"Side effects of a blood cancer"
About: Borders General Hospital / Clinical haematology Borders General Hospital Clinical haematology TD6 9BS
Posted by RichardA (as ),
This happened about 6 years ago when I was getting towards the end stages of a blood cancer and catching infections - particularly one that badly affected my head. It started with a middle ear infection and trips to the GP getting antibiotics that didn't work, eventually one seemed to.
I had side effects during this period - I went deaf on that side, lost the balance mechanism in my ear, and later found out I had a large clot in the exit sinuses of my brain.
Late on in this my tongue started to swell. and restrict my throat. I couldn't force food down, drinking even became difficult, I couldn't speak properly. My wife carted me to the BGH. I was admitted to a ward.
Although by then it was fully acknowledged I was short of immunity I was stuck an open ward bay in a bed next to a guy who spent his whole day hacking and coughing which was in its own right scary.
Firstly there seemed to be disbelief that I had a physical problem. The first specialist sent to me was a speech therapist who seemed to think I must have lost my ability to know words, not the mechanics to form them. Eventually they accepted that I had a swollen tongue that was causing my speech problem, however then I fell into the specialism trap. They couldn't decide whether I was an ENT or a Facial specialists problem. In fact (by now the throat was closing sufficiently that I was starting to struggle for breath) I was treated to the unsavoury spectacle of two specialists at the foot of my bed effectively arguing with each other "He's your problem".."No he's not he's your problem".."No he's not..."
Thankfully eventually someone had the common sense to load me in an ambulance and transfer me 50 miles up the road to St John's Livingston, where I was very quickly assessed and placed in a isolation room. Although they had some difficulty where the cause of my problem actually lay, the specialists worked as a team, and adopted a belt and braces approach treating me for both infection and thrush.
Over that year I had gone from someone who knew there was something wrong but was still able to compete in open water swim events, to one year later in an isolation room at the Beatson looking like I had come out of a concentration camp having a thankfully successful Stem cell transplant. During that year, although I thought I could die there was only one day when I thought I would.
My treatment elsewhere at St Johns, at the Beatson, even at the BGH in the Macmillan ward was exemplary. However that time at the BGH was shabby and disgraceful.