My cancer story

The links on the main cancer page that discuss the various topics are there because I went through the frightening experience of fighting cancer and I regard myself as a survivor, many do not make it through to tell their story as we are all we aware, it is a disease that almost everyone knows someone that has had it.

I had to get my head around the fact that I was so ill that the body alone couldn’t get over it without medical intervention. Willpower and fitness by themselves was not going to do it. But as I learned, a solid mental approach does help, there’s no doubt in my mind about that.

The one thing anyone effected by cancer will remember is the moment the train hit you square on, that infinitesimal duration of time that marks the point from thence your life changed dramatically and you can never go back to being the same old you again. At that moment the awful truth confronted you and it shifted from something that was looming over you, to something that had invaded you. The battle began, you will live or die.

When the doctor reveals the diagnosis it’s an almost euphoric feeling surging through you at first, the adrenaline pumps through you and you feel very much alive, for a while at least until you’re walking away from the meeting. It’s on leaving the hospital that the realisation kicks in. You were just a normal person earlier, now you have cancer, it’s was confirmed. And now your eyes begin to swell with tears.

For a time your senses are heightened at the prospect of how lucky you are to be alive and how beautiful nature is around you. The senses overtake you, the streets don’t smell so nice, the flowers look beautiful, the sun warms your face, other people look the picture of health.

The brain kicks in a little later, everything about you is a cause for concern; your eyes are glazed, words don’t come easy anymore, your throat is too dry, and the brain floods your thoughts with self-doubt, anxiety, depression and then horror.

For the next few minutes, hours, and days you are very afraid. Just imagine how it must feel to be told the diagnosis is terminal. I was sparred that, thank goodness, and the only consolation was that things could have been worse, much worse. Knowing that you’re not terminally ill gives you a thin ray of hope and that is the first thing you clutch on to.

When I was told in 2000 by Doctor Parker at the Whittington Hospital that I had Hodgkin’s Disease, it was the end of my world. But I took that ray of hope and bounced back. I can’t remember who it was that asked me if I was doing okay one time but I remember my reply, “I’ve done my crying, it’s time to get on with sorting it out now.

At the time I was working for the council as a refuse collector. I had started there just two years earlier in 1998 when I was thirty-two years old and as far as I knew, in great shape. I drove a refuse collection vehicle clearing the borough’s markets waste daily.

The summer is the worst time in that industry as you can imagine. The heat creates unbelievable smells, as you’re driving around a slurry is leaking all over the road from the back wheels, wasps are holding parties  over every pile of rubbish and every here and there the maggots come out to play.

Incidentally one of the guys I worked with was called George Hodgkins. Just a coincidence that his name was the same as the disease I would contract, just the variance of an ‘s’ at the end of his name. We fought a lot at first, I used to say about him that working with George was like having a disease that you couldn’t shake off. But we became friends in the end.

George could be unbearable when he had a bee in his bonnet about anything. Once he’d made up his mind about something there was no discussion to follow. At some time he’d eaten prawns that had given him a very bad dose of food poisoning, consequently he became adamant that prawns are poisonous. One time we were parked up in Chapel Market having a Marks & Spencer sandwiches when George asked me what I was eating, and I told him it was a prawn sandwich.

Well that was it, George told me that prawns were highly dangerous and when I suggested that there was nothing remarkable about the humble prawn – he grabbed my sandwich and threw it out of the window. “There,” he said, “you can thank me later when you don’t get food poisoning.

Another time he had been stung by a wasp, so wasps were now evil creatures unlike bees that god made to produce honey. Wasps needed to be killed because they stung people for no reason. Now picture a hot summer market, lots of rotten stinking fruit and veg with millions of wasps buzzing about.

When we pulled up to collect some refuse, George would get out and take the a super-sized shovel with long wooden handle from the side of the vehicle, wield it over his head and proceed to whack the wasps with it. It didn’t kill many wasps even though the sun makes them dopey, but it did release smells and sometimes maggot dust from the bags and boxes he was demolishing, and of course we still had to clear it all up after his tantrum.

One hot day in Chapel Market, there was a pile of waste that had not been cleared for days, I remember exactly why as we were the ones responsible for clearing it, but anyway in the blistering heat George mounted an attack on the wasps. With each whack of the shovel a cloud of maggot dust was released. It was so bad that you could see the cloud and people walking up the street crossed the road and walked past us covering their mouths.

If you’ve never had the smell of maggots up your nose keep it that way. It is one of the foulest smells imaginable. I’m not talking about those little white things they use for fishing, I mean seasoned maggots that have come from hearty rotten meats, they are fat an a beige colour.

Apparently it’s not known why maggots smell like they do, but I can describe it like a stench of death. You know when people describe the smell of a person that has been dead for some time, well that’s how I image the smell of maggots, seriously there is nothing worse.

So by now people turning into the street are immediately covering their mouths and some are retching, one woman was bent over spitting or being sick by the roadside. Myself and one other got pissed of with George, he just couldn’t see what he was doing.

At work we had toolbox talks on leptospirosis, but nothing else and no training on stings and anaphylaxis, pigeon droppings and red mites and nothing on how to deal with human excrement and blood – and most definitely nothing about maggots.

So it was that George dealt with maggots in the same way as for wasps, wielding that market shovel with all his might and releasing all the harmful molecules into the air for people to inhale. Anyway, this particular pile was at the top end of Chapel Market in Godson Street, an alleyway used by several Indian and Chinese establishments, always messy with some animals breaking open the bags and also popular with rats.

This pile, after George had got though with it, was like those pictures you see of a star nebulae, one large cloud. This dump was approximately five feet high and the same wide and about six or seven metres in length. We didn’t carry dust masks but in hindsight I wonder why on earth we didn’t.

At some point I took a deep breath of the fumes that made me keel back. I felt it in my lungs, the only time I can ever describe that happening to me. I couldn’t get the rotten taste out of my mouth for days after that, the small is bad enough but the taste was much worse.

The very next morning I was terribly ill and I rang in sick. For the first week I was in a really bad way and even after two weeks on returning to work I still felt quite rough and not fully recovered. I thought I would work it off, I was a strong person back then, it would pass.

Things went from bad to worse from there on. I had a continuous cough for several weeks and then one morning I felt a little lump in my neck that I hadn’t noticed before. I reasoned that my body was still under attack and therefore white blood cell production had gone into overdrive.

I then found another little lump. Both on the side of the neck. the first one had gotten bigger. At work I started getting a sick feeling in my stomach and now and then I would take myself to the back of the vehicle and retch until I was frequently vomiting. One of the crew eventually said to me, “You wan’t to get that looked at.” I told him it was nothing and said, “Nothing! You’re vomiting every hour and you look like you’re going to pass out, you should see a doctor.

I soldiered on for a good while but the lumps grew and more presented themselves. Then I started to get concerned. I know, only now you say. But that’s how it was. I did some research and learned that lumps are the result of lymphatic glands filling up with white blood cells so everything seemed okay. But I had been foolish in wishing that things would simply go away with time.

Doctor Moneeb had a go at me. he literally flew off the handle telling me that women feel a lump and head to the doctor when 90% of the time it’s nothing more than a benign lump that women get all the time. But with men they usually wait until things have progressed somewhat. He was disgusted with me and sent me to the hospital immediately, with a sealed letter.

Of course I was tempted, but I didn’t open it. In due course I was diagnosed with stage 3b which was just a stone’s throw from the final stage 4 that required bone marrow transplantation, or stem cell replacement as it is known.

You see the body has it’s defences in the layers that make up the body. So the first line of defence is the epidermis. If an attack gets past the skin it has the lymphatic system to deal with, then after that a disease is handled by the blood and failing that the attack moves to the organs and finally the bone. Either of the last two destinations is life-threateningly worrying.

The biopsy was performed under general anaesthetic. I had two lumps removed,those first two that has presented in the side of the neck. The fist one had kept growing and was remarkable but the second was pretty standard so they needed both to see what was going on with it.

A bone sample that followed was excruciatingly painful. An old lady went before me and had problem but l screamed out so loudly that the whole ward were alarmed. It was the most pain I have ever felt, I could feel the needle going in and out for every millimetre of its journey. Afterwards I was told that younger and older people  have softer bone and find the procedure less painful and intrusive, I was between them both at 34.

The result of all the tests confirmed that the Epstein-Barr virus was present and this was the indicator confirming Hodgkin’s Disease. CAT scans later showed the tumours in the neck and diaphragm regions, not so much in the groin and under-arm areas.

The Epstein-Barr virus is one of eight known herpes viruses, and this one is referred to as human herpes virus 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 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.

Not too long ago the causes of cancer were little understood but today cancer is known to be something we cause ourselves as a by-product for living. We produce hundreds of millions of cells continuously but now and then they become damaged due to stress or diet etc, or outside intrusions like radiation from the sun or microwaves. Cancer is a disease, probably better understood as a dis-ease, something that puts the body out of ‘ease’.

Anyway, when I heard of Epstein-Barr for the first time I researched it and discovered that it likes to hang around dank infested areas. It suddenly made sense, the connection between the inhalation of the maggot cloud and my dis-ease. So unlike many millions of people who haven’t a clue why they contracted cancer, I was one of the few that knew exactly how, I could pinpoint it precisely to that day in Godson Street.

If you’re wondering whether I blamed George, hell no. Whose to say I wouldn’t have suffered anyway, the virus was always present there. Who do I blame apart from my own foolishness for working without adequate PPE and training, the council of course. George’s Ort cloud didn’t help though.

Doctor Parker told me the best information about Hodgkin’s Disease was to be found 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 and the disease has been renamed Hodgkin’s Lymphoma. I read as much as I could about it. It really does help to learn about it and makes you feel less scared and not more so as you might expect.

George continued at work while I was off work with cancer. I returned to work after six months to learn that George’s wife had lost her battle with cancer and her death had destroyed him. He very quickly withered away and within a year he too went sick from work and not long after, he died.

During the time I was off, I received chemotherapy every couple of weeks. I didn’t approve of the regular x-rays to check on the progress so I stopped them. I told Doctor Parker that if the lumps grew then I would agree to x-rays but there was no need while the lumps were shrinking.

Chemotherapy effects people in different ways. I was okay with going and getting hooked up to a drip and having injections but after it was done, I felt very ill and would have to go straight to bed when I got home after a session. It took several days for me to get over it.

At home, I was reading about the natural way of healing; exercising, changing the diet, using a herbal remedy; even though when I had asked Doctor Moneeb about diet he had told me there is no evidence to suggest that diet was beneficial in the treatment for cancer. I wondered how this could be when you are what you eat and some foods are known to have magical properties.

In particular I came across the Dries Diet. In a nutshell it’s similar to the palio diet that was a fad some years later, but this diet explained that humans are frugivors, that is that we started out in trees eating fruit and evolved on land eating fruit way before hunter gathering and agriculture appeared. Therefore the body is foremost honed to making the most from fruits.

Another main point in that foods have photonic energy. As they grow they receive light from the sun which has photons in it. These photons are healing. One thing to do regularly is look directly at the sky so that the photons from the light can enter you. Root vegetable are low in photonic energy as they grow underground whereas the fruits that contain the most are melons, grapes, and pineapples.

You can eat fruit for all your meals and nothing else and you will not die. So the Dries Diet is based around the high photonic fruits and avoiding processed foods. I tried it for several weeks, but fruit was expensive back then. Anyway I persevered and in all honesty I felt much better, and I was able to receive chemotherapy without fuss. I was more alert, less tired, and clearer of mind. Also your insides move much better, at the risk of sounding a mite vulgar, on a fruit diet you don’t really use much toilet paper.

I felt myself improving but then a friend asked if I’d heard about ESSIAC. It’s 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, which is Caisse spelt backwards, otherwise known as Ojibwa tea was on my hit list.

When Rene Caisse was conducting her trials with cancer patients in Canada, she used local ingredients, whereas when these ingredients are exported they are irradiated which effectively kills the active structures in the herb. So this very important point has been the source of a conspiracy theory since the internet was started.

In a remarkable coincidence the business distributing Ojibwa tea that was made in England with locally grown ingredients was in Stroud Green, just a ten minutes drive from my house, who would have believed it, the only genuine supplier in the country.

I started taking ESSIAC and immediately started feeling better. The combination with fruit and exercise was miraculous. I didn’t eat meat as I didn’t want proteins in my body believing that it is the food for cancer, proteins and oxygen.

Eventually Doctor Parker became anxious for x-rays. The cancer stage is vitally important as well as measurements of tumour sizes because the treatment is specific to those circumstances. I agreed and the x-rays showed a dramatic improvement which I put down to my approach at getting better and having an open mind.

With the immune system under attack from cancer it’s more difficult for the body to fight infections, so exercise and diet do play their part because prevention is better than cure and the fitter the body is the better chance it has. After all a soldier going in to battle tired and hungry is less likely to survive it.

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.

The answer was a full time effort to recover. I wish it could have been done without chemotherapy but who honestly would take the risk of waiver the drugs. I would take a slow walk to the cancer ward where a McMillan nurse hooked me up to a drip. Then she administered several poisonous drugs through syringes. It was the worst feeling. Afterwards I would take a slow walk home and flop on the bed for a few hours – exhausted.

The council decided to pay me full wages for the time I was off sick which allowed me to keep the car and function as normal, financially of course. My two young daughters were aware something was wrong but I don’t think they ever thought I might die, not even I ever considered that possibility.

One day we all went to London Zoo. It was raining a lot. We stopped at McDonald’s on the way and I ran across the road to get it, on the return they were laughing because they’d locked the doors and I couldn’t get in. At the zoo we had to buy plastic ponchos and we took some good photos there too. But it was not a dull day at all and I remember it with fondness.

So what can I take from my experience that might be of use to others. I’ve listed the main points as we’ve discussed so far:

  • Do your crying at the beginning, you have to get the stress out of your system. Then start getting your head around things. Learn about yur particular cancer. The sooner you come to terms with it yourself, the sooner you’ll be able to talk about it with friends and family, do not close them off as they are interested in you but may be afraid to ask or show concern.
  • 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 get involved with conspiracy theories that advise limiting oxygen and water, yes cancer needs that but so do our normal cells. And think about limiting protein intake and increasing fruits.
  • Do look at ESSIAC but only if you are sure the ingredients are local and not imported (irradiated).

Here’s an extract from the Lymphoma Association magazine from 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.