Bowel Cancer Awareness Month – Stats, Symptoms & Steve’s Story

With April being Bowel Cancer Awareness Month, and today being 17 months to the day since Steve died, I wanted to talk a little bit about bowel cancer and include a brief version of Steve’s story.

Bowel cancer is the second biggest cancer killer in the UK and can affect people of all ages. This seems so unnecessary, considering that when discovered at Stage 1 of the disease, 90% of cases are curable.

According to Bowel Cancer UK, bowel cancer is the fourth most common cancer in the UK, after breast, prostate and lung cancers. Over 41,200 people are diagnosed with bowel cancer every year in the UK. Around 5% of the people diagnosed with bowel cancer every year are under 50 years old – that’s around 2500 people under the age of 50 diagnosed with bowel cancer each year.

The symptoms include:

• Bleeding when you go to the toilet
• A change in bowel habit lasting three weeks or more
• Unexplained weight loss
• Extreme tiredness for no obvious reason
• A pain or lump in your tummy

Steve’s Story

Steve was diagnosed with bowel cancer in July 2012. He had experienced a large amount of blood loss going to the toilet and his diagnosis came following a series of tests. He was 30 years old. We were in complete and utter shock. Our lives were suddenly filled with hospital appointments, tests, scans, sickening worry and sleepless nights.

Two months later, in September 2012, Steve underwent an eight hour operation to remove the tumour and it was thought that the operation was successful. The histology report following surgery showed that the cancer had spread to three of the 29 lymph nodes removed during the operation. This made his cancer Stage 3, and meant that the cancer could spread to anywhere in the lymphatic system.

For this reason, it was decided that Steve would require eight sessions of chemotherapy, made up of the drugs Oxaliplatin (via an intravenous drip administered three-weekly) and Capecitabine (tablets taken for the two weeks following the intravenous drip). The chemotherapy was gruelling and the side effects included sickness, exhaustion and severe neuropathy, a painful pins-and-needles sort of sensation in his hands, feet, face and throat which was aggravated immensely by the cold.

In May 2013, the end of six months of chemotherapy, a scan showed a very small spread to Steve’s left hung. We were told this could be treated quickly and effectively with an operation in Southampton.

The lung operation took place in July 2013 via keyhole surgery. Steve was given the all-clear and was fit and well for our wedding on 6th September 2013, exactly one year after his first operation.

In December 2013, we decided to start trying for a baby. Three different doctors had given us the go-ahead, confident that Steve was, and would remain cancer-free. Just one month later, in January 2014, we discovered I was pregnant. We were absolutely ecstatic, but just nine days later came the devastating news that Steve’s cancer had returned to his lungs with a vengeance.

Chemotherapy begun immediately that week, this time a combination of 5FU and Irrinotecan with Avastin on the side, which was to boost the effects of the chemotherapy drugs. He had a tunnel line fitted into his chest, which was to stay in place until it was decided that the chemotherapy was either no longer needed, or no longer effective. 5FU came in a little bottle attached to the end of the tunnel line, and was administered over 48 hours. This meant he still had the bottle attached at home two days later.

I spent time with the nurses after asking them to train me on flushing the chemo line, so that I could do this from home to save us more hospital trips. I was given all of the equipment and became completely confident in doing it within no time at all.

This treatment continued until my 30th week of pregnancy, when Steve was admitted to hospital with a staphylococcal blood infection which very nearly killed him. Staph infections are known to often affect the major organs such as the heart, lungs and brain, and can shut down them down. Because Steve’s tunnel line went into his chest and was closer to his heart than any other organ, his heart was in imminent danger of becoming infected and shutting down.

Thankfully, after five days and numerous IV medications, antibiotics and fluids, Steve was showing signs of improvement and stability. At this point, his tunnel line was removed under local anaesthetic and it was decided that chemotherapy would be stopped. Steve would be given a significant amount of time to recover from the infection.

We welcomed Esmée in October 2014. She was, and is, the best thing that ever happened to us both. Suddenly, something even bigger and more important than cancer was happening, and it was something incredible. Our days were filled with love and laughter. Of course, in the back of our minds we knew that there cancer was still there, probably still growing, but we needed that time as a family where we could pretend that it didn’t exist and just enjoy life.

Behind the scenes, our oncologist and his team had been busy getting Steve enrolled onto a trial drug, Xilonix, the aim of which was to stabilise the cancer rather than to get rid of it, to help build muscle mass to allow the body to better fight off the cancer, and to generally improve quality of life. Whilst we knew that options were starting to run out, we did not know at this point that we were dealing with a terminal diagnosis.

In November, with our 7 week old bundle in our arms, we walked back through those same doors we’d walked through so many times before, for Steve’s first infusion. Luckily the treatment went well, and didn’t take as long as previous treatments had. The nurses went back to administering the treatment via cannulas in Steve’s arms as opposed to a tunnel line due to the severity of the infection he’d come down with a few months before.

In early 2015, a scan showed that the trial treatment was working well and could continue as long as the effects were still favourable. Between cycles, Steve was able to continuing work full time and spending time with his family and friends.

Treatment became harder to administer as Steve’s veins became more scarred from the months and months of treatment he had endured through them.

In July 2015, we were heartbroken to discover that the effects of Xilonix had plateaued and the treatment was no longer beneficial. The treatment was stopped and our oncology team continued to look for another option.

For the next eight weeks, we were in and out of hospital having blood tests, various scans and signing consent forms for another trial treatment and it all looked relatively positive.

Two or three days before the treatment was due to begin, we received a phone call from the clinical studies research team at the hospital. The people heading up the trial had been in touch to tell them that trial had closed and they were refusing to accept any more patients. This had been our last option. Steve was terminal.

To add to the blow, an MRI scan showed that the cancer had now spread to Steve’s spine. He had been in unreal pain for a couple of weeks with suspected sciatica, and it suddenly made sense. His pain was caused by a tumour at the top of his spine and another one at the bottom, crushing the sciatic nerve.

Steve was referred for radioatherapy to blast the tumours in his spine. Not to cure them, as it was made clear to us that this was not possible. But to shrink them slightly and therefore release the pressure on the nerves, relieving him of the pain.

Getting to radiotherapy was agonising enough for Steve as he had to lay across the back seats of the car to minimise the pain. He waited two hours for his treatment only to be told the next day that they had missed their target by around four inches down and two inches to the left. He had to go in and have the treatment again.

Unfortunately, the radiotherapy did nothing for Steve’s pain and he was mostly bed-bound from that point forward.

We had a party at home for Esmée’s first birthday and he managed to spend most of the day outside with us. For most of our friends, this would be the last time they ever saw him.

A few days later, Steve was admitted to our local Macmillan hospice for pain management, but insisted on coming home as soon as his medication was adjusted enough to make him comfortable.

Sadly, and unbeknown to us at the time, the cancer was growing and spreading so rapidly by now (assumed to have spread to his liver and possibly elsewhere, although this was never confirmed), that the pain was almost impossible to keep on top of. He was soon admitted back into the hospice for further pain management.

During this second stay, Steve was fitted with a syringe driver on each arm. Every 24 hours, a nurse would have to change the drivers to ensure his medication was being administered correctly and was flowing through him continuously. On top of this, he was still taking 40-40 pills each day and yet he was still in pain.

Knowing how unhappy Steve was in the hospice, I went against doctors advice and brought him home. The doctors decided to remove one syringe driver and allow him to take the other medication orally to make life more manageable at home.

Every day, the nurse came out in the morning and changed Steve’s syringe driver.

Steve was so clearly happy to be home, and loved that he was able to see Esmée playing. When she went to sleep at night, we watched films in bed and chatted, although never about his illness or what might happen. He was comfortable in his own familiar surroundings.

On the ninth day at home, the nurse came to change his syringe driver and spent some time with me downstairs, away from Steve, telling me that she’d never seen anybody fight the way he was fighting. She said his love for us was clear for anybody to see and that he knew he had too much to live for. She didn’t think he was going anywhere for a while yet.

An hour and a half later, as Esmée played with her cousin and auntie downstairs, Steve died in my arms surrounded by his family.

 

 

17 months on from losing Steve, my desire to urge people to learn the signs, symptoms and risk factors hasn’t lessened in the slightest.

If you feel like something isn’t right, or are showing any of the symptoms listed above, please see your GP. Don’t always accept the first answer you’re given, it may not be right. Be persistent with your doctor. Request to see different doctors. Demand testing and referrals. Ask for second opinions. Early detection is key. More information and advice is available at the Bowel Cancer UK website.

Love,

Gina xx