Unlike many of the other blogs I have been reading on my journey thus far, I am not beginning mine on “Day 1.” In fact, I only began to think about writing a blog a few weeks ago. I found that by reading blogs written by other people with melanoma, I was picking up useful information and finding a great amount of comfort in knowing that someone else was going through the same thing as me. Melanoma is not a “sexy” cancer, it is not splashed all over the news, and not many people know just how serious it is. It helped me especially to see that there were other people of similar ages confronting this disease.
I realised that I may too have some things to say that might help people on a similar journey to me. And so I contemplated writing a blog – a very un-Irish thing to do.
The famous British wartime maxim reads “Keep Calm and Carry On.” If there were an Irish version of this, it would surely read, “Keep Calm and Don’t Tell Anyone About It.” But what might a good-ole’ American version state? “Keep Positive and Tell Everything”? I think it is time to take a feather out of that American hat.
I don’t know if anyone will read this blog, if it will be well-written, or if I will even have the motivation to write in it as much as I would like to, but I hope it will be informative or helpful in some way. It might help keep some of my friends updated, and it could be a good way to vent some of my own feelings. So here I will begin my blog, on “Day 68” of treatment. I’m not going to try to fit the whole story into one post, but I’ll do my best to give as good a backdrop to my current situation as I can.
In August of this year, I was diagnosed with metastatic melanoma of the liver and spine. I have a few “hot spots” in my liver, and one in my spine. This was a pretty serious diagnosis for a 26 year old.
As I wrote in my “About” section, I had been diagnosed with ocular melanoma in December 2006, but within about a year I was free of melanoma and went back to living my life. At that time my doctor had told me that my chances of getting liver cancer in the next ten years were 50:50. I looked at this fact as the sort of thing I would deal with when it came to it if I had to, so I never researched what it would mean if I came out on the wrong side of that fence.
All that changed when my oncologist told me in August that I was indeed on the more unfortunate side of that equation.
My tips for dealing with a diagnosis like this:
1. Do not look up your diagnosis online blindly, only do so when you have already been given some valid and appropriate information from your doctor. I made this mistake. Looking up “metastatic malignant melanoma” and “liver” throws up a myriad of horrific web pages where they tell you have three to six months to live. I was terrified. One website stated, “Don’t worry, you don’t have to go home and die like your doctor told you.” These are not the types of things you need to be hearing when you have just been given a shocking diagnosis. This is also not the sort of thing your friends (who may not know any better) need to be reading, so tell them not to. Much of what is online is outdated and the developments in melanoma treatment options within the past ten years have proven to be very exciting. I would only advise beginning to look online once you know more about your treatment options and only after your doctor has fully explained your diagnosis, options, and prognosis. Only then will you have enough knowledge to know which sites are reputable and which you should not take any notice.
2. Make a decision from the start to stay positive. When it seemed that my doctors were not happy with the results of my yearly scans in August this year, I got some excellent advice from my brother. He said to me, “You know Aoife, you’re going to have to make a decision now to stay positive. These results may not be good, you may be facing some difficult times ahead, and you may even have to get some treatment. The thing you need to do now is focus on staying positive. That’s the most important thing.” I cannot stress this point more. I believe that staying positive is a decision. It’s the decision that says, “I’m not going to feel sorry for myself, I’m going to fight this thing, and I’m going to stay positive as much as I can while I do it.” The power of positivity is great, and once you make this decision, it is possible to keep on being positive throughout. There is no point in feeling sorry for yourself – it’s not going to get you anywhere. You cannot change anything at this point, so you may as well get through it with a smile on your face and a happy thought in your head.
3. Make a plan. You might have to take some time off work while you have your treatment, and you may be spending a lot more time at home than you would normally. Try to make a positive plan out of this time, and think of the things that you dreamily envisaged doing when you were writing that difficult report, or that time you were stuck on the bus wishing you could be somewhere else. Take this time to plan a few things that perhaps you didn’t have the time to do before. Yes you may be quite ill, but right now you have the opportunity to do some of those things you always wished you had the time to do. Start practicing the guitar, get out for that walk, join the gym. Even if you may not be able to do these things the whole time, being able to say to your friends, “No it’s quite good actually, because I’m going to have the time to finally learn to bake,” can be very empowering. This is your time to look after yourself – to do what you want to do, to see family and friends when perhaps you were too busy before, or to learn something new. Try to recognize that silver lining.
And so I made my decision to be positive. I got excited about finally getting back to piano and guitar. I had just passed my driving test but was still a pretty nervous driver, so I decided to work really hard on my driving. My nurse called me up. She answered all my questions and arranged my first treatment appointment. She told me that she knew I was a cheery person who didn’t seem to let things get me down, but she wondered if I really was okay. I assured her that for the moment, I was fine, I had a brilliant support network of friends and family, and I was dealing with it well.
She said, “Okay, this is it! Are you ready?” I was.
I started IPI, or Ipilimumab (Yervoy) on the 5th November and I have now had three treatments. I had hoped I would begin this blog by saying how well I am doing on the drug, but unfortunately I am writing it from a hospital bed. However, I believe this to be a good thing.
More to come in a few days…
As a footnote, I want to draw the attention of anyone who is interested to three of my favourite melanoma bloggers who inspired me to write this blog:
Battling Against Melanoma 