Research into rare cancers is vital for families like mine
By Wendy on 7th November 2022
Knowing Paul’s cancer was fairly rare with little research into it made me feel frustrated and angry. He wanted to help find a cure and the only way he can do that now is through me. I will continue his legacy in the fight against the ‘Silent killer’ that is pancreatic cancer.
My husband Paul was diagnosed in November 2019 and died 13th February 2021. He was diagnosed with stage 4 metastatic Pancreatic cancer and was terminal. The tumour was in the neck of the pancreas and was attached to the major blood vessel making an op called the Whipple procedure unviable.
When we were told I was holding his hand tight, and he just responded with “Ok”. I was fighting back the tears looking at him. I felt completely numb and didn’t really hear anything else the consultant said. He was so strong and took it in his usual stride. We walked back to the car in complete silence, and it felt like an eternity.
I think we were both in shock and trying to process it. On the car journey home, we sat in silence, the only thing I said was “what are we going to tell the kids?” He said, “nothing yet” Once home it was so hard to pretend nothing was going on.
His first symptom appeared overnight; he had turned yellow. He was given blood tests and a scan and then taken into urgent surgery to place a stent to stop his bilirubin rising any further as they were at a dangerous level. The consultant said that as he was fairly young at 53 and relatively healthy, they would start him straight onto the strongest chemo regime for an initial 3 months. It consisted of several drugs including folfirinox and gemcitabine amongst others delivered over several hours via IV. He also had to have an injection of atropine and drugs to prevent sickness and other side effects of the chemo.
He was also on various medications from the GP for the symptoms of pancreatic cancer to help relieve the pain or deficiencies. One of the drugs prescribed was Creon capsule, these help the body absorb the nutrients and break down the food. Sadly, not everyone has access to this vital drug, without it the pancreas will continue preventing the body absorbing vital nutrients. He had to have constant blood tests. Paul had an extreme reaction to the chemo, and it stripped his bowel lining resulting in a hospital stay to stabilise him. The chemo strength had to be reduced to half strength and delivered in the same way. This was a huge set back and potentially going to damage the success rate. Unfortunately, the first round of chemo wasn’t hugely successful, the tumour hadn’t grown but also hadn’t shrunk.
As covid was rampant and Paul’s immune system was greatly compromised they decided another round of chemo was not worth the risk. A couple of months later he had new symptoms and was sent for another scan which revealed the tumour that we had named ‘Edward’ had grown a bit but had also spread to his lymph nodes. It was agreed he would try another course of chemo but not as many drugs and not as long as he was no longer in receipt of folfirinox. This was another 3-month course followed by a scan. Sadly, there was no improvement, so treatment was stopped, and we were referred to palliative care. A couple of months later he developed ascites which is fluid built in the abdomen. He had to have a temporary drain; this happened a couple more times before they fitted a permanent drain which would then require a district nurse to come in either daily or every two days to drain Paul’s fluid away. I asked to learn to be able to do the drain. Once they were satisfied, I was competent they no longer needed to visit, and I performed the drain which was important for both our morales.
I would have done anything I could to help him as most of the time you feel so helpless. Lockdown caused us to shield and for that I am grateful for that special quality time together.
There is no early detection test and very little progress has been made to find one and successful treatment. Knowing only 7% of people diagnosed with pancreatic cancer survive 5+ years. I was shocked at how few the treatment options were. He asked if there were any trials, he could go on but sadly his cancer was too progressive as with so many others that are diagnosed with it.
I turned to Macmillan onsite at the hospital to have a release and get some information. They have an open door during their opening hours and can offer a sympathetic ear, chat over a cuppa, lots of information on how to manage cancer and for those who have sadly lost their hair through chemo, they have an area for wigs and support.
I heard of RareCan through Facebook and decided to contact RareCan as Paul was passionate about helping to bring progress to pancreatic cancers research and trials.
I am so frustrated with how little progress has been made in research, early detection and treatment. People are not being made aware of the symptoms to look out for although most can be put down to other common problems. By the time symptoms appear it is usually too late. Symptoms include:
- Abdominal pain that radiates to your back.
- Loss of appetite or unintended weight loss.
- Yellowing of your skin and the whites of your eyes (jaundice)
- Light-colored stools.
- Dark-colored urine.
- Itchy skin.
- New diagnosis of diabetes or existing diabetes that’s becoming more difficult to control.
- Blood clots
- Stools float and are difficult to flush away.
- Reduced appetite
It is a very aggressive cancer and without treatment Paul was told 3-6 months to live, with treatment he could possibly have a year. This is terrifying to hear. We know many diagnosed with Pancreatic cancer have a very low survival rate. Paul was strong and he fought it for 15 months and we as a family don’t take how lucky we were for him to survive as long as he did, for granted. It is known as the ‘Silent Deadly Killer’ for a very good reason and that is why it desperately needs more research and trials and for that to happen it needs money and people willing to participate.
In November 2020 he became extremely unwell with vomiting. However, it was not the usual sick it was a brown grainy liquid that had a very distinctive smell. He vomited several times a day and each time it was about 5litres at a time. It happened day and night. He struggled with it for about 3 days before being admitted into Mountbatten Hospice and was there around a week. He was extremely dehydrated and was on fluids IV and had an anti-sickness injection and medication.
In December, his fluid changed, and it had become a paler yellow and very cloudy, which could mean it had spread to his liver, but it hadn’t been diagnosed. I had too really push to get someone to listen to me that it had changed. Eventually he was due a scan, but it was too late.
His last 24 hours were very sudden and unexpected as there had been no definitive change in his symptoms and were extremely awful with the return of sickness, extreme fatigue, pain, and spasms with every movement and for a while he lost the ability to move a leg and was unable to do anything for himself, drink, eat or swallow his medication.
I hope RareCan can raise awareness of the need and urgency for research to be invested in Pancreatic cancer. They can’t do it on their own; they need people willing to reach out and hopefully RareCan can get that message out to its members
If they can get someone to partake in this vital work, it may result eventually in saving someone’s life. Without research and trials there is no hope for the survival rates to rise.
If my husband was alive today, he would encourage people to take part in the research as you never know if you will ever need it in the future. He would point out that if people don’t come forward to take part in research and trials, the silent killer would keep killing!
Paul wanted to donate his body to science after he passed away, so that scientists could learn from his tumour that we called ‘Edward’. Or any other part of his body which could provide crucial research. Sadly, due to covid he was unable to do something he was passionate to do, donate his body. He was dying but he still wanted to help others.
I am immensely proud of him for wanting to do the selfless act to try and help others.