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!

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.

Friday, 11 April 2014

Reasons to be cheerful - Part One.

Since the last entry I have had two nights of waking more often but nothing like as bad as before and the second was last night so that might have been anxiety about today's chemo session. I'm still rarely needing to resort to pain control during the day. I do take a slow release ibuprofen in the evening most days as the discomfort creeps up during the day.

My oncology appointment was with a Practice Nurse and he was very thorough. I came out feeling that things were looking good. The only slight concern was that where the cannula was inserted the skin turned purple after about ten days, felt hot and then began to itch for a day or so. It's still a bit red but apart from that it's not causing any problems.

So I turned up for 9:00 am today (11th April) and was called in at 9:15. This time I was taken into a communal room with six or seven stations.

As I was first in I got to choose where to sit, then it was the poke around looking for a working vein game.

Three different members of staff had a go this time and the ninth attempt was successful. There was more talk about a PICC and more refusal from yours truly. What was amusing is that we were all apologising to each other; me for having difficult to find veins and the staff for failing to make a connection. When I finally left I suggested that they have a look for when I'm back next and book some leave.

After an hour of stabbing away at likely places on both hands, following sessions of me sitting with my hands in bowls of very hot water, I asked for a time-out and went for a wander around outside for twenty minutes.

It may have done the trick, or it was that the next staff member struck lucky because she only made two attempts and the second struck gold.
Plugged in and ready to go.

It turns out that my regime of not consuming fluids to get some control over my bladder isn't helping. Being properly hydrated will make finding a vein near the necessary valve (to avoid back-flow) should make things easier. So I have to balance the digging around with the likelihood of wetting myself!

So by about 11:00 am I was hooked-up and sluiced through with saline solution, then two doses of preparatory steroids before the chemotherapy gloop. 

It's possible to sit and watch the readout displaying the delivery but it's a bit like clock watching so I plug-in my iPod and get stuck into my book.

At one point I put my book down, closed my eyes and got lost in the music. I was surprised to be prodded by a concerned staff member because she noticed tears streaming down my cheeks. She was worried that I was in trouble. I'm so used to Wagner moving me to tears that I hadn't noticed. Poor girl was probably more concerned that someone could be moved by Lohengrin than relieved to find that I was in fact okay!

So in due course I was sluiced out finally with another saline solution and about to be sent on my way when I remembered to ask if the PSA result was available.

You may recall that in February the PSA was up to 741. As of last Wednesday it was 178. That it has fallen wasn't a huge surprise, things have been good (relatively speaking) lately and I knew that there must have been an improvement but I hadn't dreamed of hoping for such a dramatic fall in the score.

It remains to be seen if the rate drops as far as quickly in future but I'll be happy if it just keeps going down. If further falls mean that I regain more bladder control, I'll be very happy. What the long-term treatment will be is anyone's guess, I just have to wait and see if the secondary tumours are also being affected by the chemo. The fact that I rarely notice the pain in my hip and femur could be another reason to be cheerful but best not jump to too many conclusions. Only further full body X-Ray will show and I anticipate that it won't be done until or if the PSA continues to fall.

To celebrate I went for lunch before my taste buds disappear again in the next few hours. It will be interesting to see if the side effects become cumulative as can happen. Whatever happens in that respect, feeling this good is not something that I'd anticipated so I'll not moan about the side effects.

My next session is at 2.30: pm on Friday 2nd May, preceded by another blood sample and oncology check-up on the 29th and 30th of April respectively. I'll update this with a general synopsis before then.