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