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.
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