My Story

My name is Anita and on the 1st April 2016, my life almost fell apart.  That was the day I came face to face with my Bladder Tumour!  I cannot even begin to tell you how confused, shocked, stunned, overwhelmed I felt that day.  Having to tell my Husband, Tim.  Just how do you tell someone you love that they have just found a tumour but other than that, you don’t know what else they said as your mind went into overdrive.

The Nurse played it down saying it “was the Best cancer to have” and “not to worry” as if it comes back they will just “scoop it out.”  So why were tears rolling down my face?  It all felt so surreal. 

The biopsy came back, it was a neuroendocrine, small cell bladder tumour and it had spread to my lymph nodes, live, hip and arm bones.  The prognosis was grim.  We were told they weren’t even sure if I would make it to Christmas that year.  It was all about quality of life for me now, now quantity.

Macmillan were so supportive. I have my lovely Nurse Jill and my Counsellor, Jane.  they both gave me the support I needed to get through 6 sessions of palliative chemo and how to face my own mortality.  There were tears, proscecco and cupcakes.  We made it our mission to make the best memories ever!  Its strange now, that those memories have faded fast.  how do you make memories under such a cloud of emotions?

I had  to come to terms with my own death, I was 45, I wasn’t old. My son Ashleigh was 22, what will he do without me? OMG! I morned the fact that I was never to see amy grandchildren born, my Son getting married, so many things rush through your head. So many things that I wouldn’t be able to do.  Its funny now, looking back as I think from tat first moment of my diagnosis I was determined to LIVE!

I think I just existed before, going through the daily grudge of working and looking after my family.  I loved my life but there was no urgency about it.  When you get told you are going to die, Life becomes so much more precious than it was before or maybe we just take our lives for granted and its only when something threatens that life do we sit up any pay attention.

Well I was finally listening. Cancer wasn’t going to destroy me, cancer brought me closer to my friends and family.  I had to endure another 6 sessions of palliative chemotherapy and 3 sessions of radiotherapy.  It made me sick, so sick.  I realised that I had sailed through my first lot of chemo.

How do you explain to someone that climbing the stairs took everything you had inside you?  how do you explain that even reaching to get something off the table was exhausting?  People tell you to rest when you can.  I found that difficult, I tried to carry on for the sake of my family.  Always being careful not to break down in front of them.  i didn’t want them to see my sadness.  I didn’t want them to know about the dark dreams of death I had.

In 2017, I was N.E.D, No evidence of disease… we were meant to be elated.  Its is a very odd experience  when you get good news.  You feel flat, you feel empty.  On the outside you show your “public” face.  The face that looks happy and over the moon.  All the emotions come rolling back.  When they say that cancer is a rollercoaster, they weren’t wrong.

I was told to go and enjoy the rest of my life, for now, as  it will be back.  The trouble was, I was in pain.  I had ulcerations in my bladder that were not healing.  Every 4-6 weeks I was having yet another TURBT (resection of the tumour area).  It would soon come to the point where even this wouldn’t be possible any more.

We spoke to a Consultant about having my bladder removed.  I tried so hard not to think about it,  If it meant I could live the rest of my life without this pain, I was prepared to go through anything.   I had Blocked out everything that the Surgeon had said.  I had to cope with “not knowing” things or my mind would exploded. 

On the day of the surgery, 19th August 2017, I walked myself down to theatre and so it began.  My lovely urology Nurse had asked to sit in on the operation and it was so nice to see a familiar face.  I just kept thinking that I would be out for the count soon and wouldn’t be in pain anymore, off I drifted.

I woke up in ICU and I swear to God, I had never felt pain like it, and certainly for the first few weeks, I was still in pain and began to wish I had never had the surgery.. It hurt when I moved, searing pain.  Not only was I dealing with pain I was also having to deal with “Sally Stoma’. 

I was so worried about how I would cope with having a stoma.    I needn’t of worried, I had to embrace her, “she” was part of me and now I had to learn how to live lie with a “bag for life.”  yes it was tricky.  There were the 2am leaks, the rookie mistakes but I was a fast learner and was determined to master this.  I didn’t really have a choice, did I?

It probably took me a lot longer for me to heal as I was overweight and unfit. Still a month to the day of the surgery, I was sat in the O2, watching The Foo’s.  Worried about having a leak and do you know what?  it DID leak and I dealt with it.  I think that was the first time I realised that I could cope with everything, living without a bladder was going to throw at me.

Some days are better than others.  I have some illnesses that I never had before I was diagnosed, and I think it is thanks to cancer that I finally got diagnosed with Erythromeyalgia.  A rare disorder that affects the body with serve burning pain. Then I was diagnosed with Raynaud’s, pancreatic insufficiency, high ALTS in my liver and moderate heart failure.  Basically this body sucks!  But what can I do?

During this strange, fraught and wonderful journey, I have learnt so much about myself, my family and friends and trust me when I say that, thats what is important in life.  Not money, not material possessions.  Family and friends.  Don’t take life so seriously, look for the magic in the day, its everywhere. 

In a strange way cancer has made my life better.  I no longer feel that every day is a “chore.”  I wake up every morning, so grateful to still be alive, I try and embrace the day with a smile on my face.  Never take life for granted as you don’t know what is around the corner.  I never thought in a million years that I would end up with terminal cancer.

“The worse year of my life, turned out to be one of the best”