Saturday 24 May 2014

One step forward, two steps back.

Well number five chemo went well. Probably partly due to taking on lots of fluids in the days leading up and in part owing to the expertise of the staff who managed to get the cannula in first go and without recourse to bowls of hot water.

The whole process went much quicker too. I think that partly that's due to the staff being happy that I'm not likely to react detrimentally to the process, so as the first saline was started the anti-sickness syringe was pumped in and then followed by the large dose of steroids. When that was disconnected the chemo solution was hooked-up. So all-in-all a smooth process.

Since Wednesday I've done a quick mental calculation and realised that the ten sessions will take me into September. That's a bit of a blow. If as I can expect, the effects are likely to accumulate, that's virtually the best part of the year written off. Then there's the possibility of it being extended if I need I break at some stage.

The biggest issue though is the nephrostomy. I have to arrange a blood test to check the the clotting capacity is up to snuff. It could have been done after the chemo session but to be honest I'd had enough of needles lately by then. A side effect of the chemo is that I bruise very easily and there's nowhere they take blood from that isn't tender. The last blood sample and the injection of dye from the CT scan were quite painful, remaining so for a few days. I'll get the GP surgery to take the blood in a few days.

There's no rush because I'm not convinced as yet that I'll go for the nephrostomy. I really need more information and I'll ask for another consultation before deciding.

By Friday I'd had time to take in the news and having read the information available on the Macmillan website.

I had come away from the oncology consultation last Wednesday thinking that the effects of the process were likely to be difficult to cope with. Now having read the Macmillan information I have serious doubts that I am capable of dealing with them. Okay, possibly for a few days or a week but potentially it could be many weeks before the drain is judged to have done its job or never.

The questions I need answering are:

Why, if I have no pain or obvious symptoms of kidney dysfunction, does this have to be carried out now?

If the cancer node is only restricting the ureta, as found by the CT scan, not completely blocking it, is it not possible that it will not necessarily do so?

As the CT scan is the only the second and separated by more than two years, is it not possible that the node has been affecting the ureta for quite a while? If so and I'm not experiencing related problems, is there any harm in leaving well alone pending a worsening of the situation?

Is it possible that the chemo is actually shrinking the node and that it will continue to do so?

What, given the current condition, is the realistic time frame that I'm likely to have to live with the drain in place?


What I find so difficult to cope with is actually living with the drain. I refused a PICC for the chemo on the basis that a permanent cannula in my upper arm would be more difficult to cope with than the difficulties of introducing one for each chemo dose. Sleeping, showering, cleaning and re-dressing the PICC would reduce quality of life on top of the chemo side-effects.

It's not as if the drain would relieve the issue I have with urinating. The ureta drain into the bladder from the kidneys and are 'upstream' of the problem with the urethra.

With the nephrostomy drain I'd have a cannula exiting from the small of my back connected by a tube to a collection bag I'd have to wear strapped to my thigh. There is no way that I'd be able to check that it was wasn't infected or leaking until it's really obvious. Having to rely on getting it regularly checked and re-dressed by a nurse would drive me mad as would not being able to shower as regularly as I do (sometimes several times a day owing to the profuse sweating caused by my treatments). Then there's trying to sleep with a tube in my back and a bag on my leg. Just sitting would be difficult to avoid problems.

I really cannot deal with the idea. This is my nightmare scenario; tubes sticking in me, not being able to function as near to normally as possible (all things considered).

Perhaps it's the fact that in the past few weeks I have been feeling so good that this news is so disturbing. It may be a disproportionate response but the despair at the proposed procedure is tangible. I thought that I'd adjust to the idea but yesterday I was probably at my lowest ebb for a long time. I'll admit to some pretty dark thoughts yesterday. Serendipitously, Greg called in today and we had a good chat about it. It helped a great deal and I'm definitely going to explore things further before I make a decision about going ahead with the process, or not. It probably doesn't help that I'm feeling the effects of the latest chemo, they kicked in much sooner than in the past.

I'm going to see if Macmillan can put me in touch with someone who has undergone the process and arrange a further consultation, a second opinion.

Just coming to this decision has helped me regain some equilibrium.

Wednesday 21 May 2014

Not such good news this time.

Today (21/05) I had another pre-chemotherapy oncology consultation and my PSA has fallen again but not as dramatically, it's down from 98 to 94. At least it's in the right direction.

The title of the last entry, it turns out, is incorrect. It's not only one or two of my readers who were wrong about the total number of chemo sessions, I've been wrong too. It's not six or as I thought, eight sessions, it is in fact ten so the next one (two days hence) is actually the halfway point. It's a bit of a blow as I'd believed I was halfway through.

Still, to temper that disappointment, there's more.

Just before my second chemo session, the nurse was checking my file when she said that there was something she needed to check before starting the procedure. She was gone for a while, when she returned and I asked what the problem was she told me that my blood test revealed an issue with my kidney function but that it was okay to continue the chemo session.

Last week I had a CT scan and today it was confirmed that a cancerous node is affecting one of my kidneys, preventing it draining properly. If allowed to continue it will lead to damage of the kidney.

The intention is to insert a stent to keep the kidney open and draining but first there will be a nephrostomy. This is a cannula inserted into the kidney via the small of the back to allow it to drain. That means a bag for as long as it takes, possibly several weeks, to ensure the kidney is drained fully. Once that's done there will be an operation to insert a stent to keep it open.

I'll admit to not being too surprised about there being an issue. I had thought that it was likely after the second chemo session and the question about my kidney function. Although it is bit of a backward step it's not as bad as the worst possible scenario; the cancer getting into my kidneys or other organs.

Probably the worst thing is that in the past ten days or so I've felt so much better with more energy than I've felt for months, possibly even the past year. This feels, at present, with the news so fresh, something of a few steps backwards. I dare say that as I assimilate the information and get used to the idea of more medical intervention, it will seem less of a retrograde step. Even just setting things down here is something of a catharsis.

So, I'm set for chemo number five on Friday afternoon. I'll be hydrating myself between now and then in the hope that it makes inserting the cannula easier and steeling myself for the inevitable effects within twenty-four hours.

Talking of which, an odd thing happens when the loss of taste buds is at its worst, I find myself fantasising about all sorts of food, usually things that I haven't eaten for years. It can almost become obsessive. Recently and this is a bit of a coincidence, I found that I was thinking about devilled kidneys! This wasn't so bad when I knew that it was pointless eating because everything tastes the same (uniformly disgusting) but as the taste sensation returned (it never fully recovers) I set off on a hunt only to discover that my preferred pig's kidneys seem to be out of fashion these days. Well that only added to the desire. Yesterday I found a butcher with some and I shall feast upon them this evening. It seems somehow fitting to dine upon devilled kidneys today!


Saturday 3 May 2014

Halfway Through the Chemo Sessions

As per usual, I gave a blood sample in the week just before the scheduled chemotherapy session and that was followed by an oncology consultation the next day to discuss the impact and any anomalies thrown up in the blood test. All was okay so onwards with the next session.

The PSA result wasn't known but the oncologist did say that as it had dropped significantly last time, I'd probably be booked in for a scan sometime in the next month or so to see how things are.

I again raised the issue of the bladder and it was put to me that it should improve with the passage of time, that even though the chemotherapy appears to be taking effect, it will take some time for such things to show signs of improvement. If in due course there is no significant change for the better, further investigation and possible treatment will be investigated.

Owing to the Bank Holiday weekend there was a backlog of chemo patients requiring the limited resources of the Oncology/Macmillan Unit so my session was shifted to another unit in the main part of the hospital.

I discovered that it was slightly disconcerting to be somewhere different, odd that in such a short time the familiarity of the Oncology Unit had become important to me. The fact that the staff were also transferred helped and the explanation that those of us shifted were chosen because we were "old hands" showing good responses to treatment. My next session will be in the same place.

After what was said about dehydration making things difficult regarding the cannula, I took in plenty of fluids in the preceding twenty-four hours and it seemed to pay off because it only took two attempts to find a suitable vein this time.

The PSA result was available by Friday and it has fallen again, now it's down to 98.

I'm not feeling too seedy twenty-four hours after the event. The taste bud issue has returned with a vengeance, not that they fully recovered from the last session. It's really quite odd the way that certain ranges of my ability to taste sweet, sour, savoury etc. alters. Sometimes the most bland of foods are the only ones that register, at others it's another taste sensation altogether. Sucking ice cubes helps a bit.

I've gone back through previous entries and cannot find the source of some confusion over the number of chemo sessions that seems to have arisen. Just to confirm, the scheduled number is eight spread over six months and I should make it clear that however unpleasant the treatment might be it's nowhere near as unpleasant as the main symptoms were.

'Were' is the operative word. I've not had to use any pain killers since the second session and the sensation of sitting on a golf ball hasn't been present for a similar period. Yes, the side effects are unpleasant but there is an end to them in sight and the important thing is that trade-off is that despite feeling rough at times it seems to be having a beneficial effect.

The bottom line is that in more than one respect I fee better than I have for quite some time. The side effects are a nuisance, no more than that.