These notes wil be updated when I have sufficient energy, my right hand performs adequately and my memory isn't failing.
Just a fairly brief explanatory page giving all of my friends and aquaintances an idea of why I haven't been around much over the past year or three. For someone who could repair anything from a digital clock to a V12 E-type without a second thought, to someone who can only sit and think about it now, comes as a bit of a shock to the system. My FT-1000 lost transmit nearly a year ago and I don't know how to fix it, so now I am a listener only. Short term memory is about 3 seconds and my right hand is uncontrollable. Makes using a soldering iron a bit dodgy.
I think this has been building up for some time, since I lost about 2 stone in weight over the past couple of years and developed a couldn't be bothered attitude to anything.
For 30 odd years I have suffered with a UTI (Urinary Tract Infection) which would recur every 2 or 3 years. A simple 1 week on antibiotics would cure it for a further 2 or 3 years. Unfortunately over the years my body rejected the cheap and cheerful antibiotics and I had to use stronger ones. My latest infection, which started around February 2017, went through the whole process of 3 different strengths of antibiotic before finding one that actually worked. Each dose meant booking an appointment, attending apointment, providing a urine sample after treatment then going through it all again because it didn't work. So for each visit allow 4 to 5 weeks total.
We are now into May 2017 and the last test result showed a significant decrease in infection, but not cured.
My GP referred me to Good Hope hospital for further tests, who promptly moved the tests to Solihull Hospital.
On 15th June I attended Solihull Urology dept. where I was endoscopically examined by a Mr Sarmah who found an unidentified growth inside my bladder. He immediately referred me to Heartlands Urology dept. for surgical removal of said growth. My appointment was moved a couple of times and finally became 10th July at Heartlands Hospital at 7:30 AM. By 3:30pm I was getting a bit fed up and so were the surgeon and anaesthetist who were waiting to carry out the procedure. My patient notes were still at Solihull and the surgeon refused to continue without them.
My notes finally arrived around 4pm and we all went to the theatre. I awoke early the following morning, flat on my back in Ward 5 with two 1 Litre drips in my left arm and a Catheter installed. I was bullied into drinking 2 litres of water, which was extremely difficult. There seemed to be some lack of internal communication between what I drank and what I pee'd. There still is but nobody cares. My Catheter was removed the following day. During the night of 11th I was unable to pee and the stomach pain was becoming unbearable. Several of the night staff asked how I was feeling and when I said "I think I am dying" they just smiled and carried on regardless. Fortunately one of the youger staff members took one look at me and said "That caffeter is going straight back in". The relief was unbelievable. Nobody could explain the problem and the incident was promptly forgotten.
I was sent home the following day, complete with catheter, and told to return in 1 week. The Urology dept removed the catheter and monitored what I drank vs. what I pee'd. They said there was no point in putting the catheter back, since I was actually pee'ing, albeit much less than I was drinking, so go home. The Dr in charge of my "Discharge" said "If you have any problems just call 999". I mentioned that I thought I had had or was having a stroke because my speech was slurred, my right hand refused to function and my balance had gone. I was told "This is the Urology Dept.. Any other problems should be referred to "reception".
While on my back in Ward 5 of Heartlands, Good Hope wanted me to go for a Bronchoscopy. I told them, in no uncertain terms, to forget it and to move all future appointments to the 2nd week in August.
Around the second week in August an appointment was made by Good Hope to visit the cancer centre, but I had the runs on the morning in question and had to cancel. The following morning a new appointment was telephoned thro for that morning at the cancer centre. We phoned Good Hope senior nursing staff in the cancer centre, informing them of the chemotherapy appointment and they said "Call 999" since nobody seems to be taking any notice of their requests. They had repeatedly asked why nobody was taking my stroke symptoms seriously and they wanted to know why. A trip via Ambulance took me to Good Hope, around mid-day, where nobody had the slightest idea why I was there or what they were supposed to be doing, despite the ambulance crew spending half an hour discussing the problem with them on the telephone before taking me there. After being taken to the wrong bed, in the wrong dept. I was eventually taken to the ACU dept and around 4pm I spoke to a Dr. He hadn't the slightest idea why I was there or what he was supposed to do. So I explained, for about the third time, that I appeared to be showing signs of a stroke yet despite the senior nursing staff questioning why I was being setup for chemotherapy without any checks being done for my stroke type symptoms. The Dr agreed that chemotherapy could not be correctly setup without knowing what was happening in my brain. The following day I was scheduled for a CT scan at 3:30. It actually took place around 5pm, I was given a CT scan of my head and a few hours later I was informed that I had a brain tumour. They now want a second deeper scan, in order to more closely identify it. The Dr who gave me the good news said "There could be some ass kicking to be done now, because someone other than a senior nurse should have picked up on this much earlier."
So I still have the Bronchoscopy to look forward to, after they have started treating me 'ed with Steroids. Could end up with a super brain on Steroids but no body to match.
4:15pm 23rd August - Good Hope X-ray dept. Another MRI scan of me 'ed to help identify tumour. Theoretically in and out in 10 minutes but I'm not holding me breath.
Thanks to Teresa for the lift to Good Hope and I arrived at Main X-ray at 4:15. Wrong place. Should be in Main X-ray MRI dept. Nowhere near. Took a nurse several minutes to wheel me there. NHS 10 minutes turned out to be nearer 30, but overall still out b4 6pm. The MRI itself took about 20 minutes. While at Good Hope I had a telephone call at home from Snr Nurse Jane, at Good Hope, to tell me about the side effects I would probably experience from the Steroids I was taking. ???? Haven't been fully diagnosed yet, let alone given any Steroids. Talk about the Left hand not knowing what the Right hand is doing..... This brief note is fast becoming a novel. p.s. Lost another 3 kilos. I'll disappear altogether soon.
Another meeting due at Good Hope on Wednesday 30th attended by ALL interested parties. Maybe we will see some progress at last (or maybe not).
24th Aug Good Hope Snr nurses contacted my GP and arranged for Steroids to be delivered on 25th. Collected Friday afternoon and first dose taken at 4pm.
No noteiceable change so far, if anything going slowly downhill.
30th August visit from MacMillan nurse. What a difference! Things are suddenly happening in all directions. Serious changes to medication times and quantities and auto updates to prescriptions. Walking frame arriving tomorrow. NO more 30 quid a day taxi fares and assistance from reception to dept of destination WILL be provided. Next appointment 6th Sept with the top cancer expert who only takes on patients he is sure he can help. Can't believe the difference made by one person in one day. Watch this space!!!
To be continued:-