Shirley Ledlie, owner of The Cancer Hub and author of 'Naked in the Wind – chemo, hair loss and deceit' addresses the emotional and physical impact that finishing treatment has on many cancer patients. Shirley also discusses her own experience of permanent hair loss following cancer treatment - an issue that is not often discussed.
The day you finish your treatment for breast cancer, is one of both relief and fear. We all suffer the psychological torment of dreading its return. That never changes. However, there’s a huge relief at the endless days of appointments, check-ups and treatments are finally over. Our emotions are all over the place especially as our cosy security blanket has been dragged away out of our hands.
Suddenly we are alone with our thoughts and the comments of "you can get on with your life now" or "you can get back to normal" are ringing in our ears. Yes, of course we are so happy to finish the vile treatment and not have the constant exhausting trips to our local clinic or hospital, but it does leave us with other fears to deal with.
The different emotional concerns when treatment finishes patients may experience are:
· Worry of cancer returning
· Chemo brain/confusion
· Emotional distress
· Coming to terms with changes in appearance
· The reality of a new normal life
It’s important to seek help and tackle each problem individually, if you need it. You can sink or swim. Speaking from personal experience I found it hard coming to terms with not knowing what triggered my cancer in the first place. How could I prevent it coming back if I didn’t know what had started it? Of course, I would never discover the cause and it took me a long time to accept that.
Help comes in many forms and not everything suits all. Lots of patients like to ‘give something back’ and find helping to raise funds or volunteering becomes their way of setting into life after cancer. I know many seek the emotional help of support groups, online or local.
My Story is a Little Different
In 2005 I was diagnosed with grade/stage 2 IDC progesterone positive cancer and after a lumpectomy and Sentinel Node Biopsy discovered it had spread to one node, but they were sure it was encapsulated. They informed me I would have FEC x 3 and Taxotere x 3 followed by a full course of radiotherapy and five years of Tamoxifen and Femara.
After the first FEC infusion I felt so bad and vomited constantly for three days and for someone that suffers from vomit phobia that’s a big deal! I didn’t think I could go through with any more chemotherapy. But of course, I did. Around three weeks after my first session my hair was coming out in handfuls. I didn’t care because I thought it would be easier to manage all the vomiting without hair hanging down into the toilet. They tried all the different anti-nausea pills, but I brought them all up, heaving just at the sight or smell of them. I’m sure I’m not the only one to experience that. As the last resort, my oncologist gave me anti-nausea suppositories to try. They worked immediately. What a relief that was!
By the time we had the nausea sussed it was time to start Taxotere. My oncologist promised me I wouldn’t have the sickness to contend with. He was right. I was informed that any hair left would come out with this new wonder drug (regime), but not to worry as it would all grow back after my treatment had finished.
This is where my story is different because my hair didn’t grow back. Some hairs made an appearance around the sides and back but not enough to cover my scalp and not much on the top and the front. Six months later and after speaking with Taxotere’s producers, I was told this new look was permanent. My life fell apart.
Shirley experienced permanent hair
loss as a result of her treatment
Seven years later I wrote my memoir Naked in the Wind – chemo, hair loss and deceit hoping it would help others. The release of my book brought an influx of invitations to take part in podcasts, articles, radio and other media interviews.
Moving forward fifteen years
I’m still raising awareness, still campaigning and running my own website including The Cancer Hub which includes interviews with cancer related businesses, inspiring cancer memoirs and survivor stories. I am also about to take over the fifteen-year-old support group’s website which is highly regarded as a good source of information and often mentioned in medical studies, medical journals,
blogs and books. I’m excited to be taking over the helm and will continue
to educate, empower patients and take the website forward to the next fifteen years.
Thank you, CancerPal for inviting me to share my story especially addressing the mental health side of cancer which is so often overlooked.
The lovely Shirley continues to do so much to raise awareness of cancer and mental health and CancerPal are grateful for her valuable contribution. If you've been affected by any of the issues Shirley has raised and would like to find out further information about The Cancer Hub please see details below:
Shirley’s website: www.shirleyledlie.com
Support group website: www.aheadofourtime.org
Naked in the Wind: Chemo, Hair loss and Deceit: http://smarturl.it/NITW
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