I'm not entirely sure how much of this blog will get finished tonight and to what level of detail or sense it will go. To be honest, I had a couple of shots of morphine on the way out of the hospital as I had some back pain as normal and I pretty much glided down the stairs and home. I am now sitting on the couch coming around from the day's events but am still in a semi lucid place, under a blanket and clutching a hot water bottle. It may be all too nice an experience and at some point I may just decide to curl up and sleep. My intention however was always to try and give my friends and family a little more insight to my experiences hoping that in turn this helps them better understand what is going on whilst at the same time leave a little education trail on the Internet for those who have to unfortunately follow my footsteps. Keeping up this ambition is kinda keeping me going at the minute as well as giving me something to do so I will plough on for the time being.
Last night was a pretty tough night. After dinner I am finding that there is pain which manifests in my back and gets worse as the evening goes by. It's not agonising pain, just discomfort and when I go to bed, if it's still there, it can keep me awake for hours. Last night was one of the episodes. This combined with the thoughts of the treatment today were probably enough to keep me alert. I returned to my mate Ajahn and listened to a quick mediation youtube - I zonked out in a few minutes but woke up again a few minutes later because of the pain. I went downstairs and had 4 shots of Oramorph (about 10ml), went back to bed and flaked out. I woke again around 2 or something. Carol woke up as well and went downstairs and renewed the hot water bottle. I went downstairs again and took more morphine and slept until 6:30am or so. I got a lot of sleep but it sometimes feels that you are always fighting to get there and as my buddy Ajahn says, if you need to fight for control of your mind, your going to have a pretty upset mind and an upset mind isn't really something that you want to have. I got up at 7am, had breakfast, pill and vitamin regime and ran a bath, listening to something about the middle way.
We got to Ross Hall at 9:30am, bypassed reception and went straight to the Oncology ward. Jenifer our nurse for the day was a little off guard as we should have checked into the reception before climbing up to the ward but she was very nice and took us to our room 104. The room was nice, a bed, two chairs, a bathroom and a gorgeous view of the park behind where there was a constant stream of people walking dogs. After some tea, Jenifer came along to fit my cannula. Those who know me or who have read earlier accounts of the blog will understand that I don't really do hospitals well, I don't like needles and have the propensity to faint when getting probed with sharp stuff. After inspecting the veins in my left hand, Jenifer's eyes lit up as she had found the perfect 'route in' and while she prepared to jab me I turned towards the windows over the park and watched a dog pooping whilst it's owner stood by waiting to pick up the poop with a poop bag. Lot's of poop there I know but strangely enough, it took my mind of the engineering going on over at my left hand where Jenifer was now in the process of taping a tube to my very hairy wrist. I knew that was gonna hurt later however I was surprised about how little notice I made of the actually process.
To get the ball rolling I had to take an anti sickness pill Apprepitant 80mg then a quick run through of an anti sickness drug then a saline solution, this was fine no issue. I had taken a saline drip at Hairmyres a few weeks ago and remember my teeth chattering as the stuff coursed through my body however this was fine this time. Jenifer then left for a while and eventually came back with a huge syringe filled with the red Epirubicin. Jenifer mentioned that this can be hard on your veins and that it will turn my urine a different colour. It took about 15 minutes to inject by Jenifer who sat beside and listened to me prattle on about nothing specific. After the red rocket fuel I then had another saline flush for 10 minutes or so and as I relaxed / meditated for a while I got a phone call from Claudia. When my cousins were over on xmas day, John suggested that I may want to speak to Claudia who he met via his partner Marika. Claudia had been diagnosed with inoperable Oesophageal cancer 11 years ago and who was alive and kicking today. I had sent her an email a few minutes earlier and suggested that whatsapp may be a good way to communicate in future. 10 minutes later she called me and I got lost in a conversation with her for about 20 minutes which was lovely, she is a very nice lady who is currently in the mountains in Switzerland and gave me hope and courage to stick in there. She did however at one point say that the chemo is a horse treatment and that it will either kill you or the cancer .... as I watched the chemo trickle into my body. My mind was taken away from the fact the during the conversation, Jenifer had came by and swapped some bags and I was now onto the second course of rocket fuel Oxilaplatin which is given with glucose over a 2 hour period fed through the pump which beeped every now and again when it needed a nurse to attend. Claudia continued and we turned our conversation to non cancer related things, we spoke about the Swiss mountains, the snow and her respect and admiration for all things Scottish especially Scottish people with which she held in very high regard. As we laughed a few times, Dr Yousef came into the room and I ended the call abruptly (sorry Claudia). I never expected to see him today but he was a welcome site he asked how things were. Before I really got a chance to answer, Carol jumped in as she had done earlier with the pain thing. I had just been a typical male suffering to this point but the reality is that you don't need to. Jenifer had mentioned earlier on that Macmillan would be a good point of reference for pain control and that she would attempt to refer me. Dr Yousef on the other hand suggested Morphine Sulphate may be an option and he contemplated for a few a moments before measuring my tumours under the arms with a bit of paper and then sounding my chest and back and doing the stethoscope thing again. He then got me to sign a consent form and in the midst of the activity the lunch came and it just felt that the last 30 minutes were a construction site geared around me lying in bed getting stuff done. Not complaining just felt a bit like 'wow this is action now'.
Dr Yousef left and we were now on the final straight, 2 hours with a bag of platinum based stuff being dripped into my body. Technically all of these drugs are poisons but if you think you are getting a shot of platinum then you feel a bit special, a bit like drinking the gold flakes in a bottle of Schnapps. Carol was by my side all day which was a great help. There were moments where we laughed and joked and there were other moments where she was just worried about me and I could tell she was quite nervous. She remained solid throughout the day and I was very grateful she was there. It was about this time that I became incredibly hungry and devoured the mushroom soup, a bag of crisps some bread and a donut that Carol had sneaked in. I later found out that this was because one of the drip rounds was a steroid and was having a positive effect on me. I tried to chill out, listen to Ajahn, read the news but the last two hours were a bit of a slog. My left arm was becoming a little sore and things just started to become uncomfortable. At one point I decided to go for a pee and I unplugged the pump and dragged it with me to the bathroom. At this point I remembered Jenifer saying that I may get some strange results and she was correct, I had pink pee. I wasn't freaked out by it just marvelling in the science or biology or whatever.
We got through the last 2 hours with the very final 10 minutes of the final treatment being a little uncomfortable but nothing drastic. We then got swapped onto another flush and this ran for 10 minutes or so and eventually came to the end of the cycle when the machine started to beep. It beeped for what seemed an eternity. By this point my left arm was tingling and touching the nerves became a little sore. Jenifer had mentioned that this would happen and that some heat or a gentle massage would help. I just wanted the thing out of my arm at that point and as I had done for most of the day I began to sweat heavily again. I had only taken a T shirt to change into and although this was inspired at the time, I should have taken a complete change of clothes since I was now saturated. I think this was more a stress thing than anything else as I just wanted to get the cannula out of my arm by this point. Eventually Kathleen came in as Jenifer was busy elsewhere. She started to dismantle me and I prepared for the ripping of the hair. I can't lie, the hair ripping was painful as was the pressure Kathleen put on my wrist to stop it bleeding. This time I could not be afforded the luxury of watching dogs poop while she worked as she asked me to keep pressure on the wound whilst she wrestled with my hairy arm and tape situation. Eventually I was free of the cannula and I started to think about going home. The arm was tingly however and when a failed attempt to tie shoe laces came about, I decided that I would stay in the room for a little longer and had a cup of tea whilst we awaited the pharmacist.
Ify the pharmacist eventually arrived with a bag of drugs. The important one is Xeloda which I thought I had to take for three weeks however he had only brought along enough for the next 14 days. We questioned the logic and he left to speak to Dr Yousef who confirmed that we needed three weeks supply. Ify returned and continued the pharma chat. The Xeloda is in pill form which make up 1150mg dose, twice a day which means big pills, 6 of, twice daily. Other drugs included were domperidone which sounds a bit like champagne and is yet another anti sickness drug. We also had a steroid dexamethasone which gets taken for 3 days and yet another anti sickness drug which I can take as and when I feel sick. Feeling sick seems to be a bit of a thing with chemo so I understand. But so is diarrhoea and constipation. As I had been told by Linda the senior nurse who visited me during the day the plan was that some drugs make you move, some make you stick and the hope was we filled me full of both combinations to have a happy movement. I laughed at the analogy and came to the conclusion that beyond all the science you still need to wing it and react to what your body is telling you at the time. Ify then made me sign something as Dr Yousef had also included some other pills for the pain which he mentioned were also high on the 'it'll bung you up list'. We took the drugs and I started to get my stuff together. I have to admit that it was a long day and although Ross Hall is lovely and the treatment of staff was great, it isn't something I would recommend. By this point my other extremities were tingling a bit and I was feeling slightly lousy as the pain in my back had returned. I decided to take three shots of morphine and immediately told Carol that I wasn't driving. I floated out of the hospital and into the car. The car journey home was pretty long and I kept a plastic bag by my feet in case, well, you know. It never happened, we got home, I went straight for the joggers, a blanket, a hot water bottle and my blog and am feeling 100% at this point as this musing has obviously taken my away from the day and into a world where I think I am providing some good. In summary, it wasn't that bad but I'll see how the next couple of days treat me.
