Rog T's Cancer Blog - My support for Eddie Nestor after his cancer statement

Back in 2023, I was personally struggling. Having been diagnosed with  prostate cancer in 2011, I was faced with a second round of treatment, which was going to be life changing. This series of blogs gave some clue to my readers. I didn't personally realise the magnitude of challenges I was facing. To my surprise though, BBC Radio London mid morning host Eddie Nestor had been following the blogs and got in contact. Eddie had his own challenge with cancer a couple of decades ago and recognised the fact that I was struggling, perhaps more than I realised. Eddie got in touch and offered his support. We have discussed cancer many times since.

Yesterday, Eddie announced that he was facing a new battle himself. When I started this journey, back in 2011, I would have posted a blog saying "Thoughts and prayers with you Eddie, I don't know what else to say". Now I do. I have grown up. One of the most important lessons I learned in 2023 is that you have to say what you feel. I have this message for Eddie. 

Dear Eddie, 

I read your post on Facebook yesterday and I was absolutely devastates. When we have spoken recently about cancer, it has been from the perspective of  people who had survived, moved on and wanted to help others facing the challenges and share our experience. We both also know that the monster may still be under the bed. When we last spoke, we discussed how for people in our position, cancer is more a mental health issue than a physical one. What we spoke of the anxiety of check ups and perceived symptoms. We spoke of the fear of the monster under the bed.

In 2023 when I was struggling, you stepped up and offered support and an opportunity to honestly air the struggles I faced as a 60 year old man facing a life changing procedure. I didn't know what the future held, what to tell my children or wife about my feelings and how to deal with the huge anger and resentment that I was feeling. As someone who's job it is to talk and make people feel comfortable, you did an amazing job helping me put the jigsaw of life back together in my head. Given that we are both scalliwags from London, who don't particularly like showing vulnerability, I never properly thanked you for this. Partly, this is because I guess you didn't want thanks, but partly because when we put the monster back inder the bed, we like to pretend it isn't there.

I read your statement yesterday as I was about to visit the gym. I spent 30 minutes on the cycling machine in turmoil. When we hear such news, it reminds anyone living with the monster under the bed that it is still there. I also realised that it would only be right and proper to say something. I have no idea whether you'll read this, but if you do there are some important things I want you to know. The first is that I love you mate, and if there is anything I can do, just let me know. It may seem a strange thing to say about a bloke I've only spoken to on the phone, but it is important to realise the effect your support had on me and how appreciated it is. The second is that we never realise how dark it is getting until someone turns the light on. I thought the sun was shining and I was doing alright mentally, until yourself and other friends put the light on. Even though your no 1 battle is the physical one, make sure that you do what you need to for your mental health. 

The difficult fact is that with cancer, it is what it is. It is a thief. It steals what we love most. In my darkest moments, I was thinking very dark thoughts. Thoughts I am not proud of, but if I don't acknowledge them, I would be dishonest. I seriously thought that it might be better if I wasn't around at all. Maybe it would spare the people I loved the sight of me disintegrating in front of them. I thought about refusing treatment and having a few great months or years and then flying to Switzerland. When I finally decided to have surgery, my wife almost broke down in tears, she said she'd have supported me whatever I decided, but I had made the choice that gave her the best chance of lumbering herself with me for the foreseeable future. That was probably the moment the light really came on. From there, once I had a plan, the job was easier, just stick with it. 

Your message says that you are now on chemo and are in the plan. I hope you are in the phase of sticking with it. It ain't easy. Far more so for you on chemo, than me with surgery. With that it was a massive discomfort for six weeks and then more or less back to normal. I don't know what the treatment plan is. What I do know is that it will be a bumpy journey. You have a fantastic wife and two amazing kids. You have a reason. Anyone with a reason is lucky. I am sure that chatting to people like me on your show in a few weeks or months, is the last thing you want to think of right now, but myself and hundreds of thousands of people in London are crossing our fingers and praying for the day you come back and start insulting us again!

In a perfect world, in three years time, we'll be rapping on your show, talking about how we both have put the monster back under the bed. In the meantime hang in there. Do what you need to do. God put you here to do great things. You have done, I genuinely believe that there is more to come. The best things in life ain't easy, but we persevere. We get through. It won't be pretty, it won't be fun, but just as the darkness of night, follows the sunniest day, so the Sun rises again. 

Give me love to Lisa and the boys. In some ways, it's harder for them. You know what the coup is and what you have to do. My mum had cancer when I was eight and it was awful. She was told she had 3 years maximim in 1970. She died in 2008. What her amazing surgeon, Mr Phillip King learned through her treatment changed many things in how such cancers are treated.  He'd wheel her out at seminars and explain to other surgeons how they could improve survival rates. He told her "Don't despair, you live in the best era to get cancer, we can cure things now that even ten years ago were terminal". The same is true today, only a thousand times over. Give them boys a big hug and make sure they know you love them. And make sure Lisa knows how much you appreciate her. I am sure she knows you love her, but appreciation is different. 

I probably won't be this nice to you again, that's not how we swing, but right now I just wanted to let you know that all of us in the Tichborne household are on your side mate. 

Take care and get better.

Rog T

The Saturday List #494 - My top ten non pharmacutical remedies!

 I bought a new pair of trainers yesterday! So what you might ask? Well I went to Soultasia in Bushey last night, and had no ankle or knee pain at all, despite having done an hour in the gym. I am plagued by ankle and knee pain, sobeing on my feet for four hours with no pain is a good thing. My old trainers had worn out and weren't providing proper support, meaning I was starting to see the return of chronic knee pain and ankle pain. Now it is not just the trainers, I get custom made insoles for them, which provides arch support. It works. I always look for a non pharmacutical solution, if I can. I am not an idiot, when my urologist said I needed a radical prostatectomy, I had one. But I will always try a non medical solution first. Now none of this is medical advice. See your doctor first! But these work

1. Ankle and knee pain. As mentioned, I get ASICS trainers, which have the best support and I get custom made insoles. This almost cures it for six months until the trainers wear out. I was told in 2009 I needed new knees. I played football for another eleven years and even now I am keeping the surgeon at bay.

2. Chronic back pain. In 2005, I had an MRI and it was found that I had fractured my spine and where the bone healed, there was a spur of bone pressing on the nerve that runs down. It was causing intense sciatic pain. I was told I needed an operation, that meant 12 weeks in hospital on my back and had a 20% risk of paralysis. I asked if there were any other options. The surgeon said "You could try physiotherapy", but with this level of problem, I think you need an operation. I said I'd try physio. I was given 22 sessions of massage and manipulation. I also was given a series of exercises that I do until this day. I have constant pain but 95% of the time it is at a manageable level. 2-3 out of 10. When it gets worse, I do the stretches and it improves. Some things, like standing still in one place make it worse. I avoid this.

3. Thyroid problems. In November, I was advised that my thyroid hormone levels were out of the normal range and rising. I had also let myself go, My weight had ballooned to nearly 18 stone. I set out on a regime of fasting, dieting and exercise. I read up on the condition and found that it could be caused by low selenium levels. So I also started eating brazil nuts every day. Now it is back in the normal range.

4. Acid reflux. This has plagued me for decades. I am prescribed omnaprazol, but I've found that if I don't drink alcohol and don't eat fatty foods or pastry/dough, I don't get it. Eating after 6pm is also a bad thing. So I only take the omnaprazol on days where I am breaking the rules.

5. Immunity issues. In 2000, I got really ill. The doctor did tests, including an HIV test, that was negative. There was no explanation. Eventually we discussed diet. I was not eating meat at the time, I hadn't for 16 years. He then suggested that it could be a vitamin b deficiency. He told me to go and have a liver dinner. I did this and all of the problems disappeared. I know several other men who have had the same problem and the same solution worked. I now have liver at least once every six months. I like it, so it is not a problem.

6. Obesity. As I mentioned, in November last year, I was obese, with a BMI of over 35, Now I am just fat! It is under 30. I have been following a 5-2 fasting diet, doing an 18 hour fast on two days a week. I also limit my drinking to 3-4 days a week. It works. I've not gone down the Ozempic route, although most of my friends think I have. I also eat less most other days.

7. Depression and Anxiety. When I was 13, I suffered massive anxiety issues. I know (and this is self diagnosis) put this down to seeing my Mum go through cancer when I was eight and being told she'd die and I'd be put in the orphanage! I believe the experiences caused PTSD. When I was fourteen, I discoverd punk rock music. The anxiety issues abated. They still resurface. When I was 24, a mate suggested I try yoga and meditation. It works. I am not doing Yoga at the moment, my knees wont take it but I do meditate. Playing the guitar and being in a band also helps.

8. Dyslexia. I am dyslexic. Until I was 12 I'd never read a book. I was always bottom of the class. I was only diagnosed when I was 33.  My problem is mainly that I cannot process a word unless it is descriptive of an object. So a word like apple is easy to process. However to this day, a word like noun, which simply describes an item of language means nothing to me. I've still no idea what a noun is. I can look it up, but I will almost instantly forget it.  Three things made me able to cope and develop a strategy to get by. These were things I developed myself. The first was when I started writing songs and poetry, aged 14. I realised that I had to have a larger vocabulary. I also started to appreciate the feeling of words. The second thing was that I had an English teacher who hated my guts. At Finchley Catholic High School, my physics teacher John Shuttler was very much a mentor. I discussed this with him. He said "If you fail, she wins. If you want to piss her off, pass". A light came on and I worked my socks off. To mine and everyone elses amazement, I passed an English Language O level. The third thing, which I thank my mum for, is that I've always read comics. Having pictures and words together helped me join up the synapses in my brain.

9. Cancer. Now if you have cancer, follow the doctors advice. However, there is one aspect of cancer that they don't tell you. It is as much a mental illness as a physical one. It is mentally devastating. At times, I've not been able to cope and have been awful to live with. I found that the normal mechanism I used to deal with anzxiety didn't work, such as meditation. I was so overwhelmed, I couldn't do silence. I had to fill my brain with positivity. That is why my band have been so much more active in the last three years. Making music, writing new songs lifted me from the torpor. It is just an ill fitting sticking plaster, but it is all I have.

10. Erectile issues. I had my prostate removed. I was told that there was a 50 percent chance that after I had surgery, I'd never have another erection. This didn't fill me with happiness and I almost refused surgery. After the operation, I saw a specialist mens health physiotherapist. He explained to me the mechanics, and suggested I use a vacuum pump, to improve blood flow. He said use it every day. This stops atrophy of the blood vessels. Many men do not understand that it is very much a question of maintaining blood flow in that region. For me, this is still a work in progress, but I do have a degree of normal function, without using medication. I do take pills sometimes, but to be honest, they make me feel weird and I prefer not to. Men should discuss these things.

And a final bonues remedy. Did you know that when you sing, it improves your mood and raises your seratonin levels. The reason is that it increases the flow of oxygen to the brain. That is why, when you sing along with a band at a gig, you feel euphoric. I learned this through singing with my band. It is odd how few people realise this. This is why I also think that churches should only choos hymns that you can belt out. That way everyone gets happy!

And I will leave you with a song that makes me very happy, when I sing it and when I listen to it

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

The Friday Joke - The Aliens and Jesus - and some thoughts on a rather tough week

Without further ado, here is the Friday joke, heaven only know, we all need a good laugh! Thanks to my mate Iain Begg for sharing this, it's a cracker

Some aliens landed on Earth and ended up in an audience with the Pope to discuss their respective religious beliefs.

To their mutual astonishment they were both familiar with Jesus.

"Oh yes," said the aliens. "He's a really great guy, and he swings by us quite regularly. We see him most years ..."

"Really?" said the Pope in astonishment. "He has only visited us once, and that was 2,000 years ago!"

"Weird!" replied the aliens. "We always have a massive party when he visits us - food, music, dancing ... it goes on for days and is the highlight of our year - he's such a cool guy! What did you do when he visited you?" ;)

Regular readers will know that I've had a difficult week. I had the results of my latest biopsy and the results have not been good. I am facing a few months of treatment and some of the effects may well have a lasting impact on my quality of life, something I've struggled to deal with, if I am completely honest. I am lucky. I have some great friends and a great band who have been really supportive. It makes a difference. I am putting my troubles behind me for a week and going to Portugal for a week to finish recording the False Dots new album with Boz Boorer on Sunday. Boz lives in Monchique and a week in the mountains is literally just what the doctor ordered. Wednesday and yesterday were quite difficult days. As sometimes happens when I have a lot of stress, my tinnitus was literally screaming in my ears. I took the dogs around Arrendene, which was beautiful, but only really sought to lower my spirits. I looked at all of the beauty, my dogs, the fields and I thought to myself of all the people in the world and the fact that in no time at all, this will all be washed away and no one will remember us. The universe is four and a half billion years old and we are less than a blink of an eyelid. 

We'd scheduled a False Dots rehearsal for last night and I found it quite an effort to haul my sorry ass down to Bunns Lane. I felt lacking in energy and enthusiasm. We set up, had a quick chat and a cup of tea and then launched into a full blown rendition of our current set. We played it as we played a gig. I had made the decision that I'd put everything into it. I needed to make some noise with the band. When you play music, your problems melt away. My band mates Fil Ross and Graham Ramsey are quite exceptional musicians. They musically take no prisoners. We have worked exceptionally hard to make a set of songs that we feel are wonderful. After maybe the first four bars of Bubble Car, our first number, I was no longer the sad. miserable, morose 'c\ancer victim' that I'd felt like all week. I was the lead singer/guitarist of the False Dots and we were rocking. The songs sounded exceptional. Full of life and energy. Whilst nothing may last for ever, when you make Rock and Roll music, it sends vibes out into the ether. Music is generated by the excitement of molucules by loud noise, in rythmic patterns. Those vibrations may fade, but maybe there will be some of those molecules vibrating to the music of the False Dots forever. 

I always enjoy playing, but for me last night was a boost I really needed. I video'd our last two numbers for posterity. The songs are Not all she seems, which I co wrote with Pete Conway in 1979 and Action Shock which I wrote in 1982. I was sixteen when I wrote Not all she seems. We'd been listening to a bit of The Velvet Underground at the suggestion of my eldest brother Laurie, who suggested that it was where the roots of Punk Rock lay. We wanted to write a song to shock people, so these two sixteen year old suburban kids, with no life experience, wrote a song about a transvestite prostitute, on the run from a violent pimp, who has a Tory MP as a client, who is madly in love with her, but who is too scared to admit it. The song was written before I knew what a pronoun was. The song ends when her pimp hunts her down. She packs her bags, disappears, never to be seen again. I always wondered what happened to her? Action Shock was inspired by The Falklands war. As it unfolded and the professional and well equipped British Army triumphed over a rag bag of ill equipped Argentine conscripts, I became fascinated by the concept of two soldiers meeting on a battle field in the middle of the night. One will not survive. In 1982, my Dad was still alive. He told me stories of loved ones at home waking up in the night, knowing that their loved one had died, at the exact moment they perished. Two men, face to face, enemies, who don't know each other, face to face. Only one will come home, one will be a red stain in the mud. Scared, cold and alone. What for? Because some old men (and women), thousands of miles away, couldn't get their act together to sort the problem out in a civilised manner. Although the story was inspired by the Falklands, it could be Eastern Ukraine, it could be Sudan, it could be anywhere, any time. Young men thrown to the wolves by politicians who couldn't give a shit. 

At the time of the Falklands war, I had a chat with my Dad, a former World War II bomber pilot about the nature of war. I was 20. He said "If ever you get called up son, remember two things. The top brass are not your friend, you are just cannon fodder, but if you don't do your duty, the people you love and the things you believe in will pass away". He told me of the tricks that experienced bomber pilots would pull, to ensure that they had a better chance of getting home safely. He'd always replot his course and try to get to the target first, as he believed that night fighters would let the first bomber through, so as to not give their presence away. He survived a tour of duty of 38 missions, although he was shot down on the last op of the tour. 

These days, the False Dots write more cheery songs. I've mellowed. Our new songs have a dancy, ska feel, but we always finish with these two as we can really rock out. It may amuse you to know that Hank Marvin of the Shadows gets a songwriting credit on Not all she seems. His son Paul was in the band when we wrote it. We rehearsed it at Hank's private studio in his home in Radlett. Hank suggested the riff that makes the song. He told me "You don't need to be able to play well to play a good, catchy riff". As far as I know, it is the only punk rock song Hank ever wrote!

If you like a bit of raucous punk rock, which celebrates life at it's grittiest, I hope you enjoy these two numbers, mistakes and all! It's now Friday morning. The dark clouds have lifted. I feel in a far more positive frame of mind. After our rehearsal, we had a beer and a chat. I thank God that I have good friends and I am not facing this alone. And yes, I really am alright now. Maybe, when I come through all of this, I will start a charity to get people with cancer playing Rock and Roll music. It may not cure your broken body, but it may just mend your broken heart! Have a great weekend and enjoy the music. 

I know that this is a  bit of a long ramble, but to me at least, I needed to share the simple fact that if you want to get through difficult times, take pride in what you have done in your life, do the the things you enjoy and don't be scared to see your friends. They will pull you through

We don't need a debate to hear how David Cameron has ruined the NHS

There is a lot of debate about whether the Party leaders should have a televised debate. I think this is a completely pointless exercise. We've had five years of the Coalition. David Cameron has a track record to be judged by. Mr Cameron and his colleagues have been making hay about how well the economy is doing and how many new jobs have been created. The sad truth is that it is onlly this month, nearly five years after Cameron took the helm, that the economy has recovered to a point where we are as wealthy as we were in 2008 when the global economic meltdown happened. It is also a fact that the man in charge of business is Vince Cable, not a Tory at all but a Lib Dem. So we have to conclude that in the area where Cameron is claiming his governments greatest success, he is not even in charge. Cable is an economist and is widely recognised as being one of the most capable members of the government. This is born out by the fact that neither the Tories or Labour attack Cable in the way they attack Clegg. Any attempts by these parties to bully Cable inevitably end in a very bloody nose for the bully boys. But Camerons proposition is that the most successful cabinet member should be turfed out on his ear and replaced by a Tory lackey of Cameron.

The sad truth is that the most important thing the govt do is to run the NHS and this doesn't have Mr Cable in charge. This has had a succession of useless Tory lackeys, who are not up to the job. The latest one Jeremy Hunt has been in charge since 2012. How is the NHS doing under his watch. Now regular readers of this blog know that we normally run a joke on Friday, but at 1.20 this morning I got this email from a regular reader of the blog

Thanks to the negligence of Barnet General Hospital I have an incurable cancerous disease the left overs of a carcinoid tumour.

Periodically I have massive debilitating carcinoid attacks and have to inject myself, or if the attack is particularly bad a member of my family has to inject me.

At 10am yesterday morning March 5th , I say yesterday morning because it is now 1-15 am on the 6th. I had a severe carcinoid attack and my wife called the specialist nurses of the Nets team at the Royal a Free Hampstead, who qualified the actions we had taken were correct, but also suggested I take at least one more injection. They asked that we call them later to let them know how things were going which my wife did, but as my symptoms appeared particularly severe and I had minor surgery three weeks ago. They were concerned I might have a bad infection related to my recent surgery, and advised us to ring our GP to get a home visit as a matter of urgency.

My wife called the surgery at 4 pm yesterday March 5th, it is now 1-20 am on March 6th, and I am still waiting for the so called out of hours emergency Dr to arrive, 9hours and 20 minutes since my wife called our GP surgery.

Yet Mathew Offord  the joke of an excuse for an MP of Hendon, insists there are no problems to deal with in our Local NHS, it is now 9 hours and 25 minutes and still no Dr, my wife has gone to bed exhausted, and although I am feeling really ill and have had no sleep for two days, I have to sign off and await the Dr.

How on earth can ignore this? How on earth can anyone with any humanity say that this is a right and proper sitution? There is no need for any debate on this issue. The NHS is falling apart if a man with cancer cannot get the treatment he needs. We read of the barbarity of ISIS, but what we are hearing of here is far more brutal. A man in excruciating pain for 9 hours with no treatment and no help.

That is the sad truth of David Camerons reign. Anyone who reads this blog (look at yesterdays entry) know that we are not friends of the local Labour party. We do however have to look at the bigger picture. In the London Borough of Barnet we have two marginal seats. These are Mike Freer in Finchley and Golders Green and Matthew Offord in Hendon. The sad truth is that the only way we will see the NHS sorted out is to send these two extremely poor MP's packing and replace them with someone who cares about the NHS.

The Conservatives do a grand job looking after their millionaire supporters, top bankers and businessmen. The sad truth though is that any one of us could be writing that letter above. I have cancer and I am ony too aware of the Sword of Damoclese over my head. That my friends is the truth. And tomorrow it could be you, your wife, your son, your mum, your granny, your mistress or your favourite auntie. Unless you vote to fix the problem in May, this will only get far far worse. You don't need a debate to figure that out.

Sorry there is no joke today. I am sure you understand though.

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

Guest Blog - Discrimination against the ill by Barnet Council? - By John Sullivan

By John Sullivan,

I just read your cancer blog and the update on your own personal cancer issue. My cancer treatment left me with a stomach problem, a quite acute stomach problem that attacks me at random, it should not have happened it was probably  an error on the part of a member of staff of the NHS. But I have never thought to try to sue or anything like that I am just grateful to the NHS that I am still around to enjoy my family, and support my beloved wife and daughter, and  a public free at the point of need NHS currently being privatised by stealth as is the London Borough of Barnet via the One Barnet programme without consultation.

As you are aware part of that support is my dogged determination to ensure quality of life for disabled people in Barnet, with a particular interest in the activities of Your Choice Barnet and its board of directors, along with LBB councillors and officers that are highly paid to ensure the quality of life for the most vulnerable people in Barnet. One of whom is my daughter Susan and linked to her and  important to her quality of life are her peers with a learning difficulty and some with a sensory impairment and other disabilities, and the vitally important skilled and committed support staff  we rely on and value so highly yet have no value where LBB councillors  and YCB  directors are concerned.

Even before the formation of YCB, we had from the then head of adult services Kate Kennally obfuscation misinformation and obstruction, and absolutely no attempt to meaningfully consult on equal terms with parents carers and service users on any important issue. Someone determined to get her own way, someone that thinks they know everything and parents and family carers with hundreds of years of coal face experience know nothing. As a consequence she set in train the divide and rule policy that was adopted and continued by YCB to ensure complete control of all and every decision, ensuring parents and family carers have no impactive input on any subject. Someone enjoying an income in excess of 150K per annum that has decided that skilled coal face workers that have forgotten more than they will ever know about attending disabled people, are being overpaid and as a consequence are having their already low wages cut significantly. A revisit  to the guest blogs of Linda Edwards MBE and the torrid time she had convincing this highly paid person that her daughter Rachel was not enjoying any quality of life or being treated properly will give you some indication of where I am coming from.

Last night at the BSOMC committee Councillor Rawlings was successful in his attempt to secure a review of YCB  I am pleased to say. What I am not pleased about is the rules of this committee. I wrote to them asking permission to speak to the committee in favour of the request of Councillor Rawlings, and believe it or not after having checked with the legal people, that permission was granted . I am a Barnet resident that wanted to speak in support of an item on the agenda, so what need was there to check the legality of my request ? simply because I had had the courtesy to advise them that along with other parents carers and service users we had already instructed experts in this field to undertake a complete review of YCB. Its successes and failures related to the business model it was launched upon, the future viability of all YCB services in their questionable hands, and the viability of bringing all YCB services back in -house. 

We hear the cries of  "outsource anything that moves" Conservative councillors. We hear  that to bringervices back in-house would not be viable based on prejudice not fact, so our review will allow us a few unbiased facts to consider.

One fact  Kate Kennally, LBB councillors and YCB directors  cannot overlook is the fact that after more than 40 years of action in-house,  these services never finished up in huge debt, or found the need to get rid of skilled workers and replace them with cheap labour unskilled labour any Tom Dick or Harriet agency workers. As is the case after just one year of YCB, so might I suggest the return to in-house provision might just possibly be a better bet for Barnet taxpayers and service users and families , than those so determined to outsource everything suggest..

Sadly I was attacked earlier in the day by my random cancer treatment induced stomach problem and unable to make the meeting to speak in support of Barry Rawlings, therefore my colleague and co joint founder of CADDSS Janet Leifer asked to read my statement on my behalf.  It was a statement supported by many other family carers , parents and service users and the intention was quite simply to have those opinions placed on the record and Janet was denied that request.

Like Roger and everybody else that has been visited by cancer I did not choose this situation, and I find it incomprehensible that in these circumstances my democratic right to be heard and have my opinions placed on the record was denied me. Purely and simply because I am one of the many victims of cancer, and was unable to attend and afforded no facility to ensure my democratic right to  be heard via a second party was ensured.

I am so pleased that Councillor Rawlings has stuck to his task he has been continually fighting the corner of disabled people in Barnet and the call to bring YCB services back in-house ,so all we can do is hope and pray he like us is not struck down by some illness. Because that might result in his lone voice in the council chambers in defence of the most defenceless people in Barnet , being silenced  by an uninvited  illness, which I find absolutely bizarre. I ask "since when have people with Cancer been legitimate targets of discrimination and when did they cease to have the rights and dignity afforded to healthy people"