I had to learn to be my own advocate when I had breast cancer

Breast cancer wasn’t my first encounter with a serious illness 

In 2003, I noticed some changes in myself that gave me cause to visit my doctor.

For about a month or so, I had felt lethargic, didn't want to get up in the morning, and was much more tired than usual. Something didn't feel right. Thankfully, my doctor was very supportive, telling me: "I always listen to my women patients - they know their bodies."

He sent me off for an immediate mammogram, which revealed that I had cancer. As this had been caught early at stage 1, I would only need a lumpectomy and radiotherapy - no chemotherapy. It was caught so early, in fact, that it had initially been quite hard to find.

At the age of 15, I had been told I had Polio and would never walk again. But after a year in hospital and the work of a brilliant surgeon, I walked out. I was convinced I could 'get over' cancer in the same way.   

Unfortunately, I learned this time around that I had to use my initiative to ensure I was getting the best care. 

I relied on alternative forms of support 

Instead of doctors discussing my case around my bed and involving me, there was a MDT (multi-disciplinary team) discussing me in another room. I wasn’t present for this, which made it more difficult to suggest what I thought would be best for me. 

It was suggested that I brought someone with me to appointments, which I suspected was because the doctors wanted me to have someone else to remember what they said. Personally, I did not want to bring any friends along with me to appointments, so I turned up alone. I preferred to go over things with the doctor, taking more time until something was clear. And although I was supposed to have a clinical nurse specialist, I never had one. 

Cancer support centres such as The Haven, Macmillan and Maggies were incredibly helpful, as was Breast Cancer Now's Helpline. I relished their practical tips and support, asking questions about what worried me, rather than depending on the 10-minute check-up that often felt rushed. 

During radiotherapy, I was under the care of someone the nurses called 'Doctor 30-second', whose bedside manner was appalling - but he was known to be one of the best in the field, so I managed without TLC. 

I found help in unlikely places

Overall, I found the best support came from the hospital chaplain, Revd. David Brown. He had been a senior chaplain for over 20 years.  

We all need a 'go-to' person to bounce questions off, and David was that for me. Because chaplains work in hospitals, they understand how they work and where is best to turn to for support. His help with navigating the complex treatment path was invaluable.  

Hospital chaplains can be any faith - they support anyone, even atheists. When you need someone to talk things over and don't understand treatment, they can be incredibly helpful, and I always found that David was a good listener. Funnily enough, David and I never had a 'religious' conversation, but I could phone him and ask something like, 'What is haematology?' or any other unfamiliar medical word, and he would explain it to me.

Of course, not everyone will have as helpful a hospital chaplain, but it goes to show that looking to others who have experience can be very helpful.

The long-term effects of treatment aren’t always discussed 

When first diagnosed, I imagined a few months of ill-health, then gradually getting back to 'normal'. But, years later, I am still dealing with the after-effects of my treatment, and I continue campaigning for long-term survivors who are like me.  

At the time, my experiences with side effects were supposedly out-of-the-ordinary. I kept on being told, "We've ever seen this before", or, "only 1-in-a-million have reported this side effect". Well, someone has to be the 1-in-a-million, and when I started writing my blog I was getting comments from all over the world (156 countries in total), saying they had experienced the same things.

Today, doctors are more inclined to react quickly to reported side effects. During COVID-19 vaccinations, it was interesting to see how quick the reaction was to possible side effects. 

Advocate for yourself where you can

To others who have diagnosed with breast cancer, I would suggest learning as much as you can about your treatment from trusted sources. 

If you get on with the doctor treating you, stick with them. Ask if you can see them specifically. If you don’t get along with your doctor, you can ask for a second opinion. As my favourite surgeon told me: "Make a fuss - it's better for your health."   

Advocate for yourself, and turn to reliable sources of information if you are not sure about something. And if you feel that you are experiencing side effects, tell someone about them - don't leave them to get worse.