Ongoing fatigue was the symptom that prompted Phil Nicholls to have his first medical assessment in years and it resulted in his diagnosis with chronic lymphocytic leukaemia (CLL). 

That was more than 20 years ago, and more recently, after a course of treatment and many years in remission, it was a potential melanoma that turned out to be CLL, which alerted specialists to Phil’s need for more treatment, which he’s still on. 

Lead-up to Phil’s diagnosis with CLL 

Phil was in the police force in Western Australia for 32 years and after two decades of country service, his last posting was senior sergeant at Geraldton, where he was in charge of the station, with more than 100 staff. 

“It was very full on and that’s when I started noticing I was just feeling so tired all the time. I could eat bottles of multi-vitamin tablets and it just wasn’t making any difference,” explained the 75-year-old from Busselton, 250km south of Perth. 

“When I was based in Perth, I used to have a medical check-up every couple of years, and as I hadn’t had one for quite a few years I thought I better make an appointment to see the doctor. 

“He put me through the ringer – blood tests, x-rays, everything, and when I went back to see him, he looked at one of the blood results and said, ‘oh s**t, that can’t be right. Do you mind if I do another ECG? 

“I said go for your life, but I’m thinking to myself, ‘oh s**t, what can’t be right?” said Phil. 

“He then said, ‘this says you’ve got leukaemia but don’t worry, I’m more concerned about other things’. And I’m thinking, ‘well I’m more concerned about the flipping leukaemia, people die from it’. 

“That’s how the journey started.” 

After the second ECG showed no irregularities, Phil asked again about the leukaemia. His doctor’s reply was, “we can deal with the leukaemia, I’m more concerned about your state of mind because you’re really under pressure. We’ve got to get that sorted out”. 

Phil was also referred to a haematologist in Perth, who he went down to see. 

“He did the blood test and the bone marrow extraction, and if he’d shown me the tools he was going to use for that beforehand, I would’ve been out there like a rocket. It was humungous – a massive, big needle,” he exclaimed.    

“The result confirmed that I had leukaemia, CLL. That’s going back to February 2001,” said Phil, who hadn’t heard of CLL. 

“I had to get on the computer and have a look and that was when I saw there were so many different types of leukaemia and CLL was the one I happened to have.” 

Phil described his reaction as, “a little bit numb to start with”, with his initial thinking being, “this can’t be really happening”. 

“I went out and I sat in my car, and I said a prayer… something along the lines of, ‘look God, I don’t know what this means, what I’m in for. I’m not asking for some miracle cure. I’m just asking for your help to get me through this. Whatever I’ve got to face up to, I just need the strength of you guiding me through it’. 

“And from that moment on, I’ve never had any concerns about it whatsoever. Whatever was due, was coming. I could cope with it. That was the feeling I had,” said Phil stoically. 

“Just saying that little prayer put me on the path of feeling comfortable with things, and I still feel comfortable with it.”

Getting on with life after his CLL diagnosis 

“I had a bit of time off work to get all this done, and the superintendent, my immediate boss who was in charge of the region, said, ‘Phil, as soon as you know your results come and tell me’, and I couldn’t have asked for a better reaction.  

“He kept me working in a relieving position until I got the medical discharge on the 28th of February 2002. 

“My haematologist wrote out the report for the police department to assess. What surprised me was that my life expectancy would only be three years from when I needed treatment. 

“Well, I didn’t have treatment until November 2007.” 

When Phil retired in early 2002 with a full superannuation payment, he, and his wife, Cheryll, bought the house at Busselton where they still live today, and his quarterly visits to the haematologist were at Bunbury, a 30-minute drive away. 

“Dr Raven [Phil’s first haematologist] used to come down to Bunbury and that was one of the factors that led us to retire here at Busselton,” Phil explained.  

“Life was more relaxed for me, and I’ve come to accept the tiredness, knowing what’s causing it. 

“Plus, not having the weight of the responsibility of the [police] role I had back then, all made life a lot easier.  

“We were able to do a trip to Canada and the Inside Passage cruise of Alaska, and we’ve been to Singapore. We enjoyed life.” 

During this pre-treatment stage, and having accepted the CLL, Phil said he “was very comfortable”.  

“You get hit with these things, there’s no use fighting or saying why me? It was me. I’ve got it. Just get on with life… that was my attitude towards it,” Phil explained. 

“And I don’t need to be worrying about this medication, that medication. That’s the job of the haematologist to sort out.” 

Phil was monitored for the next six years

From 2001 to 2007, Phil had regular checks with his haematologist. 

“I’d have a blood test, then I’d ring his office and the receptionist would give me all the results, like the haemoglobin and white cell counts.  

“I did a little thing up on my computer where each time I got a result, I put the date and all these results down, so I could have a look at it and see how I was travelling, and I kept those records until he retired in early 2016,” said Phil. 

“I’ve been under my current haematologist since then, but I never get any of that information.”  

Starting CLL treatment 

Around October 2007, Phil’s white blood cell count “was hanging around the 80-90 mark” and that’s when he started his first treatment. 

Early the following month, he had the first of “three or four infusions” of rituximab (MabThera®). These were a month apart, and he had a reaction to the first dose, on November 7. 

“It wasn’t until I got home that it hit me. I was shivering, shaking, and had to lie down,” said Phil. 

“I was the commander of the local sea rescue group at that time, and unfortunately, that evening, I’d organised for all the committee to come and have a barbecue at our place. When they turned up, I was lying on the couch sweating away, so I said, ‘go out the back where the barbie’s set up’.  

“I’d been given some tablets to take in the event of something going haywire, which I took, and within 20 minutes I was up and out there enjoying the fun and frivolity with them.” 

When this treatment had reduced his white blood cell count to 4.5, Phil’s haematologist said, “that’s it, you don’t need any more infusions”. 

“That suited me fine,” said Phil, and he carried on with life. 

When his first haematologist retired and he started seeing his current haematologist, Phil’s white cell count was sitting around 20-30. 

“Because I was going reasonably well, according to her figures, she had got me up to six-monthly check-ups back in 2020. 

“I could never work out how I was travelling, so I was in the dark,” said Phil, “because she never gave me, or sent me, any of the blood test results.” 

Melanoma was the alert to needing more CLL treatment 

“Things started happening not that long ago,” said Phil.  

“I had this constant cough over three, four years, and it was melanoma surgery that opened all our eyes to my needing more treatment.” 

Over the last couple of years, Phil had become “more susceptible to general skin cancers”. 

“I went to my GP to have what he thought was a BCC removed from my right forearm and it was sent it off for a biopsy. The result came back saying it was melanoma,” said Phil. 

He was referred to the Kirkbride Melanoma Advisory service at a Perth hospital where he saw a panel of different experts. They reviewed Phil’s case records and arranged for him to see a plastic surgeon.  

“I thought, ‘crikey, there’s something going on here. They’re not messing around’.”   

Next, he had a PET scan. It gave him the all-clear regarding any melanoma spread but identified a growth at the back of his tongue, so he was referred to an ENT specialist. 

“She poked and prodded, said she didn’t think it was caused by the melanoma, and sent it off for a biopsy. 

“It came back that it was actually caused by the leukaemia,” said Phil. 

So he started CLL treatment again, this time on venetoclax (Venclexta®) tablets, initially one tablet a day for a week. 

“I’d had this nasty cough that just didn’t let up and was really wearing me down, and within a few days [of starting treatment] the cough stopped, gone,” he said. 

“It surprised me, and it surprised my GP, and I think it surprised my haematologist as well.” 

Phil’s venetoclax dose was worked up over a month to four tablets daily, which he continued when he started another course of monthly infusions of rituximab over the next six months.  

“Then the stuff hit the fan, if I can put it that way. I ended up not really being with it, walking into walls and falling over,” said Phil. 

He has no recollection of when his wife took him to the emergency department at Busselton, in October 2021. He was transferred to the hospital at Bunbury for a few days and was diagnosed with neutropenia.  

“My immune system had dropped down to zilch,” said Phil.  

“I started getting these needles – pegfilgrastim – which is designed to activate your bone marrow to start producing more white cells, to boost your immune system. And she [his haematologist] dropped my venetoclax back.    

“I finished the rituximab infusions in December last year [2021] and I’m still on venetoclax, currently on two tablets a day, and the pegfilgrastim injection every three weeks.  

“I’m starting to get a little bit of a cough back again, so I was a bit concerned about that, but it’s settled down again now,” said Phil who is “in limbo”, awaiting the arrival of a new haematologist who is moving to Bunbury from Melbourne. 

When she arrives, Phil can go back to face-to-face consultations, which is his preference, and “Cheryll always comes with me”. 

“I’m going to take in my medical examination results from Dr Raven and say, “look, this is what I really appreciated getting. Any chance we could go down the same path?”. 

“I’m looking forward to catching up with her and discussing a few things about my leukaemia situation.” 

Phil’s been having phone appointments with his haematologist, which he’s not fussed on doing.  

“The trouble is, we get that many things I want to talk about, and I’ll get off the phone and think, I forgot to ask her this or tell her that.” 

 Assistance from the Leukaemia Foundation 

When Phil was doing a fair bit of travelling between Busselton and Perth, then Busselton and Bunbury, he was told he could apply for some financial assistance, “especially being on the pension now, and the way the cost of fuel is skyrocketing”. 

“The Leukaemia Foundation sent me two vouchers totalling $300,” said Phil, which “definitely” made a difference, and he hasn’t had any need for emotional support.  

Around the time of his CLL diagnosis. Phil’s GP in Geraldton put him on antidepressants. Then, a few years ago, he had a long talk with his current GP who was confident Phil could come off that medication, and since then he’s been fine.  

“I get good support from my wife. She just tells me to shut up and stop being stupid. That’s the nurse coming out in her,” said Phil. 

Caring for each other with help from the family 

Four years ago, Cheryll was diagnosed with breast cancer. She had surgery and follow-up treatment, and more recently, a nasty fall knocked her out and broke a section off her C6 vertebrae. So, over the month before speaking to CLL News, the caring role had been reversed again, and Phil had been caring for his wife. 

“Keeping an eye on her is the main thing I’m doing at the moment. We’re caring for each other,” he said. 

“We’ve been through the mill a bit,” said Phil, and looking after them both has been a joint venture by their immediate family. 

Phil and Cheryll have two daughters, one is in Perth and the other lives near them. And they have four grandchildren. 

“Our granddaughter is an ICU nurse at the new Perth children’s hospital. She’s been really good with both of us. She’s been down a couple of times on days off, and her mother, our daughter, has been down a couple of times. 

“We’ve been there as a couple and done that, and we’re still traveling the same path together. Let’s say… all is good. There’s a lot of people in worse situations than us,” said Phil.  

“I don’t look too far into the future because you never know what’s going to come out of left field and hit you in between the eyes and say, “no, you’re not going to do that.”  

“We haven’t really got forward plans. I wouldn’t mind going to Malaysia where they’ve got that orangutan park, but the way travel is in these days of COVID, I don’t think I’d be prepared to risk it, especially at the moment,” said Phil, who had just had his fourth COVID-19 shot. 

“We’ve travelled all over Western Australia with work and holidays – so we’ve been to the places where tourists pay to go, and we’ve been paid to be there – and to Darwin and the Kimberly. 

“We can only look back and say we’ve had a good life,” said Phil.  

Phil’s advice to others living with CLL 

Phil’s believes that “whatever you’ve got, live with it. Don’t let it rule your life, you rule it”. 

“Get the best advice you can from the medicos and just get on with life and enjoy it, because regardless of having leukaemia, you just never know what’s around the corner.  

“Having been a policeman for 32 years, I’ve seen it so often, where lives can change in the blink of an eye and mess up all the best plans you may have had. It doesn’t affect a lot of people, but who’s to say you’re not the next one to cop something out of left field, so enjoy it while you can. 

“We get a lot of enjoyment from our grandkids,” said Phil, towards the end of this conversation, as he was about to head off to pick up his grandson, Isaac, from school. 

“He’s going to have a sleepover at ‘Nana’s house’, which he’s really looking forward to. He was on the phone last night, saying, “you won’t forget to come and get me, will you?’,” said Phil.