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.
First and formost.. you are amazing and a true survivor and i am blessed to be able to read your stories. I just wanted to say thank you for being the only person I have come across who has the same view point on the fcat that the 'C Word' is not something that should be whispered about and kept behind closed doors!! People are so ignorant (not purposly) about cancer and usually have no idea what is it or what its about. I find myself, still, four months on, having to NOT talk about what happended to me, to friends or collegues. simply because they have previously made it clear they find it unconfortable! arrgh.. i was the one who went through it, not them, so what is the big deal. people need to be educated about cancer and halp prevent pepople becoming fearful! it takes the biscuit when i first shaved my head to get rid of the falling hair, that a very close friend of mine told me to keep my head covered infront of her because seing me bald will upset her?? what is all that about? i was bald not her?? that says it all to me!!
Great to hear from a fighter - your story (blog - I must try to get with this new language)speaks miles about you.
It is a great shame that "friends" can react in the way you described but as I have said elsewhere we are all different and to me it seems they are themselves very insecure and scared.
I have attempted to place the following message in the helping hand forum but it doesn't seem to be there so I will put it here as some of these tips also allowed the odd friend of mine who couldn't deal with cancer to come round and discuss things openly.
TEN TIPS
1. Do not get angry or start looking to blame others or wonder why your GP didn’t refer you earlier. Who are you going to get angry with your anger and similarly the anger of your loved ones can only affect you and your family. Anything that detracts from your ability to come to terms with the cards you have now been dealt can only have an adverse effect on you and your treatment.
2. Despite the temptation, which often seems quite overwhelming, to keep things to yourself – DON’T. The dreaded word Cancer should not be something whispered in quiet corners and talked about behind close doors. To be able to become focussed for your battle you, your family and friends need to be able to openly discuss your Illness – Remember that although all cancers can’t be cured ALL CANCERS CAN BE TREATED.
3. Talking about your cancer will initially be very difficult, especially when old friends (who don’t know) phone up telling you about their great holiday and how well you were looking last time they saw you. If you have access to E Mails take yourself to your computer write a “round robin” letter to your friends about the discovery of the cancer, what the specialists have said, any treatment they are proposing or tests you still have to have….write this at the computer by yourself - have a jolly good cry whilst you are writing it….but remember point 1) don’t allow yourself to feel angry. Send this letter to everyone starting it off Dear Friends, I am sorry to toss this bombshell to you but thought you should be aware of my recent unexpected news. For the last twelve months I have been complaining of ….etc
4. Use the same letter but personalised to other “Family Members” – the news is the same so don’t spend every second in front of computer
5. If you don’t have a computer write one letter and get copies!
6. Regularly update your “Round Robins” – You will be surprised how it allows you to focus on fighting and more to the point how grateful friends and family will be.
7. Listen to your body but remember chances are that half the pain you are now aware of “because you have cancer” would more than likely be there anyway after all you are older than you were, it is winter cold and damp and remember that accident x years ago etc – Yes listen to your body and if necessary ease up slightly but if you were doing things the week before you were told you had cancer why can’t you still do them today!
8. Be aware that you are a lot stronger both mentally and physically that you possibly think – get your act together discuss things openly, allow people to help you do the things you want to but don’t get them to unnecessarily do them for you.
9. Realise that despite the many hiccups you may well encounter on the way you can develop a positive attitude. Cancer is just like a long and winding country road enjoy the good scenery and get past the rough areas as quickly and as safely as you can.
10. Failure only begins when you stop trying to succeed – don’t give up and the very best throughout your treatment utilise the discussion groups!
These are some of the things that have worked for me and quite a few people I have met annd talked to over the last two years have gained value from them.
I was given a misdiagnosis of Stage 2 in Oct 06 and went through chemo and rt. The consultant said, in front of a coterie of junior docs, "We'll start on your neck next,", then laughed, "Didn't you know?" Next appointment he just said, "We made a mistake" (no apology). I had some more rt, then They said it was terminal and I would die in 3-4 months. I paid for my funeral (a railway one where extracts of my infamous diaries would be read!). Well, that was nine months ago. I don't think it's a miracle cure, but I have started asking my friends if they've got Compassion Fatigue yet. "We can't keep up with you," they tease. Turning point seemed to be de-stressing with aromatherapy, and with losing my jobs (one of which I hated). I've honed my diet. I've also had to reinvent myself and have gone back to producing Fine Art, which I haven't had time for because of paid work. My motto is CTD defiantly (docs' shorthand for Circling the Drain - they must be human if they have a sense of humour!). xxxxx to you all.
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.
Matt this is so true and the reason I started a support group website the Ovarian Cancer Support Group as when my wife was diagnosed with Advanced Ovarian Cancer, whilst she had a lot of INFORMATION from the hospitals, it was when she had left the surgery that it hit her so hard. We could not then (April 2007) find anyone to actually "talk" to and to 'learn' from, and she was left feeling so very lonely, vunerable and unbelievably desperate.
I won't tell our story here, as its well documented on the website in the Who Are We link but would like to add that it is great to see this Forum so successful in so short a time and it's thanks to the likes of yourself who have no qualms about getting such a positive message heard,
Thank you so much Matt, you are a such a stong shoulder for all readers
Peter Dobson
Ovarian Cancer Support Group
www.ocsg.co.uk
PS. For interest: We asked our local surgery to place a website advertisment which is simply to let people know that there are people they can talk to out here. The surgery reaction was amazing, indirectly saying that they had no interest to advertise the website, as they had "sufficient posters" on the wall, that's right they have lots of posters, none of them of any interest to the patients.
Posters which say, form an orderly queue, wait behind the red line, have you read the patients charter? don't touch the computer, yes non that are supportive to victims of cancer who desparately need help, need I go on?
joanne
how could you call that person a close friend when she asked you to cover your head because it upset her. god what a selfish & inconsiderate person. if people don't want to hear about it i say tough this life deal with it
Thank's to all that have added little bits to this thread and my very good and heartfelt wishes to you all.
Hopefully it is stories like my own and clearly that of Penny and many others who contribute to this site that show even with "Terminal diagnosis" it is possible with the right attitude and frame of mind to confound "the experts".
Each and every day I continue to do things I want to, in the first four days of this month I have done two 45 mile bike rides, serviced a couple of my classic motorbikes and more importantly visited three different people in our local Cancer Ward and managed to get them talking about their fears. I hope I have also given them that little push they needed to realise the sooner we can get past that terrible moment when the (stressed and often overworked doctor) says "sorry I'm afraid you have Cancer", we can start to influence our own ability to fight back.
Lot's of people I now know openly talk about Cancer and I have seen an immediate and remarkable change in the way many sufferers and their families now accept / respond and openly discuss their treatment.
Getting people talking and sharing personal experiences is of course how WE ALL CAN HELP OTHERS - do your own little bit - it will even make things easier for you!
AS for my personal battle I have in the last three weeks seen both of my specialist Consultants, at two different hospitals (which thanks to the way the Government have regionalised the NHS, neither can efficiently share my information with each other) but each are still amazed with my progress - one want's to bottle whatever it is I seem to have (but he doesn't know what he is looking for) the other jsut introduces me to his colleagues as "now this is my miracle man".........well being selfish for once I do hope he is right, but whatever happens they have both given me time, which I am using and enjoying to the full. No more treatment at the moment and see them in three months......Now that has got to be a great boost to my own determination.
KEEP FIGHTING EVERYONE - STRONG WILL POWER AND DETERMINATION TO DEAL WITH THINGS AS THEY COME ALONG REALLY DOES GIVE YOU THAT EXTRA CHANCE!
Great to hear things are still on the up for you. I agree, we should keep spreading the word that we can talk about our situations and deal with them, not keep them hushed up incase we upset anyone. I think your top 10 tips should be in a prominent place on this site for every one to see.
I am so glad i recieved an email about this site.when my cancer returned within 6 months of finishing chemotherapy and I was told it was terminal I felt numb and had visions of a short time prognosis.Once composed I listened while they told me I was a candidate for a chemo drug trial.I went on the trial which was a combination of yondelis(new drug) and caelix.I had to have a picc line in and went through 6 cycles befor having to stop due to an infection in my arm.The trial means a ct scan and bloods every 2 months.It has been nearly a year since i finished chemo andmy tumour has remained stable.Could this be a new wonder drug? "Terminal" encouraged me to do things that I needed to do anyway but never got around to such as organising a will and more importantly(as a single parent), guardianship for my 13year old daughter.I feel well and have a job that I love ( a teaching assistant working with 3 and 4 year olds),so am kept quite busy even tho my 48year old body tires easily.Cancer in an odd sort of way has encouraged me to be a more positive person and i have no intentions of giving up the fight.I know too that this site is going to be something new that i am going to enjoy.look forward to reading more of your stories .Good wishes to you all. Lesley
