Cancer does not always look bald & pale & sick.
In Dylan’s case once I had realised what the huge swelling protruding from the side of his face was it did not take long for him to look exactly that; bald, pale & very sick.
It took a good three weeks before his hair started to fall out. He had always had long dark silky hair (apart from when he took the scissors to it himself & cut his fringe so short there was no alternative other than to give him a very short haircut) & I used to spend hours lying on the sofa with him just running my fingers through it; we both found it so relaxing.
Apart from the obvious & continuing shock of Dylan being diagnosed with cancer one of the many things I quickly had to get my head around was his hair falling out. It had always been a massive visual part of his identity, wherever I took him everyone always commented on how beautiful it was; the summer before he was diagnosed we were in a shop & the man at the counter said to me “Wow! What amazing hair he’s got…make sure you never cut it”.
Fortunately having just turned six, I think Dylan was too young to grasp the concept of how the visual image of a bald cancer sufferer impacts other people; let alone the cancer sufferer themself.
On day one of being admitted we read Dylan two books that we were given to us by the hospital. One was called “Tom Has Lymphoma” & the other was called “Joe Has Leukaemia”. They were both written for children & have simple hand drawn illustrations of various processes like scans & Hickman lines & they both described in simple terms what Dylan was about to embark on.
When Dylan was first admitted it was so difficult to grasp the magnitude of what was about to come. That same day I remember him skipping down the long corridor with us as we went to get a coffee. His hair was swishing about & he just looked so well despite the fact he had a swollen cheek & was attached to a drip that we precariously wheeled about trying to keep up with him. That was the last time for a long time he skipped anywhere properly. Within a matter of days he was pale grey in colour, vomiting, incapable of eating & looked anything but the picture of health. I was unsure if he had noticed any of the other children on the ward; the majority of whom were bald or had wispy heads because they were in the throes of losing their hair.
When I got to the the part in the books that talked about hair falling out Dylan said “but that won’t happen to me mummy”, & so I had to explain that it would because he was now “a bit like the boy in the book”. He did not have time to get upset because I immediately suggested that we went online & chose lots of hats for him to wear because the boy in the book had a beanie hat & a baseball cap. The next morning I cut his hair but not too short because he was adamant that he kept his long fringe.
As the days & weeks went on his hair was everywhere; his pillows, the sofa, the stairs, my clothes, his clothes & so he agreed to a much shorter haircut. I did suggest I shave his head but quite understandably he was having none of it. My eldest son & his entire rugby squad all shaved their heads for charity & to help Dylan feel like he was not the odd one out. I did the same thing on World Cancer Day in February 2017; Dylan loved it & immediately felt more comfortable with his hair loss. Dylan & I agreed we would have a race to see whose hair would grow back the quickest; little did he know that I continued to shave my head every fortnight in order for him to eventually win that race.
When we went out he would sometimes wear a hat & sometimes he would choose not to. When he did not wear one people’s reactions varied from staring pitifully to ignoring it completely & just interacting with him as normal (my favourite).
The thing is that once you know what cancer is, once you know what cancer does & once you know & understand what is required to treat cancer so that it hopefully goes away, then there is no escaping the fact that looking at someone who is clearly suffering from cancer is extremely hard. Seeing a child & being able to visually identify that they must have cancer due to their appearance is beyond heartbreaking.
Dylan has just completed one year of maintenance. It has not been easy because he is still very ill but visually the difference a year makes is incredible. His hair has grown back thick & long, his skin has a healthy glow & he is skipping everywhere again.
He does not “look” like he has cancer & people’s shock now when they learn this for the first time is almost more intense & intertwined with disbelief than it was a year or so ago.
A lot of people live by the rule “never look back” but for me it is essential in order to be able to actually “see” his progress.
Looking at pictures before his diagnosis is what I really struggle with.
Before Dylan was diagnosed I used to say “I wonder what he’ll look like when he’s a teenager”.
I have looked at my beautiful little boy every single day since he was born. Since his diagnosis I have looked at him every single day & every single day my heart breaks because despite Dylan’s now seemingly “healthy” appearance I have absolutely no idea whether or not he will actually ever be a teenager.
Never judge a book by its cover; you never know what that cover holds.