“Some see a hopeless end, while others see an endless hope�
In A Blue Funk
Hagen Friend
Contents 13th May 2013
20th July 2010
4th November 2010
9 10
Introduction What is Cancer?
14 15 18 20
Diagnosis Further Tests Staging Basoloid Squamous Cell Carcinoma
24 28 30 34 38 48
Treatment Decisions Surgery Radiotherapy Radiotherapy Mesh Mask Medication Logs Medicine
68 70 74
Terminal Pain Waiting
“It was the one thing I was most scared of in life - cancer. I think most people are. I think it’s the word more than anything.” – Laura Smith, Diary of a Cancer Patient
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Introduction December 2010. My mother Helena Friend passed away from cancer after being diagnosed in May 2010. Finding out that your mother has cancer, is a shock to say the least, even if you’re not the one with it. Cancer is a word that can stir up many fears and emotions. This book is primarily about what my mother went through during her fight on her cancer journey and her thoughts and emotions that went on through her mind at the time as well as some of my family’s thoughts. My mother used to keep a diary as an organiser, and throughout the year of 2010 she started to write little blogs in it, about what was happening, what she had scheduled with the doctors, and how she felt in certain situations, when you read it you start to get a sense of emotion and depression, but also you feel like she’s never going to give up on herself. You will start to see throughout the book that she went through hell and back so she could to fight the cancer and so she could keep a positive attitude towards the struggle of her cancer journey.
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What is Cancer? The organs and tissue of the body are made up of tiny building blocks called cells. Cancer is a disease of these cells. Cancer isn’t a single disease with a single cause and a single type of treatment. There are more than 200 different types of cancer. Each with it’s own name and treatment. Although cells in different parts of the body may look different and work in different ways, most repair and reproduce themselves in the same way. Normally, cells divide in an orderly and controlled way. But if for some reason the process gets out of control, the cells carry on dividing, and develop into a lump called a tumour. Tumours can be benign (non–cancerous) or malignant (cancerous). Doctors can tell whether a tumour is benign or malignant by removing a piece of tissue which is called a biopsy, and they examine a small sample of the cells under a microscope.
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Normal Cell
Cancer Cell
Cells Doubling
Malignant Tumour
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13th May 2010 Diagnosis, Further Tests, Staging, Basaloid Squamous Cell Carcinoma
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Diagnosis My stepdad and I persisted that my mother should go to the doctor because of the fact she had a lump on her neck the size of a golf ball, she did go. My mother was then sadly diagnosed with cancer on Monday 17th May. It was one of the most unexpected things to hear my mother say “I have cancer”. I didn’t know what to say, think or feel, I was just in shock. I never thought that something like this would happen to my own mother. After many weeks of persuation my mother finally went to the doctor about her neck on the 13th May and the doctors thought this lump could be cancerous, At that point her GP referred her to a Gloucester Royal Hospital to see a ear, nose and throat (ENT) specialist for tests. She had to talk about her symptoms, if she could notice any changes in her voice, breathing, swallowing, appetite or weight, and she did have some of these symptoms, she was just too stubborn to do anything about it, and she hated going to the doctor as well. One of the tests that my mother had to go through to find out if the lump was cancerous was a biopsy, this is one of the most important tests for diagnosing cancer. It involves taking a sample of cells from the area that looks abnormal. This is my mother’s first entry in the diary to do with her neck.
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Further tests The GP was right to refer my mother to Gloucester Royal Hospital with suspicions of the lump being cancerous. The tests came back from the biopsy a week later saying that it was positive for cancer. When the biopsy showed signs of cancer my mother had to undergo further tests and investigations. These tests were done to find out the size and position of the cancer, and also to see if it had spread. My mother had X–rays taken of her face, neck and chest to see whether the cancer had affected any of the bones and to check if the cancer had not spread to the lungs. She also had a CT scan, also known as a CAT scan, this takes a series of X–rays which build up a three dimensional picture of the inside of the body.
It’s very rare for head and neck cancers to spread beyond the head and neck area, but if they do, it’s usually to the lungs. – Macmillan Cancer Support
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“I was very apprehensive, especially when I entered the room and saw that bloody huge machine�
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Staging The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the extent of the cancer helps the doctors decide on the best treatments. The doctors had to go through a staging system called TNM staging.
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T N M
Tumour – This describes the size and position of
the tumour
Nodes – This describes whether the cancer has spread to the lymph nodes and which nodes are involved. For example, N0 means that no lymph nodes are affected, while N1 means there are cancer cells in the lymph nodes.
Mentastasised – This describes if the cancer has spread to another part of the body. For example, M0 means the cancer has not spread to other parts of the body.
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Basoloid Squamous Cell Carcinoma This is the cancer my mother was diagnosed with. At first my mum was like what? Basaloid squamous cell carcinoma (BSCC) is a rare and aggressive variant of squamous cell carcinoma (SCC) that occurs preferentially in the upper aerodigestive tract. My mother’s Larynx was affected by this.
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20th July 2010
Treatment Decisions, Surgery, Radiotherapy, Radiotherapy Mask, Medication
Treatment Decisions After the diagnosis, this is where my mother had to decide on the treatments she was going to get, whether it be chemotherapy or radiotherapy. She had to think about all of the factors to different treatments.
This was my mothers second home, Cheltenham Oncology Centre. This is where all of the surgery and operations take place, and the cancer treatment.
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It was difficult for my mother to make a decision on what treatment she wanted. I could tell that she was very much overwhelmed with all the information she was given. Especially with the whole family trying to help my mother with her say. Aims of treatment Treatment can be given to: •
Prevent cancer
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Cure cancer
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Slown down the growth of cancer
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Help relieve symtoms
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Make another treatment possible or effective
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Reduce the risk of cancer coming back
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“It’s important to remember that everyone responds to treatment and no one can guarantee how likely a treatment is to work” – Macmillan Cancer Support
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Surgery Neck dissection If cancer cells spread from the head or neck, the first place they are likely to go to is the lymph nodes in the neck. A neck dissection is an operation to remove some or all of the lymph nodes in one or both sides of the neck. It’s done if tests show cancer has spread to the lymph nodes. It’s also done if the cancer has reached a certain size, even if there are no signs of cancer in the neck. This is because very small amounts of cancer in the lymph nodes don’t show up on scans or in other tests. My mother’s cancer specialist would’ve assessed the risk of cancer having spread to the lymph nodes in her neck to help them decide whether a neck dissection is appropriate for her. Her risk would’ve depended on factors such as what type of head and neck cancer she had, the size of the tumour and where it is. After a neck dissection, the nerve that helps move the lower lip can sometimes be affected. This can cause weakness on one side of your mouth. Which is exactly what my mother had. Mr. Hugh Wheatley This was the person that went through with the surgery for my mother. Consultant ENT Surgeon Clinical Director of ENT
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20th July. This is the day my mother had her operation.
I remember that I was very anxious waiting for my mum to come out of the operating theatre, I was nervous all day. I knew the severity of the procedure, but I was just hoping that they could get rid of the cancer. When I went into the intensive recovery room to see my mother, I was frozen still, looking. The side of her neck was stapled together, lets just say she looked a little worse for wear. Apart from being a little woozy from the anesthetic, she did seem right as rain, she really just wanted to get through it.
My birthday. The day my mother came out of hospital from her surgery.
My mother had all of her stitching and staples out, from the surgery. She stuck them in just to look back on what she had been through.
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Radiotherapy Everyday I would see my mother come back from her radiotherapy session she would look worse. After the first week, she had become very tired, she was sleeping most of the time. He neck started to peel from the amount of radiation and it was very inflamed. After 3 weeks of it she always looked in pain. My mother had to have this treatment after her surgery. This aims to kill any cancer cells, which may have remained following surgery. This is a cancer treatment to control or kill malignant cells. Radiotherapy may be curative in a number of types of cancer, if they are localised to one area of the body. It may also be used as part of curative therapy, to prevent tumour recurrence after surgery to remove a primary malignant. Radiotherapy is commonly applied to the cancerous tumour because of its ability to control cell growth.
A week before radiotherapy started, making the mask.
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Side effects Tiredness – Fatigue can often be made worse by having to back and forth to the hospital which is something my mother had to do every day of the week for six weeks, getting picked up by the hospital taxi. Tiredness is the most common problem and it can last several more months after the treatment. Eating and Drinking – While my mother was having radiotherapy she had to keep a balanced diet, but she found it hard to eat anything, let alone have a balanced meal. In a result to this she lost and incredible amount of weight in a short amount of time. My mother developed a skin reaction while having external radiotherapy, this included the skin being really sore, inflamed and flakey.
Normal Cell
Gamma Rays
Cancer Cell
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“This treatment can be used both in terms of cure as well as to provide pain control” – Vincent Khoo, Royal Marsden Hostpital
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Radiotherapy Mask The Radiographer first puts the mesh mask in warm water to soften the plastic.
Then they will dry it so that they can place it on your face.
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It take a little while for the plastic mesh to cool so it moulds your face, but as soon as that is done the Radiographers mark where the lights line up so that everything is ready for the procedure.
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Treatment finished. 6 weeks of radiotherapy completed.
Radiotherapy This is what I depicted radiotherapy to be like. Painful, burning, it may feel like you are being enclosed by the machines.
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Medication Logs
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Medicine Oxynorm OxyNorm capsules, liquid and injection all contain the active ingredient oxycodone hydrochloride, which is a type of medicine called an opioid painkiller. It is related to morphine. Opioid painkillers work by mimicking the action of naturally occurring pain-reducing chemicals called endorphins. Endorphins are found in the brain and spinal cord and reduce pain by combining with opioid receptors. It is used for relieving moderate to severe pain in cancer or following surgery and relieving severe pain that is not relieved by weaker painkillers. Ibuprofen Ibuprofen works as a painkiller by affecting chemicals in the body called prostaglandins. Prostaglandins are substances released in response to illness or injury. They cause pain and inflammation (swelling). My mother had to have so much of this because the radiotherapy inflamed her skin massively, and after a couple of weeks it did start to take action.
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Morphine Morphine is an opioid pain medication. An opioid is sometimes called a narcotic. It is used to treat moderate to severe pain. Short-acting formulations are taken as needed for pain. The extended-release form of this medicine is for around-the-clock treatment of pain. This form of morphine is not for use on an as-needed basis for pain. Morphine is not for treating short-term pain just after surgery unless you were already taking morphine before the surgery.
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Amoxicillin Amoxicillin is used for bacterial infections, such as some respiratory infections, infections of the urine, ear infections, and dental abscesses. It works by killing the bacteria causing the infection. You may also be prescribed it to prevent an infection from occurring if you are at particular risk of getting an infection. Lorazepam Benzodiazepines like lorazepam are prescribed for short periods of time to ease symptoms of anxiety, or sleeping difficulties caused by anxiety. Lorazepam works by affecting the way some chemicals in your brain (neurotransmitters) pass messages to brain cells this has a calming effect. It also helps by relaxing tense muscles.
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Ibuprofen 1,400 ml
Oxynorm 1,948 ml
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Medicine My mother had to take a ridiculous amount of medication everyday for 2 months. I have depicted how overwhelmed her life has become by medication.
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4th November 2010
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“Cancer is a frightening word surrounded by fears and myths. One of the greatest fears people have is whether they will die” – Macmillan Cancer Support
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Terminal Being told it’s terminal was shocking and overwhelming, especially for my own mother. She became numb and unable to express any emotion at all, by this time when the palliative nurses came to the house to help out with the medication my mother went blank, you could see it in her face, she wouldn’t be listening to much the nurse was saying. After she was told it was terminal she found it harder to talk to anyone about the cancer, including family.
This is the date my mother got told it was terminal.
“Yuk news” “Moved to lungs - no can do”
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Stages of acceptance The first stage is disbelief. Most people are shocked that it could happen to them, there is extreme anxiety especially about the unknown. Shock, despair and anger are common. There is also guilt that perhaps the person has done something wrong to receive such a diagnosis. Some individuals use humor as a psychological defense mechanism; others become helpless and often start to bargain. This first stage usually lasts from a few days to many months. The second stage is depression, which is usually a reaction to the diagnosis. The depression is mild to moderate in intensity and needs family support. Only in rare cases is any type of medical therapy required. Duration of depression often can last several weeks to throughout the illness. The goal is to help the person go into the final stage of acceptance.
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Pain When I saw my mother is so much pain it was horrible, becasue there was nothing you could do for her, she had all the medication to help her, but it still didn’t touch the sides. Most cancer pain is caused by the tumour pressing on bones, nerves or other organs in your body. Acute and chronic pain Cancer pain can be acute or chronic. Acute pain is due to damage caused by an injury and tends to only last a short time. Chronic pain is pain caused by changes to nerves. Nerve changes may occur due to cancer pressing on nerves or due to chemicals produced by a tumour. It can also be caused by nerve changes due to cancer treatment.
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Nerve pain Nerve pain is caused by pressure on nerves or the spinal cord, or by damage to nerves. It is also called neuropathic pain. People often describe nerve pain as burning, shooting, tingling, or as a feeling of something crawling under their skin. It can be difficult to describe exactly how it feels. It can sometimes be more difficult to treat than other types of pain. Bone pain Cancer can spread into the bone and cause pain. The cancer may affect one specific area of bone or several areas. The cancer cells within the bone damage the bone tissue and cause the pain. Soft tissue pain Soft tissue pain means pain from a body organ or muscle. For example, there might be pain in your back caused by tissue damage to the kidney. The pain can’t always be pinpointed, but it is usually described as sharp, cramping, aching, or throbbing. Soft tissue pain is also called visceral pain.
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Pain This reflected the amount of pain my mother had to go through during her cancer stages. She had to go trhough surgery, radiotherapy, and of course the cancer her self.
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Waiting The date my mother got discharged from Cheltenham Oncology Centre.
My mother got discharged from Cheltenham Oncology Centre on the 21st November. This is when the doctors and nurses couldn’t do anything more to help, so they had sent her home. While she was home for the final days she had the care of my brother, my stepdad and palliative care.
Death can challenge what we believe in so many ways. Some people find that, often for the first time in their lives, they feel the need to think about and discuss the meaning of life, their own experiences or relationships with others. Many people find that they become more aware of spiritual feelings or religious beliefs during this time. Spirituality can be expressed in many ways, through music, arts, nature, or how a person relates to their family or community. People with a strong religious faith often find comfort in prayer or meditation. Many people gain a lot of support from knowing that other people are praying for them. Other people may start to question their faith, especially when they are suffering.
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Turning to religion.
Having to sort out her own funeral.
As my mother became closer to death, there came a time when she felt very weak and wasn’t able to get out of bed at all. From needing to sleep and rest a lot, she moved into a phase where her sleep became deeper and she spent time drifting in and out of consciousness. At times she became confused, and couldn’t recognise family, friends or myself. This was upsetting because I wasn’t expecting it. My mother was also hearing and seeing things which definitely weren’t there (hallucinations). The drowsiness and confusion was due to the chemical changes that were happening in her body and the build-up of toxins. The changes were mostly due to the medication that she needed
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My mother died of cancer Wednesday 15th December 2010. Through her whole journey I had never seen someone so strong to face the consequences of what she was given. She went through so much – radiotherapy, surgery, and an outstanding amount of medication. I was very upset about everything, as you would think someone losing their mother. But I also had a gimpse of relief in me, just for the fact that she didn’t have anything on her mind and no pain. She was at peace.
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“Whenever you read a cancer booklet or website or whatever, they always list depression among the side effects of cancer. But, in fact, depression is not a side effect of cancer. Depression is a side effect of dying.�