Dusting the cobwebs off my laptop for an update

Hey everyone

I will try to keep this short as today's post is painful but I want to stay positive. Maybe you have been here before? Or you know someone who has or is going through a cancer battle.

My husband (more about that later) was diagnosed in July 2013 with a rare form of cancer called a synovial sarcoma. You can get a sarcoma anywhere really but in Stephen's case it was in the right ankle. As Stephen was fit and healthy otherwise, what doctors (GP and Hospital) thought was swelling in ankle. After a "full" investigation (an x ray), it actually transpired a 5 cm tumour had grown so large it had wrapped around ankle. Due to the severity of the tumour his leg was amputated to just below right knee.

Stephen's recovery from surgery was hindered due to an poorly treated infection and a stump that would not heal so for 6 months Stephen had to rely on crutches full time to get around as they could not fit him for a prosthesis.

In January 2014, Stephen started to feel unwell. He could not breathe well and he was not sleeping. I will never forget it, I was beside myself with worry. I eventually got him into hospital and thanks to the Irish Accident and Emergency department he was kept on a plastic chair in the waiting room for 9 hours in agony and no support for breathing until they put him into a bed and admitted him into hospital at 7 am the next morning. All without telling me what was happening.
Turns out he had a severe infection in the chest and the cancer he worked hard to beat had spread to both lungs. Stephens' bodies motto must be 'go hard or go home' as when he gets ill he gets really ill.

He was moved to the Mater Hospital after a week fighting infection and we met with one of the best Oncologists in the country. It was explained to us that Stephen would have to start treatment immediately and we were carted off the the HARI clinic the next day. Stephen was given the opportunity to store for future use if we ever wanted to conceive. That in itself was an experience.

We learned that the infection in the stump had far from cleared. Osteomalitis is the name. Life threatening if left untreated Stephen was on antibiotics for at least 8 weeks in which time the hospital found sutures left from surgery and gauze due to a bad job cleaning wound. He was under the care of Infectious diseases.Once it cleared he was fitted for a prosthesis so no more crutches.

For the next 6 months Stephen had a 3 day stay in hospital and 28 days off. The chemotherapy drugs made him feel lots better but unfortunately 6 cycles are the maximum allowed due to the effects one of the drugs have on the heart. By June the lesions in lungs had shrunk considerably and we were given a break.

In September the breathing issues started to rear it's head again. I knew the signs by now that something was wrong. Sent him to his GP and was told there was no infection and to wait for another few weeks to meet consultant. Unbeknownst to us, the oncologist was unhappy with the last scan as it had shown a considerable growth so a new round of chemotherapy had already been ordered.

For what ever reason Stephen's body could not handle this new drug and after one full cycle his immune system depleted to scary low levels. Within 24 hours of him receiving the drug he had a serious infection. He was coughing blood and ran a temperature of 39c.
Rushing him to hospital for a third time I felt numb. I knew the outcome would not be what we wanted. Back on antibiotics this time I was told he was critical and to prepare for the worst.

My world came crashing down around me, They told me not to speak to Stephen about it but he knows me better than I know myself. He knew himself that he was in trouble.
The next day the Oncologist met us and gave us the news. I don't know how he does his job, he was finding it hard to keep it together. The capacity in the lungs is lowering daily, The chemotherapy is doing more harm than good to the body. His heart would not take another cycle.
The cancer is terminal. The hospital gave us 2 days when he went in on the 15th October, Stephen pulled through the infection. They have given us weeks, not months or years. Stephen is back home, On constant oxygen but better than ever. We are doing more now that we know he wont be well for much longer.

We married on the 25th October 2014. What started as an idea to marry in Hospital Chapel as Stephen was too sick to get out of bed ended in a beautiful ceremony with 100 family and friends and a reception in Stephen's local pub, The Beaumont House. Everything that happened on the day was due to kindness and generosity of our family, friends and both our communities. The Beaumont House covered the bill for all those people.The cake was donated by The Boston Bakery. Whitehall Church allowed us to use the altar and a choir sang beautifully for us. My grandmother helped me pay for clothes and rings. We are still on a high now and I think the wedding gave Stephen a boost to stay strong for us all.

We have so many plans but all are made without tomorrow in mind. The local hospice have met us and are bringing Stephen in slowly to get used to the place and help him decide where he wants to spend his last few days.

I have not gone back to work since October and I don't plan to for a while, I may even go to College to study nursing. Caring for Stephen has made me want more for my life. My biggest fear is a loved one dying. Now that is happening there is nothing in life to fear. I know Stephen will always be looking down on me and Loki our dog.

I believe we all start out life with a ticket we just don't know when our time is up. I believe there is an afterlife and that spirits exist. I wont go into it much but I had crazy dreams and anxiety in the weeks up until Stephen got sick both times and I dreamt of my grandfather who died of lung cancer. I believe he was trying to give me a sign.. Could be a coincidence but it helps me cope so I don't mind if people think I am mad for thinking like this.

Stephen donated his leg to Cancer Research and has been involved in fundraising for men's health and Movember, Unfortunately the chemotherapy cycle made his hair fall out so no Movember this year!
I will continue to help support research when Stephen passes on.

I promise to update you all again and will even do a full post about the wedding day over the next few weeks. Thanks for reading my story.

Louise xxx