Meet Clare...

Clare, rectal cancer

 

How did you find out you had cancer?

Since the birth of my son in August 2011 I had been experiencing rectal bleeding. I had been to see my GP numerous times, but each time they put it down to pregnancy and child birth. After a year and a half the GP finally referred me "to have my piles looked at". My husband was away working in Thailand and I didn't have anyone to look after my little boy, so thinking the appointment was going to be fairly straightforward, I took him along with me.

I was often anxious about doctors’ appointments, but this time I could not have cared less. I just wanted to get in and out and get on with my day. How wrong I was.

I explained my symptoms to the specialist and he examined me.  As we sat back down at the table I will never forget the look on his face.  He asked me when my husband would be back home, and how many children I had. And then he told me that it was very bad. " Do I have to have the piles removed?", I asked. " No" he said, " I am very sorry, but you have a very large tumour". Not knowing what that was I said, " Will I have to have it removed?". "Yes" he said, " it is cancer".

 

What did you think/feel when you were diagnosed?

I was in total shock. I thanked the doctor for his time, and asked my little boy to do the same. "Fank ou doctor" he said in the cutest voice imaginable.

I walked like a zombie through the hospital corridors. I was expected to book appointments for an MRI, CT and colonoscopy. When I reached the desk the lady insisted on knowing the date of my last period. " I don't know" I said, " I don't think it matters", but she persisted, and I broke.

A kind nurse took me into a cubicle and gave me a cup of tea and some biscuits.  My son ate the biscuits while I sobbed silently into my paper cup.  All I could think about was dying and leaving him to grow up without a mummy.  I wanted someone to come and get me, but there wasn't anyone.  I went home and sat there for 12 hours until my husband came home. I just stared at Oliver playing on the sitting room floor, and cried.

 

How did the people around you react?

Everyone was in total shock. No one could believe it. People don't get cancer in their 30s do they?! My husband put his career as an actor on the shelf and took a "regular job" at a nearby private hospital to give us some financial stability and so that he could be nearby to help out when I had appointments.  Some of my friends showed me so much love and have really been there for me, and some deleted me from their lives altogether.


What treatment did you have?

The tumour was too large to operate on straight away so I had six weeks of chemo-radiotherapy every day.  Sadly it didn't have the desired effect. The tumour shrank a little, but turned into mucin (jelly like deposits) which they couldn't test for cancer until it had been removed.  This resulted in having some of my bowel and rectum removed and a having a total hysterectomy.

Although I was sad about the hysterectomy, I had previously been told that the radiotherapy would damage my uterus and I would never be able to carry another child. So having my reproductive system removed altogether when it wouldn't work anymore didn't really seem to matter so much.

For me, the surgery was far worse than I could ever have imagined. But the worst part by far was being away from my son. I had never left him before and for those two weeks I thought that my heart would break. Even when I returned home, I couldn't pick him up or cuddle him on my lap. He had to stand next to me while I read to him.

When I had recovered my strength from the surgery, I began six months of chemo.  Sadly during my first IV treatment I had a huge allergic reaction to the drug and the oncologist decided to discontinue with that course of treatment. I was only able to take the oral part of the chemotherapy.

 

How did you feel through treatment?

I managed to battle through my year of treatment. It is only now, looking back, I realised how exhausted I was. I treated my treatment plan like a "to do" list, checking each bit off as I went.

 

What happened after treatment finished?

When my treatment came to an end, I expected to bounce back to normal - how wrong I was! The moment my treatment stopped and my scans were clear, everyone who had been holding their breath for the last year breathed a huge sigh of relief and left me alone to "get on with life" "now I was “ok".

A year on from finishing my treatment I am just starting to pull myself together, but some days I don't really know how.  I love every day (even when I have a shi*t day), because I am alive and with my husband and son. I love the sun (when it comes out) and I love spending time with my friends and family.  But... I feel hurt, why me? And even though I want to "enjoy each day as if it were my last" the pressure to do so with a big black cancer cloud looming over my head is often too much for me.


I feel hugely grateful for the child I already have, but all of my friends are having their seconds and thirds. My head is full of joy for them and their new bundle of life, yet my heart is full of sadness for the sibling I can never give my son and the family I can never give my husband.  I would like to return to work to regain some normality, but I feel strongly that I must spend every second with my son in case I don't have long left.


In November I had my colostomy reversal. I was grateful that it could be reversed, but I kept putting it off because I couldn't bear the idea of another operation. I am very glad I was brave enough to go through with it, and I am now as "normal" as I will ever be.

I put on about 3 stone when I was having my chemo. Having a colostomy bag meant that I needed to wear baggy clothes to hide it, so I didn't really notice the weight creeping on. I had very low self-esteem about the changes to my body and it seemed easier to just roll with it, than to try and do something about it.

I have now lost 1 of those 3 stone and am slowly regaining the level of fitness I had before.  I have scans every six months to make sure the cancer hasn't come back, so I try and live for six months at a time, and never plan beyond that.  I always try and give myself and my little family fun things to look forward to, no matter how large or small.

In June we are planning a once-in-a-lifetime long dreamed of road trip in America. The day we get back I will have my next lot of scans, but whilst I am lying in the MRI machine I will be remembering my happy holiday.

 

How did you get involved with Shine?

I saw a poster about Shine at the Royal Marsden in Chelsea and joined their Facebook group. When I saw a post about the 2014 Great Escape being held in Bournemouth I jumped at the chance to spend a weekend with other young people with cancer, in one of my favourite places.

 

What difference has Shine made to you?

The Great Escape was one of the best things that has happened to me since my diagnosis. For the first time in a year I didn't feel alone. I now know people who understood what I have gone through and it’s also nice to be there for others.

 

How do you feel now about your experiences? What has been the biggest change you’ve experienced?

I appreciate every day like never before. I can see now what is really important and what is not. And I know now who will be there for me when times get tough.


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

Before my diagnosis I had a very full life. I worked hard and played hard. But If I could go back and whisper in my ear I would tell myself not to get so stressed about the little things. Life is too short.