Lori Houlihan happens to be my step-mother-in-law. She also happens to be one of the inspirations behind Le Wren. But so much more than that, she is a woman who has turned a life-shattering diagnosis into a call to action -- to live life to its fullest, to find the joy in every moment, to inspire those around her. 

I know you will find beauty and wisdom in the words that follow. May they be a comfort to many and an inspiration to us all. 

 

In May 2019, I was living a busy, fulfilling life in the UK as a wife, mother and Vice-Provost of one of the world’s leading universities-- UCL. I experienced déjà vu spells one day and brushed them off. That evening I had a seizure and was rushed to hospital--and life changed dramatically and devastatingly for me, my husband, our 16-year-old daughter and the rest of my family, friends and colleagues. Within a week, I was diagnosed as having Glioblastoma – the most aggressive form of brain cancer. 

There is no cure for Glioblastoma, and the median overall survival rate is under one year. I had surgery to remove the tumour and was prescribed the current standard treatment, a combination of radiotherapy and chemotherapy. I was fortunate to access some Immunotherapy, which is more experimental for this condition, and I am still on chemotherapy.

Lori, following her brain surgery

When I was first diagnosed I was advised not to google my condition, but of course you always do. What I found was not at all encouraging but, as my brilliant surgeon told me, “no one is a statistic”. I am tolerating the treatment well, feeling positive and learning to live with the fact of my reduced life expectancy. Very early on, I was given some very good advice.  “Focus on the things that bring you joy and remove all stress and anxiety”.  That advice has got me through most days and remains my mantra. 

Maya Angelou’s wonderful quote best sums up how I have come to live with this disease: “My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.”

So many people have gone out of their way to help me and have shown me so much love and kindness. My husband and daughter have been amazing, as have my family in Scotland and my step children on both sides of the pond who were right by my side from day one.  

Friends and colleagues have kept in touch and visited when they can and we would meet up in London before the pandemic. Their support has been tremendous and Team Lori is full of the most wonderful people, who support not just me but also my family. I also have to mention Sandie, our cockapoo, who immediately sensed I was ill and became a therapy pet!

Sweet Sandie, frolicking 

Serena put together the most amazing care package for me.  Sadly her mum had had the same condition and she knew exactly what I needed.  It was such a wonderful moment opening this package and discovering all these treats and practical gifts to make my life a bit easier.  It was also so special because I knew everything had been carefully chosen with me in mind. It gave me such a boost. 

 

I find inspiration in so many places these days.  I am inspired by the dedication and commitment of my medical team and my oncologist’s determination to find a cure for Glioblastoma. There is always something to be grateful for. I even found myself grateful for being able to hang out the washing one day!  Doing normal things became very important to me. Every day I make a conscious effort to think of all those things and give thanks. Some days are of course harder than others and my faith has helped me enormously during this time. 

Knowing I have so much love surrounding me brings me peace. I also take comfort from things I read. I was sent a book by Hoda Kotb. She said “It’s ok to have a meltdown. Just don’t unpack and live there!” Thankfully most days I remain positive and upbeat but I also give myself permission to acknowledge when I feel anxious and accept that it’s normal to have negative thoughts coming into my mind. I just don’t dwell on them. Taking things a bit slower when you need to is a sign of self-respect.

People often ask how I cope with knowing this is not curable. I reply, “some people say you only live once, but I disagree. You only die once, you live every day and that’s what I am doing.” When you take one day at a time you stop worrying about the future and focus on today. Try to help your loved one live in the moment and make the best of every day the way it comes. Make the days count, don’t count the days.  Help your loved one live their best life. Communication is key in most relationships, so be there for them and understand this is not going to be a straight path. They are still the same person and won’t want their condition to define who they are.

My advice for those going through similar challenges themselves: Everyone is different. For me hearing about other people’s experiences--good or bad-- was not helpful. Do what feels right for you and what makes you happy. I love music and I made a playlist for my radiotherapy treatment. The staff even made their own special one for my birthday!  Music really lifts my mood and makes me smile. Don’t feel you have to reply to every message and card in real time.  I found writing quarterly updates helped manage the desire for information on how you are doing.

Lori and her husband, Dominic, aboard the Orient Express

I hadn’t appreciated at the beginning the ripple effect this has on the people around you and how much would change. I also had to give up the job I loved.  Things will be different but not all of it is bad, quite the opposite. 

I have spent more time with my family than I have in years; I have made contact with friends I had lost touch with; I have been on amazing holidays and went on the Orient Express. I have set up my own fund to raise money for research and increase awareness of this disease.  I have also stayed on the Board of a couple of Charities that I was on.  For me finding ways to keep busy but in a manageable way has been really positive.

Lori and her daughter, Poppy

 

Finally, Confucius said,  “We all have two lives. The second one starts when we realise we only have one.”

Take a peek at Lori's favorite gifts here. These gorgeous goodies are reminiscent of what Serena sent Lori in that first care package over a year ago.