My cancer story & others

The links on the main cancer page that discuss the various topics are there because I have experienced those things in my journey through cancer. For example, I had to get my head around the fact that I was ill and so there is a lot of emphasis placed on getting in to the right frame of mind. Diet too is very important, and so I included a discussion about diet.

On this page I want to tell my personal story and so I may touch upon and reinforce important things from the other pages. For us all, the one thing that is unique in experience is the moment that train hits you square on, that infinitesimal duration of time that marks a point where your life from thence, will never be the same again. It’s a moment like no other that you will never forget. At that precise moment the awful truth hits and you have slid in to a game with just one hand of cards to play, you will either win or lose, live or die.

When the diagnosis is presented to you an almost euphoric feeling surges through you, it’s adrenaline pumping and you are very much alive and kicking. Your senses heighten, you smell things and see things so sharply and it’s almost like the subconscious is fighting time itself to keep you at that penultimate millisecond when you were unwittingly ignorant of the seriousness of your predicament until it was revealed to you officially by the man or woman in the white coat.

Following that fleeting moment, you begin to see sense, the room doesn’t smell so nice, the words are not there, the eyes are welling and glazed, your throat is dry, and your brain, ever the last to react, floods your thinking with clouds of doubt and anxiety, depression and horror – for the next few minutes, hours, and days you are very afraid. No doubt people experience this when they are told they are terminally ill or that a limb needs amputating, or perhaps after an accident they learn that they will never walk again.

My experience was ever so slightly different, just a mite less surprise when I heard those words that I had Hodgkin’s Lymphoma. You see, it was 2000 and I was working for Islington Council’s cleansing department as a refuse collector, a dustman, a profession which I had taken up just two years previously.

In 1998 I was thirty-two years old and fit as a fiddle. I’d spent quite some time out of work and in December I signed on one day and saw a job advertisement for HGV drivers from Islington Council and so I returned to the labour market working for Hays agency driving refuse collection vehicles. The attraction was that I would be working only within the borough as previously I had been driving goods around the country.

After a very short stint on the night rounds I found myself replacing the driver on the Markets Crew. He had been dismissed for disposing of unauthorised waste, so there I was servicing the Islington markets and the surrounding commercial business and domestic premises.

Exactly six months later I was offered the full time position. From then on things went reasonably well. Because all the original markets crew had been dismissed, the two loaders working with me were in a similar position so we all ended up on the cards.

George Hodgkins was a knife in my throat, we used to fight about everything at first and then we became great friends, I couldn’t have guessed that I would soon contract a disease of the same name, Hodgkins Disease as it was known then.

George was a lovable rogue, one minute he was unbearable and the next as good as gold. If he had made up his mind that all fish were blue then there was no talking him out of it. Once he had eaten prawns that were on the turn and got food poisoning, and from that day he was adamant that prawns make you ill. On one occasion myself and Steve the other loader, were trying to explain that all seafood can give you food poisoning if it’s on the turn, there is nothing remarkable about the humble prawn – when suddenly he jumped out of the vehicle and slammed the door so hard that the wing mirror fell off.

I got used to George’s mood swings and temperament. He had been stung by a wasp once and so all wasps were evil. Bees were God’s creatures because they made honey but wasps were the Devil’s creatures because there is no point for them, they merely exist to cause pain. Now picture a hot summer, all that rotting fruit and veg and 20 or 30 wasps buzzing about.

So it was in the summer of 2000 that George found a new use for the market shovel. It was just a super-sized metal shovel on a wooden pole, not as wide as those ones that clear snow but designed to shovel up piles of fruit and veg from the roadway, so quite large. We would arrive at the Nag’s Head market and the first thing George would do is take the shovel from the side of the vehicle, wield it above his head and bringing it crashing down on the waste pile repeatedly aiming at the wasps.

In reality he didn’t actually hit any as they were always too quick, they would disappear briefly, like when you wave a newspaper in the centre of a room at some flies, and then they would return, but madder. As far as George was concerned he was doing us a favour.

So one hot day at Chapel Market, there was a pile of domestic waste that had not been cleared for days, I can’t remember why exactly but in the blistering heat it didn’t take long for the maggots to make their presence known. Now I don’t want to put anyone off their food but when maggots come to town they really advertise it.

Apparently it’s not known why maggots smell, but I can tell you it’s approaching the stench of death. On this occasion it was so bad that people turning into White Lion Street would suddenly cover their mouth and start retching, some did bend over at the gutter to spit or be sick. No amount of time in that industry can ever get you accustomed to that awful smell – it’s worse than human excrement by far.

There was no training for waste operatives to deal with maggots. Yes we were told about rats and leptospirosis, and about bee stings and anaphylaxis, and pigeon droppings with red mites and even some guidance on dealing with human excrement and blood – but never anything about maggots.

So it was that George dealt with maggots in the same manner as the wasps, wielding the market shovel with all his might. What actually resulted from these strikes was the release of huge dust clouds making the smell so much worse and distributing the offensive smell to otherwise maggot free areas.

We were the three people that ultimately cleared the rotting mess. It involved grabbing black refuse sacks and any large items and then shovelling the remaining spillage then sweeping up the loose debris. It’s a dirty job but someone has to do it, as the saying goes.

This stinking pile was at the top end of Chapel Market in Godson Street, it’s an alleyway that was used by several Indian and Chinese establishments, so it was always a bit messy with their waste and this was a time before 15 large bins were placed in the market. When we arrived the pile was six feet high and about the same wide, and about five to eight metres in length.

The first thing George did was attack it. We knew it was full of maggots as the piles we had just cleared in White Lion Street had sent up disgusting clouds of maggot dust. Now here at Godson Street I was unprepared. None of us wore a dust mask. I inhaled a deep lung full of the stuff and I ran away and vomited. I couldn’t get the rotten taste out of my mouth for days after that.

The next morning I was terribly ill and I rang in sick. For the first week I was really bad and even after the second week when I went back to work I still felt rough and things only went from bad to worse from then on. I had a continuous cough for weeks then one morning I felt a lump in my neck. I did some research and learned that lumps are the result of lymphatic glands filling up with white blood cells. Obviously my body was still under attack from whatever had made me ill and it was reassuring that my body was working away and dealing with it.

It wasn’t long when I found lump number two. The first one seemed to be getting bigger. At work I was feeling sick in my stomach all the time and every now and then perhaps every couple of days I would run to the rear wheels and vomit. I was at the start of my shift on yet another scorching day when it happened and Steve said to me, “You wan’t to get that looked at mate.” I said it was nothing and he then said, “Nothing! You’re being sick every hour and you look like you’re going to pass out, so you should see a doctor.”

These are times when you most feel alone because you are just hoping that it will all be over and done with and you don’t want to worry anyone about it. I chuggered on for a while but the lumps grew and the feeling of sickness stayed until I had no choice but to see the GP.

Unfortunately I had been rather foolish in leaving things so late. Dr Moneeb let off some steam at the meeting. He told me that women feel one lump and go to see him straight away even though 90% of the time it’s nothing more than a benign lump, whereas men usually wait until the illness has progressed somewhat. I was diagnosed as being at stage 3b which was just a fag paper away from stage 4, the final stage.

Stage 4 means the disease has moved to the bone marrow, so I was as bad as you could be without it having moved to the bone, when an altogether different treatment is required; bone marrow transplant or stem cell replacement therapy for example. When something is attacking you it has to first get through the skin, then the blood network and then the lymphatic system and finally the bone. If it gets past all these defences and gets to the bone then you’re in a pretty bad shape.

The biopsy had been straightforward because it was performed under general anaesthetic. I had two lumps removed. One was the original lump that was by far the largest, and also wanted another one because it was so close and a little deeper, both were in the left side of my neck.

A bone sample after that was excruciatingly painful. The old lady before me had no issue with it, but l screamed out so loudly that the whole ward could hear it, I have never felt so much pain in my life. Afterwards I learned that younger and older people have softer bone and that is why it is less painful for them.

The results of all my tests, the diagnosis, was that the Epstein-Barr virus was present and this was the indicator confirming Hodgkin’s Disease. Not too long ago the causes of cancer were little understood but today cancer is in one sense an eclectic disease, the cause can come from many different sources.

In general the Epstein-Barr virus is one of eight known herpes viruses, and this one is referred to as human herpesvirus 4. In particular it causes infectious mononucleosis (a group of symptoms associated with the virus) and it’s probably better known as glandular fever. It moves around in the saliva and so is sometimes called the kissing disease and it affects the throat and mouth area as well as the genitals and so it’s also classed as a sexually transmitted disease. Herpes is highly contagious.

The sad truth is that I was not kissing anyone nor having sexual relations at that time. My exposure to herpes virus 4 came from a different source. By the age of 40 most people will have caught the Epstein-Barr virus, yes really, and it’s estimated that 95% of the population are infected with it. But the virus alone doesn’t cause illness. Once you’ve had it, immunity develops so you only get it once. It has to be kept dormant though as it can reactivate.

Anyway, when I discovered that the Epstein-Barr virus likes to hang around dank fested areas it suddenly made sense and there was a connection between the inhalation of the maggot cloud and my cancer. The sheer filth of the area I was working in caused my cancer. So unlike many people who have no idea how their cancer came to infect them, I know exactly how, when and where.

I’m not suggesting for a moment that it was George’s fault for stirring up the maggot clouds because it is what it is, and that’s that. George continued at work while I was off work dealing with cancer, but not long after my return to work his wife lost her fight against cancer and her death absolutely changed him. He very quickly withered away and died within a year.

The oncologist at the Whittington Hospital, Doctor Parker, advised that the best information about Hodgkin’s disease was on the internet and he gave me details for The Hodgkin’s Lymphoma Association as it was called then, now it’s just The Lymphoma Association. I read as much as I could about my condition as it feels a little less scary when you know what you’re dealing with.

First I wanted to try the natural way by getting super fit, changing diet, using a herbal remedy or two, but there was something that put a stop to that. I had been ignoring Doctor Parker since the diagnosis believing that I could show an improvement at a future meeting. Then there was a friend that had informed me about ESSIAC.

ESSIAC is a herbal tea made from several herbs and soaked in alcohol to extract the goodness and potentiate the mixture, the result is known as a tincture. It’s a brew used by the Ojibwa indians, a tribe of native Americans. A Canadian nurse called Rene Caisse researched it in the 1950s and discovered its incredible health properties and so ESSIAC is Caisse spelt backwards, and otherwise known as Ojibwa tea.

When Rene Caisse was conducting her trials with cancer patients, she was using local ingredients whereas when these ingredients are exported they have to be legally irradiated which effectively kills the active structures in it. Think of it as making live yogurt then blasting it with radiation in the distribution process, well it will not be live when the consumer gets it. And so this small but crucial point has been the source of a conspiracy theory since the internet was started.

Even back in 2000 the internet was still quite new and it has increased ten fold since then. In March 2000 the internet had 3.4 million users, today the figure is 3.9 billion which is around half of the world’s population that are online. I am digressing a tad, but my point is that almost everything was a conspiracy back then, in this case it was the pharmaceutical industry that stopped any cancer healing outside of their drugs. It was said, as it is today, that the cure for cancer is not allowed to exist, and remember that the pharmaceuticals also depend on the petrochemical industry so cancer is massive business.

In a remarkable tale of coincidence we found a supplier distributing Ojibwa tea that was made in England and the person lived just five minutes drive from my house, it could have been anywhere in the world but this supplier was located just five minutes away, the coincidence is simply miraculous.

From the moment I started taking ESSIAC I felt better and it seemed like I was healing. I stopped feeling so tired and the daily pains were gone. I was exercising as much as I could and I was on a completely fruit only diet. But I said earlier there was something that stopped me from healing myself alone.

It was my estranged ex-wife Niamh, who was worried that I was ignoring Doctor Parker. I received a letter from him in which he stated that my prognosis should I not begin treatment right away, was death within five years. When Niamh read it she started crying, it took a few days for it to sink in for me.

And so I began chemotherapy treatment in the hope that I had not left it to a point where the disease had reached the blood or bones, although I felt sure the ESSIAC would have prevented that scenario. ESSIAC is not a complete cure for all, sometimes it just keeps the illness at bay and delays the inevitable and all herbal remedies need to be taken for a time before they are effective, usually for a minimum of six weeks.

In this regard I was lucky because I had been taking ESSIAC for some weeks before chemotherapy started and the cancer had stayed and began to retreat with treatment. I continued taking ESSIAC throughout and it helped tremendously in dealing with the side effects of chemotherapy. Of course I felt lethargic and sluggish but I didn’t get sick too often as others usually describe. The fruit diet lasted throughout treatment because I didn’t want to introduce proteins into my body as there was enough of a protein war going on inside me.

The proteins that are developing out of control in the body are being searched for and killed by other toxic proteins. It’s known as targeted therapy and these poisonous drugs help to stop cancer growth. The cancer stage is vitally important as well as measurements of tumour sizes because the treatment is specific to those circumstances. This is why there are regular scans to keep up to date. The aim is for the right amount of chemo to be administered to kill the targeted cells without knocking out too many healthy cells in the process. If chemo takes out not enough cancer cells or kills too many healthy cells, then you will die.

So every now and then you get brought down to earth, just like Doctor Parker’s letter brought me to my senses. Yes I wanted to do it myself the natural way, but it was always a game of chance and in the end I’m not a gambler so I went to the establishment for treatment. Seventeen years later in 2017, I am so pleased that I did that, because I remain free of it. Even after five years you wonder whether it will come back, it haunts you often, but seventeen years is a fair bet that I’ll not see that disease again.

Chemotherapy for some is more bearable than for others. Some people cannot work and have to devote all their days to dealing with it. For others it’s a time to address diet and fitness and put life changing plans in place for when the recovery is over with. For me it was somewhat in the middle.

I am a believer that education is a weapon and so understanding that the cancer virus weakens the immune system meant being very careful to not be around people or places that may have spreadable germs, such as handrails or public transport. With the immune system under attack it makes it more difficult for the body to fight infection, so prevention is better than cure.

What the body does to fight infections is produce an excessive number of white blood cells called lymphocytes that occur in the lymphatic system and which store up in little sacks ready to do battle. So if you have lymphatic cancer then your immune system is already under attack and the lymphocytes continue to multiply uncontrollably and stretch the sacks into larger and larger tumours. In Hodgkin’s Lymphoma the tumours effect the neck, diaphragm and the groin. I felt lumps in my neck, pain in my diaphragm but I never felt anything from the groin area.

It was a time when depression set in deep. I would take a slow walk to the cancer ward where a McMillan nurse tended to me. It was always the same one, Siobhan, who would hook me up and release the drip into my blood and then she would administer several drugs through syringes. It was the worst feeling sitting there hooked up and not able to move while poisons were flowing through my body. I might say hello to a couple of other patients but really it was too tiring for us to speak to each other. When it was over I would take a slow walk back home and flop onto the bed for a few hours sleep – exhausted.

During this dark period of my life my children were far too young to understand the implications of things. They felt it and knew something was not right with me and that I was not at my best. Niamh devoted a lot of time in assisting me whenever and however she could. She brought me lovely dinners and I was grateful to have an excuse to break from my fruit diet and intake of poisonous drugs. But generally we kept the seriousness of it as far from the children as possible. I don’t believe they ever thought that I might die if things didn’t work out.

Saying that, some of my best memories of the children were from that time. Because I was on the cards at work I was entitled to six months full pay and my line manager had arranged it so that I received full pay for a further six months, so I was off work for a year. This single kindness made it possible for me to live as normal and I had no problem keeping my Ford Fiesta or paying the mortgage, but because of the car I could visit the children as often as I wanted.

One time Niamh, the kids and myself went to London Zoo on a rainy day, stopping along the way for a take-away McDonald’s breakfast. I ran in for the order and running back to the car Niamh took a photo of me trying to get in out of the rain, as they had locked the doors. At the zoo we bought some clear plastic ponchos because of the persistent rain. But it was not a dull day at all and I remember it with fondness. Those photos show a man not looking beat by chemotherapy, just the opposite. In reality depression was there and I could not know whether the treatment would work and whether I would survive.

So what can I take from my experience with cancer that will help others when I tell my story, just look at the main points that we have discussed so far:

  • Do your crying, then start getting your head around things quickly. Educate yourself about the particular cancer you have. The sooner you come to terms with your predicament and are able to talk about it with friends and family, the better.
  • After the head comes the body. Help your immune system by being smart around others and other places – no germs. Exercise circulates oxygen and drink lots of water to help the body flush. Don’t pay attention to weak theories that advise limiting oxygen and water because that’s what cancer needs, we all need both these things circulating in abundance. But yes, think about limiting protein intake.
  • Look seriously at your diet. Although your GP will tell you nothing has ever been proved about this, do you really think your body needs a daily intake of beefburgers, chips and coke when fighting for your life. Give it the fuel and it will do the utmost best for you.
  • With the best diet and exercise in the world, there is still room for alternative remedies. Whether it be a colon cleanse, a Chinese bag of sticks that you need to boil, candle burning or acupuncture to release stress, it’s all good. Do look at ESSIAC (Ojibwa tea) and make sure it has not been irradiated. Check also colloidal silver which has great benefits.

It’s reassuring to be in touch with others, whether that comes from meeting someone at your chemo sessions or asking for help from your particular cancer charity it doesn’t matter. I found that all the information in the world doesn’t compare with the experience of others. I approached the Lymphoma Association and their regular newsletters really helped. There’s lots of technical stuff in their publications and they’re up to date and there’s always a story or two from those living with the disease.

Seventeen years later I still receive information from the Lymphoma Association. Here’s a quote I read in a letter of August 2017:

“I’m Tracey and I was diagnosed with B-cell lymphoma in 2009. Chemotherapy is different for everyone, but after my third cycle I felt I just couldn’t do it anyone. The specialist nurse suggested that I might benefit from talking with a buddy – someone else who has been through a similar experience. In truth I was at the end of the line. I really felt I couldn’t face any more treatment at all.

“I felt I just couldn’t do it any more. I was lying on the floor, unable to do anything for myself. I couldn’t string a sentence together. I couldn’t even wash myself. Talking to the Lymphoma Association buddy saved my life. She never told me it would all be OK and I was grateful for that, but she was there and she had been through this herself.

“I put the phone down and decided I would try to continue my treatment. That conversation was a lifesaver. I don’t think I would be here today if I had not had that conversation.”

If you have a story to tell and think you may feel a little better for telling it, then by all means put something on paper and I will include it in the section below, really just two lines will suffice, whatever needs to be said is up to you and remember that others who may read it will take strength from those words. All strength to your pen and I hope that I will hear from you in due course.

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