Today we are back with the 13th volume of our longest running Community News Blog series ‘Cancer & me 35 years on’. Willo was diagnosed with Anal cancer in 1986 while living in Zambia. In this blog series Willo has been sharing her experience of living through and beyond cancer. Alongside sharing everything she has been through, Willo has also been sharing the amazing artwork she created during this time in her life.
So far, Willo has covered her experience of moving back to England for treatment, her Abdominoperineal Resection, going back to art school post-surgery and the amazing friends and family that helped her through.
In today's blog, Willo talks about a very important, and often very difficult time in anyone’s cancer experience, waiting for results. We are back with Willo today after her bladder surgery at a time when she is attending multiple hospital appointments to try to find out what is causing her pain.
“The young surgeon who performed the surgery came to see me and said she got more than she bargained for. As, when she made the incision just below the bladder, a pocketful of pus erupted. She said that I must feel pounds lighter!
She also said there wasn’t much wrong with my bladder, so they cleaned me up and made a couple of stitches. I asked what caused the pus and she replied, “just one of those things,” which to me didn’t seem a very satisfactory answer, but what would I know?
“There wasn’t much wrong with my bladder, so they cleaned me up and made a couple of stiches”
Some weeks later I started to get a terrible pain in the lower part of my pelvis when I moved my left leg. I thought I had pulled a muscle or ligament or something, and was expecting it to ease off.
I attended St Mary's hospital for a check-up and another smear (often now referred to as a cervical screening test) and, by this time, I couldn’t lift my left leg. The doctor had to help me onto the couch, clearly not questioning my immobility.
“By this time, I couldn’t lift my left leg and the doctor had to help me onto the couch.”
The result of the smear wasn’t good, showing a change in the cells and they sent me a further appointment. There I was told that I would need a Colposcopy (a procedure to look at your cervix, the lower part of your womb and the top of your vagina) and they would send me yet another appointment.
The pain in my left leg and pelvis got worse and I developed lower back pain also, so went to see my GP. He thought the pain in my leg and pelvis was probably caused by whatever was causing the pain in my back. As I was due back at St Mary’s, he suggested I ask them if they would x-ray my spine.
“The pain in my left leg and pelvis got worse and I developed lower back pain also, so went to see my GP.”
I went for the colposcopy and once more the doctor had to lift my left leg onto the couch. I was surprised that alarm bells didn’t ring with her. The images from the colposcopy showed abnormalities, but a biopsy would be needed before the treatment could be decided upon.
“The images from the colposcopy showed abnormalities, but a biopsy would be needed before the treatment could be decided upon.”
By now I had been going back and forth to St Mary’s for much of the year, but I had only seen my professor at the first appointment.
During subsequent visits I had seen members of his team, and it was to them I had been complaining about my leg, to no avail. Nothing showed up on the x-ray, but as far as I was concerned, they had X-rayed the wrong area anyway.
“By now I had been going back and forth to St Mary’s for much of the year”
I read several health-related books and thought I must have some sort of osteoarthritis or osteoporosis or whatever. The books said you should take regular exercise. I was spending weekends with Paul, so we would go, as best as I could, for walks in the Lancashire, Lake District and Yorkshire countryside – dragging my left leg behind me!
“I was spending weekends with Paul, so we would go, as best as I could, for walks in the Lancashire, Lake District and Yorkshire countryside – dragging my left leg behind me.”
Finally, I had to admit I had a serious problem, so phoned Christies and asked if I could have an appointment back there. Mr. S’s secretary (Mr. S was my surgeon at Christies) asked if I was still attending St Mary’s hospital when I confirmed I was, she said I was to wait until I had finished that treatment, as they didn’t like patients visiting two hospitals at the same time. That avenue was closed.
“Finally, I had to admit I had a serious problem.”
We want to thank Willo for sharing her experiences and artwork with us today. We will be posting more of Willo’s writing here on the Community News Blog soon in the next volume of our series: ‘Cancer & me 35 years on’. In today's blog, Willo discusses her experience of undergoing several tests to try to find out why she was experiencing pain.
Waiting to find out any information about your health can be really difficult. Many of our members turn to the Community to talk about the anxiety and worry that waiting for tests and results can understandably bring.
We wanted to end our blog today with some support on how to cope when waiting for results, or any information about your health.
Everyone is different, and how we cope with worry and anxiety will be as unique as we are. The most important thing is finding the support that works best for you. It's also important to make sure you let someone know if you need help coping with your anxiety.
Below is some support from our Community members about how they coped when waiting for results.
One member writes in their blog about how they wrote the date they were expecting to hear from the hospital by in their calendar:
“It was going to be hard waiting 4 weeks for the results of the Hysteroscopy. I made a note on my calendar to expect a call by 17th November and tried to forget about it.” Sillyoldlady, Cancer blogs
The below members of the breast cancer forum wrote about what they did to try to cope when waiting for results:
“In many ways, the uncertainty of where you’re at is one of the hardest things! Yoga and walks in the woods helped me a great deal” Curlew74, Breast cancer forum
“This waiting for results is nerve racking alright. I find that reading a good book and listening to some good music helps me to relax.” Daisy53, Breast cancer forum
“The waiting is awful but please try and avoid Dr Google. From personal experience it is tempting, but it's so wrong as cancer diagnosis and treatment is so bespoke and personal. My distraction techniques include work, walking and reading trashy novels. Hope you find something to occupy you until you have the results and a plan.” Irishgirl16, Breast cancer forum
One of our Cancer Information Nurses, Bill, had this advice when responding to a member who was having a difficult time waiting for their endoscopy results in our ‘Ask a nurse’ session.
“It may help to focus on the fact that you’ve reported your symptoms and that your doctors will get you the quickest and most appropriate help that they can.
Far from “giving up” you’ve actually faced this problem head on. It’s only natural that you feel anxious while waiting for results. It’s important to remember that cancers don’t grow significantly over weeks or even a few months, so getting a proper assessment done is essential.”
Remember, your mental health is just as important as your physical health. If you are finding it hard to cope with your anxiety, it’s important to speak to your GP. The Community is also here to support you. You can post on the site for peer support 24/7 to share how you are feeling with others. I want to finish today with a quote from one of our Community Champions, 1in1500.
“Let the thoughts out about your fears, don’t bottle them up. Always come on here for support, we all empathise with how you’re feeling.”1in1500, Anal cancer forum.
If you want to read more about Willo experience, why not take a look through the rest of the series so far:
Vol 1 - ‘To begin at the beginning’
Vol 2 – ‘Best friends forever’
Vol 3 – ‘The journey home’
Vol 4 – ‘Brachytherapy’
Vol 5 – ‘Jolly hockey sticks!’
Vol 6 – ‘The Abdominoperineal resection with colostomy’
Vol 7 – ‘The recovery’
Vol 8 – Lanzarote & Menorca
Vol 9 – ‘The interview’ – International women’s day
Vol 10 – ‘A chance encounter’
Vol 11 – ‘Good news, bad news’
Vol 12 – ‘Hong Kong and Back to reality’
