Life on Letrozole After Breast Cancer

06 Apr 2015 1 Comment

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , , ,

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

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Risk of Recurrence of Breast Cancer

13 Feb 2015 2 Comments

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , , ,

herceptin_drugMy body has endured surgery, chemotherapy and radiotherapy. As a result of this I have lost my hair and my energy. Still, that tumour the size of a baked bean is perceived as a threat. Its return must be further discouraged. My oncologist therefore insists on mammograms every six months and prescribes Letrozole. I must take one 2.5mg tablet each day for 5 years.

Breast cancer is often discussed as a general condition, but there are several different types that require different treatments. One way to distinguish breast cancer cells is through your genes. When you are diagnosed with breast cancer, your doctor will test the cancerous cells to determine their genetic makeup. My tumour had more of the HER2 protein in it than it should have had. HER2 is a protein that stimulates the growth of breast cancer cells. It can be found in your blood and urine. Sometimes it is referred to as a tumour marker. Tumor markers like HER2 cannot be used for cancer diagnosis, but they can provide other important information and the presence of HER2 helps the doctor predict how likely the breast cancer is to respond to treatment.

It is estimated that about 20 percent of breast cancers are HER2-positive. Younger women are more likely to be her_2_geneHER2-positive than older women. HER2-positive breast cancer tends to be more aggressive and to spread more quickly than other cancers. That is why it is important to find out if the cancer cells in your body contain this protein. If your breast cancer is HER2-positive, you have a much better chance of successful treatment with methods that target the HER2 protein specifically. Results show that those who tested positive for HER2 at an early stage of the condition (with tumours 1 centimeter or smaller) had a higher risk of recurrence. Researchers have also found that HER2-positive patients had a 77.1 percent five-year survival rate, with no recurrence. However, they also are
around five times more likely to suffer recurrence than those who were HER-2 negative and have close to three times the risk of recurrence of those who tested negative for HER2. So I am absolutely sure I want to discourage recurrence.

Tumours that are HER2-positive are more often associated with factors that increase recurrence rates. For example, HER2 tumours are more likely to occur in younger women and have higher nuclear grade. Generally, the higher the nuclear grade, the more aggressive the tumour. HER2 tumours are also more likely to show positive margins during breast surgery. Positive margins occur when cancer cells extend beyond the edge of tissue that is removed. HER2 tumours also have a higher likelihood of residual disease being found when additional tissue is removed. Up to 70 percent of patients with HER2-positive breast cancer respond to treatment. However, total remission for the condition occurs only in around 7 to 8 percent of patients. Targeted treatments (medicines that target the HER2 protein, like the Herceptin I was treated with) have improved the prognosis for HER2-positive patients. Remissions can also be lengthy, offering another bright spot in prognosis and reports show that remission can last more than 15 years for some patients.

tabletI was diagnosed HER2-positive and this brings special challenges in my recovery from breast cancer. The HER2 protein can make the breast cancer more aggressive. It can also make it harder to treat with hormone treatments used for other types of breast cancer. However, drugs like trastuzumab (Herceptin) target HER2 directly and effectively. This drug, when used in combination with other drugs, shows some very promising results for improving prognosis and survival rates for patients with HER2 cancer. However, there is a small but real risk of heart damage and possible lung damage. Scientists are still studying how long women should take Herceptin for the greatest benefit. I am not ashamed to tell you that I hope their studies are successfully concluded soonest. I have a vested interest in this, as my tumour was HER-2 positive.

All in all, having made the decision to stay alive long enough to thoroughly embarrass my children, when the oncologist tells me that I must take one 2.5mg tablet of Letrozole each day for the next five years, I will do just that. Letrozole has side effects but I have decided that whatever they are, they have to be better than allowing the tumour to return.

Valerie Penny

A View of Cancer Care – Book Review – The Spare Room by Helen Garner

18 Jan 2015 2 Comments

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , ,

The Spare Room is a novel about caring for a friend with cancer by Australian writer Helen Garner. She is an Australian novelist, short-story writer, screenwriter and journalist who was born in Geelong, Australia on 7, November 1942. She is a graduate of the University of Melbourne. Garner’s first novel, Monkey Grip, was published in 1977, and immediately established her as an original voice on the Australian literary scene. The Spare Room is a story set over the course of three weeks while the narrator, Helen, cares for a friend dying of bowel cancer. The cancer sufferer can be very stubborn and selfish. It is a form of self-preservation. This story reflects this. The book was published in 2008.

I am a cancer survivor. I have written about my journey in https://survivingbreastcancernow.wordpress.com/. When I chose this book from the local library, I did not realise the topic it covered. I was not sure that I would be able to cope with it. However, The Spare Room is a magical gem of a book. It is gripping, moving, and unexpectedly funny. The book packs a huge punch, charting a friendship as it is tested by the threat of death.

The book made me think about how those who love had suffered when they were caring for me and watching my treatment and recovery. How much of they gave up to help me in my time of need. Likewise in this book, Helen has little idea what lies ahead and the strength she will need to muster when she offers her spare room to an old friend, Nicola. Helen arrives in plenty of time to pick Nicola up from the airport, but she wasn’t expecting to see her friend look so sick, so sick that she could hardly walk. Of course Nicola insists it was just the flight that has taken its toll on her and that she’ll be fine once she has a rest. Nicola has arrived in the city for cancer treatment. She is skeptical of the medical establishment, and placing all her faith in an alternative health center. Nicola will be attending The Theodore Institute where she she will undergo extensive alternative treatment for her cancer. She is convinced that after three weeks of this alternative treatment she will be cured of her cancer. The alternative treatment is high doses of vitamin C. Nicola is determined to find her own way to deal with her illness, regardless of the advice Helen offers.

Nicola explains to Helen how the treatment works and as far as Helen is concerned it is a load of rubbish. Helen knows that there is no miracle cure for the final stages of terminal cancer, but Nicola refuses to be convinced. However, after only a few treatments of vitamin C, Nicola starts to feel very sick and is in a lot of pain. In the weeks that follow, Nicola’s battle for survival will turn not only her own life upside down but also those of everyone around her.

She wakes during the night to sopping wet bedding from sweating and chronic pain. Each night Helen helps her change thehelen garner bedding and tries to comfort her, but her patience are wearing thin knowing this treatment will not work. As Nicola continues with the treatment, Helen becomes increasingly angry, frustrated and exhausted. She cannot seem to make Nicola see that this treatment is not only expensive, but is a waste of time. She only wants what is best for her friend:that is to make sure the time she has left is as pain free as possible.

Helen Garner’s book was a relatively quick read, but it definitely was not an easy read at times. A heartbreaking and powerful read about care, friendship and dying. The Spare Room is a book well worth reading.

This review originally appeared in Valerie Penny’s Book Reviews at: http://bookreviewstoday.info/2015/01/18/the-spare-room-by-helen-garner/.

Valerie Penny

Post Cancer Fatigue

03 Jul 2013 1 Comment

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , , ,

Cancer related fatigue (CRF) is very common.   I had just no idea how long I would suffer from fatigue after my treatment had finished.  Fatigue can often be confused with tiredness, but there are differences between the two conditions.

chronic-fatigue

Tiredness happens to everyone, especially after certain activities or chemotherapy however,  fatigue is less common and is an excessive whole-body tiredness that is not relieved with sleep.   This debilitating condition can impact your quality of life. It certainly impacts upon mine.  I am still unable to walk for the kind of distances I did previously and only do half a line dancing class instead of a full one.  My 18 weeks of chemotherapy ended almost 10 months ago.

Fatigue can be acute (lasting a month or less) or chronic (lasting from one month to six months or longer).   Mine is clearly chronic.  The precise reason for this intensive tiredness is unknown, but practitioners believe it may be related to the process of cancer itself or chemotherapies and radiation treatments.  Although  CRF is one of the most common side effects of cancer and its associated treatments, nobody told me about it or warned me I might suffer from it.  Therefore, I thought I was just being lazy and not pulling myself together properly.   I was quite wrong.

Usually  it comes on suddenly, and does not result from activity or exertion.   Although in my case exertion makes it worse.  The fatigue is often described as “paralyzing.”  It may continue for months, even after treatment is complete.

If you are a cancer survivor and feeling tired or fatigued even long after your treatment is finished, you must know you are not alone.

fatigue

About one-third of breast cancer survivors experience CRF for periods of time ranging anywhere from a year to several years post-treatment.  While there is no conventional therapy to resolve it, studies are increasingly showing yoga and other gentle exercises can help. Some patients with different cancers report relief with exercise.

Valerie Penny

After Radiotherapy

10 Apr 2013 1 Comment

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , , ,

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

 

 

 

Radiotherapy After Breast Cancer Surgery

04 Apr 2013 1 Comment

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , , ,

So here I am, the beginning of my radiotherapy, four weeks of travelling up and down from the Beatson Hospital in Glasgow, Scotland.  The journey takes more than an hour each way and while the treatment only takes ten minutes, it rarely starts on time. Image When I eventually get called through I have to walk along a lengthy corridor with a large room at the end of it.  Two technicians were there setting the machine up for me.  It has to be changed and cleaned after each patient and that was still being done as I entered the room.  There is no where take off my clothes but in the room in the full view of the technicians.  Now, I appreciate there is nothing special about me, however I am, by nature quite reserved.  I am not given to disrobing readily and I was quite embarrassed when I was told just to strip to the waist and put my clothes on the chair near the entry to the room.  I was handed a paper towel with which to cover my modesty as I walked from the chair to the machine. This was horrid.  The paper was not wide enough to cover both my breasts at once and as often as not fell to the floor as soon as I got on to the machine. radio_treatment         On the occasion of my first treatment the technicians introduced themselves.  I believe they should have done this on each occasion that I had different people treating me.  That did not happen.  Indeed, even when there was a student present, whether male or female, I was neither asked for permission to have the student present, nor introduced, nor told that a male member of staff would be present. Now, I am being treated for breast cancer.  I am of an age and disposition that does not readily strip off in the presence of strangers. The stress is appalling anyway, and being treated like cattle, or meat, certainly not as a valuable patient, was very upsetting. It added to my tension rather than easing it. There was no consistency of times for appointments either.  I was fortunate that most of my appointments were between 11.00 and 12.00 each day.  However, speaking to other patients that was unusual.  Having to go to hospital each day is difficult enough, but if it is at around the same time of day you can get into a routine of sorts.  I found radiotherapy even more difficult to cope with than chemotherapy for these reasons.  It definitely intrudes into “real life”. Of course, I had heard that radiotherapy would make me tired and I would suffer from burns around the area being treated.  I had no such effects initially and, if you have read the rest of this blog, it will not surprise you to know that I believed none of this would happen to me. Neither will it surprise you to know that I was wrong again. MRSA After six or seven treatments I began to feel so very tired. Tired and bone weary. Getting up in the morning was increasingly difficult, although I always did.  However, I often needed to go for an afternoon nap when I  got home from radiotherapy.  The feelings of tiredness increased.  I could not work out whether this was due to the travelling or the treatment.  In the end I decided it was both, exacerbated by the chemotherapy that I had already received.  
Tiredness caused by the radiotherapy treatment itself, is thought to be due in part to the type of toxins released during the breakdown of some of the cells within the treatment area. Drinking fluids to keep hydrated,appears to help flush these toxins out of your system. Eating regularly throughout the day, and not missing meals, will also help to maintain your energy levels.   In addition my skin around the area getting treated by radiotherapy was becoming increasingly red and sore. Th radiotherapy is very precisely applied to the exact same area each day.  My breast around my operation scar became increasingly sore but the burning was worst underneath my breast.   Most patients will notice a reddening,  darkening, or burning of the skin within the treatment area, this is called erythema.   This reddening is sometimes likened to a mild sunburn. 220px-Aqueous_cream_B.P. There are some occasions for example when the doctor wishes to treat close to the skin’s surface.   In these instances the reddening may be worse, but you will have been informed about this in the initial consultation. Most patient’s will only have a very mild reaction.   The hospital prescribed aqueous cream and pain killers.   You can help reduce skin reactions by looking after your skin.   It is clear that skin that is well moisturised has less significant side effects than skin that is not. During my radiotherapy treatment I kept my skin well moisturised, and regularly applied (2-3 times per day) the Aqueous Cream provided by the hospital.  This is a pure water based moisturiser. Four weeks, or 19 sessions after it started my radiotherapy was over.  I walked out of the hospital and the routine I had built up during the period of radiotherapy was terminated.  The medical attention and support I had been receiving for months was brought to an end. What a strange feeling.

Valerie Penny

Cancer Treatment After Chemotherapy

01 Apr 2013 Leave a comment

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , ,

My chemotherapy lasted 18 weeks.  The treatments were every 3 weeks.  At first, I really thought I had beat the system and that, with the help of the cool cap, my hair would not fall out.  I was wrong, it did.  I had thought I would not want a wig, what does it matter if I am bald or not?  I was wrong, I did.

The wig was useful for three reasons: first, it keeps your head warm!  Second, it makes things easier for loved ones who do not want to think of you as really ill, even when they know you are.  Last, it helped me to feel “normal” and not to advertise my illness.  I do not want to be defined by any one aspect of my life, especially cancer.

I had also thought, somewhat conceitedly, that I would not get so very tired from the chemotherapy and life would go on as normal, just punctuated by the treatments.  Guess what?  I was wrong again!  The chemotherapy builds up over the period of time and I got bone tired sometimes.  I was so tired that getting up was an effort and I accomplished very little some days.  However, every day I got up, I got dressed and I did something, even if it was just make a cup of tea, write my diary or phone a friend.  Some days I needed a nap and others I felt so good I would bake a cake, clean the bathroom and present my writing class.  Believe me when I tell you I paid for those days for 2 or 3 days afterwards.

Bearing in mind the number of times I had been wrong before, it will not surprise you that I was wrong again when I considered the 5 week break between chemotherapy and the beginning of my radiotherapy was unnecessary.  That period allowed me to be just a little less tired each day and my husband and I did a few things together that I could not have contemplated if I had gone directly from one form of treatment to the next.

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My husband took me to the Ayr Flower Show. We were only there for 3 hours, but it was lovely to see the flowers and stalls where the vendors had some useful things on sale.  Some fine plants and pretty accessories available too.  There was a stand showing birds of prey that was really interesting.  I was also surprised at the wide variety of stalls providing food and snacks.  We particularly enjoyed looking at the Bonsai Trees.

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All too soon the weeks of freedom came to an end.  My radiotherapy started.  There was one big difference between the chemotherapy and the radiotherapy.  I had to attend hospital every week day for 19 days to complete the required radiotherapy.

My sessions started on a Tuesday so for the next 4 weeks I must endure the 70 minute drive to and from home to the hospital  for my 10 minute radiotherapy sessions.  It was a huge intrusion into the day.  It was also difficult to lead any semblance of a normal life during this period because my days from 10.00 to about 1.30 were taken up by the daily trips to The Beatson West of Scotland Cancer Centre. It is a specialised cancer care centre in Glasgow, Scotland. I was lucky because there is a local charity, North Ayrshire Cancer Care, that provides volunteer drivers to drive people to and from cancer treatments.  This makes a big difference.  Patients are advised against driving after treatment and it would be difficult to find family and friends able to make the trip daily for such a long period of time.  There is such a time commitment each day.

So, radiotherapy, here I come.

Valerie Penny

More Reading Writing and Sharing During Cancer Treatment

18 Aug 2012 Leave a comment

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , , ,

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

Physical Effects of Chemotherapy

18 Aug 2012 Leave a comment

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , , ,

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

04 Aug 2012 1 Comment

by Val Penny in Blog, Breast Cancer Tags: , , , , , , , , , , ,

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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