Supporting the

Neuroendocrine Cancer Community

Story by: Lisa
Neuroendocrine cancer site: Lung
Hospital: The Christie, Manchester

 

My name is Lisa Webb, and I am a 50-year-old mother of two.   

Diagnosed in Dec 2021 with Atypical Lung NET, I underwent surgery to remove my entire left lung in March 2022.  I work in the NHS Child & Adolescent Mental Health Service (CAMHS) as a child psychotherapist and was unable to work for a period of 8 months, leading up to surgery and recovering afterwards. This was a very difficult period, full of anxiety and uncertainty as I was still unsure if my cancer had been eradicated.   

Unfortunately, examination of the tumour once removed, evidenced that it was Atypical in nature, and had already spread to lymph nodes.  

Due to educating myself through Neuroendocrine Cancer UK’s resources, I was aware that this diagnosis would require a different type of monitoring. However my original hospital was not offering this, despite being a Centre of Excellence.  I sought out Professor Was Mansoor, at The Christie NHS Foundation Trust in Manchester, who is a NET specialist, with a particular focus on Lung NETs.  I transferred to his care and received a Gallium-68 scan (a particular type of scan that is used in diagnostics) which indicated further lymph node spread and my treatment and surveillance plan was adjusted accordingly. As of Nov 2023, I am on an active surveillance plan which includes 3 monthly scans and meetings with my care team.   

The relief that I felt knowing that I was now receiving the correct, specialist care, allowed me to focus more on my recovery and trying to pick my life back up again. I was told by many of the doctors I had come into contact with that I could live a perfectly normal life with one lung and that was my focus, getting to that ‘normal life’ again. This hasn’t been easy however, and life has been full of ups and downs since my surgery.   

The first year was very tough as I battled to recover from the physical wounds.  I would not have gotten through it had it not been for my family and friends who were so supportive.  

Learning to cope with limited lung capacity, a slower pace of life, and navigate the worries of Covid was difficult, and I was itching to get my old life back again. I returned to work slowly and was very well supported by my colleagues.   

‘Getting back to normal’ was just not happening though, despite my best efforts and it took some time for me to accept that life was not going to go back to how it was.  Honestly, I found this devastating and really struggled with how limited I felt.  My physical scars continued to heal but the mental and emotional toll exacted was much harder to cope with.   

Life was simply just not the same.   

I have not been able to achieve a ‘perfectly normal life’. I can become winded very quickly when doing small things, things that I could have done without thinking before.  I find myself struggling when out walking my dogs, or when walking up a hill,  I cough a lot, I worry about Covid still, and I am fatigued quite often and usually without warning.  I find it difficult to stand for long periods, I struggle with exercise, yet know how much I need it.   

All these things have impacted my emotional well-being and anxiety and low mood have become a feature of post-surgery life.  Whilst my family continued to be fantastic in supporting me, I just kept thinking I was so far off being ‘normal’ again and that my life was forever changed.   

Time is a great healer however and slowly life has started to form into something I can recognise.  I am currently trying to come to terms with the changes and not strive to reclaim my old life, but this is tough!

I am getting better at knowing what is important to give energy to and when to slow down and rest, but I am always fighting with my mind that wants to race ahead.  I have found a form of exercise that suits my capacity now.  I have also found alternative dog walking routes that challenge me enough but don’t leave me feeling winded and disillusioned. I have learnt to rely on the help that is always on offer from others, especially on days where my anxiety is high.   

I turn 50 in a few weeks and in years gone by, I imagined I would celebrate this milestone with a big party with family and friends and a trip away.  But this is not possible now as I am battling fatigue and need to prioritise maintaining energy for everyday demands.   

I have found a meaningful way to celebrate with those closest to me.  I am able to see progress in my life now and try to remain focused on this.  It is not at a pace I would like it to be, but it is progress, nonetheless.   

What I have found is that life at a slower pace brings a whole new way of seeing the world.  I now stop and smell the roses; I breathe in the morning air in a more meaningful way.  I celebrate each season with gratitude.  Whilst my life has been turned upside down by NET’s, the view sometimes ‘aint half bad when you learn to look at it in a different way! 

 

Lisa Webb – November 2023