For lots of people, worrying about side effects can have a big impact when you’ve had a cancer diagnosis. Ellie was diagnosed with kidney cancer in 2015. As part of the Digital Storytelling Project, Ellie has shared her experiences as a poem. Ellie talks about her experience getting diagnosed, and her worry around hair loss.
Like Ellie, lots of members here on the Community share how they’re feeling about diagnosis, side effects and hair loss. If you’ve been diagnosed with kidney cancer, you might find support and comfort in our “Kidney cancer” forum. This is a safe place to find support and talk to other people affected by cancer.
Ellie has shared her story as a video. Ellie describes her video below:
“My kidney cancer journey – about trusting my instincts; the good times, bad times, happy times and sad times and life going on in between, because life does go on, I am still myself.”
Watch Ellie’s video:
You can also read Ellie’s poem in full:
Ellie's journey, July, 2015 and still ongoing
Cancer is here. Oh, dear. Oh, dear.
Will I lose my hair? Should I really care?
The reason I care if I lose my hair
is people won't see the real me.
Doctor for three year, menopause they fear.
Something isn't right, should I put up a fight?
Go to donate blood, iron levels low.
Off to the doctor, here I go.
Different doctor for a change,
blood test, ultrasound, oh how strange!
CT scan also done, MRI on Christmas Eve.
January follows, cancer we believe.
No back pain, no lump, no symptom or sign.
I look good, I feel great. In fact, I'm just fine.
Kidney out, tumour too.
Morphine, pain-free. Woohoo-hoo!
Kidney cancer confirmed, the biopsy said so.
What do I do now? I really don't know.
Tests and scans coming back all clear,
carried on for over a year.
Scan in July, news not so good.
Cancer is back, changing moods.
It spread to my lungs. Well, that's not good.
Maybe that's why there's been a change in mood.
Treatment beckons, chemo we reckon.
Will I lose my hair? Should I care?
Chemo ruled out, it's really not fair.
But will I still lose my hair?
Treatment begins, hair grows in white.
I've dyed it pink, oh what a sight!
Underactive thyroid, high blood pressure too.
Another side effect, was running to the loo.
Hair's been multicoloured and also purple, too.
I wonder what will be next? I'll try red and blue.
Three years have passed, treatment stopped working.
Now my heart is really hurting.
Starting a new treatment, here I go.
Just need to go with the flow.
White hair gone, it's brown I see.
I've dyed it blonde, back to being me.
Still the same side effects on this treatment, too.
But thankfully, no more trips to the loo.
Still on treatment, hair didn't fall out.
Such a silly thing to worry about.
Five and a half years have passed, I'm really not that vain,
but the thought of losing my hair caused me so much pain.
Having cancer scared me so bad,
but I'm still here. And for that, I'm glad.
If you’re struggling with hair loss, you’re not alone. There’s lots of support available at Macmillan and on the Community.
Macmillan’s website has support around hair loss. This includes practical help, help with finding wigs and emotional support.
Look Good Feel Better are a cancer support charity. They run wellbeing workshops and classes for people affected by cancer, all around helping you feel better.
Lots of people also talk about hair loss here on the Online Community.
“I am dreading going bald and don’t know how I will cope, but I know so many of you have been here already. I stupidly feel embarrassed about my hair loss even though it’s no fault of my own; and I know the hair loss is only the chemo hopefully doing it’s job this time.”
Online Community member, “Living with incurable cancer – patients only” group
Talking about how you feel can really help. Do you think you might find support from meeting other people at workshops all around creating your own video to share your story? Macmillan’s Digital Storytelling workshops help you to share your experiences. If you’d like to get involved, you can find out more about it on Macmillan’s webpage about the Digital Storytelling project.
The Online Community is also here as a safe place to talk and meet other people who might be going through a similar experience. If you are also affected by kidney cancer, why not join our “Kidney cancer” group?
“Feel free to ask if there's anything else you think of, it's what this group is good at.”
Online Community member, “Kidney cancer” group
If you also find comfort from writing poetry or creative writing like Ellie, the Online Community would love to see what you’ve written. Our “Express yourself” group is a place where members share art, photography and creative writing. Members in this group and across the Online Community use creativity as a way to cope with their experiences or for fun.
We’d like to thank Ellie for sharing her poem and video with the Online Community. You’re not alone if you’re struggling with hair loss, symptoms of kidney cancer or dealing with any other side effects of a cancer diagnosis. Let Ellie know how her poem made you feel in the comments below. Why not let Ellie know what helped you to cope with hair loss?
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