The main thread already appears in Lung Cancer forum, but prehaps it should also be listed under general. The message I hope I have conveyed is that no matter what your prospect seems, mine was immediate DLA special Measures (less than six months to live certified by two doctors) in April 2006. Each individual is of course different but without a doubt one of the best things you can do to give yourself that extra chance is bring the matter out into the open Discuss your situation and knock into touch this secret wisper challenge WHICH IS CANCER!
My Story so far
Early 2006, after several GP visits in the previous 12 months (complaining of a lump in my throat), a neck lump appeared; I was referred to Kettering General Hospital where biopsy diagnosed neck cancer. Further tests were undertaken as an in-patient on the ENT ward resulting in me being told I had cancer of neck, throat mouth and tongue outlook very grim, with life expectancy six to twelve months. I was then sent to Mount Vernon hospital for PET scan’s and in addition to everything else was informed multiple (more than ten) sites of cancer in each lung, situation even grimmer with nothing that could really be done for me and I was advised to bring Christmas forward.
I was 57 years of age, very fit and a non smoker. The news was devastating and totally unexpected however having never been the sort of person that failed to accept things head on (served in London Fire Brigade for over 30 years) I told the Consultants that whilst I would accept the finality of my situation I had no intention of lying down without a bloody good fight and said I intended to do a charity cycle ride the very next day.
Many things have happened in the last 18 months, including (after various meetings with consultants of two local hospitals) my receiving 600 + hours in-patient (5 days at a time returning every 21 days) Combination Chemotherapy on specialist Cancer ward followed by three weeks Radiotherapy - I have been taken to the Pearly Gates on at least two occasions during my treatment but just refused to go through, and am currently once again confounding my Consultant Oncologist, ENT Specialists and a host of others.
I say once again, as on the 23rd December last year I was front page of our local daily newspaper and being hailed a s a “miracle Man” with quotes from the specialist that never before in his experience had he ever seen someone react to treatment in the way that I had – all scans showed not a single trace of cancer anywhere in my body.
I had a very good Christmas but in February new cancers had returned one affecting my heart – again it was suggested that there was nothing that could be done, which of course I was not prepared to accept so following further meetings my Senior Oncologist revised the kind of Chemotherapy and I underwent another four in patient sessions – brining total Chemo treatment received to over 800 hours.
It is Christmas again and I have just received results of four separate CT Scans undertaken last week and been told I have gone into remission!
Why I am writing this Thread
During the time since my diagnosis, I have met a lot of people (Doctors, Staff, and Patients) from all walks of life, all having a different outlook on life. Some Doctors and staff give the impression of being “at work”, whilst others find (make) the time maybe for just those few minutes to be there “for the individual” and it is to those people that I and I am sure countless others are truly grateful.
Patients attending hospital clinic who are told they have Cancer, irrespective of it’s severity are completely devastated and no matter how caring the individual giving the news may be (which unfortunately is in itself quite rare) leave the clinic in a state of despair – it is, at this point that I feel there is a great void and lack of care / assistance at hospitals and GP surgeries.
During my consultations and throughout my treatment I have always argued that whilst the inevitable might well be my death I would never accept that it would ever be sooner than at the end of the longest life I could possibly have. Sadly, both as in-patient and out patient I have met many patients who never get over their initial despair and fail to be able to grasp the importance of a positive mental attitude, and in discussions with these patients, it soon becomes abundantly clear that they are just receiving treatment because it is being given.
My experience also shows that the majority of “first treatment” patients and their relatives, despite introductory talks by hospital staff, were quite literally petrified of undergoing treatment and has no idea whatsoever what is going to happen to them or what they would be able to do whilst receiving treatment. These patients and their loved ones thereby unwittingly increase their stress and anxiety levels due to a simple lack of (failure to comprehend) information.
Throughout my treatment I have whenever and wherever possible entered into conversation with fellow sufferers and having learnt from my own “first experiences” managed to offer reassurance and clarification of various issues allowing them to get things back in perspective and more importantly allow them to realise that rather than dwelling on feelings of anger, worry or frustration they must concentrate on the many positive aspects that do in fact materialise from everyday life and fight this dreaded disease.
Also in the past six months I have attended the funerals of three friends, including one who was receiving treatment on the same ward, at the same time as me, each of these people were also “fighters” but sadly lost the fight, albeit they and their families did gain additional time together.
Thus far in my fight against terminal cancer I have been very fortunate, fortunate that I am the person that I am and that my family and friends have recognised that I don’t want treating with kid clothes – “cards on the table and lets discuss it” deal with everything as it arises. I was also fortunate that my Consultants recognised that I was a born fighter and saw my determination to prove them wrong as the reason, despite the odds, to start treatment, there are also many other reasons I am still here today.
However I am 100% convinced that in order for a patient to have the best possible opportunity to be able to try and fight cancer every avenue to ensure the maximum level of “Patient Understanding” about their disease / treatment must be readily available to them and their family, further that the opportunity for newly diagnosed cancer sufferers to meet / make contact (including via sites such as this) with people that have got the tee shirt is of great benefit. Cancer is not a dreaded word that should only ever be whispered it should be openly discussed and tackled head on – yes the first time you mention it people may be shocked and uncertain how to respond but discuss it, your treatment, fears and anxieties – accept what might be inevitable but summon the inner strength to confront not only for yourself but for every one who cares for you.
Whatever the future holds for me, I am certainly willing to assist / be involved in anything which might help others be able to readily gain the information they so urgently need (I have even got myself elected on to the Hospital Governors Board) to enable them to realise the importance of accepting what might be inevitable but to fight it all the way.
Great to read about your determination Lesley and yes what does "Terminal" mean? - Being told you have "cancer" is frightening enough but add the word "Terminal" and you really do have to but the brakes on the runaway mind.
I have said in other places that we and our families have to come to terms, sometimes very quickly, with the fact that Cancer invevitably is a terminal illness - it is this that makes so many people scared to discuss it BUT whilst cancer cannot be cured ALL CANCERS can be treated.
So I guess all cancere sufferers have "Terminal Cancer", however the fact that your consultant states "Terminal" normally means your situation is pretty serious and as in my case when two consultants sign a declaration which allows you to immediately receive DLA Special Measures payments statistics show you do not have long (less than six months).......NOW THATS WHEN "MIND OVER MATTER" REALLY COUNTS.... AND YES YOU CAN BUCK THE STATISTIC - I have had two good years since being put on special meausures and I intend to continue fighting, and hopefully encouraging as many people as possible for many years to come.
Keep up your own fight Lesley and have a great time with those little scamps (I mean Angels), funny how you never feel tired when your "teaching them"....is that also mind over matter?
I seldom know what comment I am going to make but what I do say I say from the heart and from my own experiences over the past two years. It is really fantastic to think that I could possibly encouraging others and I do thank you for making your reply - it makes me more determined to find time to look through others threads.
Like many of the other users of this site I spend much more time reading than posting, as I feel many more people have far more inspirational and effective advice than me. After reading your post's Matt, I have been truely humbled by your courage, determination and ability to motivate. I myself now (8 years after my initial diagnosis and treatment)have secondary breast cancer and was told it was uncurable/terminal, that was two years ago now, I sincerely believe that positive thinking is at least half the battle, well that and some damn good herceptin. There are times when I feel such a fraud all the people that knew initially the prognosis - here I still am, I often wonder if they think it was all a false alarm!!! The people that matter celebrate every day with me and for that I am grateful, after all I am no different to any other human being. I have the advantage of knowing probably how and possibly sooner than I would like but that gives me so much more than I ever had before.
Thank you for your words of wisdom and sharing your precious story.
I really really love reading your posts Mat, but i must comment on the 'whilst cancer cannot be cured, ALL cancers can be treated' this may seem like im 'clutching at straws here' and i really don't want to 'jinx' myself, but i was told that my cancer is cured? germ cells tumors are apparently known for the fact that they are curable and have a low risk of returning? i don't know, i just know that, that stays with me forever, and makes me feel at ease i suppose..
You've raised a valuable point there, Mavis. I too, because I'm still around when I shouldn't be, get the feeling some people think I'm exaggerating, that I'd been cruelly playing with their emotions, and I'm not terminal at all. If anyone else says, "Well, we're ALL dying, aren't we?" I won't be responsible for my actions... It ignores the terrible stress of having that sword of Damocles always above your head, held only by the most slender of slender threads. OK, the other person MAY get "run over by a bus tomorrow", but... Joanne, I'm sure Matt didn't mean that you still have it, just that if it hadn't been treated ... but it HAS, and it's gone! The very best wishes to all of you, and those of us who are terminal, as Iron Man Matt says, keep on fighting. I for one find this site, and chatting to the amazing people on it (you know who you are, you willywarmer-knitting, dog-loving insomniacs!) really help me in the battle. xxxx Penny
I have just joined this Forum. I can identify with so much of what has been said.
My wife was 'cured' of Cancer of the tongue following surgery in 1992. She is now classed as 'in remission' for an unrelated Thyroid cancer from 2002! She is still going strong and published a book: 'Safe In The Shadow' (link to her web site via my profile - where you can read an extract). Her adopted theme song: "I will survive" - by Gloria Gaynor!
Forgot to mention - if you click the book link on my profile - you will see that Heather's book net profits are going to benefit Cancer backup. She has received some really good feedback thus far!
she is HER2+. Diagnosed Jan 2019 as stage 4 and beating the stats with her positive mindset. She’s just about to go back on herceptin as it’s returned in her lymph nodes having been NED last April. So we’re hopeful she can get back to NED.
