This started as quite a cheery blog, tried to put a light hearted slant on things, a few jokes, quips, more of what you might expect from me. By Saturday morning I’m reduced to a complete wreck. Some of you will be sitting back thinking ‘we told you so…..’ not in an unkind way, but in an ‘I’ve been through it kind of way, but couldn’t really put into words just how awful it really is.’ I’ll try and document the events that led up to me feeling this way.
Thursday evening was not the ideal way to spend the night before chemotherapy. Relaxed, comfortable – anything but. Thursday I’d been back at The Christie to have a central line fitted, and see doctors for the last time before chemo starts. The local anaesthetic that was as injected into about eight different places between my neck and chest was wearing off. It felt like someone had cut a hole in my neck and shoved a tube down it…oh they had! By Thursday evening it was hurting, like having a pulled muscle in your neck, you can’t move your head without it hurting. The procedure of having a line fitted is not particularly painful, but it is very uncomfortable, and strange to have someone pushing and tugging tubes into your neck, through your heart and back out again in your chest. You can’t really feel anything except the tugging and pushing, even the nurse admitted that it can look quite brutal. I decided to load myself up with OxyNorm and try and get some sleep before Friday. During the pre chemo health check on Thursday the doctor had a good prod around my liver. It was painful at the time and I told her so, but that just seemed to encourage her to prod about bit more. It started to get quite painful Thursday evening, so it wasn’t looking good for a nights sleep.
I arrived bright and early for my appointment Friday, shown to my room, en-suite, TV and wonderful electronic hospital bed that made it far too comfortable. Some chemotherapy drugs can only be made up on the day, so it is inevitable that there would be some waiting around, thankfully, I only had to wait an hour before my infusions could begin. As always, the staff at The Chrisite always make you feel as though you are the only patient they are treating, and everyone I encountered on the day were just so kind and considerate. The main chemo nurse who was administering my treatment must have gone through the same words, warnings and rituals thousands of times before, but today she made it sound as though it really was just for me. Some of the drugs were administered over 2 hours, interspersed with 5 – 15 minute bags of something else, later identified as steroids, anticoagulants, anti sickness, anti everything. All I had to do was lay back and let it get in there. Perhaps I was too comfortable as I slept for almost the entire day. I awoke occasionally as the infusions were changed, only because the nurses was asking me if I was ok, but other than that I seemed to be asleep for most of the day. By four o’clock the only thing left to do was to fit the pump that enable me to have the rest of my chemo at home delivering the final dose over the next 46 hours. Don‘t ask me why 46 hours and why not 48, I did ask and nobody could tell me. They couldn’t tell me how the pump works either. No batteries, electronics. So that was it, off home to be left alone until the district nurse calls on Sunday afternoon, to remove the pump and clean all my lines out.
By the time I got home, I was just relieved to there. The first thing I noticed when I walked in, the Guinness glasses had been moved. I know that because I had just bought them. It wasn’t so much the glasses I was concerned about, it is the little Guinness template that you drop into the creamy head. I was going to take a photo to show you, but alcohol really wasn’t on my mind, except for the little plastic thingy. As usual, I saw them in a charity shop, 3 different glasses, still boxed, only cost me 6 quid I think. I only wanted the one with the template, but I couldn’t leave the other two on the shelf alone. Mad, I know, but that’s how I operate. I was trying not to get angry, where the hell has she put it? I checked the bins, cupboards, floor, everywhere. I sat down with a cup of coffee, half a packet of biscuits and relaxed, with the idea of Guinness far gone, I decided on orange squash, drink plenty of replacement fluids for the diarrhoea…What diarrhoea? I reached for the Hi_juice bottle, a pint glass, and turned the cold tap on to run cold. After a few seconds I put my hand under the gushing tap to test the temperature, and shouted in shock and pain. It was just as though I received a huge electric shock, burning in the extreme and very painful pins and needles. Peripheral neuropathy – flagged up Number 1 on most peoples lists of common side effects, and one that had completely slipped my mind as I put my hand under the tap. Oxaliplatin increases the sensitivity of the nerve endings and any exposure to cold temperatures can trigger these side effects. I always thought that when other patients who had undergone this treatment spoke of wearing gloves to go to the fridge that it seemed a bit comical – not so funny now. I can see a lot of water being wasted from now as I ensure that water is piping hot before my hands get any where near it. Oh, the shamrock thingy did turn up, on the dining table.
What had seemed like a pretty tranquil day in the beginning was now going tits up fairly rapidly. I was feeling sick (common side effect No. 2) , tired (No. 3) aching all over (4) hot flushes (5) and so on… I opted for bed to watch the England game, saw them go one nil up before turning the TV off, unusually not because of England’s performance, but I was rapidly feeling worse and worse and did not even have the strength to angle my head in the direction of the TV. Did I say what Diarrhoea earlier? At 01.30am I found out what diarrhoea. I’m sorry for bringing this up, but you must have been expecting it at some time from the heading alone. Bag or no bag, it’s still pretty devastating. The next few hours were spent trying to control the flow of fluids out of my body. I gave up changing bags, I couldn’t keep up, in the end I just let it flow as they say. I’m sure those of you who have a colostomy/ileostomy know what I mean. In between I was trying to clean up, change bed clothes and lighting incense candles around the house. I was also learning what a hindrance the infusion pump is. I lost count of the many times I left it on the radiator/sink/cupboard/bed, only to walk away and have it jerk across the room as it followed behind me and tugged on the tube into my chest. Eventually, after about two hours it seemed to be slowing down, there couldn’t have been anything left in my body to come out. I eventually found out the England score at 3.30am as I slumped on the bed, turned the radio on and drifted off to sleep completely exhausted.
I awoke six hours later, convinced I was in the same position I had drifted off to sleep in. Mobile phone was still in my hand, pump bottle resting on the pillow beside me (I remembered that before I sat up and yanked it again), remote control in other hand. I was grateful for the sleep but still physically exhausted. The bathroom and bedroom looked like a hurricane had hit as I must have struggled to keep on top of things last night. The bath was full of washing, the floor was strewn with paraphernalia relating to my stoma, and almost every light was on in the house as I stumbled from room to room (there aren’t many!). I remembered the gloves before I went to the fridge to get milk for my Rice Krispies, then realised that cold milk is not a good idea either. Peripheral neuropathy extends to the nerves in your throat, electric shocks in your throat first thing in the morning is not nice. Well it’s probably not nice any time of the day, but morning is extra not nice. The only other time I can recall experiencing anything else like this is after taking ecstasy, at least that comes with a nice warm feeling! Even a walk to the corner shop has to be thought about, I went for a loaf of bread, not realising that there was a fine mist of rain, a fine mist of cold moisture on my skin, fine pins and needles over my exposed hands and face. Must remember, gloves, gloves, gloves…..and now scarf for my face. Jesus this is June, what am I going to look like ? Who cares.
Saturday started pretty depressingly, I was feeling depressed, it’s hard to admit that to yourself. I had just about coped through the night, just about. The thought of what I was going to do if it got worse is depressing in itself. I felt very alone last night, and this morning, but at the same time I’m so glad I didn’t have to share it with anyone. I didn’t for one moment think that these side effects would have been so immediate, or severe. I’ve still got another 30 or so hours of this 5-FU (Fluorouracil) infusion to go. I was sent home with an array of oral remdies for various side effects, the number of tablets to take each day is mounting again. I have to continue with the steroids for another couple of days (Dexamethazone), take before 6pm, sounds like I’m going to be buzzing all night. And the side effects of these….. I thought these were supposed to be countering the side effects of the chemo! I don’t know what I expected, I know that even reading this won’t really get across just how shit I feel at the moment. Serious doubts in my mind, a minimum of another 5 of these treatments to go, quite likely many more in the future. There were tears, I was very low. The postman arrived, I could hear him kicking the (new) gate. Virgin Media, no I don’t want your horrible out of date blackberry. Bank statement, gosh did I really spend that much there? And a Fathers day card from Lew J . Alana had given me hers when I saw her, but un-opened until today. There were tears, many of them, none more so as I type this, and a reminder as to why I can do this, and I will do this.