometimes I wondered if I willed my cancer to spread, I was so negative and miserable I regret it now.
I dully understand that the unknown is very frightening, and it almost seems cruel that nobody knows if their cancer will return, but perspective taught me that I would much rather be in that limbo boat than where I am today. Premature death for me and many others is inevitable and instead of worrying if cancer is going to show its ugly head again I worry how I’m going to die and how much pain I’ll be in when I do. In limbo I always knew that there was a possibility that I would be ok and live a long life, when the anxiety got too much I could soothe myself with knowing that.
To conclude, all feelings are valid, nobody has the right to tell you you’re not allowed to feel something, so don’t listen to anyone who does. I think it’s normal to feel anxious about cancer returning but if it takes over your life then you should definitely talk to someone about how you’re feeling. For us incurables, it sometimes seems impossible to carry on and even though I think I do a good job mostly, I’d love advice on how you manage to keep that strength up and remain hopeful when treatment stops working.
Love to everyone fighting (past and present)