Today's been confusing, well at least this morning was....I know that, when it comes to us, we're easily confused, but our top man in oncology (the wonderful H) told us all the technical detail, and because we've been there, done that, and both got the T shirt, we are supposed to know exactly what he meant. To be fair, we had a reasonable idea what he was on about, but the many and various different drugs are all long words, and we're only country people.
This was our first visit to oncology since the operation....and our first visit to the new oncology unit at the General Hospital...what a great facility....and to think that not that long ago we were all working out of nothing much more than a hallway in the back of the Gwyneth Huelin Wing... not that it makes chemo any easier to think about....but it will be better and quieter when it comes to the treatment. Anyway, we were there this morning for our consultation....it was reassuring to see so many friendly and familiar faces, even though we had hoped never to have to speak to them (in hospital) again. The first part of the conversation was about drugs...what they could use, what they'd like to use, what would be the best to use.....and after all that, when they might start. There's no doubt that there is a prefered option...the problem is that one of those particular drugs is not very often used over here. We'll need some special agreements....hopefully we'll be alright. One of the reasons for the particular favoured option is because Jill's bone marrow is obviously not great....if you remember we had that London operation cancelled at the last minute due to low white cell count....anyway, this one drug will be very much kinder to Jill's marrow....it's going to be important NOT to wipe out the marrow right at the start of the chemo...otherwise we'll be finished before we've started.....and this time we really need to try to get through ALL the courses of chemo. Depending which drugs we end up with we will need different schedules...can you believe it, some drugs are every two weeks, some three and some four...some can be taken on their own, and some can be taken in combination with others.....we're going to have to keep a calendar around inside our underwear....and if we're confused now what will be like after a couple of courses of the "hard stuff".
The next subject we tackled was Jill's fluid....call it what you like.....she could well be pregnant (now that WOULD be a shock). The verdict from oncology was that the fluid shouldn't have be left there to "sort itself out" and that normally (in their experience) it would have been drained. If we weren't confused before, we were getting pretty brain dead by this point. No chemo before the fluid is drained....but no sign of anything being drained because the Marsden think it should stay there. So, one hospital say one thing and the other says something else....and the last thing we want is to be the filling in the middle, waiting for a decision. On top of all that there was even a long "discussion" about HOW to drain it.....given the terrible problems with last week's drain, who knows what's happening. There was discussion about the effects of the chemo (or otherwise) if there is a lot of fluid around....you don't want the drugs going anywhere except to the disease.....all in all I think the fluid has to go! ....but when. The specialists are away (at the Marsden ironically) until tomorrow evening...maybe we are heading for a Saturday "sort out".
Jill is in increasing pain....despite my suggestion that we go to Rayner Ward after oncology, the verdict was that as the experts are away no-one there would be able to make a decision as to draining the fluid. We do, however, need to monitor the situation....I for one will NOT be letting Jill get into the same state she was in 10 days ago (10 days!!! where has all that time gone) We had hoped (and so had oncology) that we would be into the chemo programme by now.....I really hope we can sort this all out next week so we can have the first round of chemo maybe Wednesday. The fact that the fluid is building up again means that her "tummy" (let's leave out the detail for now) is not functioning at all well....no real BO and not a lot of PU either (those nurses among you will know what the letters stand for...the others will have to work it out for yourselves), her appetite has gone due to the lack of space for food to enter her stomach, and finally she is a little breathless due to the fluid pressure on the diaphragm .... all in all (just like last week) we could do with this pressure being reduced soon.....it's not increasing as quickly as it did last time, but it's still increasing a little more every day.
We are taking drugs for the pain.....and I'm not sure if we still have any additional potions up our sleeve in case things get worse in the night....maybe there is some Oromorph (and the clue is in the "morp" bit of the name) ....yes, I've just been to look and there is some....we're pretty lucky that the boys haven't been using it their coffee...seriously though, Jilly doesn't want to get into morphine unless it's really necessary...let's hope we don't need it.
The day has finished a little better...we had a full table for supper...thanks to all those who contributed to the food ...and all in all Jill's a little easier now. Visitors this afternoon also helped to keep Jill's mind off things a little...and catching up with news from outside St. Martin. Something I MUST remember to do is give Jill her injection this evening....for some reason last night it just didn't happen....hopefully no harm done, she had the pleasure of it this morning as we left for the hospital.
Not sure what tomorrow will bring...hopefully a visit to the General to sort out this fluid again....not that we miss the hospital...but sometimes needs must. There were some amusing highlights today...funny how I just can't think of any when I need to. Stay tuned for tomorrow's gripping saga of what, who, why, when.....and how. let's hope for some answers soon.
Yours, confused.com
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