Joanne’s story

Despite being in end of life care in Antrim Area Hospital’s Macmillan Unit, Joanne, from Ballymena, was determined to spread an important message that she hoped would save others from cancers, such as the one that took her life so early.  She asked for the Trust to assist her in getting the word out.

Diagnosed with Leiomyosarcoma in the vagina, Joanne, who was only just 39, believed that young girls, parents, teaching staff and society as a whole are too embarrassed to talk about menstruation, and that is a factor in cancers not being identified early. Post-menopausal women are always more likely to recognise that vaginal bleeding needs investigating because it is unexpected. For younger women any bleeding from the vagina is always associated with periods and may be viewed as more normal. For both groups, however, this area of the body and what is happening to it is always embarrassing and unmentionable.

“We give nicknames to body parts and functions out of embarrassment, and this sense of the unmentionable builds and builds. At the Primary School where I taught, the girls get a stand-alone session about puberty; and the parents often ask when this will happen because they are embarrassed to talk to their daughters and prefer the school to do it. The girls themselves were embarrassed before they even got to the talk. As you get older this sense of embarrassment builds up, and it makes it harder to seek professional help when something is not right.”

But what is “right” or “normal”?  Joanne felt that much about her own introduction to periods when she was growing up was a contributing factor in delaying her going to the doctor when she started to experience symptoms.

“I attended an all-girls school where we watched a video telling you your period could be light or heavy, last two days or nine days, and that there was no “normal”. There was no sense that you should find what was normal for you within these limits and then monitor changes from that. My periods were always fairly heavy, but in my middle twenties they changed, becoming much heavier and more painful. But I was too embarrassed to go to the doctor. I played it down until I couldn’t stand up with the pain, and my mother dragged me kicking and screaming to the GP.”

Even when she was there, though, Joanne still couldn’t open up. “Despite having these heavier and more painful periods for months, I probably gave the GP the impression that I was simply fed-up with having heavy periods. I was given a contraceptive pill which I continued to take for over ten years, but still suffered from these painful and heavy periods. However I tried to carry on and play it all down. I told myself it must be normal for me!”

Life continued like this until Joanne began to experience other symptoms in April 2019 and, the following month, a crisis hit her life as a primary school teacher. “One day I had awful bleeding at work, like a haemorrhage, and I had to tell colleagues and go home. I couldn’t hide it any more or pretend it wasn’t happening, so I did the right thing and told my GP. At this stage it was a relief to finally be given permission to be ill.”

Joanne was referred as an urgent case to a gynaecological consultant in Antrim Area Hospital and had a consultation in the first week of July, with an ultrasound scan the week after, pills to take to control the bleeding, and a further appointment for the first week of September. She staggered on to the end of July, convincing herself that her problems would soon be sorted out.

Unfortunately things were to take a turn for the worse in the first two weeks in August. A change of pills had no effect either, and Joanne couldn’t wait for the September appointment. The GP told her to go to hospital if things did not improve before then.

“Initially the consultant thought it was a fibroid and was considering a hysterectomy, but wanted to try other treatments first because I was so young for a hysterectomy. However, as time went on I got more and more ill.”  True to form Joanne was stoical about it all, but recognises now that she should have gone to the hospital in the middle of August instead of trying to wait for the scheduled appointment. “By now a fibroid had prolapsed from the vagina, causing great discomfort. But there’s something about bleeding like this which is regarded as being unclean and unmentionable. So we just cope because it’s an embarrassing thing and we don’t want to talk about it. ”

At the end of August Joanne finally went to the Emergency Department at Antrim Area Hospital and was admitted for emergency exploratory surgery and the removal of the prolapsed fibroid. The fibroid went for biopsy as a matter of course.

To everyone’s surprise that fibroid was diagnosed as a sarcoma on the anterior vaginal wall. Joanne was passed onto the oncology team and was put on the list for surgery at the Belfast City Hospital. A CT scan and MRI scan were done immediately after the diagnosis in early September: they revealed a large tumour in the uterus and a spread of the cancer to one lung.

A second prolapse became evident on 22 September, the day before her consultation with the surgeon in the City Hospital about major surgery to be followed with chemotherapy. On 2 October Joanne received a date for her surgery – 16 October. By now the fibroid had completely prolapsed and she was in great distress.

Joanne became increasingly unwell during the first week of October, with fits of extreme shivering and of extremely high temperature. This later proved to be a major infection in the tumour. On 9 October Joanne suffered a complete collapse and was taken by ambulance to the Emergency Department in Antrim Area Hospital. Here she received fluids and blood and was given an X-ray and a further CT scan.

On the morning of 10 October she was removed to ICU and informed that the scans had shown a rapid spread of this very aggressive cancer to both lungs and the liver just in the three weeks since the MRI scan had been done. It was now inoperable.

That afternoon Joanne entered the Macmillan Unit at Antrim Area Hospital for palliative care.

“It turned out that I had a very aggressive tumour, but had become so used to period pain and heavy bleeding that I didn’t recognise this as an important symptom of something different. It was just what women had to suffer sometimes. I know from talking now to my family and friends that I wasn’t alone in behaving like this. Many, like me, carry on with the pain and think they have to suffer with periods.”

“In my experience many teachers feel uncomfortable about using the proper words for body parts and functions, yet they are the ones educating our young people. If we used proper terms and talked about periods instead of hiding it away and only referring to “down there” – and even doctors and nurses do this! – it would help to dispel that embarrassment. It’s important that we make it easier to talk openly, to go to the GP and to be confident about what to say.”

Joanne had a simple message for any girl reading this:  “If things have changed for you, please talk to somebody about it   – don’t leave it.”

Having originally written this article on 5 December 2019, Joanne sadly passed away on Monday 16 December before it could be publicised.  Her family were keen that her message would still be heard.

21st January 2020