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Don't Be Silent When It Comes To Cancer

December 20 2012

ronnieDecember192011

My son, Ronnie. This is the last photo of him, taken December 19 2011. He died the following day. This is now one year on.

Photo-0058

My dad, taken on the day the hospital transferred him to the Macmillan Hospice, April 12 2010. He died on 26 April 2010. The red band on his wrist is to signify palliative care NR. This is also the last photo.

I began my training in medicine twenty-five years ago. They interview every candidate and one of the questions is, ‘why do you want to be a doctor?’ And the run of the mill answer is, because ‘I want to heal people’ or ‘I want to discover the next cure’. My answer was that I wanted to make a difference.

Over the years people have told me that they read my writing because it makes them think, makes them question, makes them want to change something about themselves or their way of life, or be more active in how their community or country is run.

I think that’s the best legacy anyone could want. I set out initially to entertain, but as the years progressed I found inconsistencies and cruelties even in medicine that at the time I couldn’t change. The rules were rigid, the workings were mysterious and the hierarchy was closed. So I used the medium of writing to make that difference.

I became a professional writer in 1982. By the time 1984 came along I was given an extra week to finish my ‘short’ story for my English final. I don’t think anyone in the history of final exams has ever been given that. It made my tutors and the examiners sit up and take notice of the complex nature of what it means to be an immigrant going through the British education system without an interpreter, without a single person caring that you understood or not, and how the system needed to change to bring it in line with the differing needs of children coming here to escape from certain death.

In the past decade I have become more aware of how my writing can be a force for good. I have woven political tales and medical tales into my work. Politics is ever changing and even parties waver over what exactly they believe in. I have dabbled in it and helped to shape laws and society’s attitudes to religious, ethnic and gender groups. My inside knowledge and understanding has guided many to make changes that help those groups stand side by side with those who once opposed them through misrepresentation and discrimination.

But I believe my biggest goal has been to change people attitudes on medical issues. I went into genetics looking for answers. I found those answers. Already those answers have begun to shape the way gender and sexual orientation are perceived and understood. The breakthrough in just the last few years of research into gender has been the most significant discovery of the decade. Where we once thought gender as being male or female, we now know that there are six genders, and simply looking at someone will not tell you what they are. The saying ‘don’t judge a book by its cover’ never rang more true.

What I want to be remembered for most is showing people that they can make decisions on how and what their own medical care should be. Empowering people to stand up for themselves and say no, I don’t want that done to me, or I want to try a different treatment. I am a person. I deserve dignity. I deserve respect. I deserve to be heard.

Medical knowledge moves, but attitudes of medical staff often remain the same, stuck in an era we thought was long past. I still get friends asking ‘what should I do? They won’t listen. They treat me for this, when I know it’s that’. I have had a friend come to me once with their infant daughter who was diagnosed with epilepsy. One look at the little girl during a seizure told me immediately that it was not epilepsy. It was Moyamoya. It took my friend a year to convince the doctors of the diagnosis, by which time her child had suffered irreparable damage to the brain and had brittle bones from taking the epilepsy medication. She died a few weeks later.

My advice is, don’t wander into a doctor’s appointment blind. Know what you have, know what it does and how it effects you. And if the medication the doctor gives you makes no change to the symptoms ask the doctor to look at other possibilities or other treatments. Don’t take what they say as God’s law. They are not God. They only think they are, because they have a degree in medicine and a big desk. It does not make them right.

Over the past five years I have been equally keen to make people aware of their own personal health. Some dear friends have lost their mothers to cancer; you know three of them by name. They are the reason we all know each other. Other friends have lost relatives. I lost both grandmothers and my father-in-law to bowel cancer. I made it a point to spread the word and get the truth out to people on how they can be the first to know. Early detection means early treatment and a cure. Leave it too late and the clock has already stopped ticking.

In 2008 I lost a dear friend to testicular cancer. I, like many people, assumed you have to be past retirement to get such a disease. I was wrong. My son was twenty when he died with testicular cancer, one year ago today. My daughter was fourteen when she was diagnosed with cervical cancer. Even doctors tell people that you have to be in your forties and sexually active to get cervical cancer. Wrong. My cousin was twenty-four when she died of breast cancer. My best friend was twenty-eight when he was laughed at by a doctor after presenting with breast cancer. He died never once seeing an oncologist. I have lost eight male friends to the disease. Only two of them were taken seriously and given treatment, but it was too late.

I want to take this page as an opportunity to make my readers aware of what it means to lose someone you know, someone you love, someone you raised to cancer. I want people to understand to horror, the silence, the anger that follows their loss. I have lost most of my family to cancer, many of my friends to cancer, and watched many more grieve because of cancer.

I want to make a difference. And that difference starts here. Don’t be the person who thinks it’s never going to happen, or I’m too young. The youngest recorded case for breast cancer is nineteen. The youngest recorded case of cancer is in utero. No one is immune.

Breast cancer, bowel cancer, cervical cancer and testicular cancer are so easily found early, and when caught early can be treated successfully. Make yourself aware of your own body. Take the time every month to check yourself.

There are many websites that will explain how to check yourself, what to look for, when to raise the alarm. I’ll go over some of them.

Testicles - check them once a month, check for lumps, hardness, change of shape and size. I would recommend this be done from the age of sixteen. Medical sites tell you to wait until you’re forty. That would have been no good for people like my son and others of his age. If you find a change, it may turn out to be a simple infection, but see a doctor at once. Don’t wait.

Breasts - check them once a month. The timing is critical. On the fifth day after the onset of your menstrual cycle, check both breasts. There are lumps and bumps and they feel odd. Gentle pressure from the arm pit around in a spiral to the nipple will help you to learn what is supposed to be there and what has changed. If there is ever a change you will find it first. Even after menopause, keep these checks up every month. Don’t wait for the letter inviting you for a mammogram. Many people don’t even get a letter. They are also open to misuse, misdiagnosis and neglect by those who’d rather get home early on a Friday afternoon.

There are two types of lumps in the breast. One is cancer, one is age. And often they are misdiagnosed. So this is an area where you have to take a stand. Know your body. Some kinds of breast cancer can be preventable. To be sure to stay breast aware and healthy, don’t wear under wired bras - they damage the muscles. Don’t have breast enlargements. Silicon is poisonous and can cause cancer. And to my younger readers I have one word of advice; if and when you have babies, breastfeed. Don’t give your baby that convenient fatty sugar water. It simply creates health issues later in life.

Cervical cancer - this is caused by a virus. The papiloma virus has 150 different forms and causes warts and cancers of the skin and body orifices. From the age of thirteen, girls are now given a vaccine to prevent cervical cancer. There is no way to know if this will make a difference yet. And for those of us who have not been vaccinated there are signs to watch for. Bleeding that comes at times other than a menstrual cycle - in older women this is really vital sign to watch for - pain during lovemaking, and pain when passing urine. Don’t wait for the three-yearly test to confirm your suspicions. Go to a doctor straight away. It is NOT true that it only affects women after the age of forty-five. It is NOT true that it only effects sexually active women. My daughter was fourteen when she was diagnosed with cervical cancer. It can be caught from inserting anything into the vagina that is not sterile. In my daughter’s case it was a tampon. Tampons are cited as the modern age designer necessity for women. They are discrete, easy to use and no one knows you’re using one. It’s also not sterile. The factory they are made in is not sterile. The workers in the factory are not using gloves to pack them. Cervical cancer is preventable. In short, don’t use tampons. Don’t go for insertions that have nothing to do with healthy lovemaking and a desired pregnancy.

Bowel cancer - this is another preventable disease. There are two types of bowel cancer. Upper bowel cancers are caused by an improper diet, particularly processed and smoked meat and fish. Lower bowel cancers, including rectal and anal cancers are caused in most cases by the papiloma virus. Be aware of your body, be aware of bowel movements. Everyone knows the difference between normal and diarrhoea. But often the signs of bowel cancer are missed. Being loose for a few days could mean a bit of an upset tummy, you ate too much of Aunt Ethel’s stew, you ate something new, you ate too much of that yummy new Wheetabix with syrup. But being loose for three weeks is not normal. Finding blood is not normal. Go to your doctor at once. My father-in-law found a lump in his abdomen, he was feeling tired and he had been losing weight. He died a few months later. My grandmother had no idea she was ill until she began to haemorrhage when the polyp burst. Don’t wait until you get to this point. Get it checked out.

Again I would like to reiterate what I have always said about the mainstream cancer charities. They are biased and wrong. Many of them repeat the same rhetoric - cancer only affects women. No, it doesn’t. It affects everyone; not just the patients, but their spouses, partners, children, parents, siblings and friends as well. Any charity that tells you it’s ‘only for women’ is insensitive to the loss and grief of the families left behind. My uncle nursed his wife for five year and held her as she died. To say ‘men are not affected by cancer’ - a phrase told to my son by Race For Life when he went to sign up; the same day his father was in chemotherapy - is cruel and despicable. It strips them of their humanity and their dignity. Don’t support that lie. Don’t support the charities that use it. Even men can get breast cancer. Even men have feelings.

Read up on cancer; know the signs; know the different treatments; know your rights. If in doubt, ask your doctor or a medical professional that you trust. Don’t ignore it. Don’t leave it. I have lost too many relatives and friends. Please, don’t be another one.

This is the first anniversary of my son’s death. Christmas will never be the same again. I feel I have been robbed by a continued air of misinformation and disinterest by the medical profession and by society as a whole. Too many people are dying needlessly through cancer.

The pen is mightier than the sword, so they say, but that depends on which one gets to the heart first. My hope is that it’s the pen. While you’re enjoying the holidays, while you read my new work which begins tomorrow, remember this page. Pass this message on. Talk about it and live.

TM

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Comments

( 14 comments — Leave a comment )
tkel_paris
Dec. 20th, 2012 01:10 am (UTC)
*hugs* Wow. I'd... forgotten about the timing. *bigger hug*

And thank you for reminding me that writers can be change agents. I was having a feeling down moment, and reading this reminded me that I can make a difference doing what I enjoy.
tardis_mole
Dec. 21st, 2012 01:53 am (UTC)
*hugs* Thanks.

I kept myself busy and away from the internet. I just read some stuff and planned for the holidays.

I was expecting a load of abuse, but it looks like LJ has cleaned up its act. The page was automatically protected. I wonder how you can protect older pages.

(Deleted comment)
tardis_mole
Dec. 21st, 2012 02:01 am (UTC)
You are one of many I was referencing when I wrote this. People tell you you're an annoyance, but consider this. If you don't ask, you don't get an answer. Sometimes it takes many times for the answer to click. I know this from personal experience.

You've been very brave and strong, and the doctors at the hospital will begin to respect that. You can be a force for change, even in that small way. Patients can't and should not be pigeonholed.

One day a previously 'contained' virus will escape and then they'll be stuck, because no one will know what to do, because they will not have been trained to recognise it, while those of us who were have been sidelined and retired. On that day they'll remember that there is more to medicine then pigeonholes and arrogance. There is compassion and thinking on your feet. It all comes down to two words - Patch Adams.
(Deleted comment)
tardis_mole
Dec. 21st, 2012 12:21 pm (UTC)
You've told me enough of the horror stories. I didn't need more detail. I can guess.

I remember that moment in Torchwood. I think the man was stunned because we don't get plague her. It's been eradicated in Europe. I know it still affects the US in isolated incidents, but here in Britain they haven;t have a case since the 17th century. That's why the man was so shocked.

Plus the fact that Owen is wearing a haz-mat suit and doesn't actually work there. That would make anyone stop short. :)
(Deleted comment)
tardis_mole
Dec. 21st, 2012 12:49 pm (UTC)
Well, the junior doctor listened. He had no choice.

As for Torchwood... They learned the depths of their mistake quick enough.
(Deleted comment)
bas_math_girl
Dec. 20th, 2012 07:20 am (UTC)
It couldn't have been easy to have put this together today. I must admit I'd been wondering how you would cope with this sad anniversay. May the pain have eased slightly for you. *hugs*

Truly inpiring words... *goes to find tissues*
tardis_mole
Dec. 21st, 2012 02:03 am (UTC)
*hugs*

I did quite well. I kept busy. Pottered a bit. Did my shopping. Got everything I needed except the flour. There is always something. And got everything I wanted except the Lindor White. Couldn't find a single box anywhere. Huffs.

Thanks. *hands her tissues* :)
jessiedog
May. 9th, 2013 08:12 am (UTC)
Just counting up how many people I've lost to cancer: a few, but not as many as you. I'm sorry for your experiences.
1) my maternal grandmother; liver and bone metasteses, they never bothered to find the primary because it was too late
2)maternal aunt; multiple myeloma, although it was actually the P.E. that carried her off in the end.
3) father: oesopageal cancer, not detected until it had metastesised through the abdominal lymph nodes & to liver. Too late by diagnosis to do anything, although chemo gave him a further two years.

I cannot count the number of people I've nursed who have died from cancer: children, babies, teenagers, middle-age and elderly. Some died quickly, some not. It is an awful condition that is often not detected until too late, as you well know, and the cost to family and friends can be horrendous.
tardis_mole
May. 9th, 2013 10:32 am (UTC)
In the last ten years; given that many of my family have died in that time, only four didn't die of cancer.

jessiedog
May. 10th, 2013 07:35 am (UTC)
It's certainly taken a massive toll on your family, TM.
( 14 comments — Leave a comment )

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