The Road to Recovery

This will be my 72nd (published) post on the blog. As soon as I saw that the last one was 71, I knew what I wanted to talk about in it. 72 was not a significant number to me a year ago. My readers who are familiar with pancreatic cancer, or are good at internalising figures and have read my blog for a while, may know why 72 is a significant number now. It is the average age of diagnosis for Pancreatic Cancer victims, or I believe it is anyway. Originally I read 76, but I have since read 72 on various charity websites, so that is the one I regularly quote now.

I feel guilty for frequently using this statistic to comfort myself. “You’re much younger than the average person with this cancer, that must count for something.” It isn’t just me who says these things – I get it from doctors, nurses, friends and family. It does bring me some comfort. You have to find ways to cope under the circumstances you find yourself in. When I sit down and think about those people being diagnosed in their 60s, 70s and onwards, though, the feeling isn’t one of comfort. I feel sad. Even though it is better to be diagnosed with cancer at that age as opposed to in your 20s because you will have lived a lot more of your life, you still have a life that you want to hold on to. You likely have children you love, and you may have grandchildren you want to see grow up. It cannot be easy being diagnosed with pancreatic cancer and having to read the bleak statistics around it, knowing that you cannot find the same natural defences against these figures. The typical diagnosis is also in advanced stages – mine was locally advanced. That means that a lot of these people are also being diagnosed too late, making their chances of long term survival even slimmer. It is sickening, really. I’m not sure if locally advanced actually falls into the category of ‘advanced stages’, but I would imagine it does. I think, because of my age, the oncology team just felt that there were a lot of options for me. Perhaps there wouldn’t be so many if I was 72, I’m not sure. It still guarantees me nothing, of course. But there are no guarantees in life. We’re regularly graced with threats of nuclear war in the news right now. It isn’t a nice place to gain some perspective on my personal circumstances, but I cannot help taking some from it.

These feelings are tempered when I consider the case of Nigel, who I have spoken about on this blog a few times. His daughter contacted me through the blog and told me about his story. He was diagnosed at 71 – a year short of the average. I first spoke to him on the phone about what happened to him. He was diagnosed and given 8 months to live. After having an incredibly successful bout of chemotherapy, his tumour had reduced by 55% and the cancer, which had previously spread to his lymph nodes, had completely disappeared from them. Nigel finished his 6 months of chemotherapy treatment still believing that it was palliative, before receiving a phone call from the hospital a month later informing him that they were willing to try and operate. He’s now 3 years clear and full of beans. We’ve met up frequently and our families have become close. They’re invited to Anna and I’s wedding and I can’t wait to celebrate the day with them. Their support has been incredible and unrelenting throughout my treatment.

His story is unusual, though. The statistics will tell you that much, although I’m not going to dig into them too deeply here. I’ve done all of that in previous posts and I’m trying not to dwell on them too much; no matter how young you are, they don’t give you a lot of hope for survival. Nigel’s story tells you that dwelling on the statistics isn’t helpful. It actually tells you that it isn’t worth dwelling on the things being said to you by the medical team too, but that is much harder to implement in my experience. If my team told me that I had 18 months, I don’t know how I’d hold myself together. But, I would have said that about any cancer diagnosis a year ago, so I actually feel confident that if something like that does happen to me, I’ll find a way through it. Especially with the support that I have around me. You quickly adjust to things – just like how we all adjusted to the ‘New Normal’ during Covid; the lockdowns, the new rules, the changes to social etiquette. We always adjust.

So, I strive on toward recovery. Not an average, not a number, not a statistic. Just another person with cancer who is trying to beat the odds, whilst trying not to dwell on those odds. My chemotherapy line will be taken out at some point today when the district nurses come round – that always makes me feel good. I finally get to shower again! Then I have one more session of chemotherapy before the big scan, which has been booked for Tuesday, May 17th. It is a bit unusual that it is booked in week 1 of the cycle – it was in week 2 last time and I thought the oncologist said that this was the most logical time to do it. I don’t mind, though. I might be feeling a little bit dodgy that early in the cycle but you get pretty good at feeling dodgy when you’re on this type of chemotherapy!

I came across an inspiring story yesterday. Of course, its origins are tragic, as they often are with pancreatic cancer. Pia Eaves was a loving wife and mother of two daughters. She died of pancreatic cancer at the young age of 54, only 11 months after being diagnosed. The Walk for Pia campaign is a challenge created by her family to raise £100,000 for Pancreatic Cancer UK running from April 20th until May 1st, yesterday. During this period, they walked 200 miles and have raised over £90,000 – an absolutely incredible feat. I am totally in awe of them. Pia was a fitness instructor and kept herself in good shape. She was also well below the average age of diagnosis for a pancreatic cancer sufferer.

It was hard for me to not relate to what I was reading as I studied the website, reading the details of her life, and the disease which ultimately brought it to a premature close. I was running ultra-marathons just weeks before I went into the hospital, where we started to establish that what was wrong with me was not going to be easily sorted. Things continued to spiral downwards from there. The PET scan and endoscopy procedures are to thank for my diagnosis. Before that, the medical team seemed sure that my issues were all caused by a cyst on my pancreas, leaving me jaundiced. I’ll never forget the look on their faces as they walked into the room to deliver the final, crushing diagnosis… pancreatic cancer… spread to the artery, but not spread outside of the pancreas… straight into treatment… need the chemotherapy to ‘take’… an extremely aggressive form of cancer… the condolences as they left the room… the cries that echoed around me… the grin on my face and the shaking of the head… How is this really happening? I still ask myself that sometimes, but less frequently now. It doesn’t matter how it is happening, it just is. There isn’t a why, there is only a what. I’m ok with it.

On that note, I’ve been looking at jobs in cancer charities that I believe I could do with my experience and skills. There are a few in data and analytics that sound appealing. It made me feel motivated and empowered, feeling like one day I could be wearing my survivor status with pride, and using it to energise myself in a role making a difference in people’s lives. People who are suffering in similar ways to the way that I have suffered, striving to survive in the way that I am. There are so many of us out there that it forms more than just a community – it is a whole section of society. It only seems to be growing in number as the field of medicine identifies more effective ways to diagnose, and is successfully doing so earlier. I’m not even sure I would have been diagnosed 30 years ago with the symptoms that I was displaying. Maybe not even 20 years ago. I think it shows that I am in a good place that I am seriously considering a long term future, and what plans it might hold for me. Hope is a valuable thing when you’re fighting a life-threatening cancer. Even when the statistics tell you that you have a 1% chance of surviving 10 years past your diagnosis, you can hope harder than anything that you are in that 1%. Let’s see what the scan says, and what the next stages of treatment will hold. It’s an exciting but scary time, but it is necessary to move things along.

I want to dedicate this post to everyone who has been affected by cancer. Whether you are grieving a loved one, a sufferer yourself or you work with people affected by it. There’s a lot of pain and suffering involved in cancer, but there’s an opposite side of the coin where it can bring out amazing things in people; raising £100,000 in memory of a lost mother, to the benefit of the thousands of people who will be diagnosed with pancreatic cancer every year. I read on the website that around 8,924 people die of pancreatic cancer every year – an average of one person every hour… yet the cancer only attracts 2.1% of the UK Cancer Research Budget, it is the 5th deadliest cancer in the UK and has the lowest survival rates of the 20 most common cancers. As a sufferer of the cancer, the biggest source of hope I have found is by speaking to people who have beaten these odds, and who continue to send me messages of positivity, encouragement and unfaltering support. They tell a different story to the statistics – one that you rarely find online. That story says that it is beatable and that there is a future beyond it.