The phrase of the issue is 'stoic and sod it'. Dad, and Mum, are facing the illness with a positive attitude, and that being angry or upset doesn't help in any way.
Below is a direct copy of Dad's mini blog on the status
24 Jan 2017
Journal of a Delighted (so far) NHS patient.
Having attended various departments of the Queen Alexandra (QA) hospital and being very impressed at the speed of investigation, gathering of information, interpreting, diagnosing and talking with Doctors and Surgeons to determine a course of action to try and cure my ailment, (Bladder Cancer) I am faced with the ultimate very possibly fatal diagnosis. What on earth do I do now?
I have spent so much time in the QA building that I start to notice eventually that The Macmillan Cancer Charity has a Support Centre next to the Oncology and Radiotherapy Department, a place of peace and tranquillity away from the hustle and bustle of the hospital. They provide a quiet lounge with tea or coffee on tap and also lots of information and leaflets, guidance and help. They also run a seminar called De-mystifying Cancer which tells patients and their wives/helpers what is happening to them, how the treatment often works, how to help oneself, diet and exercise. During the presentation we were able to question the presenters (Medical staff from the departments) with anything we wanted, but one question certainly surprised me with the response. How many patients do you have coming through the department? The reply was approximately 2000 a month. We did not ask for any clarification or breakdown of numbers I was so amazed. This, in general terms, performs so well to serve the local population, but unfortunately it gets a lot of bad press, when it is good press the press are never there.
It all started on Thursday 11 Jan when I had to attend Day Care department (QA) to have some additional plumbing (PICC) installed in my right arm. I chose not to watch as I am allergic to pain and distress. They give me a list of possible side effects and a 24 hour phone number and send me on my way. 12 hours later my arm feels uncomfortable so I remove my jersey to find that my shirt sleeve is very red, I remove the shirt and the PICC is all red with blood. Being a Toughie (toffee) we instantly panic, as I am obviously bleeding to death and call the number. A very nice voice tells me to attend at the Oncology Ward at QA NOW so off we go at 21.00 hours to a very quiet hospital (no parking problems) to receive further attention which cured the immediate problem.
Monday 15 Jan I have to present myself at the Oncology and Radiotherapy Department to start treatment proper and attend Day Care to have my first dose of Chemo. A very nice ethnic gentleman starts on me by shoving a huge hypodermic full of gunge into my additional plumbing as this is what it is installed for. He then connects this (Pump, a huge lump, almost the size of two cricket balls) to my arm and gives me the lump and says see you next time. All I can do is put it inside my shirt and hope for the best. While I am sat in the Day Care my fellow patients look so disconsolate as they receive their doses of Chemo, often taking hours, such a depressing place, I hope that I do not have to spend too much time in here.
Next it is on to the Radiotherapy department to get zapped. I am on two research programmes (RAIDER and RAPPER) so I seem to get very close monitoring and watching, lots of reports and questions and this part of the programme is to last until the last day of February. I have to attend to be zapped five days a week for six and a half weeks, (I get Saturday and Sunday off for good attendance). The next problem for this organisation is the reliability of their machinery (Zappers Quantity 4) which are being used so much that we do get the odd breakdown and this puts the busy programme into slight dis-array. When this happens my personal guardian angel (Nikki) goes into the planning computer mode and re-organises my life (sorry schedule) and gives me another print out. I must admit that I only amend my diary a few days in advance as the unknowns that Nikki has to juggle with are many and perplexing.
Now that I am fully into this Chemo business I have to carry a card with me to show to any medical professional if I should collapse or keel over what their response should be. it says that "I am a patient at risk of NEUTROPENIC SEPSIS, do not wait for blood results". it sounds quite alarming really, but so far the Chemo has not caused me any problems, fingers crossed.
Day 1, started Chemo and had my first Zap in Radiology, no side effects. Had talk with Nikki dealing with paperwork for RAPPER otherwise a non eventful day.
Day 2, This PICC line causes a small problem that I have to go to the Day Care department for any Blood Tests that may be necessary as it needs special attention to maintain its cleanliness and free from infection. Had Blood Test for RAPPER, this is needed I think every week.
Day 3, due a Zap at 12.30 but a machine had gone down so we were running 45 minutes late. This Zapper machine, I am told is about £1 million pounds worth, I know that it looks like something out of Star wars and it has to be so precise. I have three small tattoo's around my pelvis area, put there by the medical staff so that they can position me in exactly the same position day after day. The numbers that they have to achieve for me with pushing and shoving (they do have cold hands on my exposed part of skin) are 87.5 which I think is a distance from a datum. Another Laser shines down from the ceiling onto my chest which centres my torso, all very technical. The solid bed that I am lying on has no upholstery, there is a rest to position my feet and a rest is placed below my knees, (looks like an instrument of torture) It must be dangerous as the lights go dim and a cry goes up of Bye, be back soon and I am then on my own to watch the zapper as it travels around me one way and then after about three minutes it comes back. The lights go back on and I am able to escape for another day, walking out past all the other people waiting to be dealt with, or so I thought. I was diverted into a small room where I had a session with one of my Doctors, who asked a lot questions about myself which sounds rather as if I have failed as I had no side effects to report, then I escaped.
Day 4 due a zap at 14.10, one machine down so running late. I had spotted a clash of appointments dealing with PICC flushes and Blood samples so I made a spreadsheet to give to Nikki.
Day 5 due a zap at 13.15, everything running on time, wonderful. Met with Nikki and she had resolved everything and gave me a new itinery. It removes so much of the stress and confusion from me and being able to talk the same language as the reception people she appears to achieve so much.
Day 6 this was supposed to be a day off but I had to go to Ward 5 to have The Pump removed. On gaining entrance to Ward 7 (The security is quite tight) I was eventually put into a small room on Ward 5 where they deal with this procedure, to await Fran. This beaming smile entered the room saying that she had just finished preparing the Pump Removal trolley so my arrival was fortuitous, lets get on with it. We did not run into any of the other patients so we did not get too depressed. I had been looking forward to this as having this thing hanging around my neck for 5 days was a menace. Dear wife Jenny, had modified one of her scarves to provide a pouch that I tied around my neck and put the pump into it, it looked as if I was wearing a Cravat which looked a little odd when I am dressed in pyjama's. By day 4 it had halved in size so that I could carry it in my shirt pocket, much more helpful. This was the first time that I used the car (not the bus) to attend QA, the car park was half empty so a cunning plan was devised to help with the stress level, we were able to divert into a local hostelry on the way home for lunch which helped us to unwind.
Day 7 Yippee my first day off, did nothing. I really am counting my blessings as I had heard some horrifying stories on Chemo side effects, even the staff, before you start, tell you constantly, of all the nasty things that can befall one. A lady patient who I got talking to in Macmillan's lounge told me that the only side effect she had was a loss of her hair, a small price to pay for being fixed, so chin up, an awful lot of people get away with Chemo but you have to be told all the nasty's. The only apparent effect of the Chemo is that my skin problem, which I have had for 50 years looks a lot better
Keep fit and well
rgds
Dave Gash
