Meet Louise...

Lousie, kidney cancer

 

When were you diagnosed and what with?

I was diagnosed in November 2014 with Stage 4 papillary renal cell carcinoma type 2.  This is a rare kidney cancer, which has spread to my lungs

 

How did you find out you had cancer?

I was pregnant with my second child and was really quite poorly during the pregnancy, including a persistent cough. I ended up in hospital with pleurisy when I was seven months pregnant and had x-rays of my chest. Two weeks after I had my daughter in June I went back to hospital to have another x-ray to check all was clear, which it was. I told the doctor that I was still coughing and that things definitely weren't right.  He said he would refer me to Thoracic, but it definitely wasn't cancer (that was good to know, I thought!!).

Eventually when I got to see the thoracic consultant in September he said he could see a mass on my lung & he could also see it on the previous two x-rays I'd had in the April and June and that the mass had got bigger on each x-ray. I was then sent for a CT scan and they could see tumours on my kidney and lungs. That's when biopsies and the long wait for results started!

 

What did you think and feel when you were diagnosed?

I remember sitting in the room with my oncologist, the first time I met him, I knew I had cancer as I had been pretty much told it didn't look good, but I was feeling like I was going to take all they could throw at me and come through this.

Then he said the words, “it's a rare type and there is no cure” and time

Stopped.  That was not meant to happen. I was meant to have a fighting chance, but that had been taken away from me. I was totally devastated and numb.

 

How did the people around you react?

Obviously everyone was upset and shocked, but I can honestly say my friends and

family have been amazing.  They really have been there for me when needed. I know some people say that they lose friends after diagnosis as they don't know what to say, but I honestly haven't experienced this, so I feel very lucky.

 

What treatment have you had?

Treatment is never ending for me.  The purpose is to keep it at bay for as long as possible. I started treatment the day I was diagnosed and it is called TKI, it's an oral tablet. I have taken 2 different types so far.  The first worked for 12 months and the second I stopped at 14 months while it was still working to try a

specialised immunotherapy treatment called Interleukin 2.

 

How did you feel through treatment?

Treatment has been so tough as it is a never-ending battle with side effects,

but it has become my new way of life and I have no choice, so I just get on with it. Fatigue and diarrhea were two of the biggest struggles for me while on the

TKIs, especially when trying to look after 2 young children, but they made me

get out of bed each day and carry on!

The Interleukin 2 is a whole different kettle of fish as I'm an inpatient for 2 weeks out of 4 and recovering for the other 2 weeks.  It’s hard not being able to look after my girls, but on the plus side I then have 8 weeks side-effect free until the next cycle begins, so it's all swings and roundabouts.

 

How did you get involved with Shine?

I was told about Shine by my specialist nurse when I was first diagnosed, but I must admit that I put that piece of paper in my “new medical file” along with lots of other stuff I wasn't ready to deal with.

It was probably about a year later I met Emma on the shine stall at a Living Well Active Discovery day at Bournemouth University. My first Shine event was Shine Camp 2016.

What difference has Shine made to you?

Shine has made a huge difference to me, getting to know so many lovely people who understand the issues, both physically and mentally. All the events I have been lucky enough to attend have been so beneficial and I now have an amazing support network of people of a similar age who totally “get it”

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

The biggest change is not being able to do everything I used to be able to do.  Although sometimes I think I can carry on as before, my body quickly tells me I am wrong and brings me into touch!

 

If you could give one piece of advice to yourself before your what would it be?

If you're unhappy with something in your life, don't just put up with it, change it.