Claire & Sue
Claire writes about her mum, Sue, who is having palliative care. Sue was diagnosed in April 2021, and her cancer came back a year after treatment. Claire talks about how she and her mum have faced her cancer diagnosis.
My mum, Sue, who turned 70 in December 2020, was a previously fit, active, full time working, determined lady who was fiercely independent and did not smoke or drink. She lost her husband, my dad, who was 53 at the time, unexpectedly in December 2006 but continued to live a good life travelling to many countries with her friend and undertook many hobbies.
However, at the beginning of 2021, mum started to say that her body was starting to feel older. She had lost some weight without changing her diet and her bowel/bladder function had changed. She had no pain at this point and her GP was not particularly concerned.
Suddenly her symptoms were very worrying
I am a medic, and on Saturday 10th April 2021, whilst I was at work, I took a distressed call from my sister who was asking for medical advice about what to do for mum. She had been up all night and morning vomiting, with acute abdominal pain, and her urine was black and her bowels were loose. As it was a Saturday, I advised my sister to either drive mum to A&E with concerns that this could be something sinister, or call 111 and speak to an out of hours Doctor.
Being an experienced medic, I became increasingly worried that these were not good signs and symptoms. Then I had a call back from my sister saying the doctor was calling a 999 Ambulance to take my mum straight to A&E.
I left work immediately and drove to the hospital but was not allowed in due to the Covid restrictions. This was incredibly difficult to deal with.
Mum became very jaundiced by the end of that day and the hospital acted quickly, taking blood tests and performing various scans, to rule out all sorts of other diagnoses.
Two weeks later she was having a Whipple’s procedure
On Tuesday 13th April 2021 we got the news of the diagnosis we were dreading. As a family we were completely shocked, because mum had been so healthy. That is when the fear factor kicked in for all of us, except my mum, whose resilient nature came shining through.
It took several days to get mum’s jaundice count low enough to have a PET scan. She was deemed eligible for the Whipple’s procedure because the tumour was on the head of the pancreas and did not involve major blood vessels and minimal lymph nodes were involved.
So, 2 weeks after hospital admission mum had the Whipple’s procedure, and following a short stay in ICU (intensive care) and a week on a ward recovering, I went to pick mum up from hospital to take her home.
The side effects of chemotherapy were too much for her
After several weeks’ recovery and healing at home, with regular trips to the GP surgery for dressing changes, mum began a high strength IV (intravenous) course of chemotherapy and had to attend hospital for treatment every fortnight for 6 months.
Initially, the weight loss mum experienced following the Whipple was as expected, but the chemotherapy side effects were too severe for mum, even after dropping the dosage. The treatment was stopped in October 2021 because mum’s weight had plummeted way too low. The chemotherapy was doing her more harm than good because she was unable to keep food and fluids down for much of the time, leaving her weak, fatigued and frail looking. The antiemetics (anti-sickness medicine) were not working and mum was quite literally starving to death.
She started to feel better, but the cancer came back
By Christmas 2021 mum appeared to be in much better spirits. She had regained a much-improved appetite and gained back a few of the pounds she had lost. She was back to working full time again and it seemed she was heading in the best direction possible. With blood tests not revealing anything concerning, we started to relax a little. Looking back, I don’t know if that was foolish or not, to be off guard, because the nature of this type of cancer is that is pops up again when you least expect it, which is exactly what has happened.
In March 2022 mum began experiencing nausea, sickness and weight loss at an alarming rate and went back to the cancer team for blood tests. The tests revealed her cancer markers were higher now than they were before her diagnosis in 2021. She was referred for a scan a few weeks later.
On Tuesday 17th May we received the news we so desperately did not want to hear. The cancer had returned to her pancreas and spread to her liver and stomach. It was causing a blockage which was preventing her taking on board any oral nutrition and severely restricting her hydration.
Mum was informed that, as surgery was no longer a possibility, she would be placed on palliative care. Later that day she was admitted to hospital and placed on IV fluids (a drip) to rehydrate her. The surgical team x-rayed and scanned her again to determine whether it would be possible to stent the blockage open to enable mum to take oral nutrition and fluids. Bearing in mind my mum has had no food pass her lips in weeks and is unable to keep any oral fluids down, the outlook did not appear in our favour. In the end, they decided not to give her a stent and instead referred her to a dietitian and to the speech and language therapy team to help her swallow.
The emotional impact of pancreatic cancer is huge
Mum was released home on Friday 3rd June. As a stent could not be fitted, we have been told that mum’s demise will come sooner than later. She has extensive muscle wastage and everyday she’s here is a blessing. Her mind is willing and able but her body is fading, sadly.
As a medic I fully understand what this means, but as a daughter I am completely devastated at the thought of losing my mum to this cruel disease. The speed of mum’s illness has taken us all by surprise and being an observer to the devastation to her physical body has caused so much distress, I struggle to contain my constant urge to break down emotionally.
I take some solace from the fact that mum has made peace with her diagnosis and possible demise and is so calmly accepting of it, I wish I could do the same. I struggle to find happiness in daily life and simple things such as eating a meal makes me feel an incredible guilt when I know my mum is quite literally starving to death.
I recently watched Vikings and The Last Kingdom series on Netflix and cried because my mum replicated what it means to be a truly brave warrior when facing the possibility of the end of her life. She really is an angelic trooper and example to us all and I hope I get to spend more time with her than is predicted.