Since my husband’s diagnosis of advanced prostate cancer in 2008 I have spent a lot of time researching the condition. The PCRC’s website was one of the first I came across, and it is continually heartening to learn about the depth of research being undertaken and read about case studies and all the efforts of supporters to help further future treatments for advanced prostate cancer. In a previous issue of ‘Horizon’ you invited readers to send in their experiences and we were interested to read others’ personal accounts. I thought Ron’s experience (he is happy for me to tell his story from my perspective) might be of interest and helpful to others so I enclose an account of his story so far.

 

In November 2008 Ron had a fall when getting into the car. He broke his hip and after investigations in Derriford Hospital, Plymouth we discovered it was a pathological fracture from secondary bone cancer, prostate being the primary. He had had no previous symptoms, other than having seen his GP a month earlier for some recent joint pain, put down to the manual job he had taken up two years earlier. 

At the time of diagnosis he was 64, loved his job as an NHS courier, transporting records and samples (ironically including those destined for PSA tests) and pleased to have been asked to stay on until 70. When admitted to hospital his PSA reading was 253 with multiple bone metastases. Reeling from the shock, I do remember an empathetic A&E doctor who gave us hope that there were treatments available and that Ron had a future. I would have been glad at that time to know I would be writing this account, eight years later.   

Cancer treatment had to wait for the surgery to be completed. Major (subsequently Lt Col) Adams of the orthopaedic team at Derriford Hospital Plymouth, offered Ron a specialised hip prosthesis which would give greater protection to the femur, rather than a conventional hip replacement. It meant waiting for the prosthesis and availability of a second surgeon, so Ron spent a week bed-bound with the broken hip. Thankfully morphine on demand (and his existing condition of epilepsy which impacts on his memory) mean his memories of that time are vague. My manager was supportive in allowing me time to visit Ron and I was anxious to keep up to date with his treatment, especially as he could not always remember what he had been told. 

                               

Dr Daniel (consultant oncologist) visited Ron on the ward but there was little he and his team could do until the surgery had settled down. I didn’t do much research on advanced prostate cancer at that time as we had so little information to go on, but Lt Col Adams continued to be tremendously supportive.

Ron’s surgery went well and as his orthopaedic rehabilitation continued, he attended the Oncology clinic and we met Dr Daniel and his team when I was relieved to finally have the opportunity to ask questions. Ron first had a few sessions of radiotherapy on the site of the surgery and suffered no side effects. His main treatment was to be hormone therapy - 12 weekly injections of Decopeptyl and this is still ongoing. Although loathing needles (and Decopeptyl requires a large needle!) this seemed better than chemotherapy. The hormone treatment gives him side-effects such as flushes, mood swings and fatigue. Ron’s epilepsy is well controlled with medication but also gives him fatigue, mood swings, headaches and lack of concentration, which complicates things.

Ron has extensive bone metastases, in addition to the hip. Since his first clinic appointment, he declined a prognosis and I was in no hurry for one either. I knew that patients with this disease respond differently and I didn’t want to get paranoid about numbers, although it was natural to wonder how many more Christmases, birthdays etc we were going to have together. I was lucky to be granted unpaid leave from my employer the VOA (part of the Civil Service) for a year which helped us both cope with the situation. The rehab for the hip replacement provided a diversion from the worry of the cancer diagnosis and as my sister was an NHS physiotherapist at the time of his diagnosis, with the agreement of Lt Col Adams she took over his post-surgery rehab. It was wonderful to have that personal support.

Ron greatly values the care provided by the medical teams at Derriford and our GP surgery, and support from family and friends but has been reluctant to undertake much research or attend courses, group therapy etc. Although full of trepidation, I wanted to get any information and support on offer but I understand Ron is different and it is his cancer after all. I visited the marvellous Macmillan Mustard Tree Centre at Derriford and browsed the mainstream online cancer charities. These gave me comprehensive information and practical ways of living with the disease, but I was glad to find the Prostate Cancer Research Centre site which seemed particularly relevant to Ron’s advanced cancer.  I find the ‘challenging science’ articles in the magazines especially interesting which highlight the difficulties of fighting such a complex disease. We are both immensely appreciative of all the research being done in this area and do what we can to support the extraordinary efforts of fundraisers.

As a carer, looking back I think I should not have tried to research for all eventualities, but just taken things as they came. Not all patients will follow the same treatment regime, or respond similarly, or get the same side effects from medication, so it is easy to get unnecessarily overloaded with information, worry or expectations. I have concluded that it is best to look in detail at the information that helps at a particular stage, and just note where to find other information that you might need in future. For example in the early weeks after Ron’s diagnosis, I collected reams of information about treating secondary bone cancer symptoms, but by the time I needed it, it was six years old and had been updated.

I am interested in complimentary therapies and nutrition and wanted to help Ron in any way I could, but as a lay person, researching this is fraught with difficulties. I understand the difficulties of evidencing natural compounds and supplements in cancer treatments and I appreciate the wonderful resources and treatment available to NHS patients but conventional advice seems conservative, not even going as far as basic supplements. When frightened and desperate, it is easy to be sucked into the ‘snake oil’ route and have unrealistic hope, or become obsessive about food and environmental issues. On the other hand, I believe it is important to support the body’s immune system by improving lifestyle and diet and using supplements where appropriate for an individual. The approach seems to vary across the UK and we seem to be behind other countries in terms of integrative cancer treatment.  Macmillan and other mainline websites are good starting points however.

Ron was not strongly motivated in this area, so I resigned myself to just upping our game in terms of healthy eating and levels of activity. Ron dislikes most salads and cooked vegetables, whereas he loves red meat, dairy and sugar.  We therefore reduce the latter and try to ‘eat a rainbow’ including soups and a daily fresh vegetable juice or smoothie (more veg than fruit and with added water). I needed to do something positive to help him fight the disease, and not just be a bystander so it helps me to know that Ron’s antioxidant ‘credit’ is being boosted daily by the green drinks and the few salads he enjoys such as tomatoes and avocado with fresh basil and black pepper.  We have always used mostly eco-friendly toiletries and household cleaners to reduce our carbon footprint as well as our toxic burden so I continued with those. When Ron’s health stabilised in 2009 we fulfilled a long-planned dream and acquired Henry, a rescue chocolate Labrador, now in his 15th year. He gets us walking regularly and has been a wonderful companion, especially to Ron while I was working full-time. Luckily he also took happily to the water in our motor cruiser.

From that initial reading of 253 in November 2008, Ron’s PSA dropped to 4.2 by February 2009 then 0.48 by November 2009.  It stayed in single figures until August 2013 which was fantastic, despite him having some ups and downs for various side effects in the intervening years. Anxiety levels before each blood test and clinic appointment were high yet the treatment was working and we were so thankful for the results. 

Ron’s hip healed well but he had occasional pain from the prosthetic and his changed gait meant postural pain elsewhere. Despite the low PSA readings over many years, any new twinge, ache or pain rang alarm bells and worry that the cancer was developing, however further bone scans showed little change (the comment on a 2014 scan was ‘an impressive response’). Nevertheless, those alarm bells often send us back to the GP seeking answers which by the nature of the symptoms can rarely be resolved and we are bounced to and from the clinic and the GP on occasions. Ron had periodic physiotherapy sessions to address joint pain which helped.

All this anxiety has thrown long shadows over our lives, but we try not to let the disease to take over completely.  Everyone’s approach to diagnosis and treatment will be different, and we don’t feel the need to have a ‘bucket list’ for example, although we are full of admiration for those who do, or who take up travelling or adventurous activities and raise funds for charities. The diagnosis obviously brought our mortality into focus however so we value each day more than ever and over the years have simply continued to do the things we love. We feel lucky to be together to enjoy family occasions, our hobbies, exploring the UK on cottage holidays, visiting steam railways and walking Henry on Plymouth Hoe. 

As time went on and Ron’s PSA readings started to fluctuate, one member of the oncology team remarked that having prostate cancer required nerves of steel to cope with the ups and downs. By the end of 2014 it was 25.7 and chemotherapy was suggested but Ron was very reluctant and additional hormone and steroid treatment was offered in the interim. In 2015 I resigned from work so that we could spend as much time together while we (including Henry!) were still fit enough to enjoy ourselves.

By December 2015, although he didn’t have any new symptoms, Ron’s PSA had more than doubled to 70. This result generated a similar level of fear I had felt seven years previously. We knew that chemotherapy would be the next step and his first outpatient session was in January 2016. We were provided with a lot of information about the therapy and contact numbers from the clinic and Macmillan, including for out of hours queries, which made us feel very well cared for. I started researching again as we anxiously awaited for side effects but they were manageable, the worse ones for Ron being the needle phobia and the fatigue and for me, the anxiety concerning possible infections (I developed an obsession about monitoring his temperature and using antibacterial wipes). He had one short hospital visit for a chest infection, thankfully only minor. 

After the third infusion his PSA was 120 but we were told not to worry, as spikes were not unusual. He was sent for a CT scan in April 2016 and although there seemed no significant change to the bones, the bad news was that a groin lymph node was affected. It wasn’t known however if this was recent or had been there much earlier (he hadn’t had a CT scan since 2008). His PSA was now 178. We were told that as chemotherapy wasn’t proving to be effective, the treatment approach was to change so chemotherapy was stopped and Ron was prescribed Abiraterone. We left the clinic that day with mixed feelings – dismayed because the chemotherapy hadn’t worked , yet relief that we could forget about the three-weekly cycles of chemo. We were enormously grateful for all the research that resulted in another option for him. 

Although there was some evidence the rise in his PSA was slowing, it climbed above 280 in the summer and Ron was then admitted to hospital for a new patch of disease in his right femur and for hypocalcaemia. The decision was taken to discontinue Aberaterone which was so disappointing, as we had high hopes for at least some improvement. I had felt quite irrationally, it was a good omen that the drug information included illustrations of an aged biker (Ron loved motorbikes had sold his last classic bike a few years before diagnosis). After discharge and slowly getting back to his ‘normal’, by the end of the month a sudden increase in chest pain resulted in another hospital admission – this time for pneumonia.

It sounds as though this year has been nothing but clinic and hospital visits, but although our diary is peppered by those events, in-between we are still living our lives (Ron is very skilled at DIY and despite his increasing problems this year, still managed to repair some plumbing in the bathroom!).

Home again from hospital, the last few weeks have seen him recover, not least because of a referral by his GP to our wonderful local hospice, St Lukes, for pain management as an outpatient.  This has been effective and reassuring, with that most valued of things – being given the time to properly discuss and decide on his tailor-made treatment with Dr Jeff Stephenson and other members of the team. Ron was having consistent pain in his back and side (was this owing to the metastases, or inflammation following the pneumonia or perhaps owing to a recent fall when he accidentally tripped on steps; who really knows) but the new medication has made a huge difference. It really is crucial to find the best combination for individual patients and means we are now getting out and about again, Ron’s appetite has returned and he is sleeping better. He has been able to reduce his liquid painkiller (oxycodone hydrochloride) to a low level just to keep things under control. Now in the pain management clinic loop, Ron is due for a catch-up this week, and also awaits a scan to investigate if the back pain is a spinal metastases problem. The results should inform his next oncology clinic (which unfortunately has been postponed twice). He is still being very well cared for. 

 

Over the years Ron has used lots of non-medicinal treatments that improve his general levels of comfort. Hot wheatbags in different shapes for pain in neck and shoulders, back or stomach. Cold packs and cold gel strips for headaches (he gets these partly owing to side effects of epilepsy medication). To avoid taking any more medication, he treats a blocked nose with Olbas oil and hayfever with HayMax (a natural nasal barrier cream). Keeping hydrated is important so Ron drinks a lot of water (sparkling and soda water to ring the changes) and combined with occasional prostate problems he sometimes gets caught short. Therefore when out and about (and also at the bedside to save frequent night trips to the bathroom) he uses expandable, reusable urine bottles which can be used discretely under a towel in the car. I keep a couple of bags packed with a bottle, towel and wet wipes all ready to go. Since the chemotherapy sessions I have also kept an overnight bag packed which proved helpful for his sudden hospital admission.

Since January 2016 when Ron started chemotherapy, I have kept a diary to record dates, medication and side-effects and continued with this when the chemotherapy stopped. I separate the notebook into three sections; the first lists all medication (which is very extensive) – when first started, changes in dose etc. Lately it has been a good place to record the important timing of painkillers. I keep Ron’s latest prescription printout in that section too; helpful for hospital admissions and ensuring branded or generic versions are consistent (ensure it is absolutely up to date if handing it over without explaining in person). The second section records main dates of hospital appointments, GP/nurse visits, scans, etc – this has often proved invaluable when medics ask questions (although patient records are becoming more integrated, its quicker to refer to the diary than for them to look up Ron’s notes). I copy the first two sections into the next new notebook. A third section is a daily diary; as little or as much detail as necessary, recording symptoms, temperatures, calls to and from medics, discussions with clinic team or GP, any additional treatments, etc. When taking multiple medications it is important to track potential side effects, although I sometimes found it counter-productive to read the information leaflets as they can cause unnecessary anxiety. Our pharmacist was always very helpful on these occasions – we recommend other patients establish a good relationship with theirs.

Coping with the stages of this disease gets no easier, and is often exhausting, but having lost friends to it, we are continually thankful for Ron’s response over the years and for the expertise and care he has received from his GP surgery, our local pharmacist and the orthopaedic and oncology teams at Derriford Hospital, and now most recently, St Lukes Community Team, in particular our wonderful nurse Debbie Hutchinson. 

 

Judy Morse

20 September 2016

 

Postscript: Ron had a few more hospital visits in the autumn including an investigation which showed the cancer had spread to his liver. Debbie and colleagues arranged for aids to be installed at home as Ron’s mobility was reducing. These were very helpful and enabled him to stay independent with a little input from me. He had been involved in a successful fundraiser for St Lukes at our local pub in November which he thoroughly enjoyed and we had a good Christmas on the whole, but as the New Year progressed, he became increasingly tired and needed more pain control. We still managed to get out in the car to visit our wonderful Plymouth waterfront – and the pub – and enjoyed seeing family and friends. We celebrated Ron’s 72nd birthday and 34 years of marriage in March 2017.  He was sleeping more and more and the support of Debbie and St Lukes was always there, but I was able to care for Ron myself until it became too much for me to mobilise him safely on my own. We began to have wonderful daily carers whose skill and humanity kept him comfortable and dignified; he really appreciated their care and gentle humour. And Henry loved all the fuss he got from them too! Just a week after they started, Ron died peacefully at home in his sleep on April 5th. Henry followed him two months later.

Since Ron’s death I often think about the years since his diagnosis. Would we have done anything differently? Could we have done more to get involved with his treatments, asking questions, exploring other avenues?  I know the limitations of the NHS, but I believe overall Ron had wonderful treatment to which he responded very well for over seven years. The variation in availability of treatments across the UK perhaps raises the most questions – I suspect for medical staff as well as patients and families – when one becomes aware of different approaches to treatment in different localities. That much is evident from readers’ experiences reported in Lifeline magazine, and as your articles demonstrate, continued focused research is vital to increase survival from this most complex of diseases.

 

28 June 2017