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"My wife, daughters and I decided that we should be open and honest with one another"

29 March 2018

Paramjit’s wife Ravi was first diagnosed with ovarian cancer in 2007, eventually passing away in May 2017. Paramjit shares his story to help raise awareness of the importance of early detection and to encourage women to be persistent with their GP if they are experiencing symptoms.  

“A few years before the diagnosis my wife Ravi started to complain about getting wind in her abdomen and occasional pain. She initially dismissed this as nothing serious, but as time progressed, she also started to feel bloated and later suffered constipation and a lack of appetite. When she started to experience bleeding when opening her bowels, my wife did consult her GP who told her these were menopausal symptoms that would eventually pass.

However, 18 months down the road, things were getting worse; she also developed a cough and her symptoms became more regular. We decided to have a further consultation with the GP, who again attributed them to the menopause.  

A few years earlier we’d lost my sister-in-law to ovarian cancer, whose symptoms, (persistent cough, stomach bloating and tiredness), were completely missed by her GP until she was diagnosed with stage 4 advanced ovarian cancer. It was too late for any medical intervention and after six weeks in hospital, we sadly lost her. 

I was well aware of my sister-in-law’s symptoms and told my wife she should go back to her GP and insist on having a scan, which the GP finally agreed to.

At the hospital, we were told that the ultrasound showed a large mass on her ovaries and her blood test indicated that her CA125 marker was over 2000 (a normal level is under 35). This didn’t mean much to us, so it was a big shock when cancer was mentioned. It felt like the whole world around us had collapsed and we didn’t know what to say. We just sat in the waiting area holding each other’s hands, crying, trying to digest what we’d just heard. The only thing going through my mind was my what my sister-in-law’s journey had been and fear for my wife. 

We debated how to tell the rest of the family this devastating news, in particular our two daughters. My wife had a strong personality and decided that we needed to let our immediate family know, to think positive and start getting some treatment.  

A meeting with the oncologist confirmed that Ravi had stage 3 ovarian cancer. It was decided that she was to have three cycles of chemo follow by full hysterectomy and a further three chemo cycles. After this she was monitored on a monthly basis. After gruelling treatment and surgery, regular blood tests indicated that CA125 was well under control and she was in remission. It was the best possible news we could have hoped for.

"My wife decided she would rather be cared for at home than go to a hospice"

Paramjit

However, in 2010, we were devastated once again when it was discovered that Ravi’s cancer had come back. This meant starting chemo again, with check-ups every month. Her CA125 was steady for a short period and then started creeping up, calling for another round of chemo. This pattern continued for five years until 2015. She even had radiotherapy on the largest tumour, but even this did not seem to help.

In 2014 we had heard about a new drug called Olaparib, which specifically targets ovarian cancer, but is only effective if the individual has a BRCA mutation. However, Ravi’s test came back negative. This was bittersweet: if the test has been positive, it could have helped my wife, but it would have also meant that other blood relatives could be at a higher risk of developing cancer. 

In addition to the chemotherapy, my wife was also constantly admitted to A&E, with severe abdominal pains, constipation, nausea and urinary infections. Her magnesium level was also always low, needing regular top ups. On a few occasions, she also required blood transfusions.

While the hospital was able to help manage the symptoms, the cancer continued to progress. Eventually, we were advised by the doctors that there was not much more they could do, and that she would be referred to the palliative care team. 

My wife decided she would rather be cared for at home than go to a hospice, so I decided to give up my work and care for her.  After the initial shock of having to live with terminal cancer, we got into a routine which helped us both. However, getting to that stage was not easy and I was experiencing panic attacks, anxiety and stress. I had found myself in this very unusual situation not knowing how to deal with it. At this point I found professional counselling very useful, as I was able to start talking to my family and others about how I was feeling.

During this period, my wife, daughters and I decided that we should be open and honest with one another and say whatever was in our minds and hearts, so that we wouldn’t regret anything afterwards.

This was the best thing we could have done. My wife’s main concern was not that she was slowly deteriorating, but how her family would cope after her death, in particular me because I would be left in the house on my own.  The only honest answer that I could give her was, ‘I don’t know, since I am not in that situation as yet’. I think she knew that I would find it very hard. 

On the 6th May 2017 my dad passed away, and I was busy with the family arranging his funeral, while my daughters cared for their mum. Five days later, around midnight, my wife started to experience very severe abdominal pain. The nurses came and administered some different drugs via injection, however it only settled her for a very short time and her pain seemed to increase rather than decrease. I noticed her breathing had changed; it had become much more laboured and croaky.

"I still didn’t realise the severity of the situation and put it down to her just being exhausted."

Paramjit

By the time the ambulance arrived at 7am, Ravi was in a lot of pain and very weak. This was the first time I had seen her experience this level of extreme pain and weakness.  

At the hospital she was given an X-ray, which showed there was a blockage in her bowels, but unfortunately nothing could be done about this, due to the progression of the cancer. Any kind of surgical intervention was totally of the question, so all they could do was manage her pain.  

When I visited her the next evening, the pain seemed to be under control, but she was very tired and weak, hardly eating and just wanting to sleep. I still didn’t realise the severity of the situation and put it down to her just being exhausted.

We were devastated to learn from the palliative nurse that my wife’s condition was very serious and that she thought she didn’t think she would live past Monday. It was very upsetting to hear the end was so near, especially knowing that we had my dad’s funeral on that day.

After the meeting we decided we should call the rest of the family so they could come and see Ravi. By now my wife seem to be in deep sleep and the only response she could manage was blinking when spoken to. 

A few hours later all the visitors had left the hospital except my daughters, son-in-law and me. As we sat around her bed each breath seemed to become more and more difficult. At around 10.30 that night she took her last breath and passed away.

 My daughters were very upset and we just hugged each other, but I seem to be still in a state of shock. Losing my wife and dad within a week was beyond comprehension. 

Although the cancer was diagnosed at stage 3, the positive side was that she went on to have eight really good years before she started to deteriorate. In those years she saw her two daughters get married and settled into their new homes and became a grandmother twice. We even managed to have at least one holiday every year. We were very fortunate that we had this precious time to be with her.”

Could you help raise awareness by sharing your story? Find out more about becoming a Voice for Ovarian Cancer Action.

Paramjit WIHN pic