I thought it might be my last Christmas

19/06/2009

Feeling exhausted while working long hours and looking after a child seemed nothing unusual but the real cause of Guernsey Press correspondent Kay Leslies tiredness was breast cancer. Here, the 49-year-old shares her story and issues a warning to other women

REACHING into the top of my wardrobe recently and wondering what to wear, it became blackly funny to realise that my indecision had reached a whole new level.

Not only did I have to find what to put on, I also had to choose which prosthesis would be best.

‘First choose your boob’ isn’t the sort of advice you see in Vogue’s style pages. Sitting on the bed and laughing out loud, it was the sort of surreal situation that cancer had landed me in.

My normal and busy life came to a sudden halt earlier this year when I was diagnosed with breast cancer and urgently needed a mastectomy. Although I now feel well, it’s no exaggeration to say that my life has changed forever.
I have dithered as to whether I should write about the experience, conscious of the fact that other people are dealing with cancer in circumstances far more dire than mine. There was also a selfish element of not wanting to ‘jinx’ my recovery by putting into print how well I am.

The decision to go ahead is based on a genuine desire to encourage people (men get it, too) to seek medical advice if they feel unwell, even if the symptoms are non-specific. I also wanted to acknowledge the superb breast cancer health professionals and volunteers in the island.

Finding the humour in fairly dire situations has helped a good deal in the past few months. Having had the best possible care, I told a friend recently I was glad that, if I was going to get any serious illness, it was breast cancer and here in the island, because Guernsey is so geared up for it.

Looking back at how ill I felt in the last few months of 2008, I am still at a bit of a loss to know why I didn’t think to get checked out sooner. The problem was that the symptoms were so non-specific. Pins and needles in an arm, not being able to sleep very comfortably on my usual side and feeling absolutely exhausted didn’t raise particular alarm bells. I was working long hours, looking after a child and organising Christmas – everyone I bumped into said they were also exhausted.

I distinctly remember finding a tiny lump in my right breast during the Christmas holidays but recalled press coverage which said that a huge proportion of these were nothing to worry about. I tried to push any negative thoughts to the back of my mind but looked around the lunch table on Christmas Day and had to rush out of the room to ensure no one saw the tears when I was suddenly terrified that it might be my last one.

I considered ignoring the lump for a while to see if it went away but decided to see my GP – a move that probably saved my life.

Things moved at a very rapid pace from that point. Just after Christmas, Dr Ruth Jones examined me and instantly referred me to the Breast Clinic at the Princess Elizabeth Hospital, which is normal procedure for any patient who discovers a breast lump.

With two adult children and a 10-year-old to consider, I hadn’t said anything to them at this point because I was hoping a minor op, at worst, would solve the problem.

I then mentioned to my older two, Alex, 25, and Stuart, 24, that I was having tests but was sure all
would be fine.

Visiting the Breast Unit at the PEH for the first time was a nerve-racking experience made instantly easier when I walked through the door of the cosy waiting room and met staff who were all absolutely lovely.

A mammogram was swiftly followed by an ultrasound scan. A biopsy was arranged for a few days later.

Even before the biopsy results, it was clear that there was something wrong. There was an area on the inner side of my breast which apparently ‘didn’t look right’ and the lump itself was a cause for concern.

Waiting a few days for the biopsy result was torture, but I did my best to stay positive and reassure the family. My youngest, Rosie, was only nine at this time and had not been told about any of it in the hope that she would never need to know.

I decided to go to the biopsy results appointment on my own so that I could think about how to present the outcome to the children in a way that seemed best.

Breast cancer surgeon Stuart Scott is someone who made me feel totally confident about his ability from the first appointment. When he and breast cancer nurse Sharon Bodkin told me that ‘there was absolutely no doubt’ that I needed a total mastectomy and lymph gland removal, I was devastated but accepted the diagnosis without hesitation.

Far from presenting this information in a positive way to the older children as planned, I asked them to meet me at home and we were all in floods of tears. At that point, there was no way of knowing whether the cancer had spread.

I didn’t want to tell Rosie that it was cancer but the others suspected (quite rightly, as it turned out) that she would instantly make a connection between a breast lump and that illness anyway. Instead, I told her that evening that I had breast cancer but that an operation was going to get rid of it and I would be fine.

I made sure that I sounded totally confident and was determined that my mindset would stay positive as I have always believed this is an important part of any recovery.

It was only four days until an appointment was made for the operation but that was probably the most difficult time. I managed to do all of the normal work / home / family things needed and tell my friends and relatives what was happening, but was reduced to great sobs of tears every night when I checked on Rosie while she was asleep. She looked so tiny and I had no idea what was going to happen to her if my prognosis was bad.

In surgical terms, a mastectomy is a relatively simple procedure. Emotionally, it’s a different matter altogether. When I came round after the operation, one side of my chest was very obviously totally flat. Numbed by morphine, I didn’t dwell on it. My family was wonderful and I felt very loved, which made everything more bearable. All of my lymph glands were removed. One of the strangely humorous things I recall was a comment from Mr Scott that I had ‘absolutely no fat’ on my glands. Maybe it was the morphine, but I found that observation really amusing.

By day three in hospital I decided that I was ready to see my ‘half chest’ and was reassured that it was not as horrendous as imagined. The reality was that this operation had probably saved my life, so whatever the cosmetic outcome, it was totally necessary and worth it.

Drains had been put in to ensure that fluid did not build up around the wound and these were uncomfortable and restrictive – and actually quite painful at times.

Although I didn’t talk about it to anyone, I was very worried about the results of the lymph gland tests. If the cancer had spread, I knew that I might have to face the worst possible scenario. The results took five days and I was elated when told that there was no spread at all.

A week after surgery, I was able to go home.

The ‘high’ of that all-clear was tempered by news that an MRI scan was also needed to check that the cancer had not reached my chest wall. Another anxious time of tests and then waiting for results but, again, there was good news. It was clear.

Rosie had been very upset when she first saw me in hospital and realised the whole breast had been removed but we joked about choosing a new chest.
A month later, at a busy checkout in M&S food hall, she asked in a very loud voice: ‘So when, exactly, are you going to get your new chest?’ The surrounding stunned silence was deafening.

One of the positives of this whole situation has been the huge amount of love and support shown – I received cards, flowers and telephone calls and it helped me enormously to feel all of that.

There were some tough weeks in the winter when I felt too ill to even get dressed and certainly could not actually do anything.  I took advice from holistic practitioners, nutritionists and orthodox specialists. Meat, dairy and sugar vanished from my diet. Instead, I worked my way through mountains of fresh veg, Yogi tea and beetroot juice. I also took nutritional supplements.

Modern treatment allows any patient to make a number of their own decisions and mine was to combine different things. Pathology study of the breast tissue had revealed a high rate of pre-cancerous change, so I resolved to do everything possible to reduce the risks of a recurrence.

There were several tumours found in the breast but they were not near the periphery. I sought extra opinions from UK specialists re follow-up treatment, made clear my preference not to have any radiotherapy or chemotherapy, and am still comfortable with that decision.

It was a difficult time for the family because Jade Goody was filling every news minute and newspaper inch, so it was hard not to think about cancer. My daughter Alex and I were caught up in a photographers’ scrum at the Marsden during one visit to the UK.

The financial repercussions of my illness have also been difficult because I was partly self-employed and my income nose-dived while things like mortgages still had to be paid. I was grateful for help from family members and Bulstrode House.

Although I have stayed positive for much of the time, I was very shaken by a visit to Southampton Hospital’s oncology department.

Since the operation, I had told myself that I no longer had cancer. A receptionist checked a list, said simply ‘You’re a cancer patient, so you need oncology,’ and suddenly I was shaken to the core.

I was being treated as an ongoing cancer patient and was with people who were obviously very poorly indeed. There was a huge surge of emotion, tears and I was physically shaking. Luckily my son Stuart was with me and was brilliant.

Once I had calmed down, the overriding feeling was gratitude about my prognosis and sincere sadness for the people around.

Five months on, I look much the same but have changed hugely inside. My values are different and my perspective on life has completely changed.
I strive to be a better person and I have resolved to undertake a cancer fund-raiser as soon as I feel well enough.

I am taking Tamoxifen and will continue to do so for several years. On rare bad days, I find myself fretting about whether I am going to carry on being well, but those are the exception.

The next medical step is to arrange for reconstructive surgery but I am in no rush – and that is definitely not an expression I would have
used pre-cancer.

‘Finding the humour in fairly dire situations has helped a good deal in the past few months,’ said Kay.    (0790921)


GEP Article 19th June 2009

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