Stephen on managing the side effects and mental impact of prostate cancer

‘Oh no!’ I thought, ‘I’ve reached that age where it’ll be all about weight management and blood sugars and exercise.’

My bloods were taken and then, within days, I was asked to come back  to speak with my GP, he told me that my PSA level was higher than usual - 7.8 - and I was sent for further tests to rule out anything sinister. ‘Sinister’, I said and he replied ‘Well, bowel or prostate cancer”. Apparently, a normal prostate level should be 4.

The words ‘PSA level’ meant nothing to me. I didn’t know a thing about prostate cancer at that point. There was no family history of prostate cancer that I’ve ever been aware of. At work I was surrounded by a lot of male colleagues but nobody ever brought that subject up. But soon I would unfortunately become a prostate expert.

After a CT scan, I was invited back to my local hospital urology dept for Biopsies procedure as a morning visit. Not what I expected or anticipated for - with no pain relief it was a very uncomfortable procedure.

Receiving the bad news

Soon after I received a letter inviting me to an appointment for my results of CT and biopsies. I stupidly had told my partner to stay at home and that I’d go on my own, probably as I wanted to protect her. I was a typical bloke and thought I’d manage on my own and plough on.

On arriving at the hospital waiting area I could see three other male patients waiting  with their partners, I felt dread as it then hit me that if I received bad news I was on my own.

I was called into a room and initially spoke with the nurse who then said a consultant would be in soon. As soon as he entered the room I knew immediately by his body language that he’d have bad news for me. He then he told me quite straightforwardly ‘You’ve got prostate cancer.’

I listened as he explored options for treatment and as I had a stomach hernia as a side effect from Gallbladder surgery sometime ago he said I could not have the prostatectomy  as the robot would not know of the said hernia. ‘Robot’ I replied. ‘Yes it’s a very technical machine that programmed to remove the prostate under general anaesthetic,’ he said.

So, I was told I would have to be referred to The Christie for treatment. And that was it. I wasn’t given any leaflets or information to take away. So I left the hospital feeling very numb, having to then drive home alone and worried how I was going to tell my partner and how would she react and what about my family and my children I felt isolated and pressured.

Preparing for treatment and facing overwhelm

I received a letter to attend The Christie and meet with the consultant and specialist nurse. This time my partner insisted she was coming with me.

On my visit I spoke with the team and explored my treatment options, I explained how uncomfortable the initial biopsies were at my local hospital recently and I saw her look change, I asked what wrong and she said, I would need to have that done again as brachytherapy operation, initially I said absolutely not, but she and the male specialist nurse said I would have general anaesthetic and I would only be in for one night.

It was very overwhelming as initially I didn’t realise that everyone in that room was there for me and they only had my best interests.  But, I did feel I was sidetracked and encouraged to agree to what I had. On reflection they were all correct and I was wrong.

In my room was a team of three speaking with me and my partner. I was so pleased by their care and time and how professional they were about me, the patient. There was even a visiting doctor from Australia who was working and gaining specialist experience at The Christie and told me I would only receive this treatment here and it’s world class.

The specialist male nurse told me to collect a prescription on my way out which would have tablets I would need to start taking that day for a month, along with an injection that I was to bring back with me next week for hormone therapy.

He told me what was going to happen, that this initial stage would switch everything off and that it stops the cancer potentially spreading, side effects were hot sweats, less testosterone, fatigue and erectile dysfunction, and he was correct.

It was him that told me about Maggie’s centre just being across the road from The Christie and I should visit.

 I’m genuinely so glad he did as I’ve never looked back and the support I’ve received has honestly kept me going.

Coping with the side effects of treatment

So, I had medication androgen deprivation therapy (ADT), Hormone injection, followed by a brachytherapy operation and then 20 sessions (one per day Mon-Fri) of high dose radiotherapy.

Erectile Dysfunction

Before I started the ADT the consultant said: ‘I must warn you, this will turn everything off in the trouser area for the next six months’. Reality is: erectile dysfunction has been an issue for me through to this day, a whole year later.

Hot flushes

The hot flushes are really not something you’d expect from prostate cancer treatment. My partner has been so supportive and ironically her doctor recommended she start taking HRT in her late 40’s. We laughed often at nights how our symptoms were identical of hot sweats and needing a wee often in the night.

Urinary urgency

My partner used to joke and say I was like a camel, that I could have a wee before I went to bed and not need another until I awoke the next morning. Not anymore. The treatment I received meant I had frequent visits to the toilet in the night - we are talking 5 or more - and broken sleep.

For the first four or five months it was like a constant wave and only now a year later is it improving especially if I take a Tamsulosin tablet received by the Christie post treatment. These keep everything 'free flowing', as if I miss taking a tablet going to the toilet is sore, with the pressure and sensation of having a wee but nothing happening.

When we go out even for food shopping, the first thing I’d do is find out where the toilets are, as now for me when I need a wee I really need a wee.

My prostate pals from the prostate support group at Maggie’s who’ve had similar treatment who now wear male panties laugh with me - they can have a wee anywhere now and never get caught short!

That's great, but I’m only 53 years old and wearing incontinence pants is something I was shying away from.

I’ve had lots of awkward conversations in shops asking if I can quickly use their loo, and quietly explaining I have cancer. It’s especially awkward in coffee shops where it states loos are for customers only or in clothes shops where there are no public facilities. You even get suspicious looks from members of the public as you quickly make a beeline for the disabled toilet or even exit from one.

Fatigue

Fatigue is another side effect I’ve started to have a lot of issues with, and gaining weight. I have days where I can do normal activities, wash the car, cut the grass go for a walk even small DIY jobs. BUT the next day it’s like I’ve then been switched out on standby. The fatigue is something I was never prepared for, and also my sleeping pattern is very poor and I stay awake until early hours not able to rest.

Recently I had to move house, and that really took it out of me. So I had to get removal men in to finish the work. That made me feel a lot older than I am because I should be able to do this sort of stuff. I should be able to fix my car or cut the lawn without it completely exhausting me.

My pals at the Maggie’s prostate support group say it’s like superman day, where you can do everything and feel like you did before the diagnosis, but then the rest of the week you’ve had kryptonite and have nothing to give.

Mental impact

Having issues with hot flushes, going to the toilet more, reduced sexual function and not having the energy to do tasks, really does impact you. It makes you feel like you’re less of a man.

During treatment I was always worrying about the cancer spreading. And since then my sleep has been really, really poor. Sometimes I’ll be up until 2am, mulling things over and overanalysing things.

My mood has definitely changed. I’ve become a lot more insular, had mood swings and don’t want to go out as much. My partner catches me all the time just starring out the window rather than focussing on what’s happening in the room with me.

I find I don’t engage with conversations as much as I used to and I’ve had less patience for people. And, that’s not me! So that’s also upset me because that’s not the sort of person I am.

 Even vital time off at weekends where previously we’d be out for the day spending time together and now I just don’t have the motivation to go out. This has impacted on my relationship.

Accepting help at Maggie's

My oncology team were the ones who told me to come to Maggie’s. I came in and met the cancer support specialist who runs the prostate group. Straight away I felt at ease. I didn’t feel judged or that I was taking up their time. It was a calm and safe environment.

But because I’m the kind of person who wants to help other people, straight away I was telling the cancer support specialist about how I could help in the centre, how my career experience in teaching, education running hair salons could be useful, how I could be a volunteer doing this and that. Then she reached out and put her hand on mine and said: ‘Let us help you first.’ To this day that can still make me cry.

So I started coming to the prostate group and it felt so reassuring. And, I’ve been coming to that group every month. It’s so interesting to listen to what the other guys are going through and sharing advice with each other on how to handle the side effects of treatment.

There’s a man in the group who is just entering into a new relationship - and I’ve just got married - so talking to him about how to manage erectile dysfunction has been really important.

Isolation from friends and family, and 'cancer ghosting'

What’s hit me really hard is that some friends I’ve had for a long time haven’t been supportive. When I told them my news they said ‘Oh, alright’, or ‘Oh no’, and ‘Well, do let us know how you’re getting on’, and, I haven’t heard from any of them since, even some relatives.

I do understand people have busy lives, but to not even to send a text? I felt really let down by them, and I still do.

I was told by someone at Maggie's that it’s a phenomenon called 'cancer ghosting' - an unfortunate reality.

Coming to Maggie’s has really helped in that respect. Here I can speak to people who relate to what I’m going through.

We’re here with you

Our cancer support specialists, psychologists and benefits advisors are here for everyone with cancer, and all the people who love them. 

• Come and see us at your nearest Maggie’s
• Call us on 0300 123 180 or arrange a callback
• Email us at enquiries@maggies.org