Dear Kate, welcome to the club no one wants to join

I'd never really paid any attention to the Princess of Wales, Kate Windsor before yesterday. Royal watching is not my thing. If you'd have asked me, I'd have said "We've got nothing in common". To the best of my knowledge, she's not a fan of Punk Rock or football and doesn't do beer and curry nights. What would we talk about? All that changed yesterday. I watched her short video on the news and nearly cried. I've been in that chair (not literally, I didn't make a video), I know what it is like to be told that you have cancer. In 2011, when I was told, I had an eleven year old son and my daughters were 14 and 16. The thought that I may not see them grow up was at the forefront of my mind. 

One thing I've learned is that you form a bond with other members of the club. It's like when I had a VW camper van. As you are driving along, if you see another camper van, you wave or flash you lights. With cancer, it is the same. If there's another sufferer, you don't need to explain. When you talk, you can speak openly and freely. You don't get asked the wrong questions. People who've not been through the mill, simply do not understand what it is like. Kate is in the early stages, when it is overwhelming. What has been truly awful has been the media circus around her health, the conspiracy theories have been horrible. I was completely baffled by the furore about the photoshopped picture. I photoshop pictures all the time, put filters on them etc, to make them look better or more interesting. We have old photo's of the family that had to some degree perished. During lockdown, I cleaned them up. So what? Why shouldn't Kate want to look good? Now she has been forced to go public. I hope the press leave her alone. I doubt they will

If Kate did want to come for a beer and curry, or a cup of tea and a chat in studio reception, what would I say to her? A lot of what you say when you chat to another person on the cancer journey is very spontanious. You simply cannot predict what they will be struggling with. Often it is highly irrational. For me, my biggest fear was that my missus would leave with the milkman, when I became permanently impotent following surgery. Luckily I am not, and she assurred me that was the last thing that would happen, but it did make me seriously consider declining treatment. When I opted for surgery, which hopefully will be a permanent cure, she was actually relieved and overjoyed. She felt that any sexual imparement was a small price to pay for having me around (I know, she's mad, that's why I love her). I am sure Kate will have similar dark thoughts about the future. 

I made the decision to be completely open and honest about my situation and write a blog about the progression of my cancer story. I would urge Kate to consider doing the same. Not because I have a salacious interest in her problems, but there are huge benefits. The first is that it is truly cathartic to write. I have no doubt at all that it has helped me. Maybe for Kate, a diary or a book might be better given the media frenzy around her, but just putting your thoughts and fears down helps. The second benefit is that it would encourage others to talk. Isolation and the thought "no one else understands what I am going through" is a powerful thing to do. The third is that it will give her the opportunity to control the narrative. If she puts it out there, there is nothing for the press to speculate about. I get that her kids are young and he wants to protect them. I've been on the other side of that. My mother was told that she had a terminal prognosis and had a maximum of three years to live in 1970. No one told me. I was told by a cousin that she was going to die and I'd be put in the orphanage, when I was staying with them whilst she was being operated on. It was devastating. I was seven. I asked my Dad as he was driving me to see my mum. He burst into tears, nearly crashed and then told me that the prognosis wasn't good, but he believed that with prayer, she'd come through (amazingly she did). He also told me that whilst he was alive, I'd never live anywhere but with him at home. Kids are cruel. That is the truth. I told my kids that I had cancer, but it was treatable and I'd be a round for a long time. It was the truth. What would I have told them if the prognosis was not that good? The truth, but in a slightly sugar coated fashion. Everyone has different considerations and it is for Kate and William to decide what works best for them. I just hope she still has a friendship group that can support her. Joining the Royal family puts her in a goldfish bowl.

And finally on the subject, what really strikes me is just how immature we are as a society when it comes to discussing cancer. I don't know anyone who hasn't been affected by cancer in some way. When we are told XXXXXX has cancer, the first assumption is that they are doomed. This is not true. It sounds to me like Kate's disease has been caught early and is most likely treatable. Screening for common cancers like breast and prostate cancer is the way to give yourself the best prognosis. I'd love to see Kate say that, when she is ready and in her own time. The first thing though, is for her to get her head around the whole thing. It isn't easy. Give her the time and space to do it.

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About Rog T's cancer blog.

For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life. 

 For those of you who aren't, here's a quick summary. I'm 61 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). 

My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. This was followed by two in February 2022 was 6.7 and October 2022 was 6.6 was stable. 

In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August, I had a radical prostatectomy and am currently recovering. 

Six months on, I am continent and have a degree of erectile function, assisted with Cialis

Got the picture?

Cancer is not a death sentence. With treatment, you can get past it and have a great life. I am still alive, to the extent that I am doing a gig tonight with my band, The False Dots at the Beehive pub in Bow tonight (Sat March 23rd). Please come along if you can! 

Tickets at www.seetickets.com/event/underground-sound-presents-the-beehive/the-beehive-at-bow-bow/2940927?src=the%20false%20dots

Here is a song I wrote to raise awareness amongst men of the need to get checked for Prostate Cancer

Guest blog - THE BIG “ C” & The Royal Free by John Sullivan

By John Sullivan,

The Barnet Eye blog regularly posts an update on a cancer issue which I read along with others on a regular basis, and like many people it  refers to cancer as the “ Big C “, simply because cancer  is a big issue, in fact it is a huge issue when it affects you.

They  have also posted comments related to my cancer issue and my treatment at the hands of the Royal Free Hampstead, which I will now refer to as the RFH, and I have questions to ask of you readers. Because I cannot believe for one second that I am the only RFH cancer patient that could in fact use the expression “ Big C” , not just for cancer where the RFH is concerned  but also to describe “ Cover Up “ ,  “ Cock Up “,  “ Contempt for patient safety “ Concerns “  and protocol “.

Some 12 years ago I had surgery for prostate cancer and suffered issues immediately afterwards, one of which was ignored, and the other treated for over 9 years as IBS, when in fact there was a Neuroendocrine tumour growing inside of me spreading like a spider’s web across my small and large intestine and bowel amongst other places. The end result being I have an incurable cancer that, had a little more effort and  investigation taken place at the time of my prostate cancer surgery, a further minor operation could have resolved the problem. Avoiding my having lived a nightmare of pain and discomfort for so many years since my prostate cancer surgery, and saved the NHS a great deal of money.

Sadly the " Cock Ups ", the  "Cover Ups" and  "Contempt " for patient safety “ Concerns “ and protocol did not end there, and have continued without interruption.  In the last couple of years at the Royal Free Hampstead, where I am expected shortly for further surgery, but terrified at this stage to have it done, for reasons I will explain in my following blogs. Sadly and with great regret apart from the fabulous NETs team at RFH and nursing staff in general, I have good reason to be frightened of the RFH.

In light of recent apparent cover up accusations in hospitals around the country, and the government’s determination to silence whistle blowers whilst pretending to support them.  Coupled with the fact in recent days it has been revealed nearly half of the NHS budget is being eaten up by compensation claims, because hospital administrations are refusing to accept something went wrong, and are spending billions on the Big C “ Cover Up “ and  “ Contempt “ for patients side of the story. The Barnet Eye has agreed for me to post a series of blogs over the next few weeks outlining my “ Big C “ experiences with the Royall Free Hospital Group.

In order that we can get some feedback from you readers , it does not have to be cancer related it can be any of the “ Big C “ issues , such as " Cancer " , " Cock Up ",  " Cover Up " , or " Contempt " for the  "Concerns " you as a patient have or are currently raising, along with “ Contempt “ for the protocol related to your illness.

Whilst the RFH is brilliant at Ebola and in many other ways, my experience strongly suggest  it has many failings that need to be exposed,  in order to improve patient safety and quality of life The  hope being the RFH will listen to the feedback from this survey, and not treat it with Contempt & Cover up, and Continue to ignore the bona fide Concerns of many patients, and their vitally important illness related protocols, as is currently too often the case.  Or am I the only patient that is affected by the “ Big C “ mentality of the Royal Free ?, I somehow don’t think so.

Second posting soon.

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John Sullivan is a Barnet Resident. Mr Sullivan is living with cancer. Guest blogs are always welcome at The Barnet Eye

Guest Blog - Cancer and being alone - By Rev Gillian Straine

The Barnet Eye kindly asked me to write a guest blog on cancer, ‘so that people with cancer know that they are not alone’; that is not alone having been diagnosed and treated, and perhaps survived into remission, with one of the most common diseases in the western world. ‘Most common’ and ‘lonely’: why do these words so often go together when talking about cancer? Why is there so much loneliness in the cancer community of which I am a fully signed up member.

I remember when I was sitting through yet another excruciating chemo session, bored and sickening, an elderly woman, who I assume was being kind, came over after her treatment and squeezed my 21 year old hand and said she was very sad to see young folk who were ill.What had I done to deserved it?, she pondered. I remember this incident clearly, just as I remember the day I first went to the doctor, the kindness of the doctors and nurses, the fear in my parents eyes, the chemotherapy and the day the doctor told me I was in remission. All of that I could have predicted, if I had thought about it, before I was ill. What I wouldn’t have predicted I don’t think, was how tough I would find surviving. For I found that life after cancer was not all that it was cracked up to be. It’s tough, surprisingly, to ‘win’; it is not a completely sweet victory to beat the big C.

Cancer is a diseased burdened with taboo, still today. I grew up in the north east of Scotland which is more conservative than these sunny climes, and there I met many people of the older generation who wouldn’t even say the ‘c word’. I knew conversations were happening about me in hushed tones and people were keen to ask ‘how I knew’, so that they might too spot the ‘deadly beast’ that grows inside so silently. The sad thing is that even with survival rates increasing, cancer still wrongly means ‘death’ when even the word is intoned. Doctors say that they would rather diagnose someone with heart disease, than cancer, even though the former many be more dangerous.

After six months of chemotherapy my advanced Hodgkin’s lymphoma went into remission, where it has remained for twelve years now. And of course, it goes without saying, that I am thankful. But I struggled and I wanted to find out why. And I think it might have something to do with the cancer narrative that we are supposed to go along with.

So us lot in the cancer community are forced, however kindly, into a storyline that goes a little like this. You must be strong, fight the disease, and then win. The story that we are supposed to fit into is this: shock of diagnosis, spreading the terrible news, facing gruesome treatment, into remission, happily ever after, hopefully with a new positive outlook on life which helps us to overcome great challenges, run marathons, change career and find beauty in each sunset. And then quickly go back to normal, so you can stop everyone around you feeling uncomfortable; having to speak in hushed tones is so very tiresome. We like the Lance Armstrong story (well we did until we found out he was a lying cheat), and like the idea, as Kelly Clarkson put it, that what doesn’t kill us makes us stronger.

But I didn’t feel that way. I was in remission, but I didn’t believe myself to be braver, or stronger or more susceptible to glorious sunsets. I felt angry that I had to face my own mortality, and sure I wanted to live, but I didn’t know what to do with it now that I had it. Cancer had changed me. I didn’t bounce back into my old self. Cancer had left an indelible mark. I faced that depression that so often comes when identity crumbles, and the loneliness when you don’t fit in; I no longer fitted in with my cancer free peers nor even into my old life story.

Why had this happened? Well, I remembered that old lady in the chemo suite because I believe that she exposed the whole problem with cancer. ‘What had I done to deserve it’? She won’t be reading this which is a shame because I want to her tell that I had done nothing to deserve it, and neither had she, me in my 21 years and her in her 80 odd years. Cancer is not a moral disease which strikes the naughty. Somewhere in our subconscious we have the idea that cancer is a punishment. It strikes the childless woman, or the one who supressed their emotions. Susan Sontag wrote about this is her book, ‘Illness as metaphor’ where she looked to literature and saw that no ones dies a romantic death of cancer. The imagery is of a disease that takes us over from the inside, a demonic pregnancy as St Jerome put it in one of the earliest recordings of cancer. It is something that we have to wage war against.

Let’s expose this as wrong. For cancer is simply when something in our DNA goes haywire leading to uncontrolled cell division. You could almost say that it is life on overdrive, and it does kill, but it is simply nature.

Taboo or otherwise, it is a disease like any other which takes us to the edge, and we are forced to admit our own mortality. And it is lonely by definition to hang around at the edge. First, this is okay. It has to be, right? Maybe we are the privileged few whose faces are rammed up to the ultimate question of life and death and we can work out our own answer. Cancer changed me, irreversibly. Physically, a little, but mostly because I had to face my own mortality, and this is the lonely bit: We must all die alone.

But we also have the key to breaking the taboo and loneliness of others with the disease. Let’s tell our story to them, and to anyone that will listen. Hold them up and let people have a good look. It will make us vulnerable but something in the telling of the story heals.  I am sure there is clever research somewhere that understands why this is. But if we tell our story of cancer, of fear, and maybe the funny stuff too (laughing and cancer, now that is a taboo), then we can not only find some healing for ourselves, but we free others. Free them from their fear of the disease, and perhaps free them to tell their stories too. And where there is freedom, then we can live more fully. 

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 Rev Gillian Straine is a cancer survivor - Guest blogs are always welcome at the Barnet Eye

Rog T's Cancer blog - What is the point of being alive?

Ok, so this is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life. For those of you who are regular readers and have read the previous posts, you can skip this first paragraph. For those of you who aren't, here's a quick summary. I'm 49 years old and I recently had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gives me a 3+3 on the Gleason scale. I'm now on a program of active monitoring. I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?

Todays post is a bit long, a bit rambling and a bit of a braindump of my thoughts today.

So today has been a very grim day for me. I had some bad news. One of my best friends has been having chemo for five months and has just found out that the tumour hasn't shrunk enough to be operable. Although the primary tumour hasn't grown, it has spread to other places. He's on morphine for the pain. On the bright side, he's a Man Utd fan and he's got tickets for the match vs Crystal Palace. Given his recent luck, I'd be tempted to put a fiver on Palace. It was a grim call, perhaps made grimmer because I promised to update another friend when I heard the news, so I had to have the conversation twice.

Now as someone with a far better prognosis, it sent me into a very depressed state of mind. What do you do? How do you deal with such things? It's bad enough getting your head around your own issues, but this was a really unwelcome bit of news. I used to deal with such news by going to the pub and getting hammered (and believe me that isn't ruled out completely tonight), but I have another method of dealing with such setbacks these days. I went to the gym and gave myself a pretty tough work out. I set myself a 50 minute hill course on setting 11. The physical strain of dealing with the hill sections, followed by the resting sections was fairly distracting. As I had to choose a bike, I had the choice of the News or watching Dita Von Tees on "Loose Women". In my depressed state, I chose Von Tees, strangely this did the trick of taking my mind off the black thoughts and issues (that and the physical strain of the workout). Although Von Tees isn't really my cup of tea looks wise, she is a great burlesque dancer and I guess I'd recommend her show as a distraction for morbid thoughts.

One of the things which I've been advised is to try and reduce my stress levels. A question I had asked myself is whether I need the stress of writing this blog. It is an interesting question, because I know of one blogger who gave it all up because the stress of blogging got too much. The thing is, however I look at it, the blogging isn't the stressful thing. The stress comes from knowing that all of the crap I write about is being perpetrated on the people of Barnet. It is rather interesting to note that certain people have started leaving all manner of nasty and snide messages on their twitters and in the local paper, since I first mentioned about the diagnosis. Is it a coincidence? Do they think that they could kill me or stress me out enough to stop blogging "on health reasons?".  Well if that is the reason, then think again chaps. The first question I asked myself when I got the diagnosis is "what is the point of being alive?". The point hasn't changed. We all have our own set of beliefs and we all have our different view on why we are here. Some believe that their is no point to us being here and that while we are here, we'll take as much as possible and give as little back as possible. Some of us believe we are are here for a reason, even if we don't understand that reason and we are here to try and make some sort of difference. When I read some of the unsolicited emails I receive from people who appreciate the blog, I realise that it has a purpose and it helps people. So what if I get a few trolls leaving stupid and ignorant messages in the electronic ether? Am I such a coward or so lazy that it matters to me? Dream on.

As I come to terms with my situation, I realise that it gives me a better insight into the condition we all have, the human condition. I've learned much since the diagnosis. I've learned that I've made a few lifestyle mistakes, through ignorance. I've learned that the government ( not just the current one) has badly let down all of us, by not educating us as to our eating habits. I've learned that many more people than I realised have had brushes with cancer. I've realised that those of us who are fit and well (yes, that's me. I have no symptoms) need to do far more to raise money for research and give time to support those who are not fit and well.

I also think I've solved something which has bothered me since I was a child. There are so many beautiful things in the world that have been destroyed. Of the seven wonders of the world, only the pyramids are left. In London, not a day seems to go by without a landmark or a much loved building going. I've always wondered why, if there is a God or some sort of supreme being, such destruction can come to pass. As I said, I had a moment of enlightenment. It's so we learn the value of things. If nothing beautiful could ever be destroyed, how could we ever understand it's value or have a reason to fight for it. Would a world where we could take everything for granted, really be a better world?

Which takes us back to my condition and yours too my friend. With my condition, I believe I can do something to improve it and I am trying. Now maybe you are in that position as well. If you are then, give some serious thought to making a few changes. That starts by identifying the things which may make you ill. For most of us, a few monor changes will make a huge difference. Then there are those of you who perhaps can't change their lot. Maybe, just maybe, you could help you loved ones avoid the things which you are going through.

So in answer to the title of this blog today, the point is to try and make a difference. Hopefully a difference for the better. And in the words of Steve Miller from 1969 - Don't you let nobody turn you around - strangely enough, as grim a day as it was, in a strange way, I feel far better in my own mind about myself. Maybe some sort of corner has been turned.