Today I woke early and headed out to get the bus into Chelsea. I’d had a somewhat sleepless night anxiously running through all the things I needed to say this morning. As the bus slowly made it’s way down the Kings Road I will still mentally making notes. This time though the notes and things to remember weren’t for my own ‘consultant Q&A session’. I was meeting up with a lady that I’d ‘met online’ a few weeks ago. She posted on a forum a question about Phyllodes and had concerns there was nothing out there nor anyone else diagnosed. Her comment appeared in the many different internet search mechanisms I have set up and we became acquainted. Over the past few weeks we have corresponded by email regularly and I have been able to introduce her to the ‘Phyllodes Support Group’ on Facebook.
Like so many of us diagnosed with Phyllodes, we can’t find information or resources easily accessible. If you go on to many cancer sites or into information centres there is never (or very rarely) any mention of it. Just in that moment, it can feel even more frightening and isolating than ever.
Today was a consultant appointment that I had encouraged. The lady had many questions and her own hospital didn’t seem to know or understand Phyllodes. Therefore a consultation at the Royal Marsden with sarcoma specialists we hoped would help her get answers. The lady had been up tremendously early to make the journey to London and we met (with her adult daughter) in a coffee shop around the corner. Because of delayed trains we only had about 30 minutes. But enough time to walk and talk on our way to the hospital, run through the questions she’d got written down and importantly, I believe, enough time for her to meet me and know that we do survive Phyllodes!
I left them at the hospital as they were called in for the appointment, we hugged and I wished them luck. The lady then handed me a card.
The sun was shining so I decided that, for once, I really did have enough time to walk home and set off along the Fulham Road and to the river pathway. Just past Battersea I found a bench sheltered from the now very hot sunshine and stopped for a minute. My phone blipped with a text from the lady letting me know they’d just left the hospital and would email fully later. I, of course, (and you’d expect nothing less) suggested that she and her daughter enjoy the sunshine somewhere fabulous for lunch with a glass of bubbles… !!!
I then opened the card. The front was a picture of a baby elephant. Inside the words:
“They say that ‘Elephants never forget’… well neither will I Anna! I will never forget all the support you have given me this last month – giving me links and pointing me in the right direction.
It’s official…. “You are a Star AnnaGoAnna!”
There might have been a tear that snuck out and rolled down my cheek… or it could have just been the sun getting in my eyes!
I walked home wondering what it would have been like had there been a ‘Me’ around when I was diagnosed.