Wednesday, 18 June 2014

Hobson's Choice?

Today I turned up as scheduled at the Planned Investigation Unit and had more blood taken for testing (it appears that the previous sample was now too old to use) and a cannula inserted in my arm (for what reason I never got around to finding out).

There was the inevitable paperwork and while this was being completed the staff mentioned that I was there for a 'procedure' at which point my response was "am I?"

There followed a short discussion in which I made it plain that I didn't really know why I was there for certain, that at first I'd been told that it was a consultancy to discuss the options and what the procedures, nephrostomy or stent, actually involved. As the planned procedure wasn't due for until around 2:00 pm, it was arranged for a doctor to come and answer my questions.

Well I was seen by a very personable young doctor from oncology (another one). He was honest enough to admit that he couldn't provide specific answers and undertook to ask a senior consultant to come and speak to me.

What he was able to say was that the planned procedure was the nephrostomy, that it would be in place for at least four weeks and that a stent was by no means certain to be fitted after that because the position of the cancer node was not in a particularly accessible position. When asked what would happen if the stent was not possible, the answer was as per the Macmillan information; the drain would need to be left in place indefinitely.

This was confirmed by the senior consultant (one that I have seen twice during my pre-chemo consultancies). She also spelled out the consequences of not going ahead and it was during this conversation that it dawned on me that my original intention following the news that the cancer had metastasised and was terminal, hadn't either been passed on, or was being dismissed.

I reiterated that my personal view was that if treatment materially diminished quality in a trade-off for a hoped for longevity, I wasn't interested. Living with tubes and bags, dressings and restricted activity isn't my idea of quality living.

This seemed to at last penetrate. I fully understand their difficulty comprehending this. When I read of new, expensive cancer drugs that are said to extend the lives of terminal cases by six months, I just cannot understand why someone would chose to extend their life by so little when the quality of that extension is so poor. I said so and was told that the majority would take an extra week if it was offered. So it's not surprising that they needed convincing.

So what are the consequences of not going through with the nephrostomy? Bottom line; renal failure.

Apparently one of my kidneys is close to packing in altogether and this will weaken the function of the other one in due course leading to complete renal failure. Renal failure will happen at some stage, the worst case scenario is within a few months. How realistic that is, only time will tell. It was possibly said to test my determination.

It was agreed that my view that dying from renal failure was less painful than doing so from numerous cancers was an accurate assessment.

For the first time it was mentioned that there's another cancerous growth that is restricting my urethra. I have been mentioning the difficulty passing water repeatedly but this is the first time that what I've long suspected has been confirmed.

It was mutually agreed that it wasn't worth continuing with the chemotherapy. The reasoning is thus: Firstly it's aimed at the prostate and the cancer there is less damaging than the (seemingly numerous) secondary cancers that are popping up. The chemo has little or no effect upon these secondary cancers. Secondly, whereas at first the impact of the chemo was limited to a few days after delivery, with passage of time the impact has lasted for two weeks or more. Given that there is only three weeks between sessions and the third week is partly taken up with blood samples, oncology consultations and the next chemo session, it adds up to a pretty miserable time without a break.

There's going to be a meeting of various specialists at the end of this week to discuss alternative action. It may be that surgery to remove the growth on the urethra will be considered. With that in mind, I will see the senior consultant again next week (time and date to be arranged).

So, how do I feel? I'm relieved that I've been able to get across my preferences. To be honest I'd allowed myself to be talked into chemotherapy because successive consultants assumed that I wanted to extend my life at any cost.

In the past six weeks or so, some of the original symptoms have been creeping back, mainly the sense of a mass near my perineum and discomfort in my pelvis. It hasn't been very intrusive but sometimes I've resorted to an ibruprofen retard to help getting to sleep.

I know that some will question the choices I've made. Will this accelerate the end? Yes, most probably. I've been living with the reality of reduced horizons since I was informed of the extent of the cancer's spread. I'm at ease with that reality. In all honesty there have been a couple of times recently when I very nearly instituted my own exit plan. As I sit here now, that possibility has receded. It had come to a point where the moment I woke or if I wasn't careful to keep my mind off the subject, the idea of living with the chemo effects or the nephrostomy would crowd in and lower my spirits.

Now I'm looking forward to a period where my energy levels increase to some degree, where my appetite returns along with my taste buds. I have some things to do.

I need to register some special thanks to John who took me to hospital and collected me ahead of schedule then taking me to his home where he and Mavis listened to me as well as giving me lunch. Greg who spoke to me at length when I got home and who provides me with unconditional support. On top of that, Ryan turned up with Freddie having driven down to visit me in hospital and diverted to my place upon receipt of my email. That was an unexpected but very welcome morale boost. That's on top of all the people who have been sending me messages of support and love. I'm sometimes overwhelmed by it all.

Thank you all.

Thursday, 12 June 2014

A night in hospital.

Just an addendum to the above.

Today I received a letter confirming my appointment next week. However, it's for 10:00 am not 2:00 pm and they have a bed for me!

It transpires that whatever they plan, I will be kept in overnight. I'm still unsure what will happen, whether it will be straight to a stent or a drain first and then a stent at some later date. Perhaps they don't know either? The unit name, the Planned Investigation Unit suggests that they intend having a poke around.

I've checked with them and I'll be okay to attend the scheduled chemo session the next day. I'm assuming that means I'll be discharged before it's start time of 3.30 pm.

Fortunately, my friend is happy and able to collect me in the morning and he's prepared to keep the next day clear and await my call. The kindness of people is a little overwhelming.

I'm not looking forward to a night in hospital. It will be a first for me, one that I'd have been happy to have avoided (for a little longer at least).

Now I'd best buy some pyjamas I suppose.

Wednesday, 11 June 2014

11/06/2014 Consultation

My PSA continues to fall, as of today it's down to 79 from 94 three weeks ago. I'm due the next hormone blocker injection later this month, it will be interesting to see if that has an effect. I suspect that the dramatic drop back when I began chemo, which was just after the last injection, was possibly in part due to the hormone blocker.

The pattern of feeling ropey seems to have altered. Until the last session, I felt awful within twenty-four hours, then slowly better over the three weeks. This time I felt bad (the worst so far) within twelve hours, not so bad by the second week and then this last week has been pretty bad again.

On top of the chemo effect, I seem to have returned to a degree of discomfort in my pelvis and femur. It's nothing like as bad as it was before the chemo and I'm still mainly painkiller free. I sometimes resort to paracetamol in the evening and that helps.

It seems that I haven't escaped the hair loss side effect either. For a while now I've noticed how sparse the hair on my arms and legs has become. Last week I woke to find that my beard was on the pillow! Well some of it. I was left looking like a badly plucked chicken with some random tufts here and there. On the up-side it doesn't take much effort to shave what does (slowly) grow.

When I gave the latest blood for pre-chemo testing I also gave a sample for the putative nephrostomy (it had to be tested for clotting capability - the chemo destroys white blood cells).

I discussed my concerns about the nephrostomy. The trouble is that most people seem pretty vague about the details. For example, today, it was suggested that it might be possible to insert a stent without needing a drain.

The need was also discussed. My kidney function is affected but as the dysfunction is also a side-effect of the chemo, I'm still not absolutely convinced that the cancer node on the ureta is the cause and nor are the medical professionals it seems.

Anyway, I have an appointment for 2:00 pm on Wednesday 18th of this month (a week today) with a consultant radiologist. He will hopefully determine whether or not a drain is required or if a stent can be inserted without.

As it's a possibility that the procedure will go ahead that day, the chemo session (number six) scheduled for this Friday has been cancelled and rearranged for the following day (19th June). This is due to the affect of the chemo on the white blood cells. As there's a possibility of one or other of the drain/stent insertion might go ahead on Wednesday, I cannot drive myself to the hospital. Fortunately an ex-colleague and friend has offered his services as a taxi.

So I have a week's extra gap between chemo sessions but that means further into September before it ends and if the nephrostomy goes ahead I will have to cope with the effects of the next chemo session on top of that procedure within twenty-four hours.

I'll admit that I'm not really very happy with the prospect. I've suggested whipping out the affected kidney and sticking it on ebay but everyone just laughs!