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Living in the Moment, managing unrelenting pain and going bald in one week!


Since my last blog post, I feel like I've been initiated into a new club that I had no idea existed and that has very tough entrance rules in order to be a member.


The only members of this elite club are of a different breed of human and have gone from understanding what a basic headache feels like to understanding what blinding, unrelenting bone pain feels like as it behaves like bolts of lightning through the marrow of every bone in the body.


Doctors and nurses who've never had cancer and anyone else who has never had cancer cannot even begin to imagine what this type of pain feels like and all those who respond with comments like, "I'm sorry" or "That must be hard for you" or "Have you tried this...." need to be taken into a room and slapped with a long white glove because if you've never been on the receiving end of excruciating pain that isn't relieved by typical painkillers then you're not allowed to comment.


Last Monday, shortly after publishing my last blog post, I spent another horrifying experience at Watford A&E. After telling the reception desk there that I was a chemo patient and had a fever and was experiencing intense throat pain and bone pain, I was then led to a hallway where I was told to stay away from other patients and had a seat in a busy hallway full of patients on gurneys some of which were puking and coughing and sneezing while I sat wedged between storage trolleys and paramedics who were on break and snacking on sandwiches and joking around. They acted as if I was just there for a routine appointment and several times I had jump up to get away from other patients who were crowding the hallway. It was very nerve-wracking especially as I'd been told by my oncologist team to avoid crowds and sick people for the obvious reason that I have a compromised immune system.


The nurse who tried to draw blood from my arm shortly afterwards failed to extract any blood but has caused nerve damage and lots of bruising all down my arm which I'm quite angry about and am very keen to pursue medical malpractice. For my 8 hours of waiting at Watford A&E, I had one doctor peer into my throat with his penlight and declare he couldn't see anything which baffled and frustrated me as my own observations of my own throat using my iPhone light showed a red, swollen throat. They didn't offer me any painkillers and another doctor came in shortly after to try to extract blood from me as her nurses had failed to do so. She was very nice, for which I'm grateful for as was the doctor before but the lack of awareness of how to treat a chemo patient in a hospital is astonishing.


Following that pointless experience in Watford, I then spent the rest of the week repeatedly calling the Royal Marsden Macmillan hotline to ask for remedies to ease the terrible pain in my throat as I was by midweek unable to eat things in liquid form and I was constantly hungry and coupled with not being able to sleep well due to the also unrelenting bone pain, I was by the end of the week ready to kill my doctors for letting me suffer with no real solutions.


Everything I'd researched as ways to better manage side effects, they shot down because apparently British doctors and nurses don't like to entertain other cancer research or remedies that work for other cancer patients because they're set in their ways and only have one way of doing something.


They keep telling me that I'm not a statistic but yet they treat me like one when I try to find ways to make my treatment easier. By the end of last week, I was demanding morphine from my oncologist as the pain had reached such levels in my body that I was unable to sit or lie down but could only pace the floor half bent double or stand which is great if you like to exercise but try doing that for a week without rest while feeling like you've been hit by a car and run over and then tell me how you'd feel.....hence my lack of patience for people who cannot relate giving me peppy responses to "stay positive" or "when you sleep you'll feel better" or "have you tried painkillers" or "eat this or that".....


On Friday last week, my oncologist finally responded with the suggestion to get an over the counter codeine painkiller and to buy artificial saliva sweets.....which helped a lot and made me even angrier with the doctors for not setting me up with these painkillers and sweets before I suffered an entire week of excruciating pain! If my throat didn't still hurt so much, I'd like to scream at my medical team for being such utter inhuman dickheads!