Details of Side Effects when Breast Cancer is Treated with Tamoxifen

TamoxifenTamoxifen is also sold under the brand name: Nolvadex. It is a medicine that is very effective in preventing the recurrence of estrogen-receptor-positive breast cancer. But it does have side effects. I am being treated with Tamoxifen now and some of the side effects cause me issues.

The most serious side-effects of Tamoxifen are blood clots and uterine cancer. Patients who take a commonly prescribed breast cancer drug, Tamoxifen are at an increased risk uterine cancerof developing blood clots. Researchers have discovered that this risk is much greater than without treatment with the drug. The other most serious risk from Tamoxifen is that of developing endometrial cancer. It is about 1 in 500 — a small risk, but higher than that for women in the general population. Tamoxifen also slightly increases the risk of uterine sarcoma, a cancer that begins in the muscle of the uterine wall. Any abnormal vaginal bleeding, bloody vaginal discharge, staining, or spotting should be investigated. Postmenopausal women taking Tamoxifen should be closely monitored for symptoms of endometrial hyperplasia or cancer.

The main side effects of Tamoxifen that I have encountered are, happily, not life-threatening, but are very unpleasant.

The first I noticed was muscle cramps. These are sudden, severe and debilitating. My cramps often affect my legs and feet, but many people complain of cramps in the muscles of their backs too.letrozole-hair

I am also self-conscious of my hair thinning. It has become quite noticable right on the top of my head. I occasionally wear a wig. It disguises my thinning hair and keeps my head warmer!

The third side-effect that causes me problems is that of weight gain. I have not gained a great deal of weight, but neither am I very tall, so any increase in my weight is problematic for me.

Another side-effect that causes me pain and discomfort is joint pain. Often in my knees, this restricts my walking, but also in my fingers and wrists. This curtails my writing and blogging, sometimes.

Last but not least, the side-effect of low mood from Tamoxifen causes problems for me. I suffer from severe clinical depression anyway, but those issues are increased by Tamoxifen and its side-effects.

Still, if taking Tamoxifen keeps the breast cancer at bay, I will continue taking the tablets.

Val Penny

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Life on Letrozole After Breast Cancer

letrozoleAfter completion of my chemotherapy and just as my radiotherapy started I required to start taking letrozole: just one 2.5mg tablet per day. A 2.5mg tablet each day for 5 years. This is because my breast cancer wasa type that needs the hormone oestrogen to grow. In women who have been through the menopause, the main source of oestrogen is through the change of sex hormones called androgens into oestrogen. An enzyme called ‘aromatase’ is needed for this change to occur. Letrozole works by inhibiting (or blocking) this enzyme. This reduces the amount of oestrogen in your body, which slows the growth of the cancer cells, should they recur. It is my fervent hope that they will not.

I am ashamed to say that I never read the information given with medication, although I know I should. The manufacturer’s leaflet will give more information about letrozole and a full list of the side effects which may be experienced from taking it. I have to take other tablets daily as well. So I take one 2.5 mg tablet of letrozole each morning with my other medication, although you may take letrozole at whatever time of day you find easiest to remember, but try to take your doses at the same time each day. This will helps to avoid missing any doses. You can take the tablets before or after your meals. If you forget to take a dose, take it as soon as you remember. If you do not remember until the following day, skip the missed dose. Do not take two doses together to make up for a forgotten dose. I suppose one tablet out of 5 years will not make much difference.

However, along with their useful effects, most medicines can cause unwanted side effects although not everyone breast-cancerexperiences them. If you have read other articles in this blog, you will realise, that my primary mind set is always that these things cannot happen to me. Of course, sometimes they can and they do. That is just life. Also, because I do not read the manufacturers leaflets, I did not know the side effects to expect. However, Letrozole has a raft of side effects and I seem to have been blessed with most of them. The common side effects are as follows:

1) Hot flushes and sweating: yes, I get this one! I thought it was my time of life, but no, I owe this joy to Letrozole so I try to keep cool by wearing light, airy clothes or in winter, I wear layers, so I can take them off as required.
2) Headache, muscle or joint pain: oh wow! I have this one in spades. You can ask your doctor or pharmacist to recommend a suitable painkiller but I do not like to take any more tablets than I have to, so I try to manage the pain with rest, hot water bottles or ignoring it before I give in to the painkillers. The dull ache of the joint and pain is a persistent, nagging pain that drains the drive and strength out of me. It is inescapable.
3) Feeling tired, weak or dizzy: Oh, you guessed, I find this side effect really, really debilitating. I simply cannot do all that I did before I got ill. Some days I cannot get up, some days I have to take a nap, sometimes I just cannot move. I get so indescribably weary and tired. I get cross with myself and irritated but it does not explain this side effect to say that I get tired. The tiredness makes me bone weary. My limbs feel heavy, my concentration is affected. My eyes cannot stay open. At other times I cannot sleep at night, so that makes me tired too. I do not drive or use tools or machines until I feel fit enough to do that.
4) Feeling or being sick, indigestion, abdominal pain: Hurrah! I do not get this one! I stick to simple meals, generally avoid rich or spicy foods and I am very careful about my diet.
5) Constipation: I occasionally suffer from this one but I try to eat a well-balanced diet and drink several glasses of water each day.I also drink copious amounts of tea, mostly English Breakfast tea, sometimes Earl Grey.
6) Diarrhoea: Nope, I do not get this one: if you do, remember to drink plenty of water to replace the lost fluids.
7) Appetite changes, weight changes, feeling depressed, hair loss, skin rash, swollen legs or feet, vaginal bleeding: I am blessed with some of these, the most immediately obvious is that my hair has become very thin. Sometimes I wear a hat because my head gets cold, my hairdresser is a magician and always makes me look and feel like a million dollars. The other one of these side effects that I have to cope with is depression. I have suffered depressionfrom depression for many years any way and now it is reasonably well controlled. It is just difficult having another potential source of that mental health problem.
8) High blood levels of cholesterol or high blood pressure. I do not suffer from either of these. I am lucky in that my blood pressure sits fairly low anyway and my doctor also arranges for me to regular have tests to check that these side effects are not rearing their ugly heads.

As I suffer with so many side effects of Letrozole, I have been offered the opportunity to change to another tablet. However, I have declined to do so. I know what the side effects of Letrozole are and I can cope with them, more importantly my long suffering husband knows what they are and he can also cope with them. So for the remainder of the 5 year period, I will cope and I will be grateful that I am being successfully treated for breast cancer. I am a lucky woman.

Valerie Penny

After Radiotherapy

It is hard to imagine a treatment that only lasts a few seconds, minutes if you count the set up time, causing after effects.  Believe me when I tell you that it does.  There are side effects of any medical treatments, of course.  With radiotherapy these can be quite frightening.  There is some concern that after treating the brain (particularly if combined with chemotherapy) the patient may develop memory problems.

Radiation therapy works by damaging the DNA (genes) of tumour cells.  DNA damage stops tumour cells from dividing, growing and spreading.  Radiotherapy is a useful tool for treating cancer because cancer cells grow and divide more rapidly than most normal cells around them.  Although some normal cells are affected by radiation, most normal cells appear to recover more fully from the effects of radiation than do cancer cells. Radiation oncologists carefully limit the intensity of treatments and the area being treated so that the cancer will be affected more than the normal tissues.  This is why the set up for the treatment often lasts longer than the treatment itself.

Modern radiotherapy has advanced dramatically over the recent years.  It is now possible to focus radiotherapy with extreme precision. This allows the radiation dose to be targeted to the areas of tumour while sparing most adjacent normal tissues even in seemingly complicated and difficult parts of the body.

brain_lateral_adam

Radiotherapy affects different people to greater or lesser extents.  My friend Ismay, who is a real inspiration to me, is facing terminal cancer with and bravery that is awe-inspiring.  She found the radiotherapy to her head (to shrink a brain tumour) really difficult.  She was left with burns to her scalp.  Her hair that had grown back after chemotherapy, was lost again and the burns to her head made it impossible to wear her wig for weeks.  The pain and distress were hard to bear: but bear it she did. along with some forgetfulness, with her relentless courage and humour.

My treatment was to my right breast.  It was targeted to the area from which my tumour had been removed.  I had been told the radiotherapy would make me feel tired.  I had also been told the effect was cumulative. Unsurprisingly, me being me, when I felt no particular effects after the first dose or so, I felt I had beaten the system.  I had been told the cumulative effects would also include burning to my skin.  Again, initially, I deduced my skin was different to everybody else’s.  It is    not.  However, the effects do not kick in immediately, but do last a long time after the treatment has finished.  Radiation_breast

I have found the after effects of the radiotherapy quite depressing.  The burning under my breast was soothed by aqueous cream but the skin burnt and peeled the way it might with sunburn.  I am now six moths out after radiotherapy has finished.  The burns are healed but my breast still looks tanned compared to the other and I still find I get tired far faster than I expected this far on.  I still cannot walk as far as I used to.  One of my favourite hobbies is dancing, but I cannot dance for as long or as energetically as I did before my treatment.

I continue to find it difficult to concentrate for prolonged periods and the exhaustion is debilitating.  I was becoming increasingly upset about this and was speaking to my friend Margaret.  Margaret survived breast cancer and got her all clear about eighteen months ago.  She has been immensely supportive during my cancer journey.  The wonderful Margaret told me that, even yet, she gets bone tired sometimes.  It is not like the tiredness you feel after a busy day or a late night.  It is a wave of weariness that is all encompassing.  The big problem is it can arrive, unannounced, at any time.  So I have no confidence that, if I start a long or complicated task, I will have the energy to finish it.  This is what I find most exasperating.

However, the side effect that I had feared most was depression.  When the radiotherapy comes to an end, you come off the treatment merry-go-round.  All the attention stops and this can cause the depression the doctors and nurses warned me about.  I suppose when you have been using all your energies to defeat this disease, when it comes to an end so suddenly, it can result in an emotional vacuum.  I have mental health problems anyway and I really feared this problem.  I was lucky, it did not happen to me.  Other friends were not so lucky.  They did feel the sudden stop of treatment and attention left a void that led to depression.

Now I am at the stage where I get check up appointments with the consultant approximately every three months. Before I see the consultant I go to the hospital for an echo scan.  It is also called an echo-cardiogram is an ultrasound scan of the heart. It is sometimes just called an ‘ECHO’. Ultrasound is a very high-frequency sound that you cannot hear, but it can be emitted and detected by special machines. The scan can give accurate pictures of the heart muscle, the heart chambers, and structures within the heart such as the valves.  An ECHO can be carried out for many different reasons.   I have it done to check how well your heart is working after the radiotherapy and to look at how well the valves are moving inside the heart.   An ECHO can also help to see any fluid that may have collected around the heart.  So far my heart is holding up well.

I need to undress to the waist and lie on the couch. A probe is placed on my chest (it is a bit like a very thick blunt pen).   Also, lubricating jelly is put on the probe so it makes good contact with the skin.   The probe is connected by a wire to the ultrasound machine and monitor.   Pulses of ultrasound are sent from the probe through the skin towards your heart. The ultrasound waves then echo (‘bounce back’) from the heart and various structures in the heart.  They make a sort of swooshing noise.

featured-breast-cancer

The consultant also arranges for my blood to be checked to make sure my calcium and haemoglobin levels are high enough.  So far, so good.  This is especially important because for the next five years I require to take a medication known as letrozole.   Amongst the more common side effects of letrozole are hot flushes, hair loss, joint and bonepain, muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, and trouble sleeping.  I have certainly suffered the tiredness as well as the joint, bone and muscle pain.   I was told by other patients it should lessen after 8-10 months.  The doctors have not confirmed this!

So I have complained about my difficulties and honestly reported my progress.  I am aware that I am very lucky. The disease was diagnosed early after a mammogram.  The necessary surgery was carried out quickly.  I am to get another mammogram later this month to confirm that I continue to survive breast cancer now.

Valerie Penny

 

 

 

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

The Longest Day of Chemotherapy

It was Tuesday, 5th June, Jubilee Day. Most of the UK was celebrating the 60 years of the reign of Queen Elizabeth II with an extra public holiday.   I marked the day with my first day of chemotherapy.   It was certainly memorable!

I met with the oncologist at 9.30 am.   She told me my blood results and scans from the previous week were satisfactory as a result of this,  I could go ahead with chemotherapy today as planned. This was both a relief and a challenge.  A relief because, due to my depression, I am not good at dealing with changes in plan.  A challenge, of course, because this meant, again,  it was made real to me that I had breast cancer a condition that required lengthy and invasive treatment.  Reality struck again.

Fortunately my husband was with me.  His very presence keeps me calm.  It was during this appointment that my breast cancer nurse, Angela Wallace, began to explain some of the side effects of the chemotherapy that I might expect. These were difficult to hear. The cancer had been caught so early that I had not recognised any symptoms of the disease in myself.  I felt quite resentful to hear of the side effects I might suffer from the cure.

She explained to me that I would be entitled to a wig, in case I suffered from hair loss.  She also told me that the hair loss would be likely to be from all over my body and that I could expect, among other things, to suffer from a dripping nose. It all sounded distressing and disgusting.

I told Angela that I did not think I would bother with a wig.  I thought it would be too hot during the summer. However, she explained to me that it can sometimes be easier for other people if I wear a wig, especially my mother and my children.   She also drew to my attention that my treatment would last well into October and therefore it would be the end of the year, a much colder time of year, before my hair would begin to grow back.  This was another reality check.

Chemotherapy is a treatment which uses anti-cancer drugs to destroy cancer cells. The drugs work by attacking the cancer cells and disrupting their growth. Unfortunately, they can also affect the normal cells in the body, including the cells of the hair follicles. This causes hair loss, also known as alopecia. Unlike cancer cells, however, the normal cells quickly recover, so if you lose your hair due to chemotherapy it will almost always grow back when your treatment is over.  Before you start chemotherapy, your doctor or chemotherapy nurse will discuss the possibility of hair loss and other side effects with you.

Not all chemotherapy drugs make your hair fall out, and sometimes the loss is so small it is hardly noticeable. However, some people will have temporary, partial or complete baldness.  Some chemotherapy drugs make other body hair fall out, such as eyebrows, eyelashes, nasal hair, beard, moustache, chest, underarm, leg and pubic hair. The amount of hair that falls out depends on the drug or combination of drugs used, the doses given and the way that your body reacts to the drug.

If your hair is going to fall out, it usually starts within two to three weeks of starting chemotherapy, although very occasionally it can start within a few days. The first thing you may notice is that your hair starts to come out more when you brush, comb or wash it. You may also find hair on your pillow in the morning.

Hair may just thin and become dry, fragile and break easily. For other people their hair may carry on falling out over a few weeks so that they become completely bald. Sometimes the hair comes out very quickly over 1-2 days, which can be very upsetting. Some people find that their scalp feels tender.

It was all so much to take in.

Angela explained to me about a method of trying to prevent or reduce hair loss. By cooling the scalp.  It is sometimes possible to reduce the amount of chemotherapy drugs that reach the hair follicles on your scalp. This reduces, and in some cases prevents, the hair from falling out. It is done by using a ‘cold cap’ or a machine that cools the scalp.  I decided to try that.  I was to go to the ward for my chemotherapy by 11am, so my husband and I had time for coffee in the hospital canteen before we went up, but life is never that simple! It is Jubilee Day. The canteen was closed for the public holiday – so we settled for coffee from a machine. Yugh!

  When we went to the ward, I was reminded of all my friend, Margaret Boe, had told me. She had been given the all clear after her breast cancer last October. She said that the ward was a surprisingly happy place. She told me every body, staff and patients alike were very friendly. She said everybody was happy there, but her husband, Billy, said he had not been happy and he found the whole experience of being present at Margaret’s treatment terribly difficult no matter how pleasant the surroundings were. In any event, I was glad to have my husband’s company and support. While this was a long day for me, at least I was the centre of attention. It was an even longer day for him. I was nervous and anxious. It was so important to me to have him there.

I was shown into the treatment room. There were 12 treatment chairs and I was shown to one that accommodated the use of a cool cap too. In the corner of the room a TV high up on the wall ran the Jubilee Day celebrations all day. In our neck of the woods the weather was beautiful but we watched the Royal Family enduring the downpour in London, England for  hours as they stood waving to the crowd. While I sat on the chair waiting for my treatment to start I was anxious. I was pleased to be starting my treatment, anxious about what it held for me and even more pleased that I was not in London getting drenched watching the Flotilla on the River Thames.   

The first struggle for the nursing staff was to get a cannula fitted into a vein in my left hand. That proved to be more of a struggle than expected so the staff began talking about getting a Hickman Line inserted into my chest.  This was to make taking blood and inserting chemotherapy easier in the future.  I was put more at ease when a woman came round and offered us all a cup of tea or coffee and a biscuit. Even the visitors got offered one. My husband was pleased!

In the meantime my treatment today began with a saline solution being inserted into my vein before two different antihistamines were added to the cocktail.  Antihistamines are a type of medicine often used to treat a number of allergic health conditions. Antihistamines work by blocking the effects of a protein called histamine.

Histamine is a protein that the immune system uses to help protect the body’s cells against infection. The immune system is the body’s natural defence against illness and infection.  If the immune system detects a harmful foreign object, such as bacteria or a virus, it will release histamine into nearby cells. The histamine causes small blood vessels to expand and the surrounding skin to swell. This is known as inflammation.  

The expansion of the blood vessels allows an increased number of infection-fighting white blood cells to be sent to the site of the infection. The swelling of the surrounding skin also makes it harder for an infection to spread to other parts of the body.

Histamine is usually a useful protein, but if you’re having an allergic reaction it’s sometimes necessary to block its effects. Allergic reactions occur when your immune system mistakes a harmless substance, such as pollen, as a threat.  The release of histamine causes the process of inflammation to begin and leads to nearby tissue becoming red and swollen. It can also affect the nerves in the skin, making the skin feel itchy.

I had been in the cancer treatment ward for over 2 hours and the chemotherapy itself had not started.  The next excitement was that the woman who had come round with the tea earlier came back. This time with bowls of soup and a choice of sandwiches for all the patients and the visitors. By this point she was my favourite member of staff!

Another nurse set me up for more saline drip: another half hour passed. It was only then the chemotherapy began and I got hooked up for my course of herceptin. The time lapse was this was to be another hour and a half. My husband took an opportunity to go for a walk and buy a magazine and a paper at the hospital shop. This opened in the afternoon notwithstanding the public holiday. He needed to stretch his legs and move around a bit. I really didn’t blame him for that.  By now it was almost 2pm and we had left the house more than 5 hours previously, it was clear it was going to be a long day: a very long day.

While the herceptin dripped into my vein I sat and flicked through another magazine left by someone in the ward. Herceptin is a cancer medication.   It interferes with the growth of cancer cells and slows their growth and spread in your body.  Herceptin is used to treat breast cancer that has progressed after treatment with other chemotherapy.

I was glad when my husband got back. I know the day was boring for him, but I was happy to have his company and support. I am not sure I ever told him that. I just expected him to know. When he did come back I did the puzzles in the magazine. It was something new to look at and think about apart from the unceasing coverage of the Queen and the Duke of Edinburgh endlessly waving to the crowds in the rain.  

The afternoon rumbled on and my favourite staff member came round again, this time with another cup of tea or coffee for the patients and family members with them. This woman secured her place in my heart!

After the dose of herceptin had completed, I was given another dose of saline and then the cool cap was switched on so that it would be ready for me to wear by the time I was ready for my dose of docetaxyl. Time continued to pass.  My favourite nurse was the person who put the cool cap on for me. It had to go on a full half hour before I started taking the docetaxyl at 4.50pm.

My husband was getting bored again. Who can blame him for that? He left the ward to go down to the car park. It was emptying fast as staff came to the end of their day and clinics ended, yet evening visiting had not yet started in the wards. He took the chance to move our car closer to the hospital so that I would not have so far to walk when we, eventually were able to make our way home. That time still seemed so far away to me.

Almost all the chairs in the ward had been used during the day. Now there was only one other patient, no great surprise really, most of the staff in the ward finished their shift at 5pm. This really was a marathon session.

The other patient in the room was a woman who was further into her treatment than me. Her daughter and two grandchildren were with her. The grand daughter was asking about the cool cap I was wearing. It did look a bit like a cycle cap and felt a bit like it does when you are standing in New York City, New York, USA in January waiting for a taxi. The only difference is there is no wind in the cool cap!

It was quite re-assuring to notice how accepting the family were of the woman’s hair loss and treatment. I am not looking forward to the prospect of losing my hair. My hair has been thin for some years due to an under-active thyroid, but the thought of losing it all together makes me very self-conscious.

So another hour passed while I sat with the docetaxyl dripping into me. By 6pm even the woman with the grandchildren had left and my husband and I were alone in the ward waiting for a nurse to come and unhook my drip. Even then the day was not over. When, eventually, the last nurse on duty in the ward came back in she told us the cool cap needed to stay on for another 20 minutes.  The nurse’s shift ended and she left. My husband and I were alone in the ward. He had been given instructions by the nurse as to how to turn off the cool cap and remove it from my head. It felt strange to be leaving from a completely empty ward.

My goodness I was tired by the end of all that. Not just because it had been such a long day, but also because everything was new and strange and stressful. The shops were shut when we were driving home by the time we got there we had been away from the house for over 11 hours. It was as long a day and as stressful day as I could remember. We were both too tired to cook, so we decided to pick up a meal from our local Chinese takeaway restaurant. This was a welcome end to the longest day.

Valerie Penny

Surviving Breast Cancer: More Reading, Listening and Sharing

Breast cancer re-aligns your priorities. The importance of family, friends and time to be with them and do things you enjoy become paramount.

I was glad of the opportunity to re-read Bill Bryson’s “Made in America” The book is reviewed here: https://bookreviewstoday.wordpress.com/2013/04/05/made-in-america-by-bill-bryson/. The text is an entertaining compendium of possible and less possible word origins. Does “okay” come from Martin Van Buren’s nickname, Old Kinderhook? Or from the fact that Andrew Jackson was reported to write “oll korrect”? Or is it from the Greek ollakalla(all good)? Bryson offers a cogent discussion of sexism in the language, and there’s a lot of orthography, etymology, and toponymy. But this isn’t just a book about language. It’s also a bestiary of American pop culture, many of whose stereotypes Bryson debunks (a back-formation from Buncombe County, N.C., of course): Ellis Island, in its original splendor, wasn’t half bad; the Puritans enjoyed a good time just like the rest of us; and Ray Kroc hadn’t the inventiveness of the Brothers MacDonald, after all. Bryson tells us a lot we surely never thought about. There’s the cost of sending a letter by Postal Express and the reason for the bump on the fuselage of the Boeing 747. “Debugging” of computers began, we are told, on the day 50 years ago when a moth entered a Navy computer. There are, however, some facts that aren’t facts. Bryson places the Polish-born British writer Joseph Conrad among the group of Americans whose names were changed from awkward foreignness. And, surprisingly for a lexicographer, he indulges in the popular confusion of the 18th-century “long s” and the modern “f.” This offering won’t replace the popular works by Flexner, much less the majestic Mencken, but the style is engaging and the narrative diverting. An index is appended, but there is no useful list of words and phrases.

If, as Winston Churchill has it, England and America are two countries divided by a common language, here’s some disarming help sent by a Yank from the other side of the pond.

Gerry McGrath’s first collection of poetry is published in his book “A to B”. It is reviewed here: https://bookreviewstoday.wordpress.com/2013/04/05/from-a-to-b-by-gerry-mcgrath/. He read from this when he came to visit a meeting of wkwriters. 

As well as being a highly visually stimulating poet, Gerry McGrath is also a poet concerned with humanity, with nature, with love and loss and how the prosaic and the poetic interact in day to day life.  The use of unconventional metaphors and similes gave many pleasant surprises as I saw things expressed in a way in which made perfect and beautiful sense however strange. Gerry McGrath describes ‘Untamed Lightning, Knees like Emaciated skulls, the sky…clean-shaven, Drowsy sail-cloth of your skin, Gossamer rain, Zany Butterflies, Pastry Roofs and Nicotine Grass.’ These are just a few examples of the arresting imagery which runs through this poetry collection. Some of the poems are as delicate as the ‘gossamer rain’ described by McGrath in the poem Sycamores. His poem Elegy appears in full here: https://survivingbreastcancernow.wordpress.com/2012/07/01/time-to-recover-watching-reading-listening-sharing/

I liked the later poems in this collection more than the earlier ones, although I do not know whether this was because they carried more depth of feeling or because by the time I reached them (I was more accustomed to and in tune with the poet’s tone of voice. The poems Secrets and Gift, which explore the art of writing poetry, struck me as particularly interesting as the creative process is highly individual to all writers and it is always interesting to be given a glimpse at how a poet writes. In Secrets he refers to a poet beginning with nothing and holding it ‘until it bleeds a secret’ a metaphor I found at once eerie and beautiful. In the poem Gift he refers to the way in which poets have the gift to observe ‘tiny immensities’, a gift which Gerry McGrath certainly has.

I think that ‘Tiny Immensities’ is such a beautiful and truthful phrase that it would make a good name for this collection of poetry, better than the current title A to B, which I found slightly off-putting. I understand that the collection was called A to B as it represents a journey, yet I feel that this title does not do the work as a whole any justice. The poem A to B from which I guess the title was taken, is my least favourite poem in the entire collection. In the poem McGrath tells us about butterflies, red-backed beetles and a dead marten but ends with ‘But let me tell you about the butterflies.’ While I realise that this premature ending was intentional I didn’t like it and felt let down that the poem did not go on to tell us about the butterflies as it seemingly promised to do. It only occurred to me later that this might refer to the other poems in the collection, some of which are as vulnerable and glorious as butterflies.

Some of the poems, particularly in the latter third of the book, were not so much poems, but snapshots of incidents, told in prose as precise as poetry. This was most apparent in the poems Busy, Currency, A Milky Sunlight, Two Friends, Mint Tea, Blue Light and Basics. I liked these almost poems best of all for the simplicity and honesty with which they were laid out and the way in which they all told an entire story in a snap shot. The scarcity of the language meant that by using fewer words McGrath was actually able to say more by imbuing his words with a deeper sense of meaning. The poem busy portrays someone cutting the poets hair while hearing about her Grandmother’s worsening condition. The combination of the prosaic ‘hair-clippings went flying out’ with the tragic ‘age, infirmity, depression, were all getting the better of her, pulling her down’ creates a beautiful sense of pathos, which runs on through the poems in this collection.

Every day is precious. Sometimes, in this blog, I may sound ungrateful. I am not. I know how lucky I am that my disease was found and treated early. I just do not like some of the results of my treatment. Still, it has made me slow down and given me time to spend time with those I love. Reading new books and some old favourites, sharing these with my family and friends and listening to all their views.

Valerie Penny

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