The Road to Recovery
Another day, another appointment. Today it was with one of the dieticians at Manchester Royal Infirmary (MRI). It was extremely useful and I recommend to anyone who has a Hepato-Pancreato-Biliary (HPB) disease, such as Pancreatic Cancer, to get in touch with a dietician from their hospital as early on in the treatment process as possible. I feel like I have had drips of information from other parts of my treatment, but nothing like the level of help that I received today. A lot of the strategies and knowledge I have utilised so far have come from research that I have done myself, or through discussions with other cancer sufferers. There was a really useful call that I joined with Pancreatic Cancer UK which lay out the fundamentals of Creon and why I need to take it, but that was a group call; having a 1-2-1 with a dietician allows you to dig deeper into the specifics of your individual case. No two cases of cancer are exactly the same after all.
Not only did I learn more about diet whilst suffering from pancreatic cancer generally, but I also learned a lot about diet when approaching a major surgery. Want to know the good news or the bad news first? Let’s get the bad news out of the way first… My assumption that getting as healthy as possible before surgery, by eating healthy foods and losing some weight, was totally wrong. Solid stuff, Dan – typical know it all idiot deciding that you know everything about the world and jumping to conclusions.
It turns out that the average person who has had a Whipple procedure will lose about 10% of their body weight post-surgery. That means that you want to put on weight before surgery to try to minimise the impact that this has on your body. Even if you are not having a Whipple, you will still lose weight after a major surgery due to the abundance of drugs and suffering appetite during recovery. Of course, I am assuming that you are a healthy weight before surgery; if you are overweight, I don’t think the advice would be the same. Then again, I’m not sure – I’ve had a single meeting with a dietician, so you probably want to take everything I say with a pinch of salt (and a whole trough of full-fat cream if you are trying to pile on weight before your own Whipple procedure, like I now am).
The good news is that I now get to eat whatever I want for a few weeks! Success! I’ve been encouraged to give away absolutely none of the cakes I bake and to eat them all myself. I essentially have a doctors note telling me that I NEED to eat as many calories as possible. Not only that, but I was given a leaflet which instructs me to eat pizza, cheese and crackers and fatty snacks like scones. It’s unusual to find myself praising surgery or cancer, but I have to give them both a tip of the hat here. I’m not sure I’ve ever heard medical professionals advising me to eat pizza; it feels like a trap.
My goal is now to turn up to the surgery, step onto the scales, and see the nurse’s eyes widen as she records my weight. “Two seconds sir, I just need to check something with the doctors,” she says, trying to hide the panic in her face. I’d stand there with a smug smile smudged across my face. Next thing I see is the doctor running around the corner – “Hello Daniel. It appears your weight has doubled in 10 days – how on earth did you manage such a feat?” He’d ask. I’d proudly reply “I started to blend scones and cream together to drink alongside my 16″ pizzas… and that is just my breakfast routine.” They’d praise my ingenuity before informing me that they can no longer proceed with surgery as I have eaten myself out of qualification… you win some you lose some, I guess.
In my case, though, I have been warned that I am unlikely to have a Whipple procedure. Due to where my tumour is, at the head of the pancreas and surrounding a major artery, it is unlikely that it will be possible. The fact that the pancreas is already in a difficult place to operate on, alongside the fact that the tumour is in an awkward position on my awkward pancreas, means it is near impossible to operate on in a conventional way (conventional being the Whipple procedure, which is anything but conventional; it essentially involves removing various organs from the digestive tract before attaching it back together in a new order). Further to this, today I learned that having a tumour in the head of the pancreas is more damaging than having one in the tail as the head is where the main pancreatic activity is; it is the part of the organ which produces insulin, as well as the part which creates the enzymes that break down fats. A tumour in the head of the pancreas may also physically block the enzymes from getting into the stomach.
I’ve tried to explain it all a little better in the following paragraph, which I wrote over a long period of time and with great effort. I ensured I did plenty of research before writing it, and am confident that it clearly demonstrates the functions of the pancreas, and why having a tumour in the head of the pancreas is so damaging to your body. Not only does it clearly demonstrate these things, but it does so in a way that the layman can understand, like you and I. Whether the mainstream medical journals choose to praise me for achieving what they never could, is up to them; if it is too edgy then so be it, not everyone can take my raw and direct approach.
The reason that the Whipple procedure is so difficult is because your stupid pancreas is behind your stupid stomach, so it is already hard to operate on in stupid surgery. The pancreas produces stupid insulin to control your stupid blood-sugar levels in your stupid body, but it also creates stupid enzymes which help break down stupid fats in your stupid stomach. When you have a stupid tumour in the stupid head of the stupid pancreas, it disrupts all of this stupid activity because the stupid head of the stupid pancreas is the part which is stupidly responsible for producing and releasing these stupid enzymes and stupid insulin. That means that if you have a stupid tumour in the stupid head of your stupid pancreas then your stupid body starts struggling to supply the stupid enzymes to the stupid stomach which help it in breaking down the stupid fats. That is why stupid Creon, a stupid tablet that you have to take a stupid amount of with meals, is so stupidly necessary when you have a stupid tumour in the head of your stupid pancreas. Further to all of this, the individual who stupidly allowed a stupid tumour to grow in the head of the stupid pancreas has an increased chance of developing stupid diabetes because of the stupid pancreas not producing enough stupid insulin anymore. Capiche? Good. Glad I got that off my chest. Probably some of my best writing, if I may be so bold.
Seeing as a Whipple procedure is so unlikely in my case, you may be wondering why they are going to be slicing my entire abdomen open and spending hours operating on me. This is where Irreversible Electroporation (IRE), also known as NanoKnife, comes into play. I’m not sure why it has two names, which seem to introduce it as two quite different things, at least linguistically. Irreversible Electroportation makes it sound technical and cutting edge. NanoKnife makes it sound like the surgeon requests the extra small knife for this part of the procedure, before grasping it with the thumb and finger and delicately shaving the tumour away. Although the second is far more entertaining to imagine, I believe that the first far better describes the technique. A small electric shock is applied to the tumour, attempting to kill the cells. Its success in treating pancreatic cancer is little documented and not really understood, so we are in “uncharted waters,” to quote the surgeon in my first meeting with him. They do not commonly agree to do a major operation, only to use an experimental form of treatment with little documentation over whether it is likely to improve the situation or not. The treatment does seem to have good results with prostate cancer, though, so I really am positive that it is a good alternative if a Whipple cannot be done.
What I don’t like is the use of the word ‘Irreversible’. I can’t think of many medical contexts where you want to hear the word ‘irreversible’ used. Perhaps if there was a procedure called ‘Irreversible Cancer Killer’ which irreversibly killed all cancer cells in your body, I’d be on board. I haven’t heard of such a procedure, though. In this case, the word ‘irreversible’ just makes me think that I’ll be sat in a meeting in 5 months time, reviewing a new batch of scans of my pancreas. As the doctor explains to me that the electric shocks have irreversibly damaged my pancreas, I’ll sit with a confused look on my face. “I thought this was meant to help? Is there nothing you can do?” The doctor then smugly laughs and says to me, “I’m sorry Daniel, do you understand the definition of irreversible? The clue is really in the name.” I absolutely do not believe any of my oncologists would speak to me like this, but it is fun to have a bad guy in a story. I hope none of them read this blog… Who am I kidding, they’re far too busy to read this nonsense.
Anyway, this all relates to diet because a Whipple procedure takes a lot longer to recover from. The dietician told me that they make three new ‘joins’ in your digestive tract when doing a Whipple. I’m pretty sure I cringed when I heard her say the word ‘joins’ in relation to my digestive tract; it makes me view my abdomen as a kitchen sink, and the surgeon as a plumber rearranging the pipes. There’s something disturbing about it. I don’t like it. Those new joins make digesting food difficult for a long time, as the area is tender.
The nurse told me that a Whipple procedure would probably take 2 – 3 months recovery to even be eating normally again. NanoKnife would be considerably less than this. When I asked the anaesthetist yesterday how long I’d have to wait to find out which procedure they had done after waking up, she told me to check the time on my phone once I’m awake and sitting up. “If it’s 18:00 or later – they’ve done a Whipple.” I guess I’ll be waking up and grabbing my phone straight away, like the modern-day millennial I am. The nurses will probably think I’m Twitter-mad or something.
I know that in reality, it does not matter, though. The surgeons don’t know what they are doing yet; it is all about what they see when they open me up and what is deemed possible. Either way, I’ll wake up and will be forced to deal with the consequences. I need to let go of wanting to understand both scenarios and how awful they may be for me in terms of recovery. What I need to focus on is what the dietician told me to do before the surgery – do more strength training in the gym, keep up the running, and EAT EAT EAT! Alongside this, I need to keep good dental hygiene; this is to try and prevent myself from getting any chest infections or bugs during or after treatment. Apparently, most of these bugs are transmitted from your mouth, so the better your oral health, the less likely you are to develop any of these issues.
I also learned a little more about Creon use. The nurse seemed to mostly praise my use of Creon but did tell me a few useful things. Mainly that you should only be taking Creon when there is food in your stomach; taking any before or after is pointless. You should take your first one just after starting to eat, and your last one just before the last few mouthfuls. Alongside this, if you suffer from acid reflux, you need to have an anti-acid prescribed to you to ensure that the capsules travel through your body without the enzymes being damaged. I suffer from acid reflux badly, so this is a key problem for me. I have Omeprazole prescribed to help with this issue, but my GP in Alsager, my home town, keep saying that it is not on a repeat prescription, despite being on my medication list whenever I pick up prescriptions from there… very unusual. The dietician said she would send them a letter and resolve this issue. Another reason to see the dietician as early as possible – they get shit done (or mine did, at least)!
So, another day and another meeting at MRI. Today’s was good. I left it feeling positive. It is good to learn new things about managing your cancer better and I felt empowered by the whole process. Any directorate to eat everything you want is good in my book – I’m going to go baking mad and not feel any guilt for any of it, not that I felt that much guilt anyway. I just didn’t eat too much of it myself before. That’s about to change…
Lastly, as I finished writing this post, I saw a headline on my phone stating that Dame Deborah James has died at the age of 40. She was truly defiant in the face of her diagnosis, raising millions of pounds for charity and raising awareness, with courage, wit and openness. The image of a beautiful woman fighting a deadly cancer is powerful in itself, disbanding the common idea that cancer sufferers are older, weaker and frailer than the rest of society. It surprises people to learn that I have stage 3 pancreatic cancer, and although I am charmed by these remarks, they demonstrate the fact that many expect your cancer to be visible; they expect you to be worn down by it. Of course, there comes a point where the cancer will get the better of you if you cannot get rid of it, and you will change physically, as anyone does when they near their end. Life is not infinite, though. We fight to stay with our families, friends and loved ones, but we grow ever more aware that the fight may be in vain. Deborah chose to use her position for good, channelling tremendous energy into that fight, as well as the one against her cancer. I’m sure both fed into the other, making her an even stronger person. She’s an inspiration to me as I write these blog posts, and knowing that she was originally a cancer blogger makes her even more inspiring.
Rest in peace, Deborah. Your suffering is over now; I hope that your loved ones take some comfort in that fact. I know I’d want mine to.