'I lost a lung but feel better than I have for years'

Kate had a rare neuroendocrine tumour in her lung diagnosed in December 2015, and after surgery in February use #walk1000miles to help give her recovery a focus.


How old are you, what do you do and where are you from?

I'm a 41 year old from Horsforth in Leeds with a 10 year old called Maisie and a 6 year old called Jake...oh and a husband called Col and 13 month old black lab called Oscar. I work part-time as a primary school teacher and will be teaching reception next year.

How did you come to be diagnosed with your tumour?

In 2012 I went to the doctors as I had a wheeze. I was referred for a chest x-ray which was clear and to Ear Nose and Throat which didn't show anything. The wheeze continued, was accompanied by a cough when I did strenuous exercise (I did the Great North Run, Redcar Half Marathon (both 2012), Yorkshire Marathon (2014) and Leeds Half Marathon (May 2015) but running was becoming more difficult, I was a little breathless and I was coughing more. I also started coughing up a little blood every now and again (sorry...probably too much info) so I went back to the doctors in September 2015. I hadn't really been between as my symptoms came and went and were niggles but not continuous.

I had another x-ray which was clear but my doctor referred me as she wanted to rule everything out. I was seen in November 2015, I think and had a CT scan which showed what they thought to be a carcinoid tumour in my left lung (a rare Neuroendocrine tumour).

This was confirmed on 8th December which was a shock as I was healthy, young (relatively), had never smoked, didn't drink much. Luckily my Mum came with me to the appointment. It was there I found out that it would need to be removed. I then had a PET scan to confirm how active the tumour was (quite in my case, unusually so) and spread (no spread was picked up outside the lung). I feel lucky that I exercised. Otherwise, I think my initial symptoms of wheezing and breathlessness could have been put down to being a bit unfit!

What did you do immediately following the diagnosis, and how did you feel?

I got a lift from my Mum back to school as I was too shocked to drive. It was the night of our carol concert in school and I lead music so I went back to school, told a couple of those closest and the headteacher (who sent an email to all staff on my behalf so I didn't have to tell everyone). I did the concert, shed a few tears during the beautiful singing (in the dark) and got a lift to collect my car afterwards (at my Godparents house near the hospital) and drove home to tell my husband. I felt a bit sick, shocked and numb. It was the last thing I expected to hear and I didn't feel like I expected to with cancer.

And those closest to you?

Shocked but determined I think mainly sums up how my Mum, Dad and Husband felt, as well as my sister. It was just so unexpected. However, the focus became attending and preparing for appointments. I said all the way through that I was glad it was me and not family members like the children, Col, parents as I knew I could cope. I had some pretty dark night time walks with the dog that December and January. It was hard for everyone to get their heads round but seemed worse when I was walking and had time to think. However, I now think that walking, even at that stage, was important in me coming to terms with information and what had happened. We also had amazing support from the medical staff and Macmillan nurses at that stage so that helped by providing lots of info. We found out on 23rd December that they might take my whole lung rather than part of it and I remember sobbing in the appointment saying I was quite attached

to my left lung! I also had the most terrible tonsillitis over Christmas which did not help me process the impending op. It did distract me though! It was hard telling the kids I had to have an operation. I told them I had a blockage in my lung that had to be removed which they took quite well though got a bit worried that I wouldn't wake up, particularly Maisie. My Mum stayed for 5 weeks which was an amazing help. I didn't tell them it was cancer and haven't because naming it didn't seem to help. I also had an amazing group of friends who listened to me in the darkest times.

How you come to #walk1000miles?

When I was in hospital Mum brought me a copy of CW as I had always loved walking. We had done the Dales Way before children, walked in Scotland, Madeira, New Zealand, Isle of Man, Canada and other places. We had been on a family holiday with friends to the Dolomites in Summer 2015. Walking had taken a bit of a backseat until the kids had their walking legs but I still loved it and walked a lot with the dog. I was also told to walk a lot before my op (at least an hour a day) to help with recovery). I'm afraid to say I wasn't very receptive to Mum providing me with a copy of CW in hospital (I have a bit of a stubborn streak and wasn't really up to all the reading - that I now love when I get my subscription copy) so I skimmed it but that was it. When I got out of hospital I think I must have bought another copy and decided to subscribe (Mum bought it as my birthday present). I was told to walk as much as possible after the op to help with my recovery and decided to use #walk1000miles to help me and give me a focus. A little later I thought I could put my walking to even more good use and decided to raise money for Leeds Cancer Centre where I had received my treatment and support.

I started recording on 17th Feb with a grand walk of 0.1 miles to the bottom of the road and back and that was all I could manage. Mum came with me for walks at first as I wasn't meant to be alone.

Can you describe your feelings the day you woke up after your operation?

I was a bit out of it to be honest - lots and lots of drugs. I remembered that the advice from the medical team at our patient meeting had been to try and breathe for yourself straight away so I did that despite the oxygen mask. I kept doing that when in hospital, on High Dependency and when on ward. I was relieved to have woken up, glad the op was over but very sore.

What on earth must it have been like doing your first walk for the challenge? Were you scared?

I had 2 first walks really. They get you up and walking as soon as possible to help with recovery and prevent blood clots/infection etc. I went for a few steps the day after the op supported by the Enhanced Recovery Nurse as I had a lot of drips, drains, oxygen. I then tried to walk every hour. I had my op on Tuesday and went home Friday lunchtime. My friend Rachel took me and that walk from the ward to her car was very difficult. I was focused on getting to the chairs in the lobby to sit down but was breathless and weak. I made it though....as I said I'm pretty determined. My first proper outdoor walk was to the bottom of the road and back - the 0.1 mile above. It was hard, especially back up the hill. I was scared as it was hard to catch my breath sometimes. I just knew I had to put one foot in front of the other and keep increasing the distance.

Can you describe how it feels to be a one-lunged walker?

It feels very different to be a one-lunged walker now than I did in the first few months. I have just passed 6 months post op. At first I really struggled to walk anything other than slowly but you are encouraged to increase pace to build up the remaining lung. Hills were especially challenging and I couldn't walk the distance or incline I could before. It always felt like I was doing the next level of exercise up... so a slow walk felt like a moderate pace, a quick walk felt like a jog. However, all the walking has really helped and I get much less breathless now, including on some fairly steep hills around us. I know I have to walk for my health, and sanity. It really

helped to have a focus in the #walk1000 challenge as everything else was tricky. Walking was something I could focus on getting better at and could see the small changes in terms of distance or how I felt.

How has your health progressed since starting the challenge?

I feel better now than I have done for years. I am less tired, feel fit, have lost about a stone in weight, have a sense of perspective about what has happened. I concentrate on walking in the here and now and appreciating what I can see, hear, experience. I feel lucky that the tumour was discovered and to be alive. I now look back and realise that those health niggles had been affecting me, even though I did some running challenges. I feel like the me from before 2012! I have also been participating in a research project to look at how yoga helps with recovery from lung cancer surgery so this has helped with breathing when walking too.

How do the doctors feel about your recovery?

I recovered well from surgery and was discharged after 6 weeks. I still have to see the oncology team and will do for monitoring, probably for the next 10 years as there were microscopic cells in some of my lymph nodes. This is about prevention for return.

Your life has been changed through something outside your control; how much has walking felt like taking back control, and how big a difference has it made?

Walking has definitely felt like taking back control. It is something I can do to help my recovery physically, mentally and emotionally. It gives me space to think, deal with what was such as shock. It is a great thing that has come out of something terrible. I get up and I walk. I need to go somewhere and I walk. I want to have fun and I walk. I loved walking before but now I need to walk. I truly believe that walking has given me a focus for recovery and has helped develop my lung capacity. It also makes me a nicer person as I am much nicer to know after I have exercised. Going on a walk is also such lovely family time. The kids are great walkers, albeit sometimes needing incentives and we have time for chats that we wouldn't do at home.

How are you, and those close to you, feeling now about the future?

I'm really well. I feel fantastic. I feel positive about the future and enjoy life, trying not to sweat the small stuff. Something life changing like cancer makes you appreciate everyday and not worry so much about the minutiae of life. I have wobbles – I really want to be here to see my children grow up but walking helps me get things into perspective, and talking helps to. You can probably tell by now I like a chat and am a great believer in airing problems and talking them through rather than bottling them up. The Facebook group has been great for airing my thoughts, seeing other people's challenges and experiences and getting a lovely picture of 'life'. The kids generally feel that everything has been dealt with now my lung is removed and that is how I want it. I want them to have a childhood with as little worry as possible about something that may or may not happen. I think family and friends are positive about the future because I am. I'm sure they worry around the time of check ups etc and Grandma said that Feb had been the worst month of her life...and she is very stoic...but generally we have acknowledged what happened and will deal with whatever comes up!