Living wih Cancer for Breast Cancer Awareness Month with Lou Simpson

October is a very busy month. Not only is it Breast Cancer Awareness month but October also plays host to World Menopause Awareness Month and World Mental Health Awareness Day.  I think that there is no coincidence here, as all 3 are intrinsically linked.

Yesterday, after years of being Instagram friends, I (Sarah) had the privilege to meet local lady Lou Simpson who is basically one of us!  She is 52, beautiful, bubbly, a staunch supporter of Donna May London and loves to treat herself to nice things and lovely holidays.  The main thing that sets her apart from most of us, is that Lou has been fighting cancer for the past 11 years.  I asked Lou if she would share her story with us, even if it helps just one person to understand how important it is not to ignore symptoms when you know instinctively something is not right.  

Lou's initial diagnosis was Ovarian cancer although now has secondary breast cancer plus many tumours throughout her body.  Can you believe that Lou's initial thoughts when I asked her to share her story, was that she felt like a fraud (having not had an initial breast cancer diagnosis!),  after reading through our chat, you will understand that a fraud is the last thing she is!

Lou, at what age were you diagnosed with cancer? I am sure that the day is firmly etched on your brain - can you talk us through the first 10 minutes after hearing the news?

I was diagnosed at age 41 in 2011 with Ovarian Cancer. Initially, we thought I had irritable bowel syndrome or something similar.  I was experiencing bloating & stomach pain but as I started to see some breakthrough bleeding, my wonderful GP sent me to the mainland for further tests.  It was the middle of winter and due to our remote location on The Isles of Scilly, each time I had an appointment, bad weather caused transport issues and each journey over was cancelled. Finally, after a month of trying, I made it to hospital.

Within a two-hour period, I had been scanned, told I had cancer and walked out of the hospital with a date for my surgery. I felt numb, like I was hearing someone else’s news, I couldn’t take it all in. 

As I was alone on the day, I was asked if I had someone at home. I remember looking at the nurse in the blue uniform and saying yes, my husband, and then thinking about how the hell was I going to tell both him & my mum;  tears started to flow.

Later that evening I thought of my nieces and how I wanted to see them grow and have families of their own one day.  It terrified me that I may never see that happen...fortunately, I have 😊

What treatment did you initially receive and over how long?

My initial treatment was a full hysterectomy, bowel surgery and then a full programme of chemotherapy 3 months later.

What side effects have you endured? Can you talk us through any coping strategies you put in place?

I guess the most important strategy for me during all my treatments has been to have some kind of routine. Some days that’s not possible depending on what type of chemotherapy I am on...fatigue can be debilitating and I just feel generally yucky.

Waking up and getting up, even if you find yourself back in bed an hour later, helps me massively. The routine of getting up mentally is very important.

I have struggled massively with my appearance during treatment.  I have lost my hair 3 times and suffered from a horrendous itchy scalp, burning itchy skin, terrible bloating etc.  Due to my remote location, I have never once seen a wig lady or anyone who could show me how to apply makeup.  Youtube and online tutorials, such as Donna's, are a Godsend when facilities are so far away.

Find your people.  Friends who you can call, message, or who regularly pop in to see you or invite you for coffee when you're well enough to do so. I think any kind of illness can be quite isolating so it’s important for people around you to check in from time to time. 

Where do you get your strength from?

I think the fact that I want to live and share as much of my life as possible with my husband and our dogs, helps me get up every day. To see my great nieces and nephew grow up into the lovely beautiful people they are,  and very importantly to see as much as possible of my wonderful mum -  she means the world to me.

What is your biggest personal challenge throughout treatment?

I would say the number one biggest challenge throughout my whole course of treatment is the effect this has had on my mental health. I like to always try to be positive and happy no matter what is thrown at me -  but of course, the reality is, you can’t always be that way through these treatments and it’s about allowing yourself to say 'today is shit but hopefully tomorrow will be better.'

Looking back, I should have accepted help sooner rather than allowing what I was really feeling to come to the surface.  I hid my fears and worries and tried too hard to remain the Lou I was before cancer.  I now get regular therapy to help me come to terms with what the future holds and to help me believe that I have a life to live, whatever it throws at me!

What kind of things did you do to distract yourself during your treatment - both in the hospital and at home?

I distract myself during treatment by chatting with other patients, the wonderful nurses and my lovely consultant whom I’ve now known for many years.

I have made friends with many other patients over the years although sadly I have lost some of those friends, which is understandably very hard.  My guilty pleasure is YouTube -  I follow quite a few 'Influencers' including Lily Pebbles & Kate Ellison and love to watch cookery channels.

I love to read, I write in my journal, listen to music and meditate during treatment perhaps once or twice which helps to rest my busy mind. 

As a friend or family member of a cancer sufferer - what is the no.1 most important thing that they can do for you? 

Be there! Be consistent! There have been many times when friends have asked if I would like to join them for coffee, drinks or perhaps a walk but I have had to decline, as I literally couldn't muster the strength to put one foot in front of the other.  This definitely doesn't mean that I don't want to, I would LOVE to but my body won't let me. Tomorrow could well be very different - so please don't overlook a friend if they ever say no.  Simply keep asking.

Where are you now with your treatment?

I am now undergoing palliative treatments to extend my life.  My cancer will never be cured, but treatments constantly change and I always have hope.  Infections are always a worry; just a few weeks ago I had to cut short our holiday when a large wound infection emerged and spent a week in hospital getting this under control. We have also recently discovered that I have just 3% kidney function in one of my kidneys - but luckily I have another! Silver Linings!

What is the biggest piece of advice you would give anyone facing cancer right now?

Always ask for help if you're struggling with your diagnosis or seek a second opinion.  You know your body better than anyone so never be accepting if you truly believe it to be more.  

If you are struggling with your treatment, reach out to a family member, a friend or your nurse. Search for a local or online support group - there are lots of them out there. Never feel alone, there are unfortunately too many others going through the same fears and worries - message me if you like   I am very happy to talk things through or simply listen.

Try to keep as active as possible and eat well as you will certainly need as much strength as possible.

Finally, and very importantly, open the blinds or curtains each morning with a smile because you’ve made it to another day.

Lou x

It was such a pleasure to spend time with Lou who is so incredibly positive and kind.  She clearly felt pain at times during our lunch together, which is difficult to see, but without any fuss would just adjust her position to make it more comfortable.

Lou's cancer certainly doesn't define her, it is just a part of the lovely wife, sister, aunt, daughter and friend that she is.  I am so glad that we finally have met and I know for sure that I will be spending more time with Lou now, a great excuse for a long lunch next time I am on St Mary's.

Sarah xx