Having a first person account on everything from diagnosis and breaking the news to loved ones, to treatments, hospital stays and a number of unexpected twists and turns in between – Keith was more than happy to share his knowledge with others in our live chat on Cancer from a Member’s perspective.
Sean M asked:Hi Keith - a member of my family is ill with cancer and currently getting chemotherapy under private medicine. Obviously it's not an easy time for any of us, but his openness about the disease (and humour too) have made really made a difference. What I am wondering is - with your blog about your experience, do you feel that sharing has had a positive effect generally?
Keith Hern:Hi Sean - thanks for that, I would say definitely yes, I found it better to talk about it and share the experience, but not everyone is comfortable with that approach. On balance I would say yes.
Sean M:Hi Keith - thanks for the answer, agree people have different approaches/ responses. I think your blog is really good the way it has a mix of different topics - cheers, Sean
Keith Hern:Thanks very much Sean I hope it helps, good luck to your relative. Whatever he/she does just work on staying mentally positive it makes such a difference, even it's easier to say than do.
fionad asked:Hi Keith can you discuss ways to keep positive after diagnosis?
Keith Hern:Thanks Fiona - I found that very difficult for the first two or three days, once I'd reached the point of 'acceptance' i.e. I've got it so I can't change that, now get rid of it, that helped me not be so mentally all over the place. I started working with an nlp (neuro-lingusitic programming) coach specifically to stay positive and found that hugely useful as she just helped me find ways to view the situation with a positive slant. An example would be put it in perspective it's going to be five months out of an 80 year life...somehow little things like this helped a little to keep it in perspective.
Andrew asked:Hi Keith, my uncle has recently been diagnosed with cancer and I was wondering if you could shed some light on the early stages of treatment?
Keith Hern:Hi Andrew - what sort of cancer has your uncle been diagnosed with?
In my case I started with an operation to remove the primary tumour on the back of my tongue and then had two lots of five days of 24x7 chemo separated by two weeks, and then radiotherapy, I suspect his would be some kind of variation on that. The amount and type of chemotherapy does vary hugely with the type of cancer - I know people whose treatment was a monthly or a weekly dose rather than the intensity of my 5 day stints, so it depends on what sort of cancer.
multicheerios asked:Hi there - I wonder - when you were first told, how well the physician relayed the news? I can’t quite imagine how that plays out...
Keith Hern:Hi mulitcheerios - I found out by phone, and somewhat cryptic phone conversation from which I was told to go to hospital and see the consultant in 90 minutes time...that was enough of a clue for me! Very tough to handle being diagnosed.
When I saw the consultant (actually turned out to be the surgeon) he was extremely professional and confirmed it an straight talking way, which was fine. I was in such turmoil anyway that he probably could have said anything, but he was good.
multicheerios asked:wow - I suppose if you got the call to come in "right away" it's a given - still - I can only imagine the dread on the journey there...
Keith Hern:I don't remember the journey either way at all, and then thought of getting home and having to tell my wife and 13 year old daughter was even tougher...those first few hours were mental torture..but I'm sure it's the same for everyone who goes through it.
multicheerios asked:chemo does sound like a horrible part of the whole thing - it does seem like it hasn't changed as a treatment in years...
Keith Hern:Personally I found chemo was easier than radiotherapy, it just wiped me out for a few days after and everything tasted of metal, not a patch on the radiotherapy side effects!
multicheerios asked:I think I was mixing them up there - am I right in saying chemo is drug based and radio therapy is just being sort of irradiated?
Keith Hern:Yes multicheerios that's right - radio is very much being irradiated, and doesn't take long, for me about 15 minutes every day. When it comes to radiotherapy make sure whoever it is has really good skin protection otherwise it can burn quite badly. I used a Radiance gel from Penny Brohn Cancer Centre and never had any problem at all with burning.
Hannah asked:Hi Keith, I read some of your blog yesterday and thought what a brave inspirational person you are. Have you found being so open about your diagnosis and treatment has helped you?
Keith Hern:Hi Hannah - thanks for that, yes it has helped, it's also taken me into a whole new area as I now give talks about it all - yesterday I was working with www.inspiredlife.org speaking to over 100 teenagers at a school, then one of them sent me a tweet in the evening thanking me - it transpired her mother had died from cancer aged 8..it's amazing just how many people are affected and from a young age. If I can help that feels just fantastic!
Hannah:Thanks Keith I imagine what you do is a big help and very rewarding
Keith Hern:Hannah - totally, had some incredible testimonials which are really humbling, one lady I had swapped messages with to help said when I saw her a couple of months ago - Keith, without you and your book I would never have survived cancer. That felt incredible that my experience could help to that extent. Very rewarding!
Fionad asked:Hi Keith, thanks for your answer. You mention neuro-lingusitic programming; can you explain how this works?
Keith Hern:Fiona - what a question! I would go and see my coach and we'd talk for three hours, she's take me out of any comfort zone to find what she was after, but I always left a session feeling like I could walk on air. It's impossible to try to explain, I gave up years ago trying to explain to my wife what we talked about.. it is very left brain, so requires you to be a little tuned in to that space otherwise it would be very difficult.
Fionad:Sounds really interesting!
Keith Hern:Fiona - the coach I use is Helen Oakwater, brilliant lady, but Google Richard Bandler, he was one of founders of nlp, all started in California back in the 70s I think.
Wendy asked:Hi Keith - Firstly I think it's amazing that you are sharing your experiences and providing such inspiration. I am one of the very lucky 2 in 3 that has not yet been diagnosed but unfortunately friends and family have and I still find it hard to know how to react when hearing the awful news when told - "I may have cancer". From your perspective, what is the most supportive way in which people can react to such news?
Keith Hern:Hi Wendy - telling people and how they react is difficult, \some people just can't handle it and disappear off the radar. there is no right way to react: what can you say: sorry to hear it? you'll be fine? good luck? oh no? and a million others. I got to the point where I wasn't phased any more. My wife and daughter were brilliant, but it's really tough on them as well, particularly as my daughter was only 13 - telling her was the hardest thing I have ever had to do in my life. Friends also react differently, and it's the ones who keep calling that are great, and for me there were surprises with who they were.
Bobby asked:I'm just here to observe thanks, would love to hear about your book too!
Fionad asked:That's a good point, it would be great to hear about your book and the response from readers
Keith Hern:Will do - I started writing to stay sane in the first couple of days after diagnosis, and just kept going all the way through hospital, treatment and everything. I backed that up by photographing the treatment which I thought might be helpful, after all I had no idea what it looked like when I was diagnosed so I'm guessing that's true for most people. The idea is to hopefully de-mystify the treatment therefore help reduce the fear element, which is alive and well just as soon as you are diagnosed. More to come
I covered as much ground as I could, from the practical angles like what the treatment is, what it looks like, what the side-effects were; to all the characters I met in hospital (patients, nurses and so on); moments of humour (there are some !) and how uplifting it is to be able to share a laugh in those situations; the mental rollercoaster that's involved; what it's like not to be able to eat, taste or sleep through the night for 8 weeks as a result of the treatment. Alongside what's happening I was also working on leading as normal a life as possible, keeping in touch with work, meeting friends anything just to keep the mind and where possible the body active and not spending all the time thinking about the cancer. Then the really good bit is when I realised I had just turned the corner and I was on the mend, what a great feeling that was - all came from wanting to take a few mouthfuls of Bangers & Mash (yep, that's where the title came from) having not eaten for 8 weeks...I was so happy!
That was early October; my re-scan was late November to see if it had worked, very nerve-racking I can tell you. Check-ups always are.....I needed one more operation and then was all clear - just the best feeling!
I went on a trek to Iceland and raised £7000 for the hospital as my way of saying thanks, that was the last chapter in the book. Two years later I was diagnosed again so started on the next book, which I had half-written by end of July this year. In early August I was diagnosed again, this time in my right lung, so the book has been deferred until I'm through this, but aim to have it finished late spring next year.
Check out the new website: www.journeythroughcancer.co.uk for all the information. I've now turned the book into an inspirational talk which I have given to a range of audiences, from Fabulous Women last Friday, to a whole year of an Academy school yesterday; to over 600 people in early November... cancer has made many a difference to my life, some of which have been for the good.
Bobby:Thanks, I'll definitely check out that website
282353 asked:My boyfriend told me He wanted to break up but no real reason then he admits he has lung cancer . He had cancer before but has been in admission then now finds he has lung cancer l refused to break up with him as l love him and care about him. I find it hard as he won’t talk about it unless I try to bring it up he won’t tell his mum and he won’t discuss anything.
Keith Hern:Hi 282353 - yes that's very difficult I know, it's just how some people react, he may need time. What's he doing about treatment?
Would he go and talk about it to a GP? A friend? Someone else just to get him talking? Is there anyone you could talk to and get some recommendations about how to get him to the point where he'll discuss it?
282353 asked:He says he is not having treatment then brings up about taking medication for something else I’m confused in what he says. He also talked about going somewhere to work overseas then coming back after as he is strapped for money. I am so confused.
Keith Hern:When was he diagnosed? He may well be confused as well. What about asking the doctor/hospital about advice - they'll know where to point you. I meant advice as to what sort of specialist would be best for you to approach to help bring him out and talk about it.
282353 asked:He has told people we are not together but they see me with him over the weekends. He says that he found out in August. That’s the thing I would like to do this but I find it hard to ask him the right questions.
Keith Hern:That's when I found out I was diagnosed with lung cancer as well. Not sure what to say about your relationship - could you get him to talk about that, which will hopefully lead into the cancer? He needs to talk to someone and let it all out - anything to get over that stage, then it will become easier.
282353 asked:I don’t want to push him away further but will try to this on Sunday.
Keith Hern:Good luck, but if he won't talk to you he needs to understand he should speak to someone, preferably in the medical world so you can start getting to grips with it.
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