Carer Story: Natalia Moore

Natalia Moore describes her mum Denise Lloyd’s difficult battle with pancreatic cancer, and coping with life after she sadly passed away.

Experiencing the symptoms

In august of 2017 I was travelling home from London when I received a call from my mum who told me  she was worried as she had noticed the whites of her eyes had gone yellow and her skin was itching,  I told her to take herself straight to A&E as I knew it could have been something serious and her being so worried made me panic , my mum.. Denise Lloyd- had a nursing back ground and was usually very calm but this had her distressed . On the train home I googled what it could be and felt sick with worry I knew that we could be facing something very serious with her liver or pancreas.

Mum’s Diagnosis

Mum went to hospital and had tests done . I went back with her to her appointment a couple of weeks later were we would find out what was going on .. we were giving the devastating news she had pancreatic cancer and now they wanted to check had it spread..… to see her sobbing and filled with fear tore me apart. I kept trying to tell her we would fight this and she would be OK , we had to hold on to positivity. Telling our family was extremely difficult , I have 5 younger sisters and a brother, the youngest being just 11 at the time . The time in between appointments was hard, the waiting round felt like a life time and I can just remember seeing how frightened our mum was , her eyes were filled with fear.

Undergoing treatment

She went in to have a stent fitted to help drain some of the Billie Ruben and then we were told about the Whipple operation mum could have as the cancer had not spread anywhere else. Our mum was unbelievable strong even though she was frightened, she wanted to beat this ,she wanted to live. She told me that she always imagined herself as an old lady surrounded by her grand children.  she was just 53 years old , so young to have this disease.

The Whipple is a huge operation and was very risky but she had no other option really, this seemed like the best way for her to overcome the cancer. On the 23rd September our mum had the Whipple operation, 11 hours of life saving surgery, me and my sisters waited anxiously the whole day waiting for updates, finally late that night we received the call that mums surgery had been a success, the cancer had not spread to surrounding tissue and they had removed it all. She was on the piccu ward in the royal in recovery .

Recovering from surgery

We went to visit her and it was very frightening to see her in that way, she was unconscious with tubes and wires hooked up to machines, she looked very ill but we felt so happy the operation went as planned.  We had said we were going to take pictures of mum on her cancer journey, I took one in the piccu ward and a light beam went through her body on the picture which was strange as their was no windows or any reason for that to be there, we felt that this was a sign her guardian angel was with her.

Mum was moved to another ward and spent the next 5 weeks in hospital recovering which was very difficult for her, we could see how down she was getting and how much pain she was in , we were all so worried but kept her spirits high as much as we could , we were their every day and taking her grand children in made her day too. She grew stronger each day and she was determined to get home and begin the 2nd part of her treatment.

Undergoing chemotherapy

Mum came home in November and then had a couple of weeks before her chemo began, she was to have 6 rounds of chemotherapy at the Linda McCartney centre . She was very worried about having chemotherapy , as we all were, no-one knew what to expect or how ill she would be.

Our granddad- our mums father was a amazing support for our mum and went most weeks to chemo with her, as did our sisters, the chemo did make mum feel unwell and very fatigued and some weeks she was unable to have the chemo as her temp was too high which could be the sign her body is fighting an infection.  Meanwhile after Christmas our mum met Paul, he made her smile again and she would make plans with him and go on trips visit different places around Wales and making memories, she seemed so happy to have a companion, it was someone who could provide her with support in a way that we, her children couldn’t offer, I know mum bottled a lot of her feelings in as she wanted to protect us from knowing how she felt, after all she was our mum and that a mums first instinct, to protect your babies. She had great supportive friends too who were their for her every step of the way too .. she had a great circle of people round her who loved her .

We all felt mum was beating the cancer , we were all delighted when she was coming to the end of her treatment and she was so confident and happy, she truly felt that this was her 2nd chance at living. On may 8th we all headed to the Linda McCartney centre with mum , she was to have her last chemotherapy treatment .. and then she would be ringing the bell, which signalled the end of her cancer journey.. finally she had beat this, she had won … it was the most emotional moment watching our mum nervously, filled with excitement ring the bell. She was so happy , she rang that bell and the whole ward cheered… we were all on cloud 9 … a nurse told her ‘ now go live the rest of your life ‘ ..

We all went out for food and visited the cathedral and lit a candle , and celebrated that night .. she had her first archers and danced the night away with Paul, her dad and friends … finally our mum had done it against all odds ..

Mum has a recurrence

Just 7 weeks later our mum began to complain Of pain in her side , and we did notice her eyes looked a little yellow again , she had some tests at hospital but none showed the Billie Ruben to be high which was strange … she was then

Booked back in for a scan .. after 9 weeks we went in to have a meeting with her oncologist, we were told the cancer had come back quite aggressively at the operation site, had spread outside of the pancreas and a spot was showing in her liver. Nothing could have prepared for us to hear that and our poor mum just collapsed crying , how could we tell her it was going to be OK this time ,  I was in France at the time when this news was given and to hear everyone crying on the phone and not being able to be their was heartbreaking , I needed to be with my family.

I was home 2 days later and we met up at our aunties home, mum was distraught but tried her best to smile.. the next appointment she was to have was to discuss her treatment and what they could offer her. The appointment was heartbreaking and wasn’t what we wanted to hear. Our mum could have chemotherapy to help prolong her life but she was given 6 months. We couldn’t believe after all she went though that this was happening and now with a death sentence . We all took it hard , emotions were running high and mum shut off for a while, she went off to Paul’s and needed time their.. we found it difficult at the time being away from her and it did cause some upset, we wanted her by us, so we could help her an support her but looking back mentally she must have needed time to herself, we can only imagine the thoughts and feelings going through her mind, mum began to get sick quickly and the pain was increasing which meant her pain meds would leave her drowsy and she slept a lot. She came home after a few weeks and needed to have some time at woodlands hospice, this was to help get the right pain med management, she spent a few weeks their whilst the amazing nurses and team at woodlands treated her with so much dignity and respect. We had sleepovers with her at the hospice which was great.  Also our sister Isabella told us she was having a baby in the November, something for mum to fight harder and longer for .. an angel baby sent to help us through a dark time .

She came home in the October but she was beginning to deteriorate now I was so worried as I knew that things were going to get worse, it was distressing for us to know she was in a lot of pain too, no-one wants to see someone they love dearly suffer… she had chemo but wasn’t strong enough some weeks to continue with it.. I could see I. Her eyes she was getting tired and I felt she was becoming depressed, she wasn’t able to live her life as normal anymore and someone always had to be with her. She was a strong independent woman and the cancer was stripping her of everything.

With Christmas coming up we wanted to have it all together , so we had 17 of our closest family gather at my home for xmas dinner. We were so happy mum was able to come , although she had been very poorly the evening before she came that day and put a smile on for everyone , we could see how unwell she was , she was very subdued and quiet off her medication . But still we had got to the 6 month mark and here she still was fighting and having 1 last xmas with us all .

Ont he 27th December was when everything went down hill very quickly, mum was taken to hospital as she became very unwell , and after a short time was moved to the palliative care ward.. we nearly lost her in the January and had a priest at her bedside.. , she had got sepsis and her organs weren’t working properly, it looked like her body was shutting down, we spent agonising days round her bedside praying for her to pull through… and she did ,, she amazed us all and pulled through, Paul was her rock and didn’t leave her side, as did our grandad and her children , we spent hours and days staying with her so she was never alone.  We were told some conflicting news from Dr’s during her stay their which was frustrating as it seemed at times they weren’t sure what was going on inside her body.

We had realised that mum was never going to leave a hospital bed now and this was the beginning of the end, it was very difficult to watch, to sit by and watch your mum deteriorate infant of your eyes. It breaks my heart to know the pain and suffering she went though, to watch my baby sisters and brother hurting was hard I wanted to protect everyone. My children came in to visit her a handful of times and she loved seeing them. The staff on the palliative care ward were amazing and I’m forever thankful for the care they gave her during this time.

Mum’s moved to a hospice

She was transferred to woodlands hospice in the February which as were she wanted to go, we decorated her room with her favourite things and pictures of family were all over the walls, she was fighting and was still determined that she might come home for a short while some day. After a couple of weeks she began to sleep lost of the days away , she was having really bad bouts of pain and wasn’t eating or drinking much . The weight fell off her and mentally she was confused. It was hard to see her like this, again no-one left her side, Paul, my grandad and her children all were their, her friends came in to see her and we all helped one another through the darkest of times. On the  18th march we thought we were going to loose her, she had slipped in to a semi unconsciousness and still had severe pain at times, it was very distressing, she was so thin and her breathing had become laboured.

For 2 days we were their round the clock, knowing that she could slip away at any moment.

Mum passes away

On the Wednesday 20th march at 3.30 I received a phone call from my friend, she was with a spiritualist who had told her my mums spirit was with her and was needing help passing over. I found this comforting in a way, I knew my mum was no longer in her body, it was just a shell, and I wanted her to go to be free from this pain and suffering, everyone of us knew it was her time now to be away from this cruel world. At 9.25 pm that evening in the middle of a prayer with a priest whilst all holding hands our beautiful strong mum passed away peacefully, the hardest day of our lives was saying goodbye. But she didn’t have to suffer any more.

Her funeral was beautiful day surrounded by all who loved her , she had a beautiful send off .

Our mum always wanted to visit Lourdes, but sadly she was never well enough to get their, we hope to spread some of her ashes their one day.

Life after Mums passing

Its now been 5 weeks and it still feels very raw, were all still numb most days.. but we have a good support network. I want to help raise awareness on this disease their should be more done, if our mum had have had another ct scan when she finished her first round of chemotherapy treatment we could have seen it going back at an earlier stage, but due to the hospital protocol they don’t see the need for this I did ask at the time ad was dismissed from the oncologist by being told she was healthy and could go live her life ., which is absurd considering its one of the worst cancers you can get a scan should be done instantly before giving people false hope.

I could be angry but I’m not I’m disappointed,  we also weren’t told that during her Whipple they had removed lymph nodes in her stomach where it had spread after being initially told it was nowhere else, we didn’t even get an apology for this which my mum was very upset with at the time., we were also told twice it was in her liver and twice it was not, which was very distressing as they didn’t seem to know what was going on inside her body. It’s been a journey of ups and downs, but overall she did receive amazing care from the nurses and Dr’s.

On Monday 29th our mum will be 55 years old, we will be meeting at Newsham park cafe and walking in her memory and letting a balloon off to celebrate her heavenly birthday. Were doing this for the pancreatic cancer action charity and one of their volunteers Shaun Walsh who has also had pancreatic cancer. We hope our family, friends and anyone who would like to help show support can make it. And we hope that their will be more testing available one day to help people living with this disease have a better chance of survival .