The cancer pathway – one patient’s experience

Christchurch rental car manager Norm McDonald was fit and well when he first noticed blood when going to the toilet at the beginning of 2014.

He thought it was probably piles or something minor but decided to see his GP, who referred him for a sigmoidoscopy which could show what was going on in his lower bowel. The investigation at Princess Margaret hospital 2 weeks later confirmed a rectal tumour and was the beginning of Norm’s ‘cancer pathway’ – a journey that would continue for the rest of the year.

‘I had an appointment with Frank Frizelle, the cancer surgeon, a couple of weeks later and he talked me through what would happen next. He explained that it was fact-finding first and why it was important that they did that.

‘When I was told in February that they wouldn’t be doing surgery until around mid-July I was thinking “Is this thing going to continue to grow?” but Frank reassured me.

‘He used language I could relate to – an analogy of painting, where surgery was the top coat but all the preparation had to go on before.

And he told me that it would be a 12-month process so I knew from the start what was ahead of me.’

What came next was a colonscopy, an MRI and a series of blood tests to assess the full extent of the tumour and whether the cancer had spread. In parallel, the team of specialist doctors, nurses and other staff who would contribute to Norm’s care were reviewing his case, culminating in a multi-disciplinary meeting to plan his treatment.

Treatment started with 6 weeks of combined chemotherapy and radiotherapy at Christchurch Hospital – but that didn’t begin for 3 weeks.

‘They need to map it out, they needed days to set up the radiation plan on computers, they had to look at the results of the various scans and work out exactly what was needed and then slot me in.

‘That was the time that was really like limbo-land. Although I hated it, I was able to cope with it because the importance of the preparation had been explained to me so well.

‘One thing I would give a huge 5-star rating to is the cancer nurse coordinator. Karen rang and introduced herself before I had my appointment with the surgeon and she’s always there when I have a concern or a question; she’s extremely knowledgeable and supportive and sorts out what I need with no waiting.’

Norm says that he ‘breezed through’ his 28 chemotherapy and radiotherapy treatments that meant daily trips to the hospital from the beginning of April until mid-May while he continued working.

He saw the oncologist weekly and had regular contact with Karen while the radiation oncologist oversaw the radiotherapy.

‘It was only in the last few days that I started to feel really lethargic. I remember there was one constantly cheerful elderly woman who I used to see who was also having radiotherapy – and I thought if you can cope with this, then I can too.’

An appointment with Professor Frizelle followed in early June, with surgery scheduled for July 20 and a further CT scan in the interim.

But a week before Norm was due to be admitted to Christchurch Hospital for his surgery, he got a call to say that the date had been put back.

‘There was somebody who needed surgery more urgently than me, simple as that. I was ready to go and it was frustrating but, even with the delay, everything was explained so well to me that I felt OK about it. I knew that this tumour had been 2 or 3 years in the making and a few days wouldn’t be an issue. I always felt reassured that I was getting the care and the information I needed,’ he explains.

‘The key thing was the quality of communication. Without that the whole process would have been much more of a problem.’

Surgery was carried out on August 1, removing the rectal tumour as well as a second tumour in his abdomen detected by earlier scans that turned out to be benign.

After 12 nights in hospital ‘where the nurses were fabulous, but it was so hot I was desperate for them to let me out’, Norm was allowed home. His recovery wasn’t trouble-free – part of the chest-to-groin wound split open and he developed a urinary tract infection after being catheterised but had support at home from his GP and the stoma nurse.

The first follow-up appointment with the oncologist on September 1 didn’t provide the good news after surgery Norm had hoped for. 3 of the lymph nodes removed during the operation still showed signs of cancer, so what follows now is 5 3-week cycles of oral and intravenous chemotherapy starting in mid-September.

‘It’s a whole year of treatment but because they were honest about that from the start, there really have been no shocks. There have been times where I’ve thought “I’m in real trouble here” but I know they’re being thorough and there’s a strong sense of shared information and collaboration.

‘I’ve been amazed at how well everything has worked. There are many companies that would benefit hugely from having such high levels of clarity and information-sharing.’

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