Appetite loss ended in horror diagnosis – what I want for other patients now it’s over | UK | News

I’m adding my voice to the Daily Express’ Cancer Care campaign because while I benefited from mental health support myself, my family found it independently rather than through my medical team. My symptoms started nine years ago with frequent illnesses and loss of appetite. At a GP appointment I was prescribed antidepressants for stress and was also referred to Whipps Cross University Hospital in Walthamstow for a CT scan, but I never made an appointment.

As my condition worsened my family sought a second opinion from our local hospital in Chelmsford. At this stage I could barely walk and my behavior had changed; This meant I was struggling to care for my daughter Rose, who was three at the time. A CT scan in Chelmsford revealed a mass in my brain and I was transferred by ambulance to Queen’s Hospital in Romford.

I was taken into emergency surgery to remove the mass. The biopsy confirmed what type of brain tumor I had and I was told I needed further surgery (awake craniotomy).

When my symptoms started I thought it was nothing. I was changing jobs and moving house, so it seemed logical that I would be stressed or depressed.

But as time went on, it became clear that something else was wrong. The tablets weren’t working and I was getting sick so often that I couldn’t convince myself not to worry anymore. But I never once thought it might be a brain tumor.

No one told me what type of tumor it was until I was discharged. I think this makes perfect sense because finding out I had cancer would send me into free fall.

My dad told me not to worry and that they would take me to my 40th birthday. But of course I wanted more than that; To be with my family in the years to come.

After my surgery, I temporarily lost feeling on the right side of my body, which affected my ability to walk. This was a problem for me as a pianist, teacher and mother.

I’m pretty independent and had a really hard time staying still while I was in hospital. I was moving around trying to get up and move again, but I was told to go back to bed, but I couldn’t wait to get out of there.

I couldn’t take care of my little girl, so my husband Steve and my family took over. I was lucky to have their help and I was grateful for it, but I felt like I was losing him because it was no longer my responsibility to care for him.

I don’t think Rose really understood what was going on, which made it difficult for all of us.

I underwent chemotherapy and radiotherapy, and with physical therapy and other treatments, I regained use of the right side of my body.

I received counselling, support and advice from my local care home.

Meanwhile, my family contacted the Brain Tumor Charity for information and guidance, particularly through the charity’s private Facebook groups, which provide the opportunity to connect with others affected by a brain tumor diagnosis.

We are a close family, so I think my siblings and my family have a really hard time understanding what I’m going through. They wanted to help in any way they could, evaluate my options, and think more positively about everything.

The Brain Tumor Charity really helped them with all of this.

I have regular MRI scans to monitor for signs of regrowth but thankfully my condition is stable now. In the years since my diagnosis, I have taken part in the London Marathon and other challenges to raise more than £20,000 for the Brain Tumor Charity and have also become one of their advocates, a “participation champion”.

If I can do something to help other people affected by a brain tumor diagnosis, I will do it.

As a mother and teacher, I am truly touched by the stories of children being diagnosed with brain tumors, so I want to do my part to help others of all ages in the future.

The brain is such an important part of what makes us who we are that brain tumors are a uniquely cruel form of cancer that can steal so much from a person.

My tumor is still there and will continue to be there, but I won’t let it stop me from wearing my sneakers and doing something worthwhile.

Part of the Daily Express campaign calls for a holistic needs assessment of all cancer patients, and I am one of the patients who has undertaken this assessment. But my memory of this is a bit hazy. I couldn’t write my answers, so it was argumentative.

I remember talking about my physical needs more than anything else. I also had two specialist clinical nurses; I can still look for one of these today.

When I was first diagnosed, I just wanted it to go away. I wandered around the garden and asked my wife, “Why me?” I remember asking. But then I thought, why nobody?

A brain tumor affects everything: how you move, how you talk, how you think, how you eat, how you brush your teeth, etc. I believe this has greatly affected my mental health.

In some ways it’s been a positive thing, but mostly I find myself bursting into tears at the slightest thing. Therapy or counseling is definitely something that should be offered.

My hospital didn’t refer me anywhere, but I guess my parents did all the research before they could.

My parents supported a local hospice called The J’s, so they accepted me right away. I think they may have also referred me to Farleigh Hospice. There were two lovely ladies helping me at this stage.

One suggested music therapy to my daughter, and the other suggested couples therapy to my wife and me. We’ve covered both.

Things have been going well ever since. We had a miraculous baby in October 2021, it was amazing.

I am so grateful that I remained well enough to complete our family.