In discussion with HIFU focal therapy patient Ray Braithwaite
Focal Therapy patient Ray Braithwaite joins OnFocus to discuss the difficult and impersonal experience of care he underwent immediately following his prostate cancer diagnosis which felt to him like being on a conveyor belt. He ultimately went on to undergo HIFU with The Focal Therapy Clinic consultant urologist Tim Dudderidge and felt so strongly about this experience that he published an article in his local newspaper on the Isle of Wight.
He’s also just published a children’s book in time for Christmas, called “A Rather Strange Christmas Day”. It’s available here on Amazon.
Press play in the audio player below to hear the interview.
Please find below a written transcript of the interview, and call The Focal Therapy Clinic today to discuss your prostate cancer treatment options: 020-7036-8870.
Clare Delmar:
Hello and welcome to OnFocus brought to you by The Focal Therapy Clinic, where we connect you with issues facing men diagnosed with prostate cancer that are little known, less understood and often ignored. Prostate cancer is now the most commonly diagnosed cancer in the UK, and with this sombre fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Today, I’m speaking with Ray Braithwaite, a recent HIFU patient from the Isle of Wight. Ray is 70 years old, a retired social worker, and is now enjoying a new career as a children’s author. More on that later. But he’s here now to talk with me about how important personalised treatment is when diagnosed with prostate cancer, having experienced something that felt more like being on a conveyor belt. Ray, thanks for joining me today.
Ray Braithwaite:
Cheers, Clare. Thanks for having me.
Clare Delmar:
So let’s start by if you can just tell me a little bit about when you were diagnosed with prostate cancer and what happened then?
Ray Braithwaite:
It’s a bit of a story. Basically this goes back to January. And in January, I wasn’t feeling too well. I had two conditions. And you go to a GP, you can only be seen for one at a time. Neither of the conditions I thought were associated with prostate cancer, but the GP wanted to do an internal examination. So I found myself with his finger on my bottom. And he actually told me that there was an abnormality around my prostate and he actually said not to worry, I don’t think it’s cancer. Now, that’s the first time I’d heard the word cancer in association with myself. But I’d like to refer you to the oncology department just in case.
Clare Delmar:
OK
Ray Braithwaite:
So he did. And then in February, the oncology department, they told me that they’d like me to have an MRI scan, but I did explain that I was claustrophobic, but they said it should be OK. I went along and the MRI scan for February was good because they accepted that I had claustrophobia and they allowed me to go in feet first, which was fine. And then I had some blood tests. And then for during February and March, a couple more tests. And then I finally got to see the consultant surgeon.
Clare Delmar:
The urological surgeon?
Ray Braithwaite:
The urological surgeon, yes. And a little bit strange. He was mid European guy, really nice guy, very ardent about his job and very interested in his work. And basically, he said he’d like me to have a biopsy. And he felt that that would be the best at this time. And he didn’t want to tell me anything about my condition at this time until he had the biopsy.
Clare Delmar:
So, Ray, had you had a PSA test and then what were the results of the MRI?
Ray Braithwaite:
Those magic words were never used and I wish I’d have known them. A PSA test, the Gleason score, the stage of the cancer. These are magic words that I would recommend people actually use around the physicians they see, but no, he didn’t.
Clare Delmar:
So Ray, he immediately advised a biopsy without you knowing those crucial elements as you described them.
Ray Braithwaite:
Yeah, I said yes. And then very strangely, he stood up and shook my hand and wished me good luck. And I just put it down to one of these mid European things. And that was the first and last time I saw him. And that was for about between three and six minutes. And then I had the biopsy, and that was in April.
Clare Delmar:
OK
Ray Braithwaite:
And was quite painful. I didn’t enjoy that experience at all.
Clare Delmar:
No
Ray Braithwaite:
The nurses were very, very pleasant. But the actual procedure I found really invasive and unpleasant. And then on the Friday evening of the 24th of April, and it was about four o’clock, I received a telephone call and it was from one of the oncology nurses. And she said that I do have a cancer. And now that’s the first time I’d been told that I had a cancer.
Clare Delmar:
Yeah
Ray Braithwaite:
And I found that really shocking. Up until then, everyone had been telling me we’re just investigating to rule cancer out. At that time, quite late evening, I was by myself, I was alone and literally I was given this information to do nothing with for the weekend, except worry.
Clare Delmar:
Yeah, that’s tough.
Ray Braithwaite:
I did ask if I could talk to her about possible treatments and she said she’d phone me back on the Monday and we could discuss everything then. So there’s a bit of a convoluted story, but that’s how I got to know I had cancer.
Clare Delmar:
So Ray we spoke a little bit before. And you mentioned that you had been going through some personal challenges at the time. Can you talk a little bit about those and how they affected your experience?
Ray Braithwaite:
Yeah, I mean, my wife died in December, the previous December. That was the nineteenth and I was grieving and completely bereaved. Basically on my own, I just kind of worry about things rather than take action and do things. And I mean, literally, it just felt as though I was isolated and alone. Having said that, I had good support from the hospice staff and the hospice staff I’ve been having counselling there with a member of their staff and I was able to talk things over with them.
Clare Delmar:
So this was the hospice where your wife had been?
Ray Braithwaite:
Yes. Where my wife died, yes.
Clare Delmar:
Right. Right.
Ray Braithwaite:
My wife was diagnosed in 2016 and she, I’m glad to say, lived on for nearly four years after that. And I was looking after her and making sure that everything was all right around her.
Clare Delmar:
Did you feel that the health care team that you were engaged with for your own personal prostate cancer diagnosis was sensitive to this?
Ray Braithwaite:
No, not at all. I mean, you don’t phone someone at four o’clock on a Friday if you know their circumstances and tell them that they’ve got prostate cancer. It’s just something that I wouldn’t do.
Clare Delmar:
And you’ve really been going through a tough time. And this was, of course, happening all during covid as well.
Ray Braithwaite:
Yeah, that’s right. Covid was in place. And basically, the nurse on the Monday when she phoned me, she said she didn’t want to give me any information at this time, but she wanted me to have some more tests and she wanted me to have another MRI scan. And I said, look, I am claustrophobic. It won’t work. But she insisted and it sounded to me very much as if it was just a process, a tick box situation. The MRI scan was unfortunately arranged for the 6th of May, which is my dead wife’s birthday. I went believing that it should be OK because my wife would be with me.
Clare Delmar:
Yes.
Ray Braithwaite:
But, of course it wasn’t OK. I got to the MRI scan and I realised my panic would set in. So I tried everything with them. I put a mask on and I went into the machine. They had the music playing, but then unfortunately the music stopped and then the machine itself stopped. And now I’m in a small, enclosed space and it’s black and it’s quiet and it’s deserted. And I panicked.
Clare Delmar:
So the MRI scan wasn’t completed?
Ray Braithwaite:
No. After I panicked and kind of climbed out and they were trying to get me out at the same time.
Clare Delmar:
Ow, how tough.
Ray Braithwaite:
Asked if I’d like to try it again. And so I took a walk around and tried it again and it didn’t work. And then I took another walk around and tried it for a third time and it didn’t work, so it wasn’t completed. And the following week I was asked if I could go for a nuclear medical scan, bone scan, and I was told that the machine is much bigger. So I went along for that. And that’s about a four hour process. And literally you have to turn up in the morning and then you’re given something to drink. You leave that in your system for about three or four hours and then you have the scan. Well, I told them about my claustrophobia and they showed me the scanner. And it was an amazing machine. It was a great big aperture around it. I thought I can do that easily. I turned up four hours later and that new machine was being used, but they said, no worries, we have another one here and the other one was an old MRI scanner that had been converted with a camera stuck on it. And they wanted me to go into that head first. Absolutely no way.
Clare Delmar:
So then what was the outcome then? Did you ultimately get recommended treatment for the prostate cancer despite these problems with the imaging?
Ray Braithwaite:
Well, the imaging, we agreed that I could go in up to my shoulder and we’d sort something out. Effectively, yes. After all of that, I was then contacted by the nurse, again another telephone conversation and that would have been May the twenty fifth.
Clare Delmar:
OK.
Ray Braithwaite:
And basically, the hospital team had had a meeting about me. Now, they did tell me about the meeting. And at that meeting they were discussing my case and my prognosis and suggestions that were being made for treatment. I was told that they would tell me after the meeting about the outcome. I phoned up at about 1:30 because I was waiting around and I couldn’t wait for too long, I was really quite anxious.
Clare Delmar:
Sure.
Ray Braithwaite:
Phoned at about 1:30 and then about 3:30, the nurse phoned me back and she said, yes, there are two possible options. Now, even at this stage, I didn’t ask what is my PSA level? I didn’t ask what was my Gleason score. I didn’t ask what stage the cancer was at. And that information wasn’t volunteered. It wasn’t given to me.
Clare Delmar:
And so what did they recommend?
Ray Braithwaite:
They recommended a radical prostatectomy. That’s surgery where either all or a part of the prostate would be removed. In my case it would be all of it. Or they recommended radiation therapy, which would have been five weeks going in on a daily occasion throughout the week with time off with the weekends. That would then be followed by hormone treatment.
Clare Delmar:
Yes. Yes.
Ray Braithwaite:
And basically, I was asking about any other alternatives.
Clare Delmar:
OK
Ray Braithwaite:
The nurse said, well, she’d put these sheets of paper in the post to me and they will have all the information that’s available. So I then said, but what about HIFU?
Clare Delmar:
And how did you know about HIFU at that point?
Ray Braithwaite:
Because I’d done my research at that stage.
Clare Delmar:
Indeed. OK, well, so then what happened when you suggested that to the nurse?
Ray Braithwaite:
Unfortunately, this is the way I heard it. What she said to me was we didn’t recommend that because we think one of the cancers is too big for that. Now, I was gobsmacked basically I didn’t realise I had more than one cancer. This is the first time I’m hearing I’ve got two or more cancers. And I did say to her, is that a medical diagnosis? And she said, oh, no, it’s just my opinion. So I said, well, if it’s alright with you, I’ll make a direct referral for HIFU. And that’s exactly what I did that evening.
Clare Delmar:
OK, so you found and that’s where you went to Tim Dudderidge?
Ray Braithwaite:
Yeah.
Clare Delmar:
OK, and because you knew about HIFU and then you went to see him and you ultimately had the procedure with him. How did that go?
Ray Braithwaite:
First thing was that we had a Zoom consultation.
Clare Delmar:
OK
Ray Braithwaite:
And that took place in, I think it was early June, and that was absolutely fantastic. The consultation I had with Tim was the consultation I had expected to have with the urology surgeon at the hospital.
Clare Delmar:
Yes. And what was different with the consultation with Tim this time?
Ray Braithwaite:
He listened. He had time. And we spent about 20 or 30 minutes and Tim went through all of the potential alternatives, including the surgery and the radiotherapy and the HIFU. And he was also able to tell me about Gleason and PSA and the stuff that I should have been told about months earlier, I think.
Clare Delmar:
Because that was all on your referral notes and your records. So when did you actually have the procedure?
Ray Braithwaite:
That was on the 6th of July. And that was at the Spire. Basically, it was relatively simple. I was going to be a day patient, in and out. But unfortunately, the anaesthetics actually had an effect and they caused me to be very groggy. And so the good thing was that the Spire kept me in overnight.
Clare Delmar:
OK, that’s good.
Ray Braithwaite:
Took about a week or so for the anaesthetics to wear off.
Clare Delmar:
Oh, wow, OK. But they did eventually and the procedure went well?
Ray Braithwaite:
Yeah.
Clare Delmar:
So, Ray, I mean, that’s quite a story. And now you actually published a story in a local newspaper about this experience. And I also believe you wrote about this to both your MP and to the PM as well. Can you tell us about these and what you’d like to say to policymakers and other men with prostate cancer?
Ray Braithwaite:
I’d like to say to the MP and to my own local MP, please answer. Well, it didn’t happen, and what I said in the email and in the story was I think that HIFU should be one of the primary treatments that’s offered and it shouldn’t be left as a trial arrangement. It should be offered first, and it should be available to men without funds. In my case, I had the money, I could afford to pay for it. There are lots of men who won’t have that money and they can’t afford to pay for. The treatment I believe should be made free, made available on the NHS, and it should be one of the primary treatments that is offered to all men.
Clare Delmar:
Did you get a response from either the MP or the PM?
Ray Braithwaite:
No, but the local newspaper did publish it because I remember reading it.
Clare Delmar:
And I’ll certainly make sure our listeners can access that. Did anybody write in or did anybody contact you as a result of that?
Ray Braithwaite:
A couple of men wrote in and a couple of men contacted me and said how valuable it was. And I was talking to one of the local farmers and he’ll make sure that his father asks for the treatment if it becomes necessary. There’s a little bit of a spin off.
Clare Delmar:
So you had an impact. And speaking of which, and picking up from the writing in the local paper, I’m aware that you’ve recently published a children’s story called ‘A Rather Strange Christmas Day’. And can you tell us a little bit about that?
Ray Braithwaite:
Well, on his way to return to home after delivering the presents Father Christmas falls out of his sleigh, and basically he lands up with a family and the family’s task is to reunite him with his reindeer and his sleigh before the end of Christmas Day. And if that doesn’t happen, Christmas will be lost forever. That’s the story.
Clare Delmar:
That sounds wonderful.
Ray Braithwaite:
I won’t tell you whether it’s a good ending or bad ending.
Clare Delmar:
I think I can guess. How would our listeners be able to find that? Is there a way to purchase it, so they can share it with any of their grandchildren, for example.
Ray Braithwaite:
Thank you, it’s available on Amazon as a paperback. If you buy two copies, you get free postage.
Clare Delmar:
I will put that on our website so our listeners can, in the build up to Christmas, decide that they might want to purchase that. It sounds wonderful. Congratulations on getting it published.
Ray Braithwaite:
Thank you, cheers Clare.
Clare Delmar:
So, Ray, thanks so much for speaking with me. It’s been a real pleasure and I’m really glad that you’ve had a good experience and I hope you have a really nice holiday season.
Ray Braithwaite:
Thank you. And to the men, don’t forget the magic words. What’s my PSA? Where am I on the Gleason scale? And what level of cancer do I have?
Clare Delmar:
Indeed, we’ll make sure that that that gets out there. And just again, very glad that you’ve had a good experience in the end with Tim. A transcript of this interview is available on our website. If you’re interested in learning more about HIFU and how we approach it at The Focal Therapy Clinic, visit our web site at www.thefocaltherapyclinic.co.uk, where you can access additional interviews with both patients and clinicians about their experiences with prostate cancer. Thanks for listening and from me, Clare Delmar, see you next time.