The Cancer Survivors Club (19 page)

My story actually starts around forty years ago. I began to experience problems with blood seeping into my bowel, resulting in black-coloured motions. I'm trying to be as polite as I can! Various tests were performed to try to identify the cause. These included an endoscopy, barium meals and a scan. However, no conclusive reason could be identified. This became a routine that repeated itself over the years. My problems appeared to possibly be associated with the consumption of spicy Oriental or Asian foods and drinking lager. It was recommended I limit my intake of alcohol and contact a specialist consultant if the symptoms reappeared.

As I was born in Scotland, where it is well known that the dietary culture leaves much to be desired, it occurred to a few doctors that there could well have been incidences of ulceration of my oesophagus or even my stomach tract while growing
up.

There were repeat episodes over the following twenty-four years with further internal examinations, but still no cause could be found. But on almost all occasions, by the time I was examined, the bleeding had stopped. Each episode resulted in a fairly substantial loss of blood, causing considerable weakness and a lengthy recovery, even with medication. As a side issue, my doctor noticed my complaint regarding excessive acid reflux since I was a youngster. He thought I probably had lactose intolerance. He suggested at the time I should try changing to soya milk, which I
did.

Amazingly, over two or three weeks, there was a marked reduction in the amount of times I suffered from excessive acid, which I was naturally pleased about. However, it didn't completely eradicate the bleeding into the bowel.

After a family get-together at Christmas, which included overeating and indulging in alcohol, albeit with lemonade mixed in it, I noticed that I had lost blood again. Within two hours of contacting my doctors, I found myself in hospital. However, I was only put into a ward for observation. By the time I was seen by a doctor, the bleeding had stopped completely.

The following day, I was seen by a consultant on his rounds with his junior doctors. They had a quick look at me and gave me a prod and poke, initially by the consultant who couldn't detect any abnormality in the stomach region and then by the juniors. They all came up with the same result, except one. A young African doctor indicated that he thought he could detect a mass and, after a short discussion with the consultant, who didn't agree, sent me off for an ultrasound scan. There it was: a large mass between the abdominal wall and my main organs.

I was informed after the scan that I was going to be moved to another hospital for further checks. Here it was confirmed that I had what was called Gastrointestinal Stromal Tumour (GIST); in other words, I had cancer. The news was a massive shock to both me and my family.

It transpired that the GIST tumour was quite rare. As it has several genetic variations, a biopsy was needed. This was done under a local anaesthetic on the hospital
ward.

I was actually shown a colour image of the tumour on a screen by the doctor and remember thinking how fantastic technology is to see this. Being able to look at the growth pulsing inside me was almost like watching an alien species in a
Doctor Who
episode, but obviously much more worrying
–
unless you're a ten year
old!

Some time elapsed before I could see the consultant who specialized in this particular condition. When I did, I was told that the tumour was an aggressive type and it measured about 12 cm by 5 cm. I was going to be given a course of Glivec chemotherapy tablets. It was hoped these would shrink the tumour over the next six to eight months.

I asked about the biopsy I'd had in February, but they still hadn't got any results back from the labs. They said they'd let me know as soon as they heard anything. It was during a later discussion regarding my progress in April that I was told they still didn't have the results back. On checking with the laboratory, it was discovered that they hadn't actually been sent away. I was so cross. We finally got the results in June and I did
–
as they originally thought
–
have GIST. I had the ‘C Kit 9' gene, which worryingly wasn't responsive to the Glivec treatment. So I was now going to be given a treatment of Sunitinib. The bad news was this wasn't supported by the local NHS partnership as a first line of treatment.

I'd begun to take a herbal treatment recommended by a qualified herbalist who worked with both the university and several physicians.

She'd found the treatment to be very effective against many forms of cancer, and felt it would help improve my immune system in preparation for an operation in November to remove the tumour.

I discussed the operation with the surgeon during his clinic and he advised me that he was unable to confirm whether or not he would be able to perform micro-surgery, or full open surgery. He needed more time to examine the condition of the tumour, its size and position, and any potential obstacles around the area first.

Eventually, on 10 November, I had my operation. Afterwards, the surgeon informed me the tumour had been successfully removed, plus results from his tests proved that there was no trace of any other cancerous tissue around the area. Two days after the operation, I was seen by a physiotherapist who was surprised at my ability to walk a longer distance than she suggested. I was able to walk up and down two flights of stairs after just four days. She thought I'd be able to go home in just two more days. I put my fast recovery down to topping up my immune system with the herbal treatment. I was so grateful for the care shown to me by the ward staff, surgeon and his clinical nursing
team.

On Sunday, I was back home being treated with loads of love and care from my family, particularly my eldest daughter Lisa, who also has a very strong belief in the benefit of herbal treatments. By the Tuesday of the following week, I was out walking fairly long distances. Sometimes I was a grumpy old ‘wotsit' admittedly and found getting dressed and going to bed a little uncomfortable.

Today it is almost three years since I left hospital. I'm now enjoying life and think myself extremely fortunate that a young doctor whom I never saw again had the belief that he could sense that mass. Wherever he is, I give thanks to him almost every
day.

I have discovered that a newspaper columnist should avoid certain subjects. Mention religion, politics or people with ginger hair and my mailbox fills faster than a ferry to the UK when volcanic ash is in the air. So I know I'm on safe ground to highlight areas where the NHS could save some money.

Overweight people visit their doctor twelve percent more and spend nineteen percent more time in hospital. The average visit to a hospital costs you
–
the taxpayer
–
between £410 and £1,027, depending on whose report you believe.

So, with 463 patients being seen a minute, and with forty-three percent of men and thirty-three percent of women being overweight, I have found a great and obvious method of cutting our national debt
–
start charging the fat bastards. Before you start yelling, yes, I am qualified to make such a statement. I've lost six stone over four years, so genuinely appreciate how much willpower is required.

With this in mind, I fail to understand why our Chancellor of the Exchequer, George Osborne MP, or his assistant, the ginger-haired Chief Secretary Danny Alexander, doesn't create a ‘Fat
Tax'.

Why stop there? It costs you
–
the taxpayer
–
over £374 million a year in treating cirrhosis of the liver. So let's start charging some of the 15,200,000 people who attend Accident & Emergency each year, who have self-inflicted problems
–
such as alcohol poisoning or drug abuse. It's estimated the NHS spends £3 billion a year on alcohol abuse alone.

At this rate, I'm either going to be asked to be Mayor of Somerset or assassinated.

There are over 43,000 admissions to our hospitals attributed to thugs brawling. Let's charge them; if they can afford alcohol, they can afford a fine. The government doesn't hesitate to fine me just for doing 5 mph over the speed limit and I'm not costing anyone money. In fact, I'm using more petrol so providing additional revenue to the public purse in
tax.

While I'm at it, let's charge for the anti-obesity treatments, such as drugs or gastric bands. The Department of Health says obesity will cost the NHS in England £6.3 billion a year by 2015. Forget Mayor
–
at this rate, I'll be the next Prime Minister.

Another reason my mates George and Dan should listen is because being overweight is linked to cancers like breast, prostate and ovarian. Cancer treatment is very expensive. Hazel Blears said, ‘There are clear links between obesity and our biggest killers
–
heart disease and cancer.'

It seems ironic that the overweight, drug-taking alcoholics are given no-expense-spared help and assistance. Yet the old, ill and genuinely frail are not wanted clogging up our hospital beds. Should you be a cancer sufferer wanting unusual or expensive chemotherapy, you either have to pay for it yourself or create so much media attention your local authority backs
down.

I'm so pleased I've managed to avoid any contentious subjects this
week!

Just a couple of days before my daughter's third birthday in May, I was diagnosed with cancer: Non-Hodgkin Lymphoma (NHL). My son was then only months old. I was thirty-three and had no symptoms. In fact, I had never felt better in my life. My husband, like all good amorous men, went in for the ‘cop a feel' one morning and felt a lump in my breast. I had no idea it was there. I thought nothing more of it, it was no big
deal.

A couple of weeks passed and I had a general check-up. The doctor asked if I had any questions. I mentioned the lump and was sent for an ultrasound to rule anything out. Within thirty minutes of my seeing the sonographer, a second doctor was asked to take a look at my lump. The doctor ordered a fine-needle biopsy and found the lump very hard to penetrate. The first thing I thought of was breast cancer and I had no idea what was to follow. The next day, I was referred to an oncologist who bluntly told me it was serious and it needed to be dealt with and quickly. My NHL had presented itself outside the lymph system and the test results therefore showed it was a high-grade cancer. I immediately had surgery to remove the lump and started a six-month course of chemotherapy.

I was sent to the main hospital, which was an hour away from my family, as there was no available treatment for my type of cancer nearer to home. My blood was tested before the chemotherapy began. If all my blood counts were good, the chemotherapy could start. I was then moved to the Oncology Ward. I lovingly named it the ‘Penthouse Suite' because it was situated on the top floor of the hospital. I was the youngest in the Penthouse Suite, which made me feel uncomfortable. I felt so isolated and out of place.

I would start the weekly routine with cancer-fighting drugs. The first week was the hardest. My husband and children were an hour away and I couldn't stop thinking I should be with them and not stuck in hospital. I felt so alone and afraid, and being miles from home didn't help. I was frightened of the unknown more than anything, my mind playing tricks with me. I knew people could die from cancer; I'd sadly met a few. I kept asking myself if I too was going to die from cancer; would this be my
fate?

The nurses would enter my room, all gowned up, gloves on and looking as if they were entering a hazardous infected zone. I guess they were but it felt so hostile. I continued lying there in my nightie, wondering if I should also be wearing protective
gear.

My husband brought the children to visit me a couple of times a week. It was so good to see them
–
oh, how I missed my babies. My daughter would look closely at the central line and watch the fluid being pumped into me. She asked so many questions; she wanted to know everything. She would hold my hand and look into my eyes. I could feel the love she had for me, and I struggled not to cry. Just the sight of her sadness was enough to make me determined to fight this terrible disease. When it was time for them to leave, I always felt so empty and alone and silently cried. Thoughts, crazy thoughts, would rush around my mind. In hindsight, my mind was playing tricks and I became my own worst enemy at times.

I never once thought anyone else could be going through what I was experiencing. It felt like I was the only one in the world with cancer.

I worried about not being with my children and missing their various milestones; this made me so angry. I was very upset and kept asking myself: ‘Why me?' There was no history of cancer in our family. I was healthy and fit. I was a good person. I didn't deserve any of this; it just didn't feel fair. What had I ever done to deserve this? I thought about every little thing I could have done for hours. I yelled at my poor dad once when I was eight. I fought with my sisters while growing up. I may have even told the odd white lie. Was this my punishment, getting cancer?

There was nothing else to do in hospital but think, which certainly caused my mind to spin way too fast. The nurses were great and helped entertain me
–
and annoyed me at times, too. They would wake me throughout the night to give me chemotherapy, saline or just to take my blood pressure and temperature. I'd also be woken at four o'clock each morning and asked to stand on the scales. Why on earth did they want to weigh me at 4:00
A.M.
? I became obsessed and recorded my weight, too. Some days I lost four pounds and other days I put weight on. I wanted to stay the same but it was impossible as I had no appetite.

Food made me feel ill and the smell was terrible. I couldn't eat much and yet I still managed to put weight on. The nurses could see I wasn't eating and mixed up a hospital protein drink, full of vitamins and minerals. Umm, delicious,
not…

The drug treatment I was receiving was tough; it took a lot out of me. It was given in small doses but more frequently to minimize the side effects.

Unfortunately, it didn't minimize my hair loss. I'd always had long hair growing halfway down my back, which I loved. I was in the hospital bathroom when I noticed my hair falling out, not just a little, but lots, from everywhere. Michael, my husband, finally cut it short with some scissors. Then, a few days later, he went over it again with clippers as more clumps finally fell out. I remember standing next to my father with our matching
GI Jane
haircuts; it was actually very funny looking back. Within a day or two, I was totally bald
–
I'd lost all my hair. Eyelashes, brows and below, clean as a whistle, as some would
say.

It took months to get used to not having hair, but at least it was painless. I felt as if everyone was staring at me. I became pretty paranoid. I wanted to walk around with a T-shirt saying: ‘Yes, I do have cancer'; but I decided against it. I wore a wig but unfortunately it was obvious it was a wig and not my natural hair. I refused to wear bandanas; I just felt they didn't make me feel or look like a woman. Eventually, I came to terms with it and walked around without thinking about it. I didn't care
–
I was alive and I knew my hair would grow back one day. I even allowed my husband to take some photos of me without a wig. These are now photos I treasure and am so pleased with the results. My husband said I looked sexy, but I think he's just being
kind.

I coped well with the treatment in general and was only sick once. One of the most embarrassing times was when I had a volunteer caring for me. We were talking and, just as I was about to say something, vomit not words came out of my mouth instead.

I felt so sorry for this poor young guy, but he acted as if it was a normal everyday thing. What a wonderful chap he
was.

I had my stem cells harvested and put away for use later. Thankfully, I've never needed
them.

It's now eight years since I've been free from cancer. I intend to be that way until I'm at least ninety. I have an annual check-up, an ultrasound, blood tests and CT scan. I get very emotional around this time, as the fear builds inside me, imagining lumps that aren't there. I think of all the times I haven't felt well since my last annual check-up and wonder if the cancer has returned. The moment the tests are over, I calm down and laugh at my craziness and go on living my life again.

I know mentally the experience of cancer will always be with me, for the rest of my life. But I have a great life and an interesting story to tell. Perhaps that's why I got the disease. I like to share my story and listen to others and offer hope. I have a ribbon with the words ‘Inspire Hope' tattooed on my tummy; this was my fifth anniversary gift to myself. It's a reminder I'm here and I'm well. Cancer is a word, not a sentence.

One day, hopefully, all this will be a very distant memory and I will be able to share it with my grandchildren with a smile. I will look back and remember I was chosen to have this disease and I came out the other
side.

If I can do it, you can
too.