Living with Stage IV Ovarian Cancer – Mum’s Story.

Mum, Dad and I 

I have never actually written anything about Mum’s ovarian cancer except for the odd Facebook and Twitter post, so I thought as It is Ovarian Cancer Awareness Month I would put pen to paper and attempt to raise some awareness.

Mum’s story began in 2012 when she thought that she might have pulled her hip muscle doing housework. Nothing would shift the achy feeling, so she asked for advice from her GP who prescribed various pain medications. She even had some physiotherapy to solve the pain that she was having in her hip, but again it was fruitless.

During this time my 99-year-old Grandmother suffered a stroke at home and was hospitalised. Mum carried on as best as she could and continued to visit her GP who was now treating her symptoms as sciatica. More medications, no offer of a scan but maybe buy an expensive exercise bike to help with the pain and off she went without any real answers.

Sadly, Nan passed away six weeks after her stroke due to her also having cancer. We were never sure where Nan’s cancer originated from, she had an X-Ray, and there were multiple tumours in her lung, breast and lymph glands, we felt it would be kinder to leave her be rather than poke and prod her which of course wouldn’t solve anything in the long run.

After Nan had died, Mum’s health started to decline. Eventually, my Dad took her to Whiston hospital where a blood test confirmed a rise in white cells; a lump was also felt in the pelvis area.

A scan was organised for Mum at Clatterbridge hospital in July 2013 which confirmed that she had ovarian cancer, some tumours on her bowel and a spot on her liver. She faced an operation to remove the tumour, part of her bowel which would mean having to use a colostomy bag for the rest of her life and once she had recovered from the surgery she would then need six rounds of Carboplatin chemotherapy every three weeks.

As there was a cancellation at the hospital Mum’s surgery was brought forwards, and she had the surgery on the 11^th July. I busied myself by cleaning non-stop, and I wasn’t expecting news from Dad until early afternoon, but he rang at lunchtime and we thought that meant that the operation was a success and maybe she didn’t need part of her bowel removed after all!

That evening I visited Mum in the hospital, she was high on Morphine but was demanding her favourite sweets – wine gums. Eventually, Dad and I saw a nurse, who told us that a good chunk of cancer was removed, but most of it was stuck to the stomach wall. The surgeon couldn’t remove a section of the bowel because of this issue. We were also told rather abruptly and without feeling that the cancer was stage 4 and wasn’t curative but it could be managed with treatment.

I was standing up, in shock and I couldn’t believe what I was hearing. It may be something that a nurse or a doctor has to say often to families but to hear that Mum would never be free of cancer was soul destroying. Why couldn’t this nurse offer some comfort? After all, this was someone’s wife, mother, grandmother, sister and aunt she was talking about. Some compassion would not have gone amiss.

Despite the bad news, it wasn’t all doom and gloom! There were options, Mum’s cancer could be reduced with the Chemotherapy. Her surgeon passed her over to a wonderful specialist and soon after she began her course of chemotherapy.

Mum’s main concern, and perhaps it is slightly vain was that she was anxious about losing her hair. A woman’s hair is most important especially to  Mum who has always taken great pride in visiting the hairdressers regularly. Thankfully, though, Carboplatin allows you to keep your hair, but you are not allowed to dye it as this would kill off the hair follicles. I had never known her to be anything but an ash blonde!

The chemotherapy made Mum extremely ill, and she ended up in the hospital seven times. She received the best care in hospital, the staff were fantastic and were a great source of comfort. Chemotherapy caused mum to have bowel issues, which meant that eating was a problem. Steroids did help her to put on some weight, and dietitians recommended eating fatty foods to gain more weight. She couldn’t stomach pies and sausages which offered no nutritional value. her iron levels also needed to be boosted as a side effect of the Chemotherapy was iron deficient anaemia. A couple of blood transfusions were needed to keep her iron levels up.

Dad and I started to read up on foods that may be beneficial to Mum. Turmeric was proven to kill bowel cancer, tomatoes, beetroot, Camp coffee were all beneficial. Turmeric was added to soups; Camp coffee was drank, green tea too. The main aim was feeding her with foods that would be of benefit. When we put this to the dietitian at the hospital, we were dismissed, and they offered no support. Surely to help fight cancer, there should be more research into how foods can help in the fight. Of course, we shouldn’t replace chemotherapy with foods, but they certainly have a role to play in the fight against cancer.

After three rounds of chemotherapy, Mum had another scan at Clatterbridge hospital. Two weeks later, just before Christmas 2013, she was given the results. Written on her notes were the words ‘spectacular results’. The cancer had shrunk to nothing. The spot on her liver had gone, and the tumours on her bowel had reduced right down too. It was the best Christmas present that we could have hoped for.

Mum had another three rounds of Chemotherapy, more spells in hospital and then another scan which confirmed again that the cancer was almost gone. The consultant told us that she would be checked twice a year. Finally, we could get on with our lives after a very turbulent 18 months.

• Mum and my eldest daughter Emily. Mum had recently completed her six rounds of Chemotherapy.

The lump that was removed from Mum’s ovaries was analysed to determine what type of cancer it was. A letter from the hospital explained that the cancer could be genetic. We had no real idea what that meant, nobody had ovarian cancer in our immediate family, although a cousin’s had breast cancer in the past. Nan died of cancer in later life, and Granddad had strokes which killed him in the end. In my mind, I couldn’t understand how there could be a genetic link.

Mum was scheduled to see a genetic counsellor, at the meeting we mapped our family tree and discovered that dormant cancer that my Granddad had in his prostate was a link to ovarian/breast cancer and a mutation in the BRCA1/2 genes.

Straight away Mum had a blood test. The results would take three months to be analysed as it was like looking for a needle in a haystack. The results came back in September; I was sat in a car park just about to go shopping when she called my mobile and told me that she did have the BRCA1 gene mutation.

With the results being positive for a genetic link I would also need to be tested if I decided that was the course of action I wanted. I didn’t hesitate, of course, I wanted to be tested. From day one my thoughts were that if I did have the BRCA1 mutation, then I would have a double mastectomy and removal of ovaries. The alternative was to be tested every year, to have mammograms and blood tests. I didn’t want that threat hanging over my head, so I was adamant that if I did have the mutation, then surgery would be my best option.

So I began the process of genetic counselling. The whole process took a year to go through. I that time I couldn’t plan for the future. I didn’t think that I was too bothered by the threat of a cancer link hanging over me, but looking back it did affect me. I just couldn’t understand why the process was taking so long. I knew that I wanted to be tested, but I had to wait while I had counselling. Although in a way perhaps it was best to wait as every time I would go to the hospital for a chat I was relieved that I didn’t have the blood test. I was so sure that I had the mutation that I mentally prepared myself for that outcome, surgery and new boobs! That would have been one of the plus sides to all what I was going through! I made light of the situation; I was focused on what I had to do if like Mum I carried the faulty gene.

Eventually, in September 2015 I finally had the blood test which was taken out of my right hand as I have no visible veins! The results would take a month, and I opted for a telephone appointment rather than a visit to the hospital. I thought that driving to and waiting for the results would be quite nerve wrecking. I just wanted to get it over with as quickly as possible because if the results came back positive, then that would also have implications for my three daughters.

Two days before my youngest daughters birthday on the 17^th October, I received the results. My telephone appointment was for 1 pm but by 2:30 pm I was still waiting for the phone to ring. By this point, I was pacing the floor although I did start to wonder if the results were negative as I was sure that the nurse would call patients who had a positive result first.

I was right! Immediately I was told that it was good news and that I didn’t have the BRCA1 mutation. The relief was immense, not only for myself but for my daughters who didn’t have to be tested as thankfully with BRCA1 it does not skip to other generations.

My Mum has always said I was like my Father; now she had been proven right, although genetically! I still have her foul temper! It may sound silly, but I felt like I had been re-born or won the Lotto. I could now get back to living my life.

I had convinced myself that I had the mutation that for once I was stunned into silence. I couldn’t believe it, for a year my life had been centred around the thought that one day I may end up like my Mum unless I took action. Now that threat for that particular cancer was no longer there, and it felt so good.

It has been three years since Mum finished her last round of Chemotherapy, she is still doing so well. Due to some slight pains in September 2016 another MRI was scheduled. From that, we discovered that the cancer had shrunk further without medication. How? Maybe with the foods that she is eating they are doing her some good. We will never know, but by continuing with the cancer-fighting foods, she is continuing to thrive and do well.

Mum is fortunate in one respect because her cancer is genetic and Carboplatin is designed to work well against the disease she can be treated over and over if needs be, thankfully it has not got to that stage yet.

My one wish, though, is that doctors become better qualified at spotting the signs of ovarian cancer. Mum was not a classic case; she had no bloating or tiredness, only pain and weight loss. If someone is going to a GP ten times in a short space of time then surely that needs to be investigated? Mum was one of the lucky ones despite a stage 4 cancer diagnosis, sadly not many women are quite as fortunate.

Mum and Emily, January 2017. Looking and feeling so much better.