More Reading Writing and Sharing During Cancer Treatment

In the time when I am undergoing chemotherapy I am unable to go out as often as I would like and often cannot mix with friends so I spend much of my time reading and writing.   Here I share some of my work and views with you.

SACRED HEARTS  

1570 in the Italian city of Ferrara, and the convent of Santa Caterina is filled with noble women who are married to Christ because they cannot find husbands on the outside. Enter 16 year old Serafina, howling with rage and hormones and determined to escape. Her arrival disrupts the harmony and stability of the convent, as overseen by Madonna Chiara, an abbess as fluent in politics as she is in prayer. She assigns the novice into the care of Suora Zuana, the scholarly nun who runs the dispensary and treats all manner of sickness, from pestilence and melancholy to self-inflicted wounds. As an unlikely relationship builds between the two women, others figures stand watching and waiting; most notably theå novice mistress, Suora Umiliana, a crusader for God and ever stricter piety and the mysterious, decrepit Suora Magdalena, incarcerated in her cell with a history of ecstasy and visions.

This book is well researched and well crafted, and the descriptions are detailed. Perhaps too detailed to keep the work interesting.  The author is keen for you too appreciate how clever she is and how much work she has put into her research. This gets old very fast.  The story line is completely unbelievable and a very secondary part of the piece when compared to the description of life in a 16th Century convent so I cannot recommend this work.

Believe  

Ultrasound then surgery

C T scan – lumpectomy

Felt great before they worked on me

Can you believe it?

To Glasgow for a hickman line

On good days, though I do feel fine

It hardly seems this life is mine

Can you believe it?

Coloured capsules: lots of pills

Hygiene, mouthwash ulcerous ills

Nosebleeds leaving bright red spills

Can you believe it?

Lethargy and long, long naps

Daytime TV: memory gaps

Sleepless nights spent reading pap

Can you believe it?

Urine dark as Grandpa’s tea

Baldy pate & sore left knee

The doctors say they’re curing me –

Can you believe it?

By Christmas time – I’m truly blessed

Accepting someone else knows best

Cured and  healed with time for rest

You can believe it.

Valerie Penny

Virals

Tory Brennan, niece of acclaimed forensic anthropologist Temperance Brennan (of the Bones novels and hit TV show), is the leader of a ragtag band of teenage “sci-philes” who live on a secluded island off the coast of South Carolina. When the group rescues a dog caged for medical testing on a nearby island, they are exposed to an experimental strain of canine parvovirus that changes their lives forever.

As the friends discover their heightened senses and animal-quick reflexes, they must combine their scientific curiosity with their newfound physical gifts to solve a cold-case murder that has suddenly become very hot-if they can stay alive long enough to catch the killer’s scent.

Fortunately, they are now more than friends- they’re a pack. They are Virals.  Unfortunately, this is a very poor book and not up to Kathy Reichs’ usual standards.  It really disappointed me. The storyline is far-fetched, the characters not well drawn and I certainly cannot recommend this work.

I can only do what I have the energy to do from day to day. If that is reading writing and sharing my views, as I recover, so be it. Bear with me while I heal.

Valerie Penny

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Physical Effects of Chemotherapy

It is hard to imagine that I am already more than half way through my course of chemotherapy and I have now moved from the docetaxel to FEC.  

FEC is named after the initials of the chemotherapy drugs used, which are:

  • fluorouracil which is also known as 5FU
  • epirubicin
  • cyclophosphamide

FEC treatment can usually be given to you as a day patient. Before you start treatment, you’ll need to have a blood test on the same day or a day or two beforehand. You’ll also be seen by a doctor, specialist nurse or pharmacist. If the results of your blood test are normal, the pharmacy will prepare your chemotherapy drugs. All of this may take a couple of hours.  The first time I went for my FEC, though, the hospital was installing a new computer system, so it was over 5 hours before my therapy reached the ward.  Isn’t progress wonderful?!

The nurse will then insert a thin, flexible tube (cannula) into a vein in your hand or arm. You may find this uncomfortable or a little painful, but it shouldn’t take long. Some people have their chemotherapy given through a thin, plastic tube that is inserted under the skin and into a vein near the collarbone. This is what I have, a Hickman line.  A line can also be  passed through a vein in the crook of your arm instead. This is Known as a PICC line.

You’ll be given some anti-sickness (anti-emetic) drugs as tablets, or more usually by injection through the cannula, which is often connected to a drip (infusion).

The chemotherapy drugs are then given separately:

  • Epirubicin (a red fluid) is given as an injection along with a drip (infusion) of salt water (saline) into your cannula or line.
  • 5FU (a colourless fluid) is given in the same way.
  • Cyclophosphamide (a colourless fluid) can be given either as an infusion or as an injection alongside a drip of saline.

The chemotherapy will usually take about an hour, but it may take longer.

Although the epirubicin is often given first, the order in which the drugs are given won’t alter their effectiveness.

If you’re having your treatment as a day patient you can then go home, and the cannula will be removed before you go. If you have a central line or PICC line it will usually stay in place, ready for the next cycle of your chemotherapy. You’ll be shown how to look after the line or the District Nurse will call in once a week to maintain it for you.

You’ll be given a supply of anti-sickness drugs to take home with you. It is important to take these regularly as directed by your doctor. I was advised to start them right away even if I wasn’t feeling sick. This is because some anti-sickness drugs are much better at preventing sickness than stopping it once it starts.

I have found, so far that the side effects of the FEC are not so debilitating as the docetaxel, but they do exist.

I am not mentally tired, but I do get physically tired.  I am not a patient patient, so when I have some energy I tend to charge around and do as much as I can until I can do no more. It is then I often need a rest or sometimes even an afternoon nap. I should really pace myself, but I am not good at that and really feel excited when I feel I have the energy to accomplish something. I go at it until I finish, or until I run out of energy whichever comes first.

My urine is very dark and smelly but that is not as much of a problem as the constipation. That makes me feel bloated and sore, so laxatives are the order of the day!

My eating is also a bit unpredictable. There are times when I am not hungry and other periods when I graze constantly.  I also find myself craving salt, fruit, vegetables and strong flavours.  I fear I am the only cancer patient who has not lost weight, but the consultant tells me he does not want me to lose weight so he is happy. That makes one of us.

One of the most noticeable side-effects that continues to have a daily effect on my life is hair loss. My hairdresser came to the house when my hair began to come out.  She took my hair down to a number 1. This stopped it coming out all over my pillow and also stopped it clogging the drains when I had a shower!  The most obvious thing is that sometimes my head gets cold! I am also quite self-conscious of not having much hair. It has still not come out completely, but it is very thin on top (although it seems to be growing a the back).  I do have a wig but only wear it if we have visitors or I am going out. Otherwise I mix it up with my “wee hair”, my bandanas and my beanie hats.  My husband is wonderful and so supportive. He had his hair cut to a number 1 too. So now he has the same hair cut as me. The only reason for this is solidarity.  I appreciate it.

One of the things my cancer nurse told me to expect was losing the hair all over my body, not just on my head. This has saved me time and effort shaving my legs! However I have also lost all the hairs in my nose so it feels like it is permanently dripping.  I have mucus running down the back of my throat all the time and I seem to be constantly sniffing or wiping my nose. I am very self-conscious of this.

Another most unpleasant side-effects of the FEC is nausea.  It also causes vomiting in some people. That is even more unpleasant. One of my friends who had already had 2 courses of FEC while I was undergoing treatment with the docetaxel warned me about this and told me the hospital would give me anti-sickness tablets. My friend advised me to start taking them straight away.  The nurses in the oncology ward echoed this advice and I took it. I was glad I did because I did feel a bit nauseous, but never got sick so far.  I am glad of this.  I hate being sick. (Nobody enjoys it, but I really hate it.)

So there you have it, my physical side-effects with the new drugs I am being treated with are not as bad as I had feared, but I was on 21 tablets a day for the first few days after my chemo therapy!  14 of those were for the chemo side effects and the other 7 were my regular ones for my under-active thyroid and my depression. What a life! I plan to live it for as long as I can. 

Valerie Penny

The Psychological Effects of Cancer

There are other effects of cancer and its treatment that are not so widely known or discussed.  I have only discovered this recently and these are side-effects that affect not only me but also those close to me who are nearest. These are the psychological effects of cancer that make everything doubly hard: for everybody.

It was only when I was chatting to my cousin about cancer suffered by another member of our family and the outbursts of temper they displayed, that I began to understand that cancer results not only in physical, but also psychological effects.  The emotional effects of chemotherapy can be just as debilitating as the physical effects. From the initial diagnosis of cancer to the final dose of chemotherapy, patients undergo levels of emotional distress well beyond a healthy limit. The emotional effects of chemotherapy can be directly related to the medication or to external factors such as family, work and social life. The range of emotional distress felt by patients depends a lot on their particular support network and  their rate of recovery.  Emotions run high for the whole family during chemotherapy.  It made sense when I thought about it, but I never had.   

I asked my husband if I had ever displayed any outbursts of temper. I was sure I had not, until he reminded me of an uncharacteristic and ugly diatribe to which I subjected my daughter during a telephone conversation.  I felt so guilty because he was right.

The outburst to which I subjected my daughter is not the only evidence of my fragile mental state during cancer treatment, at present.  When the District Nurse arrived to clean my hickman line and take my pre-chemo bloods at a time different to that arranged I lost the plot and ended up asking her to leave. Oh dear! The problem is it all seemed so logical at the time.

Chemotherapy can have an emotional impact on patients because the treatment itself is a sign of emotional self-preservation. The choice to fight cancer does not end with the first dose of the medication and patients often feel emotionally taxed when recovery is slow. The physical side effects can contribute significantly to emotional distress. Insomnia, constant nausea, weight loss, hair loss and a diminished sex life can all make a patient feel emotionally distraught. Family and friends bear their pain too.

Chemotherapy also affects patients because of a perceived burden of loss on family, friends and work. Patients may feel isolated from participating in family activities due to fatigue and medical appointments. Social life is also dramatically affected by chemotherapy due to fatigue and often shame.  Therefore, some of the classical negative emotions during chemotherapy include anger, fear, anxiety, depression and isolation. The emotional distress from chemotherapy may come from a sense of not having any control over the matter.   Cognitive function and emotional health are strongly interconnected and chemotherapy can take a serious toll on both of them. In some cases, emotional distress can affect cognitive function, while in other cases, impaired cognition can alter judgment and emotional responses during cancer treatment.

However, I have to confess that, perhaps unsurprisingly, my worst outburst to date has been reserved for my long-suffering husband. This combination of temper and depression was my worst to date.  When I asked my cancer nurse if this was a normal side effect she replied in the affirmative. My husband just said very quietly, “But that does not make if acceptable.”  Of course he is right and none of the victims of my temper deserved it.

Depression is a persistent sadness that interferes with usual activities and ability to carry out roles at home, work, community, or school. Depression may also be known as sadness, feeling “down,” despair, or hopelessness. Depression and its side effects affect both men and women.  There are several risk factors that increase the potential for development of depression in the patient with cancer.  Medications commonly prescribed for cancer patients can be one of those risk factors.  There are many classes of medications that may have depression as their side effects.  Some examples are: analgesics, anticonvulsants, antihistamines, anti-inflammatory agents, antineoplastics, chemotherapy agents, hormones, immunosuppressive agents, and steroids.

Depression during chemotherapy, and generally can be managed, but it has to be admitted first.  You need to recognise what puts you at risk of depression.  Triggers include –

    • History of depression in yourself or your family.
    • Pessimistic view of life.
    • Living with a chronic disease like cancer.
    • Stressful events in your life.
    • Effects of some medications & chemotherapy.
    • Lack of support from family or friends.
    • Unrelieved physical symptoms (like pain).
    • Alcohol or drug abuse.
    • Unrelieved grief (not working through feelings of angry about how cancer & its treatment have affected your life).
    • Any persistent change in your mood, with the signs of depression listed above.
    • If you feel suicidal you must tell someone and get help. It is not safe to be on your own at these times.  

I am told it is not unusual to have times when you feel very low after a diagnosis of cancer, and during or after treatment. Many people feel physically and emotionally exhausted from the treatment, and this can lower their mood. However, for some people affected by cancer their low mood may continue or get worse and they may need specialist help or treatment. Some people find that their sadness gives way to a situation where their mood is low most of the time for several weeks or more, and they are depressed.

The relationship between cancer and depression is complex. Depression may be triggered by the diagnosis of cancer, other issues related to the cancer and its treatment, or the impact of the cancer on a person’s life. However, depression may occur by chance or be related to other difficult events, either in the past or in the present, which are nothing to do with cancer, such as the loss of a loved one.    Depression can develop slowly, making it very difficult for either you or your family to recognise when it started. In other cases it can seem to hit you suddenly – one day you wake up and realise that you feel hopeless and helpless and are engulfed in a ‘black cloud’ or, as Winston Churchill called it “black dog” of depression.  

Depression can affect anyone at any age. It is extremely common – one in five (20%) people are affected by depression at some time in their lives. Depression is not a sign of personal failure or inability to cope. You can’t ‘pull yourself together’ or ‘snap out of it’.  Depression can usually be successfully treated. The first step to feeling better is to admit the problem, then to get appropriate help.

Valerie Penny

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