I'm officially 8 months into my Clinical Trial and as you may have read recently things have been going well. The Race for Life was a fantastic experience, it felt so overwhelmingly good to feel well enough to take on a challenge. My last scan showed I am 6 months clear and everything seems to be heading in the right direction.
I recently found this brainstorm on Instagram, which really helps me to put certain things into perspective, it helps me to make myself a priority. Self care is so important, as is knowing where to take control for the good. It helps to keep me focused and establish a balance with everything thats happening right now.
Acceptance...
I believe that one of the only ways to move forward from a diagnosis, trauma or life threatening event is to accept what has happened and look ahead. Denial is not an option, you need to slowly come to terms with your situation, this will allow you to adjust to your new environment and allow yourself and others to create ways to make you feel better again. Acceptance won't happen overnight, it could take days, weeks, months or even years, but I have learnt that when it does you'll know you can move forward and that is a relief in itself.
Focus on progress...
I find it quite hard to cope with the trial side effects when they start to dictate my life, I am over 6 months clear but because of my participation in the trial drug there are days where I feel weak and defeated, when really I am not. Emotionally I find evenings the hardest where the fatigue and discomfort, alongside wanting to work, socialise and actually get on with my life all get to too much. Its at this point I have to take a step back and look at how far I've come. I have to remember that the drug I am taking is working, I am being monitored and looked after in all respects, from the hospital to work and by my boyfriend, friends and family.
Slowing down...
I also have to accept I simply can't do everything and right now I need to slow down, take it easy and stay positive.
Patience...
My physical appearance to many hasn't changed much, but because my trial treatment is classed as a form of chemotherapy teamed with biological therapy, I am experiencing side effects similar to those on a full chemo based treatment. My hairstyle has got shorter to cope with hair loss and make-up makes it easy to hide that my eyebrows have almost disappeared and my skin tone has changed colour, my weight has now stablised, as at one point it went far too low. On face value, 8 months in, I look well because I make the effort to look it, but without this effort I look and often feel like a different person, its very draining and some days because I no longer have Melanoma but the trial tablets cause side effects that cause me to look and feel a lot worse than I should. Somedays I just want to stop taking the tablets and go back to how I looked and felt before; Unfortunately I know this is not an option, I must be patient and keep going to prevent any future re-occurrence. I am in such a fortunate position to be receiving this treatment.
Rest...
I have learned that listening to your body is really important to keep on top and in control during treatment. If you are tired, rest, if you are anxious or find yourself becoming increasingly restless find something to take your mind off things. Light exercise or an activity that your body and mind can cope with can be really beneficial, writing this blog really helps me to realise how far I've come, especially on down days. Reading posts from points in my life that were unsure or unwell grant me a sense of acheivement and make me want to keep going; writing for me is therapeutic. I often write reflectively as some days the way I write is very emotional or sometime angry, at times I need to vent.
Time...
If there is one thing that I can reassure someone in my situation or during a similar time where you have to face uncertainty, it woud be that time heals, with time you feel stronger and if you take care of yourself and your body, time will help heal the mind. Give yourself time to reflect, accept and grow. Focus on the good, because the good will get your through, but try to not look too far ahead, focus on the present as that is what counts.
Support...
In a time of need you need to feel supported to help you adjust to your situation. Surround yourself with people you love and those who love you and forget those who don't. Not everyone will know what to say or how to help you, they may not understand what you are going through but their kind gestures and words will make a lonely or painful time feel that bit more comforted. Support can come in all shapes and sizes and at all sorts of times. To many people who are 8 months into diagnosis and treatment some will think you are feeling back to normal, and for most of the time you want to be treated like normal and not like the girl who had cancer. The people closest to you will know how to support you if you let them, don't shut people out and dont pretend you're ok if you aren't, that will make you feel lonely. Another important form of support is through a mentor or councellor, this can be through Macmillian or other cancer related support groups, many services are free and are a great way to talk to someone, to help express or understand how you are feeling. You are not going to be judged, considered crazy or frowned upon if you choose to visit a professional, they are very kind people who are there to help and if you choose to let them, you'll find it a great release to talk to someone about your situation in a confidential environment.
Community...
Regardless of whether you like it or not, the day you were diagnosed or you experienced something life changing, you automatically entered a community of people who are going through something similar. You may not have met them yet, but there will always be someone out there experiencing something similar to you, you are not alone. Find out where you can meet people who understand your experiences, there are endless resources are campaigns, people trying to create awareness and raise money for those who need it. The community that surrounds you might not be one you would have originally chose to join or be associated with; I know that at 27 years old, given the choice, the last thing I wanted to be associated with was Cancer, but now I am and I can relate to it I want to help others in my situation. I want to help young people to get through what I have had to get through and to do it with confidence and dignity.
If you take just a handful of these words and be mindful of them, remember them during a tough time, I do believe it could help.