Plumbing problems (part I)
20 January 2010
Patients with terminal illnesses go through difficult times, and this piece reflects that. Some people may find the graphic nature of this entry distressing, particularly if they or somebody close to them has been affected by a serious illness.
The first symptom I had with my cancer was not being able to urinate properly. I was getting up in the night every two hours and it was taking me over half an hour to wee. I was exhausted. That was caused by pressure from my tumour.
Within a week of being diagnosed I was in hospital with kidney failure and was fitted with a catheter. In spite of feeling gruesomely nauseous I had my first good night’s sleep for months. It was wonderful.
Scan results showed that the reason for my kidney failure was that the tubes between my kidneys and bladder were being squashed. So they sent me down to x-ray and I had two holes punched through my back to drain my kidneys directly. This is called a nephrostomy. They attached tubes to drain each kidney and I ended up with a urine bag hanging over each side of my bed as well as the catheter bag. I was pretty well tethered to the bed.
Once my blood results were improved enough they wheeled me back down to X-ray and fitted tubes called stents inside the tubes from my kidneys to bladder, to stop them getting squished. The stents look like curly bits of strimmer wire except hollow and with holes along their length like a watering system hose.
A couple of days later, they removed my catheter and sent me home. I was still having problems urinating and would have liked to keep it, but they do usually remove a catheter before they send you home from hospital. I should probably have been a bit more assertive but both my doctors and myself expected things to improve because we were hoping the tumour and pressure would reduce from the radiation treatment I was booked in for.
A couple of months later after about thirty five doses of radiation, I had finished the course of radiation aimed at my pelvis, and was on the first day of a new course of radiation aimed at the smaller cancer spots in my abdomen. I was waiting for my transport home from Radiotherapy when I suddenly started vomiting. They put me to lie in a side room until I felt well enough to face the car journey, but I kept being sick. They attributed the nausea to my not being able to tolerate radiation on my abdomen (I suspect it was also due to the anti nausea pills that they had just started me on a course of as I react badly to many types of those).
Then after an hour or so I was suddenly soaked, urine was running down my legs uncontrollably. I was cold and shaking and still being sick. By this time they were phoning around the wards to find a bed to put me on. The urine flow didn’t stop, it was a slow constant seep. I was shivering and wet and cold.
Then it was time for the unit to close, someone waited with me while the rest of the unit was locked up. I hadn’t eaten since 9am and despite the nausea I was starving, but I am gluten intolerant, the kitchens were closed and there was nothing they could offer me to eat, all the out of hours snack food was sandwiches or biscuits. Eventually they found me a grapefruit flavoured protein drink, which was not pleasant but at least helped me feel a little less wobbly.
Eventually I got a bed in the Medical Assessment Unit, I was soaking, cold and very sore. I was already on quite high doses of painkillers as the radiation treatment had caused radiation burns on the mucous membranes between my legs. The area was already sore and cracked, and having it constantly bathed in the constant ooze of stinging urine, was sending me through the roof. The combination of the cancer retreating slightly from the wall of my bladder, the radiation damage, and my constant straining to be able to urinate had caused my bladder to split, and urine was leaking out through my vagina.
My gynaecologist and the radiotherapy doctor came to examine me. Sore as I was the internal examination was incredibly painful. This was when the gynaecologist found that the cancer was still there and did not seem to have responded to treatment.
I was told the next day that this was when I was first told my cancer was terminal. At the time I was in so much pain that I just did not hear or understand anything that was said to me. The next day the radiotherapy doctor came back to discuss it with me and had to explain it all over again.
I told my son when he came to visit me and we cried together. My Mom was still recovering from a hip replacement and couldn’t come to visit, so the dear friend who had given my son a lift to the hospital went with him to tell her.
I had a catheter fitted which eased the flow a little. I still leaked when I lay flat, so sleeping was a constant sleep, wake, change pads, plus the ward was busy, people being wheeled in and out all night, people screaming and shouting in pain. I was still vomiting, getting dehydrated and utterly exhausted. I was moved to a slightly quieter section, where I wept all night and wrote sad poetry.
I refused to take any more anti sickness pills and the nausea eased slightly.
I was put on a drip and moved again to the gynaecology ward, my son got a taxi over on his own and came to see me, he said hello…. I regained consciousness with curtains round, and the crash team, they had had to resuscitate me. My son was waiting just outside the curtain. They asked my fifteen year old son should they call him into the hospital if they thought I was dying in the night?
The taxi driver had complained that he had been too late phoning to postpone his taxi home and wanted paying, my friend who had just arrived sallied forth to do battle. (Taxi folk in general are wonderful and my son had several taxi rides to visit me that they refused to charge him for.)
I was moved to a side ward so that my friends could visit me out of hours without disturbing the ward. Scans showed that my kidney stents were blocked, they redid the nephrostomies. I took liquidised chalk to rebalance my electrolytes. This constipated me so much I fainted trying to go to the loo, when I did succeed in moving my bowels it was solid yellow chalk, you could have written on a blackboard with it. The stools crumbled into powder under the pressure of trying to pass them and I had to shake my booty to pour the powder out of my rear end.
They replaced my stents, nothing went through them, my kidneys continued to balloon, I was sick and nauseous, very dehydrated again. They replaced my stents again. Still no go. Nothing worked.
So it was decided that if I was going to die anyway, I might as well spend my last hours with my family.
I went home
Read other posts in Val’s diary here:
2 June 2010 – Hooray for corsets
3 March 2010 – It’s your funeral
24 February 2010 – So what is a stent?
10 February 2010 – A nice cup of tea
3 February 2010 The joys of negative thinking
26 January 2010 – My secret tattoos
20 January 2010 – Plumbing problems (part II)
6 January 2010 – Of vampires and vaccinations
29 December 2009 – Beauty and fashion
17 December 2009 – How the Doctor kept me going!
11 December 2009 – Why am I not depressed?
4 December 2009 – Why I didn’t want to attend Severn Hospice!
