‘I know that there are people out there who care and can help, I’ve learnt to talk, talk and talk’ – John’s story

'Prostate cancer awareness Month - John's story' written over a photograph of a wintery field at sunset.

As Prostate Cancer Awareness Month draws to a close, we wanted to reflect today on what this awareness month means. Prostate Cancer Awareness Month is a time where we shine a light on the experiences of those who have been diagnosed with prostate cancer and also raise awareness, not only of this disease, but also of all the support that is out there for anyone who has been affected by prostate cancer.

One of the most important things to remember if you have been diagnosed, is that you are not alone. As a Community we know how important shared experiences can be, which is why we are pleased to have one of our Community members, John, here to share his experience of being diagnosed with Prostate cancer at the age of 50.

John talks not only about his diagnosis today, but about treatment, returning to work and discovering mindfulness as a way of looking after himself.

Here’s John’s story…

At the age of 50, when attending a regular blood test relating to medication for high blood pressure, I requested a PSA test. My mum had suffered with cancer and lost the batter over 15 years earlier.  Cancer therefore was on my mind, although I wasn't expecting anything to be concerned about. I felt as though the surgery was querying why I would request it, feeling highly unlikely that I’d have the disease at 50. Unfortunately, my PSA came back over 13 and after a subsequent test did not improve and I was referred to urology. The DRE was embarrassing but less so than I expected. This was the easiest way for the consultant to determine shape and feel of the prostate. Even after this and subsequent scans I still refused to believe anything was wrong.

‘I didn’t have to wait long for the biopsy, it was uncomfortable but quickly forgotten’

I was placed on a list for a biopsy and that was when I realised that things were more serious than I first thought. I didn’t have to wait long for the biopsy, it was uncomfortable but quickly forgotten. Work was really good about it all. My team thought I had a week off work.

On my first day back in work I received a call from the hospital with an appointment for my biopsy results. My wife and I went to the appointment in the morning and were told it was cancer. A number of treatment options were explained to us; surgery, brachytherapy, radiotherapy or active surveillance.  I remember the specialist nurse repeating over and over that they deemed this as curable.

The head of urology had some time later in the day and was willing to see us, so we went to a local café for some lunch to wait for the appointed time.  Brachytherapy and radiotherapy were discounted due to my age and longer-term risks. Active surveillance involved regular biopsies, scans, bloods etc. In discussion with the consultant, we decided that surgery was the best treatment for my situation.

‘On my first day back in work I received a call from the hospital. My wife and I went to the appointment in the morning and were told it was cancer, a number of options were available’

Within a fortnight of the biopsy I returned for surgery (laparoscopic prostatectomy). I returned home with a catheter which, remained in place for three weeks. During the appointment to remove the catheter we had the results of the pathology, which indicated some uncertainty about how contained my cancer had been. I had to wait a further 6 weeks to see what my blood tests showed.  Things healed well and quickly. Continence was initially an issue but soon settled.

After 7 weeks I returned to work. During my time off, I had no contact from work, nor any messages of good wishes nothing.  Being a male dominated department, I put that down to male embarrassment.

‘During the appointment to remove the catheter we had the results of the pathology.’

My follow up blood test showed no improvement. I was again told that radiotherapy to the prostate bed would still offer a cure. I was then sent for a scan to determine if I my cancer was locally advanced or had spread further. If it was local then radiotherapy could still be a cure. The hospital had just had approval to start PET PSMA scans. I was the first patient to benefit. The scan showed low volume metastasis to my ribs. This was when I realised that I was now classed as incurable.

 I was advised that the stampede trial showed better outcomes with early chemotherapy.  This was when I really thought my time was up. Thoughts around how my disabled daughter would cope without me, how my other two children would suffer, guilt over arguments with my wife who had been super supportive.

‘Work were super supportive, arranging my work in a manner which removed all pressure and allowed me to work what I could from home’

Within no time of returning to work I was off again for chemotherapy.  Again, work was supportive; arranging my work in a manner which removed all pressure and allowed me to work what I could from home and only go into the office once every three weeks around my cycles.  The first few cycles were uneventful. I never drove in the first week after chemo, it soon became apparent that driving in the first two weeks was not advisable (my family kindly informed me).

As the cycles progressed things got more difficult; I had to really think and concentrate on the simplest of tasks.  Cycle 4 was amongst the worst. I had unbelievable stomach pain and was prescribed Tramodol which helped. One evening my wife went out and I was left with my son who was 17. I was sat in the chair feeling very uncomfortable, I decided that the best thing was to go and rest in bed, I stood up and can’t remember any more until my son was shaking me asking if I was okay. Apparently, he came close to calling for an ambulance.

Photo of John sitting at a table with a chocolate birthday cake in front of him candles lit.

‘I decided that the best thing was to go and rest in bed, I stood up and can’t remember any more until my son was shaking me asking if I was okay’

I went up to bed and rested and was okay. I had an issue with burning eyes (peripheral neuropathy) which sounds a lot worse than the reality. At Christmas we invited some friends over. I was feeling a bit ‘out of it’. I nearly poured my non-alcoholic ginger beer drink over my food, thankfully my friend warned and stopped me before ruining my food!

‘I really got into a routine, I realised days 4, 5 and 6 were the worst and that symptoms improved. This meant that I was able to deal a lot better with issues knowing they were only temporary.’

Typical days of chemotherapy involved getting some breakfast around nine, taking it back to bed, watching TV or just sleeping until around 10:30. On good days I’d drive to Tesco to choose something for lunch; other days I ensured I went for a walk. Sometimes I never made it out of the street before I needed to return home.  I really got into a routine, I realised days 4, 5 and 6 were the worst and that the symptoms improved after that. I was able to deal a lot better with issues knowing they were only temporary. Jelly, baby shower gel, corsodyl tooth wash were key to my navigation through chemo.

‘Jelly, baby shower gel, corsodyl tooth wash were key to my navigation through chemo.’

Work was really supportive on my return but COVID was just around the corner. I was eased into work. Over time I became frustrated; fatigue had hit, I was struggling finding my way back into work.  Fatigue meant I was at my wits end, not always able to deal resiliently with situations that arose. I became a bit short with colleagues, struggling to fit back into a changed work environment and a perceived change in role; a perception of demotion.

‘Changing structures in work, emotional impacts of hormone therapy, a disconnect due to COVID all caused undue stress and difficulties which I really struggled with.’

Changing structures in work, emotional impacts of hormone therapy, a disconnect due to COVID all caused undue stress and difficulties which I really struggled with.  During an unplanned call to my G.P. I was offered antidepressants. I didn’t think it was necessary but it didn’t take long for me to change my mind. I realised my difficulties were manifesting themselves in a very unhealthy manner. 

It was around this time that a manager spoke to me about my attitude in some meetings. I hadn’t received a return-to-work assessment and felt aggrieved over job changes. I was angry over what cancer had stolen from me; what would have been my role had it not been for cancer but I also had to acknowledge work had supported me.

‘I was angry over what cancer had stolen from me; what would have been my role had it not been for cancer. I had to acknowledge work had supported me.’

Practically, I just felt a disconnect which was exacerbated due to COVID. The hospital offered two separate courses. The first was physiotherapy in the form of Nordic walking. This was the outlet I required, indeed a lifeline. It was more like psychological therapy. Talking with others adjusting post treatment, I started to realise some of my feelings regarding cancer and its impact were not unique. A further course, ‘Hope again’, emphasised the importance of readjusting my expectations of myself. I needed to look after myself a lot more, sleep was more important, as was having down time. I appreciated the benefit of walking.

‘Nordic walking, this was the outlet I required, indeed a lifeline, it was more physiological therapy talking with others adjusting post treatment.’

I realised I needed more help and this was when I discovered and signed up for a mindfulness course with a local charity. Cancer had consumed me; every day I thought about cancer, every day I wondered how long before hormone therapy stopped working, how long I had left on this earth, or how my family would cope.

 ‘A further course ‘Hope again’ emphasised the importance of readjusting my expectations and being more kind to myself.’

I had prepared a will, documented my pensions and prepared for the worst. I managed to move on from initial difficulties, not totally accepting the changes in work but realising how good they were during my treatment and the benefit of staying. I felt I would soon require more treatment. I struggled and still am struggling to put ambition to one side; I never was a nine to five guy. I always wanted to put that extra bit into work, to understand more of the operational details, provide better solutions. 

Prior to diagnosis I felt my career was going so well. Cancer had robbed me of opportunities. I was in despair, I wanted more from work but had less energy. I managed to overcome most issues and put disappointments behind me. I felt I had moved on. Things were not ideal but okay. A local charity (‘We Hear You’) offered a mindfulness course which I was about to start.

‘I started the mindfulness course and things were improving, then out of the blue I received a complaint from work’

I started the mindfulness course and things were improving, then out of the blue I received a complaint at work. It brought into question all my work relations; I questioned my whole being. My body as changing due to hormone therapy, I felt my personality was changing, my confidence was sapped, my emotions were all over the place. I wasn’t the man I used to be.

‘I realised I needed help, I spoke more with my wife, she turned out to be the angel I never properly appreciated.’

A photo of John and a family member on a walk in the countryside, both are smiling at the camera and wearing warm hats.

I realised I needed help. I spoke more with my wife, she turned out to be the angel I never properly appreciated.  I’m still struggling to find my role in work, balancing the old and new me. I’m still in torment but I know that there are people out there who care and can help. I’ve learnt to talk, talk and talk.  Even this blog expressing my feelings, believing that someone wants to listen, helps!

‘I’m still in torment but I know that there are people out there who care and can help, I’ve learnt to talk, talk and talk.  Even this blog expressing my feelings, believing that someone wants to listen, helps!’

Realising that I needed help, I jumped at the chance to take part in mindfulness. It’s not for everyone, lots of it is common sense. Unfortunately, in my 50 years the common sense of looking after myself had failed. I’d focused on family and rarely on myself and when I did it wasn’t always constructive. The course lasted for eight weeks. I realised that I spent a lot of my time on auto pilot, which only served to add to my stress levels.

‘Unfortunately, in my 50 years the common sense of looking after myself had failed. I’d focused on family and rarely on myself.’

I learnt how to take time each day to practise mindfulness, especially if my mind was racing. I found ‘body scanning’ really helpful in refocusing my default mode of racing to the end, racing to conclusions before time.  This was the case during treatment; racing from diagnosis, surgery to chemotherapy, I needed to learn to slow down. The cancer journey is not one I want to race to its conclusion.

‘This was the case during treatment racing from diagnosis, surgery to chemotherapy, I needed to learn to slow down.’

We want to thank John for sharing his experiences with us here today. No matter what you are going through, the Community is here to support you. Our ‘Prostate cancer’ group is a safe space online where our members come together to support one another. John also talks through his blog about his experience of returning to work after treatment. Do remember if you need any support with returning to work, our Work Support team are here for you. You can call them Monday – Friday 8am-6pm on our Support Line. That number is 0808 808 00 00 or if you would prefer you can also live chat with our Work Support team via our webchat facility by clicking here, and selecting ‘My Rights At Work’ from the dropdown menu.

Anonymous
  • Thanks for putting your story down so well John. The feelings you describe are very familiar to me, the cancer and its treatment affect how you see yourself, affect your emotions and changes the way you view the world. You are right to find physical and emotional outlets to help you cope. Like you I was ambitious, hard working, doing too many hours and not looking after myself properly. You need to be more selfish in some ways to protect yourself. It’s great you have a supportive wife, mines is too and has been a rock. I often think about how tough this is on our partners. Take care and I hope you remain well for many years to come.