The Best and The Worst of The NHS

A little under a week after my treatment, on Tuesday night I got a pain in my right hand side. Clearly to me this meant that my liver mets were playing up. I was due to go to France that Friday morning, so I phoned the MacMillan people and asked what I should do as the pain wasn't getting any better and I didn't really want to spend my French holiday sampling the delights of the French health care system.

I had two options, go to A&E or go to the drop in breast clinic on Thursday morning. I opted for the former as Thursday seemed a little too close to departure and I wasn't sure that I could survive another day of pain.

I arrived at about 5.40pm on Wednesday. It was quite busy but saying the magic words "incurable cancer" had the desired effect and I was called in within a few minutes. I explained everything about my cancer and the pain. I had my blood pressure taken and a cannula fitted from which they took many, many blood samples. I was taken to a room and hopped up on the gurney. As a matter of course I was given antibiotics, standard protocol for cancer patients in A&E.

A very lovely A&E doctor came and saw me, took notes and generally assessed me. She then decided that a surgical consult was in order in case it was something like gallstones. I did explain that I had had a full CT scan within the last 3 weeks, but this didn't seem to make any difference. I was sent of for a chest and abdomen X-ray, which revealed nothing unusual. Once the surgical chap came he decided that an ultrasound was in order. He would order one for the following morning. Ultrasound is not 24/7, they work normal office hours. The time by now is past mid-night. I have done an awful lot of waiting around. I next have to wait for the medical doctor to come and see me. There are 4 of them on duty, but I keep being bumped down the queue by more urgent cases, which is fair enough. In retrospect what I should have done is discharged myself at about 2am, but I didn't. Trying to get information was nigh on impossible, No-one knew what was happening. The ultrasound couldn't be booked until the next morning. The ultrasound had been booked for 8am. All very frustrating and confusing.

I should point out at this juncture that every individual was absolutely lovely and I cannot fault the care they gave me.

By 6am I had had more than enough and decided that I was going to discharge myself, go home, have a quick kip and return for my 8am ultrasound. Therein lies the problem, in order to do this you need to see a medical doctor, which again takes time. They were reluctant to let me go as they wanted me to stay put until 8am. I did escape, having signed a disclaimer.

I returned at 8am to the surgical ward and sit and wait, once again my blood pressure was taken, which as you can probably imagine, was a little on the high side. A nurse took pity on me and found me a bed so I could lie down and have a snooze.

I am then told that I cannot have a scan until the head surgeon chap has done rounds. It is now well past 10am. He arrives I re-tell my story again, mentioning the recent CT scan. His pronouncement was a scan was unnecessary and it was just progression of disease and I could go home!

As it happens the MacMillan nurse phoned and said that it was probably an inflammation of my liver capsule which would almost certainly be helped by taking some steroid. So I popped down to the drop in breast clinic, collect the prescription and go on my merry way.

My issue with this whole incident is that I was effectively bed blocking for most of the night. The medical people, with the exception of the head surgeon, seem to hear neighing, smell horse manure and assume it's a zebra. The bureaucracy is beyond belief and most of the time the right hand does not know what the left hand is doing.

As I have said I cannot fault the individual staff who were all unfailingly professional, patient and caring.

As a side note for Jeremy Hunt, there is very little point in making the junior doctors do 24/7 (which as far as I can see they do already), if the rest of the hospital is working office hours.

Bad News, Bad News, Good News, Good News

Let me deal with the bad news first. The cancer has spread. The little "blips" that could be seen on my lungs last time turn out not to be caused by radiotherapy, but cancer. Strangely although I am a little breathless I am not any more breathless than usual. The tumours are also in my liver.

Good news the bone tumours are stable, but this is to be expected because bone mets are slow to progress. Once again my oncologist the master of understatement said this was disappointing. I have to admit that I was expecting the worst so it wasn't too much of a shock. Although my oncologist seems to think that I will fall to bits once the news has sunk in. It has and I haven't. Telling my children was hard but they fortunately have the same fatalistic attitude of their parents. Shit happens, deal with it. As I have pointed out on numerous occasions hundreds of people leave their homes every morning never to return.

More good news I have once again won the postcode lottery. I will be treated with Kadcyla. This is a combination of a monoclonal and chemotherapy drug. Basically the monoclonal attacks the cancer cell receptors and effectively injects the chemotherapy into the drug. This means that the chemotherapy side effects are less severe so I am hopeful that apart from the obligatory fatigue and possible nausea I won't lose my hair, although I'm not counting my chickens or my hair yet.

Epiphany, Alarm Clocks and Unpredictability

For a change I thought I'd start at the end.

I had my treatment a little under a fortnight ago. Two days afterwards I was at a BBQ and I was on top form, not too achy, good appetite and not fatigued. It's amazing how pleased people were to see me, which was very nice. Two days later I felt as though I had been hit by a freight train and it has taken over a week to start to feel even vaguely normal again. The treatment before this one saw me on the 5th day in bed or on the loo. I'll leave the details to your imagination. The following day I was fine.

When I was on chemotherapy there was a total predictability about what state I would be in on any particular day. Day 3 in bed with the world's most painful knees. Days 4 to 11 general pain and achiness that gradually abated. Days 12 to 21 almost normal. This time round there is no such certainty which does make planning rather difficult. I hope that there will be some stability and certainty sooner rather than later.

My epiphany is related to my alarm clock. We have all woken up in the dark before our alarm clock has gone off. At this point we have a choice to either turn over and go back to sleep in the blissful ignorance of not knowing exactly how long it is until the dreaded alarm goes off, which in my opinion makes getting back to sleep easier. Or we can look at the clock and see exactly how long we have until the dreaded alarm clock goes off which then makes it a race to get to sleep as quickly as possible. It this scenario ignorance is definitely bliss. What has this to do with my current condition I hear you ask. Well, we're all going to die and most of us don't know when or how. Those of you who have not been told that they have incurable cancer have woken up before the alarm and not looked to see what time it is. I have seen the time and am desperately trying to get back to sleep before the alarm goes off.