The Road to…
Run 40 in February – Fundraiser
Before I get into the blog post, I wanted to say the most sincere thank you for all of the donations on the Run 40 in Feb campaign. I am blown away by the response; it’s just been unbelievable in the best possible way. Some of the donations have indeed taken my breath away. I will find a way to milk this in these blog posts of course, so I won’t spend more words on it just yet, as we aren’t even in February yet. I couldn’t ignore the sensational response to the footnote in yesterday’s post about it. I can assure you that I will be smashing that 40-mile target, no matter what the chemotherapy and February scan. The link to donate is here for those who haven’t and are willing. All donations are welcome, and I love reading the notes that people leave. They are genuinely heartwarming and so lovely.
Prescriptions have been a staple part of my diet ever since the GP at A&E first detected that my liver functioning was very bad. She immediately gave me a strip of codeine and told me to take one every 4 hours. I sat in the waiting room, threw one of the pills back, and wondered whether I should be worried that my liver functioning was described as ‘very bad’. We all know the answer to that question now, but I was pretty sure it would just be some sort of infection that needed antibiotics at the time. Over the next few months, little did I know that I would be experiencing an avalanche of prescription drugs. This is a short tale about these prescriptions. At best, it may help others with cancer rationalise what they are taking. At worst, it is going to be an extended rant about needing to consume pills like they are grains of rice to survive.
I was only under Lewisham Hospital’s care for about a week but managed to accumulate a healthy stash of drugs in that time. It consisted of Anti-nausea (Ondansetron), Anti-spasm (Robaxin), Painkillers (Codeine Phosphate) and a pill to tackle acidity in the stomach (Omeprazole). Anti-nausea was issued as I was struggling to eat at the time due to being badly jaundiced, which was only discovered a few weeks later after being referred to King’s. The anti-spasm medication was to try and relieve pain associated with eating; I would get terrible bouts of abdominal pain during and after eating. It actually seemed to do an excellent job at the time, but I later discovered that it wasn’t necessary for me so long as I was taking Creon, which I’ll come onto later. Codeine was for the pain but I was frequently warned that it would give me constipation. Still, I regularly found myself using it to around the maximum dose every day during the diagnosis phase. This was the original Chill Pill Crew, but it was about to increase in number.
Upon being referred to King’s College London, I was introduced to Creon. I have spoken about this tablet in another post so fast forward to the next paragraph if you have read that and feel that you are somewhat an expert. Creon contains enzymes that break down fats in your stomach. If your pancreas is working as expected, it will produce enough of these enzymes. It does not when something is wrong with your pancreas, such as a ‘technically inoperable’ tumour. Creon helps supplement the naturally occurring enzymes and allows you to digest your meals properly. I now consume between 20 and 25 of these tablets a day. This particular specialist advised me to take 1 tablet with each meal, something that I later learnt will do absolutely nothing to help me digest in peace and without pain. For reference, I now will have 6 with a meal, and at least 2 with a packet of crisps.
To add to this questionable advice, he also refused to provide me with any more Codeine tablets as he was worried about constipation. I told him that this hadn’t been a serious problem for me, but he seemed convinced he knew my bowel movements better than I. Luckily, I had a pretty sharp supply of both Codeine Phosphate and another type of codeine called Dihydrocodeine from Lewisham. The specialist advised me to not take these and stick with paracetamol. I was already taking paracetamol to full dosage at this time alongside the codeine, and knew that alone it did little to stop the pain. This specialist also knew my pain levels better than I, though, so I conceded defeat. I knew I had a good enough supply for a while longer anyway.
It took another 3 weeks or so before I had more pills to add to my collection. The next wave came after my formal diagnosis and referral to The Christie for treatment. My specialist there asked me to bring in all medication that I had been taking for review. Individually, he asked me what the scenario was to take each pill and what dosage I would consume. This was a fantastic idea and allowed me to do some spring cleaning alongside an expert. He told me about needing my Creon intake to skyrocket and offered me a 12-hour slow-release opioid instead of codeine, which would not risk constipating me, whilst also giving me full coverage of pain. The original codeine that was administered to me needed to be taken every 4 hours, so the pain was constantly spiking throughout the day. This longer-lasting form of opioid made the pain much better throughout the day and, more importantly, night. I had been struggling to sleep because of pain. This is when I was also introduced to Oxycodone Oral Solution for the first time, a liquid that was prescribed to me to break through bouts of pain which kept me awake. I have to say, this is probably the most fantastic of all pain relief I have at my disposal at home. One cap of this stuff and I feel drowsy in minutes, and it really does help with the pain. It is liquid gold to the pain sufferer.
So now armed with better information and pills, I started to struggle less. Eating became easier, I was managing to sleep better at night and there was some logic to the pills that I needed to take. Before, I was guessing at what would help most the time, choosing to just take pain relief as much as the packet would allow me and then throwing in some anti-spasm and anti-nausea medication here and there when the sickness got really bad. It wasn’t a great strategy, so I felt better about achieving more structure. The final phase of prescriptions came as chemotherapy started.
The final major additions to the pill party were the standard-issue chemotherapy package. Every cycle the following prescriptions are issued: Anti-Diarrhoea, Anti-Sickness, Steroids, Difflam mouthwash and Nivestim injections. I believe that the anti-diarrhoea and anti-sickness are the same ones previously issued to me and their purpose is pretty self-explanatory. The steroids are issued on treatment days and are taken for the first 3 days of the treatment cycle. I believe that they help give you energy for the first few days of chemotherapy to ensure that you are up and moving around. The Difflam mouthwash is a special mouthwash for mouth sores; I was originally using Corsodyl, but the nurse informed me that the burning I was experiencing from this was due to how aggressive the mouthwash is, not because it was improving the situation. Which was a shame as I was sure the burning I was experiencing was me killing the sores. Finally, the Nivestim injections are to force your bones to create more white blood cells. This boosts your immune system and lowers the risk of an infection making you seriously ill, something which can happen pretty quickly whilst on chemotherapy.
I have since picked up 2 more prescriptions, but I haven’t used either. In cycle 3, I felt pretty strange one night as I lay in bed. I couldn’t figure out what was wrong with me. I fell asleep fairly quickly but woke up again an hour later at about 00:30. As soon as I woke, I felt extremely thirsty, but drinking water wouldn’t seem to satiate the feeling. I then realised that my legs felt like they were painful; similarly to the need to drink, I would stretch them, but the sensation wouldn’t stop. This made me panic, and I started doing yoga stretches on the bed between walking around the room and downing water. Anna was half asleep in bed next to me, trying her best to be supportive but also very discombobulated by the whole situation. I eventually took some of my reliable liquid gold pain liquid and fell asleep with my little Lucy puppy in my arms. The whole thing was very worrying at the time.
The first person I spoke to about this episode was my GP at my local surgery. She prescribed me Diazepam and an inhaler – the Diazepam as an anti-anxiety medication and the inhaler as I had also spoken about a sensation I was getting around my heart, where breathing in occasionally causes a build-up of pain in my chest. She thought this may be due to inflammation around my lungs. In stark contrast to this, when I spoke to the oncologist about the episode, he told me to drink electrolyte drinks, saying I was probably running low due to side-effects of the chemo. I haven’t indulged in the Diazepam or inhaler yet, but they are now part of my stash.
I have tried to cut down the number of drugs I am using now. I was still taking the slow-release opioids until 2 weeks ago. After 3 months of taking them, I decided I had probably been on them too long. One of the nurses at Pancreatic Cancer UK advised me to speak to the oncologist about this as I may have to ween myself off them. I thought I’d try my luck and just stop, and it seemed to go Ok. What is a bit frustrating is that I am starting to get pancreatic pain coming in at night again, so I think they were actually doing me some good. This should be a good thing to know that the pills are doing what they are assigned to do, but it’s frustrating as I managed to convince myself that I had no pain anymore and didn’t need any drugs for about a week. Wrong, Dan. Very wrong.
For now, I regularly take Creon, Omeprazole and the standard-issue chemotherapy drugs as and when I need them. It feels much more manageable this way, and I understand what they do for my benefit. Early on, I felt like I was taking so many tablets for so many things that I didn’t really understand what was helping what symptoms. The Christie helped me rationalise what I needed to put in my body and why, but I felt like I was just accumulating more prescriptions until then. Nowadays it is just about trying to stay afloat during the chemotherapy cycles, which is actually more manageable. The cycles are somewhat predictable at least, whereas during the diagnosis phase, I was fighting against a lot of complex symptoms which both myself and the doctors weren’t fully prepared on how to tackle them effectively.