ALL WEEK I had been complaining to Lorraine and any one else that would listen ” I am going to be 59 this week I am nearly sixty years old, gees I am getting old” working with young people does have its downsides.
And now I was reacting to this piece of news with “are you crazy I am ONLY 59 years old” a demonstration on how just one sentence can totally change your perspective on life. It all started because I had a swollen gland on my neck, not unusual as my lymph glands had swollen before; a dose of antibiotics and on we go. Well evidently not quite and my doctor stated “at your age your glands shouldn’t be swelling this is something that happens when you are young”. “So you may have an infection but you actually might have cancer”.
Wow just like that in one sentence I had gone from a sore throat to having cancer. “Does it hurt when you push it” indeed it did, “that’s good because if it was a tumor it wouldn’t hurt. So armed with a course of antibiotics and a blood test I staggered out into the sunshine.
A week later the lump hadn’t gone down but the blood test had come back negative, so the message on my answer phone announced. I could arrange another meeting with the doctor if I wanted and that was that. Now the thing that motivated me the most was the way the doctor had broken the news to me, clearly not understanding the role of a service provider. So I thought I might look for another doctor, especially as I had to travel to see her and she kept me waiting half and hour and didn’t bother to apologise.
By chance I was talking with a client the next week and mentioned to her the conversation and how I was looking for a new doctor. She told me how fantastic her doctor was and by chance he only worked round the corner from where I work. Upon phoning I was told he wasn’t taking on any more clients and asked how I had found him, I explained that he had been recommended and how people from work went to the same practice. Two days later the phone went and I had a new doctor.
THE SECOND OPINION
The next Monday I was in front of my new doctor who took one look and said “thats not good we need to get to the bottom of this do you have medical insurance” indeed I had. He was immediately on the phone and ringing specialists for an appointment, most it seems take the school holidays off (to go skiing I suppose) but third time lucky and I had an appointment for that afternoon. This doctor actually phoned me up a few days later to ask what the results were, now that is someone who understands service and has elevated himself among his peers.
The specialist was immediately concerned and told me he thought it might well be cancer and proceded to put a tube down my nose to see if there was anything visible. While he was doing it I thought of the entertainers who push nails up their noses as a party trick, personally I don’t recommend it . ” Nothing to see there” so on the phone again and a trip for a biopsy the next day. This was a fine needle Aspiration ( a needle pushed into the gland and a small piece sucked out) actually done three times another thing I can’t really recommend . The call came from the specialist ten days later “bad news I am afraid, you have a malignant tumor, you have cancer of the throat,” “we need to get a CT scan and do a medical procedure to find out more”.
Just a wee note to the medical profession……after you tell someone they have a malignant tumor it is probably best to shut up and arrange to call the person back the next day . For the next ten minutes my specialist proceded to tell me what would be in store, and I agree I may have heard what he said and even asked a question or two but my mind was still stuck on the words MALIGNANT TUMOR, to this day I still can’t remember what else he said. What he did say was, “we caught it early, this type of cancer doesn’t spread. you have a 95% chance of survival, it is slow growing”. So a CT scan was organised the day before my medical biopsy. This is the point where medical insurance becomes the real advantage as with the assurance of being paid things seem to move much faster.
By now I was beginning to think of the “what if” and realising that I had by chance fallen into a second opinion, not because I thought the doctor was wrong but because I didn’t like their bedside manner. “Make sure you take you prior approval letter when you go,” seems everyone wants to be assured of being paid. The CT scan turned out to be a whole torso scan ( a little odd for a cancer that doesn’t spread ), “just a precaution” I was told. the scan came back confirming it hadn’t spread.
I told my specialist that I wasn’t frightened by this cancer, which he took to mean I thought it wasn’t serious “you need a healthy dose of fear” he told me, then he told me a story of a lawyer he knew that had cancer and had “died horribly” because he hadn’t been serious about it. Really what had happened was he had left treatment to long (not my problem as I was early stage). I tried to explain the fear was actually a really bad thing which caused people to make bad decisions and caused stress so there was nothing healthy about it. He didn’t get it, ( who trains these people).
The first thing I did after the MALIGNANT TUMOR phone call was to look for a hypnotherapist. When you are faced with a life threatening situation the most important thing you can do is look at it through a disparate perspective. I am a firm believer that “gut feel” is the strongest survival tool we have, and in order to be able to listen to it best we need to have no barriers in the way. Fear is a barrier so is self pity (why me) also anger and the most dangerous of all things, other peoples opinions professional or otherwise. Now Hypnotherapists tend to be people who hide a bit in the shadows so I turned to mister Google for the answer, and the answer was Brenda. I left a message on her answer phone and hung up.
Brenda called later that day and I told her I would like to see he the next day as I had a hospital meeting on Monday and I needed some clarity around some decisions. The moment I said I had cancer the time was made available and I had a new partner on the journey, Brenda has an amazing story and it turned out she was also a martial artist ( as in a 3rd Dan Aikido practitioner) so we had lots in common. Self hypnosis has always been something I have used when I need to calm down, 3 breaths and I am calm, but this time I wanted to explore lots of things as I knew I was in for a rough ride (especially in the pain swallowing area) as well as staying positive, self healing and staying calm in stressful times.
By another coincidence Brenda was and ex nurse and had read quite a lot around cancer and hypnosis so she was very keen to see what we might achieve. One lasting effect to come out of this was that I now spend half an hour to an hour meditating before I get out of bed in the morning, a great grounding way to start the day.
THE PRIVATE HOSPITAL
Is indeed a thing of beauty, I was shown to my room and handed a menu to order lunch. “I’m hear for a throat biopsy I don’t think I will be eating” without missing a beat I was handed the dinner menu, “actually I am leaving here a 3pm today” never the less I was left with it. The room was spacious and a daily paper was left on the bed for my perusal. Several people were then introduced, my nurse, the anesthetist, someone with a piece of paper for me to sign releasing the hospital of any wrong doing if I should die and then I was alone. The next visitor was my throat specialist saying it would be a breeze and he didn’t expect to find the cancer had spread to any other part of my throat. After a short wait I was wheeled of to theatre for the opp. Nothing to report here other thanI woke up (always a good sign) with a somewhat sore throat and was told by my nurse that it could be a lot worse “you might have been diagnosed with Multipul Sclerosis” a fact that I agreed with indeed.
She also gave me some websites to look at around cancer, so all in all very helpful. I was discharged a couple of hours later. Another vist was arranged with my throat specialist who informed me that the biopsy results had come back and the cancer hadn’t spread anywhere. With that he told me he had arranged a meeting with an oncologist and to book in a meeting with him sometime in February. About this time he told me that I would be having radiation and chemo as my treatment.
“Mmmm I don’t think so” I replied, my sister in law had chemo and had nothing good to say about it at all. and it was after all mine was early stage. I felt that my body would find it much more useful being healthy than destroyed when dealing with the radiation and cancer.
I also told him I had a root cannal that would need removing and asked if I should get it done while I was waiting for other things. He told me to wait as it would be done at the hospital and was therefore free, I said I was happy to pay to get it done privately. That piece of information delayed my treatment by two weeks ( they won’t treat you while you have a gaping hole in your gum ) which really pissed me off as I had asked him a couple of times.
His parting shot was “You haven’t asked me the most important question,” I wondered what question I had failed to think of “what I would do?” he replied. I knew what he would do, he would do both chemo and radiation…once again he thought what he would do was more important and was telling me I was wrong.
This is the most important part of the journey as your partner, friends or family (whom ever you choose) are going through this with you and their fear, doubts, anger, at what has happened to you both will have a HUGE impact on your treatment. Lorraine my partner was very distressed by this news and had to deal with the thought of my death as now a very real possibility. Also the treatment and sickness tends to overwhelm you until it is all you can really focus on, everything from pills to take endless hospital visits to completely new eating regimes to dealing with tiredness.
This had now become our challenge and fortunately for me Lorraine has my back 100% which has made dealing with this so much easier. ” Iv’e been reading about cancer and nutrition and you will need to start having a raw food based diet from now on” (Lorraine is a psychologist and therefore experienced in sourcing relevant information) so off we went to buy a juicer and a blender.
A note to remember here is the cost of trying to live healthier is many fold, organic foods tend to be expensive, seasonal and harder to find. Finding food that doesn’t contain sugar, preservatives, salt etc is incredibly time consuming and there isn’t that much around. But there are some great sites online that have great nutritional information.
Your support will also be going on their own journey with you and may well be at times overwhelmed with their own inability to help. Lorraine nagged me every day to eat this…eat that, it was a constant nagging and at times it became a pain in the arse ( as she wasn’t going through this , didn’t know how hard / painful / impossible it was ) but she sat there and made me eat the few things I could eat. And without that support I would never have managed to eat my way through this ordeal ( some days it would take me 8 hours to eat 3 meals) but the fact that I did meant I didn’t have to learn to eat again and two months after the treatment I am back eating all the foods I did before.
A wee note to support people please try and keep your emotions out of the mix as your anger / distress / guilt ads so much pressure on the person going through this, if you feel it is all getting to much find someone you can unload on, this is very important as when you are not feeling well it is easy for things to explode and so hard to put them back.
This is where my experience started to take a turn for the worse, I turned up to the meeting expecting a chat with an oncologist. Instead a steady stream of people entered the room, “open your mouth please” a women started prodding my mouth and teeth, “Mmm thats not good lots of big fillings” well actually I had my Amalgam fillings removed so I though that would be great. I explained I had a root canal so that would have to be removed, “iv’e arranged for you to see the dentist at 2pm today” if that was the case then why was I having to put up with this women. Next the speech specialist got a call and left so I didn’t speak to her, a doctor was introduced who sat an a chair and never said a word to me the whole time and a lady who was never introduced to me was there (just to make up the intimidation numbers I suppose).
Note to hospital…please make peoples first visit an event they can handle having a room full of people is both confusing and intimidating. Next to speak was the oncologist, someone who looked half my age and clearly a person who believed in his own importance. “So tell me when did you first notice the lump” was he kidding I had just undergone CT scans two types of biopsies and a throat specialist and this twat was sitting in front of me with a blank pad and no notes. Note to specialists if you don’t have time to read the notes at least bring them with you, my heart sank was I really going to have this idiot as my oncologist. “We will be giving you radiation and chemo as your treatment” he told me authoritatively, “well no I don’t think I want the chemo” I responded, and it kind of went down hill from there. “We don’t just OFFER chemo to everyone” he retorted ” you are lucky to be offered it, old people and really sick people don’t get the opportunity” ( this is because it kills them) “and besides the statistics prove you have a 4.5 to 8 % increased chance of survival up to 5 years”.
Lorraine responded “that sounds interesting would you have the research I could read”. “Look it up on the internet” was his terse response. I was gobsmacked, was he joking, here I was sitting in front of a so called expert who was telling us to look it up on the internet, if my first impression had been a bit hasty it had certainly be backed up by this comment. “We are going to have to send you down to get peg put in” he announced, what is a peg? “well it is a tube that we put into your stomach so that we can feed you through it when you can no longer eat”.
To say I wasn’t keen was an understatement I have heard about what happens when your stomach lining gets damaged and the juices get into your body cavity. “What is the chance it will go wrong” I asked, well evidently it was nothing only about 10% of operations went wrong. So what happens when it goes wrong, well thats were the proverbial hits the fan and a serious operation is going to happen which is very risky as they have to cut you open and try and stich up the stomach. “So I am getting radiated and the Chemo has destroyed my bodies ability to protect itself and you want to lie me on a table in a hospital full of superbugs and cut me open, what do you thing the chances of me surviving that is”. So here was a expert telling me a 4.5 to 8% was a fantastic deal for Chemo but 10% on death by stomach rupture wasn’t a big deal, he clearly didn’t understand percentages to well.
Well that was never going to be on the cards I sure as hell didn’t need an operation in the middle of treatment so I asked what else they had. Ruth the oncology nurse told me they could put a nasogastric tube down my nose and into my stomach. Totally non evasive with no danger, why the hell hadn’t offered me that in the first place. The dentist woman told me that the tube would affect my talking but as soon as she left I was informed this was not the case as it was in a different place than the vocal chords, it became pretty obvious that the standard of information was not consistant even within a small team. I told the oncologist I was going to be able to eat through the treatment anyway so I wouldn’t be needing anything anyway.
“NO your not” he replied “this is going to make it impossible to eat owing to the place in the throat we are treating” I informed him he had no idea whether I would be able to eat or not and that as I knew the throat shrinks through the radiation and that if you stop eating and just rely on being tube fed you run the risk of having to learn to eat again and you may in extreme cases find it imposible to eat some foods ever again. “This is going to be to painful to eat” he reiterated and I in my nieve ignorance told him I had done years of martial arts training so he had no understanding of whether I would be able to eat or not. The next thing that came out of his mouth was “you are going to get depressed” once again I retorted that he had no idea what my mental capabilities were and that I had been depressed before and there was no way this would be the cause of another one.
Everything that came out of this man’s mouth was abusive and dismissive I made a mental note to fire him forthwith, if you think that is wrong remember this is your life not THEIRS and you have every right to be with someone whom you trust and enjoy remember this is a PARTNERSHIP so don’t put up with arrogant and bulling professionals to them you are just a statistic. Lorraine and I staggered away from the meeting wondering what was coming next. As soon as I got back to work I sent Ruth an email stating that I would not be using that oncologist “ever again” and asked her if it was possible to have another one. It would seem that indeed I could, and arrangement was made to meet the next Monday as well as a speech therapist and a nutritionist. But my next meeting was to get made a ……..
THE FULL FACE MASK
Designed to hold your head in place so that you can not move while you are being radiated. Now it is at this point that the experience started to become real for me and for those suffering from claustrophobia or just don’t like lying still for 30 minutes then this is your first hurdle.Some people require medication every day to get through the radiation. For me I had done lots of full face masks in the film industry so I was used to rubber and plaster being poured over my face and straws stuck up my nose. Well it wasn’t that bad at all just a thin web sheet that they drape over your head , mould it tightly round your features while it is warm then cool it down with cold towels…done.
The bit that wasn’t quite so cool was the pressure on your head while they clipped it to the board you lie on for the radiation, they clip you down so hard that I had indentations from the mesh in my face every time they undid it. Big deal I hear some of you say and you might be right, but the extra bit they do is hold your mouth (wide) open with a tube which has a tongue depressor running down the middle, they get you to hold it in place while it is soft then cool it down so that your bite holds your jaw in the exact same position. This time however the lady removed the cling film they had covered it with before it had cooled down, the result being she had pulled it out of shape. Once it cooled they popped it back in to test…result was it wasn’t right, so she then proceeded to try to force my jaw in to the mold ( farcical) we of course had to go through the whole process again.
It is experiences like this that make me realise just how useful a simple guide would be as I am sure I am not the only one this has happened to. The treatment would prove to me how bad things could get with your mouth wide open not being able to swallow while your throat filled up with mucus for twenty minutes, it was times like these that the hypnotherapist and all the breathing and visualisation would prove to be a life saver.
My real doctor Tessa is so busy that you have to book in months in advance to get to see her ( hence my visit to another doctor at the start of this journey) and when I had asked to see her the receptionist had responded nastily that I had another doctor now so I couldn’t see Tessa as she wouldn’t have my notes. Lorraine was shocked at her lack of empathy for someone just diagnosed and was going to complain the next day. The phone rang that night at 9pm it was Tessa she had just heard and immediately I had an appointment, now the thing about Tessa is she is an MD as well as an alternative therapist and works with cancer patients so I was in good hands.
The latest thinking in the medical world ( those that don’t believe all cures come from the drug companies) is that all things that make us sick are tied up with what has happened to us in our past, all those traumatising incidents that happened to from before you were born through your childhood and adulthood that you have forgotten about or buried have deposited chemical blockages through out your body and there is no way you will get better without dealing with them first. I can feel a few of you are starting to drift about now as this seems somewhat flaky but the thing about dying is that you fast loose the notion that the Doctors are the only ones who have the answer.
This process is called NET Neuro Emotional Technique and is actually a very emotional ride which takes you to places you may well have forgotten about, but as with confronting all things we are fearful of the result is that I felt much stronger in myself to deal with the time ahead so a job well done. Tessa also put me on to her x husband who had gone through throat cancer several years ago, “don’t go near Chemo” was his response. It turned out that his first round nearly killed him so they didn’t continue with it and after 6 years he was still alive, I took his point. “I went to a man named Ramin who did Reiki or at least something like that and he took the pain and blisters away after radiation”
So with the NET out of the way I looked up Ramin and went to see him, now as with everything in life if you don’t believe it then it won’t work and I was somewhat skeptical about the outcome but in for a penny in for a pound I decided to see him 3 times a week. Ramin turned out to be a lovely person and he worked shifting the energy out of my head and calming it down. The thing about radiation is it is like your microwave and your body becomes overwhelmed with energy which unless helped builds up in your body and in my case in my head.
Ramin really helped but not with the pain or blisters ( but then I never really believed that he would ) and that may well have been to my disadvantage. On one occasion he kept telling me how my lung was really filled with mucus, but I knew the mucus was being generated in my throat so I was very skeptical. That was until I pulled into the hospital carpark after the session, where I proceeded to vomit out huge amounts of mucus, which ment it wasn’t in my body while I was strapped in the mask. That made me realise he was indeed having a very positive affect on my body.
THE ONCOLOGIST MARK TWO
Lorraine and I waited for the oncologist MK2 to arrive and in he zoomed this time armed with an armful of papers, he had been warned in advance. David was his name and he is NZs leading head and throat radiation oncologist and being to the point was what he was all about. He immediately started to tell me how things were and what he suggested we do, you guessed it the old chemo topic reared its head again and I responded like last time. ” I don’t think so as it is only early stages” David was surprised ” what are you talking about your cancer is stage 3 your are dying you don’t have time to muck around.”
Bam it hit me again, this piece of news hit me as hard as being told I had cancer in the first place, I had been smug in my , caught early, slow growing, doesn’t spread, 95% survival etc and now I was being told I was dying right now. Stage 3 he told me was bad as it had spread to my Lymph (really bad) “who told you it was early stage and didn’t spread” “my throat specialist Mr Happy” I replied. It appeared not only was it spreading but it was spreading fast and in fact within a month it was the size of two golf balls and stopping me from turning my neck. My survival rate had plunged from Dr Happy’s 95% to less than 50% things were slamed round on their head and I was now facing the very real possibility that I would die.
And so now the statistics came into play and 4.5 to 8% of living for another 5 years seemed a better deal , Lorraine and I talked, looked like I was doing Chemo after all. David’s style might not suit everyone but for me it meant I at last had a grown up to talk with and a no bushit one at that. Lorraine’s way of dealing with my impending death was to do research and she immersed herself headlong into the world of Oncology and all the research papers she could find.
“I don’t think you have normal throat cancer” was her response one night “I think you have cancer from the HPV virus as you are not a smoker or drinker” heavy smoking and drinking are the cause of most throat cancers. She broke this information to me the night before I was going in to get tested for my ability to handle Chemo.
Bam another shock wave hit me, what should I do now, Lorraine directed me to a site where a doctor was saying that not only did HPV virus cancer not need Chemo but they were radiating people for to long as well. Armed with this new information a sleeples night ensued, but in the morning while I was meditating the answer was clear…I canceled the appointment.
“NO Chemo are you sure with this decision, if you continue to die can you look yourself in the mirror and be alright with it” indeed I could. David was unhappy with my new found attitude but as I was adamant that this was my last decision, he agreed.
One thing that becomes apparent when fitting into the health system is that there is little room for any NATURAL health providers, I asked him about intravenous Vitamin C which immediately got a negative response about how it would be potentially dangerous as it worked opposite to the radiation ( a misconception that the medical profession refuses to address even though there are a multitude of trials to prove the opposite). I was unsure whether it would be any help on the fighting my cancer but I was absolutely sure it would help repairing the non cancerous damage. My doctor set me up with a 3 week course, but it became apparent that it wouldn’t be that easy as every time they stuck the drip in my system just shut down either slowing the drip down till it wouldn’t work or filling my tissue ( tissuing not nice at all ) so after a week of trying I gave up. With this result it seems certain that I would have been unable to have a Chemo drip either, funny how things turn out.
“Better send you down for an MRI so we can work out where we are going to zap you” David said that I would be needing a 6 week bout of radiation for 5 days a week, this in effect was the maximum amount of radiation you can handle before it kills you and there is no other treatment to follow up if it doesn’t work.
And that was it really, I was ready for the treatment.
SO WHAT HAVE I LEARNED
Just because it is sore doesn’t mean it is not cancer.
Make sure to get a second opinion your life might depend on it.
Just because they are called consultants doesn’t mean they know whats going on, use Google do the research.
Fire anyone you are not happy with do NOT put up with abusive and condescending health professionals this is your life not theirs.
Freeze Dried Coconut Water saved my life as it coated my ulcers just enough to let me eat a bite. Without it I would have been hospitalised.
Find sites and people (cancer society etc) to talk with both for you and the people around you.
You will loose some friends out of this so be prepared ( death makes some people uneasy).
If anyone is going through, or has been told they have cancer and would like to contact me please email firstname.lastname@example.org.
Now this is off my chest normal blogs will resume, thanks for your patience.