Prostate Cancer, a couple’s story
The following are two linked stories, by a man and his wife…
Patient: Bob Carling, 65 years old at diagnosis. Publisher and musician. Carer.
Partner: Maria McCarthy, 62 years old. Writer. Cared-for by Bob.
Patient: Bob Carling
It all started in October 2020, when I had a very painful left knee, which I couldn’t bend or kneel upon. It thankfully turned out to be a minor thing and the pain subsided. But my GP suggested an ultrasound scan of my knee and pelvis, just to rule out anything sinister. It confirmed that I had Osgood–Schlatter syndrome, a painful knee which is usually diagnosed in the very young and those who are very active. I couldn’t say I was either of these! But the GP also identified an enlarged prostate, which might not have been picked up if I had not had the scan. A blood test at the end of November 2020 then showed that I had a raised PSA (prostate specific antigen) to 10.19 (it’s normally much lower than this for someone of my age, 65). This meant that I might have prostate cancer.
My initial reaction was that it’s probably the best cancer to have (as if we can choose!) because I had heard that it is highly treatable. And it’s quite common – in fact, as the saying goes, ‘more men die with prostatic cancer than from it’. But it was still a shock, and my wife Maria and I struggled to come to terms with it, and the implications of its treatment.
I then had an MRI scan in December 2020, to rule out if there was any spreading of the possible cancer cells. Thankfully there wasn’t.
The next thing was to have a biopsy, to confirm whether there were any cancer cells in my prostate. This was completed at Medway Maritime Hospital on 21 January 2021 – a very uncomfortable procedure, but it showed that I did indeed have cancer cells in my prostate (technically this was PIRAD 4, T2CN0, Gleason 3+4). Because of the way things are structured in the NHS in my part of Kent, I was referred to the oncology department over in Maidstone.
Because of Covid restrictions, all the ‘meetings’ with the specialists, both in Maidstone and at the Medway Maritime Hospital, were held by phone or via Zoom. After a number of calls, and thoroughly reading information booklets sent through the post, plus my own research, it looked like my options were:
(i) taking the prostate out (radical prostatectomy),
(ii) radiotherapy (targeting the prostate gland), or
(iii) what is called ‘brachytherapy’, where they insert short-lasting radioactive pellets, about the size of rice grains, into the prostate.
These all sounded scary, especially as
(i) would have removed the nerves involved in erections and orgasm, and
(ii) and (iii) would have to be preceded by taking hormone drugs, which also have untoward side-effects: hot flushes, extreme fatigue, low libido, erectile dysfunction, memory loss and concentration problems, weight gain, mood changes, etc. This made me and Maria very anxious; something needed to be done, but what should we do?
About then, a friend of mine had come across what is called ‘HIFU’ (High Intensity Focused Ultrasound), a relatively new (and successful) focal therapy for prostate cancer where the actual cancer cells are targeted, leaving surrounding cells intact. HIFU had got into the news in early 2021 – see the attached newspaper clippings. So that sounded like a good option, but I wasn’t offered this type of therapy when talking to the oncologists and urologist experts at Maidstone and Medway. Indeed, any questions that we had for them about ‘focal’ therapy were met with scepticism or indifference and never once was I told that I could be offered such therapy on the NHS. I was even told by one oncologist that they were sometimes having to treat the failures of HIFU! Not encouraging…
Moreover, I was also told that brachytherapy was off the menu for me because of my weight. I was told that the procedure involves quite a bit of bending, which would have restricted my breathing with such a high BMI. However, when I asked how much weight I should need to lose, I never got an answer. Moreover, the oncologist who said that brachytherapy was not available to me also said that ‘focal therapy’ might not be for me as I my cancer might be tricky to treat even by focal therapy for someone with extra weight. It turns out she was wrong about that.
Nonetheless, losing weight should surely help with my general health and with whatever surgery I would have to undergo. So, with Maria’s help, I adapted to a largely plant-based diet, following the advice of Dr Michael Greger’s book, How Not to Die (https://nutritionfacts.org/) and I started ‘intermittent fasting/time restricted eating’ with the help of Dr Michael Mosley’s books, The Clever Guts Diet and The Fast 800 (http://www.michaelmosley.co.uk/). And I bought myself a bike to take up regular cycling locally. In 5 months, I lost 33 lbs/15kg (nearly two and a half stone) – something of which I am proud (and I am continuing to keep my BMI down).
After a lot more research online, I took to the phone, first of all calling the ‘Focal Therapy Clinic’, a private clinic, in mid-February 2021, who told me that HIFU could be offered to me, but undergoing it privately would cost a minimum of £13k. This was very disappointing. Surely, I thought, such a procedure must be available on the NHS? Two days later, with great relief, I had a very helpful phone conversation with Paul Sayer of PROST8 (a small prostate cancer charity set up precisely because men are not told about the availability of such alternative therapy, https://www.prost8.org.uk/). PROST8 would be able to help me in getting a referral to a hospital that could offer me ‘focal’ treatment – and on the NHS. So, with Paul Sayer’s help, and with a lot of persistence, I was finally referred to Imperial College Health Care NHS Trust.
So, months after diagnosis, and after a lot of anxiety-inducing phone calls, Maria and I finally spoke with one of Imperial’s urology consultants, Mr Arya, at Charing Cross Hospital, who assured us that as long as he could have a closer look at the biopsy slides taken during the Medway biopsy procedure, I could indeed be a candidate for focal therapy on the NHS – and that my weight was not an issue. That was a relief, but several nail-biting weeks went past as the Charing Cross’s experts then tried to persuade the Medway people to send the biopsy slides. Poor admin wasted a lot of time, and Maria and I suffered a lot of anxiety.
Finally, in late June 2021, I had a call from Mr Arya. I gather that on the very day that I was due to have a conversation with him, he had been planning to ask me to go up to Charing Cross Hospital for another biopsy! However, thankfully, this was not needed – the slides were now in transit to him.
After Mr Arya had looked at the biopsy slides, he agreed in July 2021 that I was eligible to undergo their ‘focal therapy’. In fact, rather than HIFU, he offered cryotherapy, i.e. focused freezing of the cancer cells, which would be better for the type and location of prostate cancer that I had. He then arranged for the surgery to go ahead as an emergency, which took place at Charing Cross Hospital in August 2021, several months after diagnosis.
The operation itself was a day-procedure, so I was taken up by car by a good friend on the day – and home again the same evening when I was (finally) discharged. The procedure was carried out under general anaesthesia, a great relief to me… If I had elected for brachytherapy, although it would have been at nearby Maidstone, I was told that it would not have been done under general anaesthesia.
Thankfully, the operation was successful. I even got a reassuring wink from the nurse on the ward to say that my nerves had been spared during the operation. However, I suffered a very bad reaction to the general anaesthesia, bringing back horrible memories of surgery when I was a child. While feeling dreadful and constantly vomiting, it was very difficult to take in any information I was being given about post-operative care, especially about the catheter that had been inserted – and that I would then have to wear for a week (it was such a huge relief when it was removed by a local district nurse!). I kept asking if the information the nurse was giving me was available in writing or online. Much of it was, but, as we found out a few days later, some of it was out of date and misleading. Phoning the support staff at Charing Cross hospital to clarify what I needed to do was very difficult because Covid meant that many of them were working from home, making leaving messages and phoning me back complicated. I would be on the phone for several hours, and Maria and I were often in tears. There was much confusion about the correct overnight bags for collecting urine from my catheter – such a simple thing like the exact make/ordering details for replacement bags were not on my discharge papers, so re-ordering them locally was complicated. Until I got the right bags, I even had to resort to using gaffer tape on old bags. On top of this, I had a really painful post-operative infection, which took several weeks to resolve.
I also have some ongoing problems. I mentioned earlier that I got a friendly wink from the post-operative nurse… One of the problems that men experience after focal therapy is that, even although the procedure is less invasive than other surgery, the nerves involved in erection and orgasm can still be damaged. “The most common long-term side effect of cryotherapy is difficulty getting or keeping an erection (erectile dysfunction) … This is because the treatment can damage the nerves that control erections. Studies suggest that more men get their erections back after focal cryotherapy, because less healthy tissue is damaged than with whole-prostate cryotherapy.” (https://prostatecanceruk.org/prostate-information/treatments/cryotherapy/) Which is why I wanted focal therapy.
There are treatments that can help – and there’s some excellent, sensitive advice on the https://www.prostatecanceruk.org website, which Maria and I are pursuing. However, it can take several months from surgery for things to get back to ‘normal’ – sometimes up to three years. As I write, six months on from the surgery, I’m pleased to say that things have got better, but it is taking a little while and ‘normal’ is different from before.
On the positive side of things:
- The ongoing support from Paul Sayer of PROST8 (https://www.prost8.org.uk/) has been invaluable.
- I have also got some very helpful support from my local Urology Support Group (https://urologysupportwestkent.co.uk/), so much so that I have now joined its organising committee.
- Additionally, Kent & Medway Prehab™️, a pioneering programme run by the Public Health Team at Medway Council, Chatham (https://www.kentandmedwayprehab.org/) is offered to those undergoing surgical procedures for cancer. Although, because of Covid, this had to be online, it is an excellent programme that, “offers tools to fortify physical and emotional resilience for people preparing for cancer treatment. The support continues during and after the treatment and is proven to improve health-related quality of life.” It meant that I had several unhurried online sessions before and after the surgery to talk about my diet and general health. My ‘prehab’ person, Roberto Laza-Cagigas, was an excellent sensitive and helpful ‘ear’ about my fears and worries.
Despite poor communication between different bits of the NHS, the care I received from the staff at Charing Cross was excellent and the urology people in Medway Maritime Hospital during the biopsy procedure were so caring. The last time my blood test for PSA was done (November 2021), it had gone right down to 0.07. Success! And if the PSA level stays down, they’ll finally discharge me later this year.
Main lessons learned… ask questions, do research, don’t take no for an answer, insist on knowing more about alternative therapies. And don’t be afraid to lean heavily on those within the NHS, etc. who do offer care and support.
Partner: Maria McCarthy
When Bob was in hospital following a heart attack, I was awake in the night consulting Dr Google. I wanted to find accounts of people in the same position as I was. My search phrase was, ‘Husband has had a heart attack.’ This brought up testimonies of women who had left their partners because they were ‘not the same person’ as they were before.
I found little support in the weeks to come, as a partner rather than a patient, except for a Facebook group. Even then, I became entangled in other people’s problems, finding little support for my own situation.
Why am I telling you this? It’s a good analogy to what happened when, four years after his heart attack, Bob was diagnosed with prostate cancer. The focus, quite rightly, was on the patient and not his partner in both instances. There was no support for me, and the journey for us, as a couple, was similar.
After Bob’s heart attack, we also had the stress of a house move, and Bob, as a self-employed person, had no access to sick pay during his recovery. A lot of the admin for the move fell to me, plus we needed physical help with packing, trips to the dump and removals. I have a chronic illness that severely limits my energy and strength, so this sorely tested me, physically and mentally. Meanwhile, Bob’s mood dropped considerably. The cardiac nurse’s only suggestion was to ask the GP to add anti-depressants to the strong cocktail of drugs that Bob was struggling to get used to. What she didn’t say was that he needed to talk, we both needed to talk, to counsellors and each other.
In the coming months, I too succumbed to depression. Our anxieties were played out against one another. We had rows. Small niggles became enormous problems. We talked about separating. Seeing beyond that moment was hard. A house move and health problems are up the top of the list of severe stressors, plus the new house needed work. We were dealing with daily dust, noise and builders around the house.
My community mental health nurse gave me the best advice I have ever received, when I told her of our relationship difficulties. ‘You need to talk to each other when you are calm. Set aside “protected time”, without interruptions, to talk about your relationship.’ Our first sessions were fraught. Honesty without blame was required, and we had to remind each other of the ground rules: no phones, no storming out, stay and talk things through, no matter how painful. Focus on how our relationship could be better. And it did get better; even better than before.
When Bob first got his prostate cancer diagnosis, I was in denial. As someone who has spent a lifetime catastrophising, I was telling Bob and other people, ‘I feel it in my bones; it’s not serious.’ Even when the news came that ‘something must be done’ rather than watchful waiting or active surveillance, I had little idea of what lay ahead. I had heard that prostate cancer is common, and that most men die with it rather than from it. I had heard encouraging stories, with no focus on the possible side effects of various treatments.
With diagnosis during the pandemic, I wasn’t allowed to accompany Bob to in-person appointments. I was there, though, for every telephone and video consultation, taking notes, asking questions. I lost count of how many consultants and nurses we spoke to. Each consultation brought new information and different options for treatment. Some of the information was contradictory, particularly when it came to the newer, focused-therapy treatment options such as HIFU and cryotherapy. The old-school practitioners knew little about the new-school options. A brachytherapy specialist told us that she had treated HIFU failures; the HIFU specialist told us that he had treated brachytherapy failures. There was misinformation and poor communication between departments in the same healthcare trust, and even worse communication between different trusts.
In amongst this was the worry that Bob is my carer. We were both concerned about him being out of action during and after treatment. I have invisible disabilities, and during a video consultation, Bob expressed his worries about me. The consultant glanced at me and said, ‘You look alright to me.’ Inwardly fuming, I swallowed my anger. The consultation was not about me, after all. ‘Anyway, you’ll be fine after a week,’ she said to Bob. She later said that she would not consider Bob for brachytherapy because he was overweight. She said that he would be refused HIFU for the same reason, which turned out not to be true.
Through Bob’s relentless research, he found his way to the charity Prost8, and to an NHS referral to Imperial College to discuss focused therapy. Eventually, after a long wait for Medway Maritime Hospital to send Bob’s biopsy slides to Imperial, he was deemed suitable for cryotherapy.
Throughout the research into different treatment options, there was worry about the risks of incontinence and erectile dysfunction. Our sex life is important to us. We enjoy each other. One of the things that came out of our ‘protected time’ talks is that we make dates, not just for outings, but for intimacy. We don’t wait to feel ‘in the mood,’ we make sex happen. What if we were to lose that part of our life altogether? What if it were different?
As Bob’s partner, I tried to get some information and support for myself. The one leaflet I read focused on being understanding of your partner, and needing to take on more of the housework, shopping etc. There was nothing for if your partner is your carer; if you are unable to take on more than you already do.
Bob’s cryotherapy surgery came a good eight months after the initial tests. I could not accompany Bob to Charing Cross Hospital; the journey itself would have been too much for me, and I would not have been able to go into the hospital with him. A friend kindly did the round trip, dropping Bob off early in the morning and returning in the evening to take him home. I couldn’t have anyone at home with me while I waited, as we could not risk catching Covid, post-surgery.
I kept in touch with friends and family via WhatsApp as I waited. I could not settle. Bob’s surgery was delayed by several hours, then he was violently sick when he came round from the anaesthetic. I thought they wouldn’t send him home the same day, as planned, as the vomiting continued, but he was discharged after all.
They had told him that he would be up and about in a week; except he wasn’t. Bob acquired a nasty and painful infection. We both had to fight for the treatment and equipment he needed. He had been sent home from Charing Cross Hospital with a few night bags for his catheter, and needed more from the GP. The surgery said that they could not prescribe them without knowing the exact make and type of bags, and this was not written on the bags. We sent a photo to the surgery, and still they could not identify what Bob needed. It was only after a trip to A&E, when Bob’s infection worsened, that a doctor gave him a prescription for the bags.
Then we discovered that they would take ten days to arrive at the pharmacy. Bob had no night bags left. We had to tape over the hole in the bag he had used the night before. Then there was a game of ping-pong between the surgery and the incontinence nurses. The GP told us to phone the nurses; the nurses told us they needed a GP referral; the GP once again sent a text telling us to phone the nurses, who told us that they couldn’t remove Bob’s catheter without a referral. After two days, the referral was sorted, and a nurse simply said that she would leave some night bags at reception for someone to collect.
If I had my time again, I would not have believed the advice that Bob would be up and about in a week. I would have arranged for extra help at home. To put my own limitations in context, a food shop, ordered online, took me half an hour to put away. I had to take rests between carrying small amounts from the front door to the kitchen, and then another rest before unloading the bags. I then needed to lie down. Bob was not up to cooking the main meal; neither am I, for the majority of the time, but I had to do it.
I called on a friend to change the bed sheets, as I was so exhausted, and a neighbour to take out the bins. The garden needed tidying, too, but neither of us was up to wielding a lawnmower. The house just didn’t get cleaned, apart from the kitchen and bathroom, for several weeks. These small things worried me.
With Bob’s infection, which took some weeks to clear up, intimacy was off the agenda. We were both concerned about how it would work out, sex after prostate surgery. A nurse had told Bob that nerve damage had been avoided. In fact she winked at him and said, ‘You should be alright,’ soon after he came round from the anaesthetic.
I know we were both worried about sex after surgery, because we talked about it; keeping talking was the most important thing for us, as a couple. Until the day that I suggested that we cuddle on the bed. No expectations; intimacy without penetration. This is the part when, in the old Hollywood movies, the scene would shift to waves crashing on a beach.
Everyone’s sexual journey post-surgery is different. Bob and I are fortunate – our sex life is not the same as it was before, but we do have a sex life, and our intimacy is strong.
Bob is awaiting an appointment at the erectile disfunction clinic to see if things could be any better. We need to keep talking throughout the coming months, and we need to continue being intimate. Love, talking and trying will see us through.
My advice to other couples going through this journey is to talk, ask for and accept help, and keep fighting for what you need – referrals, equipment, counselling support and practical help.
My advice to the NHS – do something about communication between different hospitals, different departments. Over the two days we had to fight to get replacement catheter bags, I had in mind an imaginary man, living on his own, not wanting to be any trouble and trusting that the NHS would get him what he needed, literally sitting in his own piss. Bob and I are both articulate people, yet we had an awful time trying to be heard, getting Bob’s needs met. You have to make trouble to get your voice heard. Be polite but firm, and always say thank you to those that try to help, but do make trouble!
As a postscript, I am about to undergo a gynaecological procedure, just seven months after Bob’s surgery. I guess that Bob and I have learned a lot from his experience as a patient, which will help during my own recovery. We’ll keep talking, keep making trouble, and enjoy our lives together, no matter the challenges.