Pain and Drugs

I totally forgot to write about the numerous hospital trips following on from Steve's infection and hospital stay.

About a week after being discharged from hospital in July, Steve started to get severe pains in his chest. We had no idea what these pains were or why they were happening, but it was completely debilitating. It happened a few times a day/night to begin with, and he'd be keeled over in agony. There didn't seem to be any lasting effects from the pains - they came on very suddenly, lasted up to a minute and then disappeared just as quickly as they started.

After a few days, the pains were becoming more frequent and more intense.

I had to call an ambulance on two occasions because he fell to his knees and appeared to be struggling to breathe. He was given gas and air on the way to the hospital for the pains but it did nothing to help.

In total, we went to the hospital 4 times regarding these pains. Obviously, each time, we explained Steve's medical history and that we were aware of a tumour around the area where the pains were occurring.

Three times, he was told that he'd probably just pulled something playing golf or when carrying one of his nephews when they'd come to visit. We always reiterated that he had cancer on his left lung where the pains were, and on one occasion an x-ray was performed, but this didn't show anything. They looked for further signs of infection following his recent hospital admission for the Staphylococcal infection in his blood but found nothing.

Steve was sent away with bottles of morphine each time, and each time the bottle was almost empty by the following morning. We went to our GP in the hope that they could prescribe something stronger to deal with the pain and he was given different forms of morphine based medication, but nothing seemed to touch the pain he was feeling.

Eventually, we managed to get an appointment with one of the oncology doctors, who arranged a CT scan. The pains had now been happening for around three weeks - none of the pain relief had been anywhere near sufficient and the doctors seemed to be shrugging their shoulders and not knowing what to do.

The CT scan showed that the tumour was pressing on nerve entrances, causing the intense pains.

Further medication was provided, and although it helped more than the previous methods, Steve was still experiencing a lot of pain several times a day.

Finally, in October, a routine CT scan was carried out (these pains had been going on since he left hospital in JULY!) and when we met with the oncologist to discuss the results, he could clearly see how much Steve was suffering and arranged for Macmillan to contact him immediately.

We're now in mid-November and the pain is *almost* under control - he has a combination of different drugs to take, and takes a minimum of 2320mg per day in total - some of his drugs are to be taken as and when needed, so often he exceeds this amount.

As I said in my previous post, the upcoming trial drug Steve will be on aims to reduce all symptoms of cancer, so hopefully the pain, fatigue, loss of appetite etc caused by the cancer will e eradicated. This is due to start within the next week or two, so I'll do my best to keep up to date with the blog and report back on how it's going!

Lots of love,

Xx

From diagnosis onwards...

When Steve was diagnosed, they weren't able to tell him how advanced the cancer was, if it had spread or if it would be treatable.

I can honestly say, 6th July 2012 was the worst day of my life, and Steve's too. I was filled with an overwhelming sense of guilt and helplessness, I don't know how else to describe it. I was desperate to take it away from him and go through it all myself if it meant he wouldn't have to.

It took hours to get to sleep that night, and we woke up in 15 minute intervals throughout the whole night until 6am, when we decided to give up on trying to sleep. I remember waking up and praying that it was nearly morning, and it was still only 2am. Longest night ever.

Steve couldn't bring himself to tell friends and family, so I left him downstairs with Mike whilst I went to our room and made the phone calls. Everyone had the same question - is he going to be okay? And I couldn't give them an answer.

He had MRI and CT scans, lots more blood tests, and his next appointment was on the 24th July. That meant 18 days of pure agony and waiting in limbo for answers.

He kept saying "what am I going to do if they tell me I've got 6 months to live?" and "I really wanted to go to Glastonbury festival next year but I don't see much point in planning that far ahead anymore." It broke my heart to see him scared and wondering how long he had left.

I knew this was a very serious matter, but from day 1 I really did believe he was going to be okay. I told him that, but he probably thought I was just trying to comfort him. I suppose in a way I was trying to comfort both of us. He had everything on his side - young, physically fit, no previous symptoms, a strong mind and a fantastic support network. But cancer doesn't care about those things.

How it all began...

Firstly, I want to talk about Steve's diagnosis and the time leading up to it.

We'd been at the Isle Of Wight Festival in June this year - my first festival and one of the muddiest there has ever been. It was supposed to be a Thursday-Monday trip, but Steve took a slightly drunken fall on the Friday and sprained his ankle. He didn't have the strength in his ankle to walk through thick, knee-deep mud so by Sunday morning we'd decided to come home.

My instincts were telling me we needed to get home ASAP. I've never really paid attention to instincts before, but there was something about this one that made me feel very uneasy.

Sunday was fine - we got home, had nice hot showers and a hot dinner, watched a film and had a good night's sleep - until about 6.45am, when Steve got up the go to the toilet. I was half asleep when he came back into our room and told me that he'd just lost about a pint of blood on the toilet.

Straight away I sat up and told him we needed to go to hospital right away. I didn't know the symptoms of bowel cancer, and at this point hadn't considered that cancer could be the reason for this "episode", but I knew that something like this is your body's way of telling you something isn't right.

There was no way Steve was going into hospital without putting up a fight - "Forget I said anything", "I'll call the doctor if it happens again", "I'm not having anyone examining me". Within half an hour, we were at Bournemouth Hospital A&E being seen by a doctor.

Steve was examined by a few different people and had bloods and blood pressure checked. Everything looked fine, so we were both anxious when we were told he'd be staying in hospital overnight.

On Tuesday 26th July, following a flexi-sigmoidoscopy (long flexible tube with a camera on the end to look inside the bowel), Steve was allowed home. We were told "a number of polyps" had been found and would be sent off for biopsy and that we'd have the results in about 2 weeks. A week later, Steve got a call to say his results were in and he had an appointment on Friday 6th July to discuss them.

This is when he was diagnosed.

Steve had never even considered that he could have cancer - he said that not ONCE did the possibility cross his mind. He thought his diagnosis was "a number of polyps" and that this was the reason for his bleed.

Having dealt with my mother's cancer for 8 years and therefore recognising a lot of the medical terms used by doctors when they were referring to Steve, I had suspected from quite an early stage that this bleed was a sign of something a lot more sinister than we'd previously thought.

I hadn't been allowed the time off work to go with Steve for his results, so his parents went with him. Steve's dad had suffered from pancreatic cancer a few years previously and both parents also had their doubts about the diagnosis, although they never told him that.

Steve and I work for the same company, and he was due to come back into work around 4pm, after collecting his results. 4pm came and went... I was clock-watching and looking at the door, waiting for him to walk through it and tell me everything was fine, although deep down I knew that this was not going to happen. After what seemed like hours, I saw the Mike, the company director (and a very good friend of ours) come into the office and have a hushed conversation with one of the managers - I remember clearly thinking "They're going to tell me that I need to go home now, because Steve has cancer." I went light-headed and woozy, I saw my manager's face appear in front of me and I heard "Gina, Steve is at home, you need to go. Mike is going to take you."

I was silent for the 5 minute car journey home because I was trying to prepare myself for what I knew I was about to hear. I walked into the lounge and my heart broke. My 6ft 2 boyfriend looked at me with terrified Bambi eyes and said "I've got bowel cancer." He fell into my arms and all I could manage was "I know, but it's going to be okay."