Rainy Days and Mondays

Didn't Karen Carpenter have maybe the greatest female voice you could ever wish to hear? So many great songs, melodies and harmonies....but tonight's blog title seems apt. Today has been pretty rubbish....and if there was ever a day to "really get you down" then maybe today was it. One wouldn't want too many like this....but tomorrow is another day....and let's hope it's more positive.

Jill didn't get much shut eye last night. No apparent reason but just couldn't sleep. We therefore started off this morning very tired. The drain had lived up to it's promise of not really behaving....but it was certainly draining...unfortunately it was not only draining into the bag, but also on to and in to everything else. The washing machine and tumble dryer were both back on overtime...how would be even begin to cope without them? Anyway, we were downstairs and sort of ready to go pretty much on time. I left Jack in charge and went off to my meeting. 

I kept in contact with the ward and was told that Jill had gone for an ultra-ultrasound. KG was back on duty and wanted to know exactly what was going on "inside". The instructions were that the drain would be left open to take out as much as possible.....with the intention of maybe taking it out. I arrived with some lunch for Jill. 

KG arrived, with other doctors, to have a chat and see how we were doing. The first and immediate issue was that the colour of the fluid wasn't quite what KG was expecting. She was expecting Ascities (that's cancerous fluid for those of us who don't have doctorates in medicine). Ascities has a bright yellow colour (as we unfortunately know from our "lung" experiences of recent weeks). What we had was a dull yellow colour....and immediately recognised as lymph fluid.....again, something we've seen before (in BIG quantities back in 2014).  So, we had lymph fluid that wasn't supposed to be there....but there it was, and in some quantities...remember, we have been draining this off since Saturday morning. How was it getting into all these cavities? It really shouldn't be there. KG was taken aback for a few moments.... and she went off to see if she could consult with others. She was back pretty quickly having had a think....and this is where it gets a little complicated, so I'll try to describe it in simple terms. 

Lymph fluid moves around the body in tubes....from node to node....and if can imagine a "one way only" hose pipe with fluid in it then hold that thought. The most likely diagnosis seems to be that we have enlarged nodes (because of the cancer) in the upper parts of Jill's body. These larger nodes have basically blocked the tubes so that fluid can't get passed. That means that the body is pumping fluid but that same fluid can't go anywhere. Pressure is therefore, unsurprisingly, building up in the tubes. After time the pressure starts to get the better of the tubes, and the fluid starts to leak out....into whatever cavities it can find to go. In essence, we've been indirectly filling the various voids in Jill's body. There's no nice way of saying it....so there it is....

...and then gravity starts to take over. So the swelling that started in Jill's ankles many days ago now was because of fluid coming from higher up....and after the ankles came the lower legs, then thighs, then abdomen and then stomach....resulting in where we found ourselves on Saturday morning.

The good news (if there is any) is that the fluid in itself isn't cancerous. The less good news is that there's nothing much that we can do about unblocking the tubes...so that issue isn't going anywhere. However, we can cope with it, al least for now. Coping with it means that the temporary drain (that we've hated so much) will need to become permanent. Permanence brings it's own difficulties. The risk of infection is a real real worry....so we need to do all we can to avoid it. That means a different type of of drain (too complicated to explain today...maybe tomorrow) but at least it can be done....again, maybe tomorrow.

I forgot to mention that in the rush to get to town this morning the steroids, that Jill is taking daily, had been missed. That meant that things were quite as positive as they might have been (it's amazing how much better all round some of these drugs can make you feel).

So, there we were. Tired and steroidless, a bit "down in the dumps" and then told that the drain will become permanent and that "coping" with the fluid is the best we can expect. It really really was a case of "Rainy days and Mondays always get me down". There wasn't much to be positive about....and then the nurse removed the temporary drain (KG had said it had to come out because the risk of infection was too great) and the pain of the removal was unexpected and pretty severe for a couple of brief moments. there really was not very much going right.....and Jill, not unsurprisingly, had a bit of a "moment". I don't blame her.....it wasn't a great hour or so.

On the positive side...we had some dodgy days three weeks ago, and we got through them. Tomorrow will hopefully start from a better place (as I type it's 22:50, and Jill is fast asleep following her normal does of Morphine and Methadone). We are due a meeting with all the powers that be. There will be a "meeting of minds" and then we will see where we go. Certainly the consensus this afternoon was that there won't be any chemo tomorrow.....is that a plus or a minus? My hope is that, by the end of this week, we are learning to live with the drain (we've done it before). The difference this time is that we are not expecting to lose the drain.....so we will need to bet over that and move on.

I'm going to stop there.....there's overnight drugs to be got ready...dogs to "wee"...dishwashers to put on...tumble dryers to empty...and other domestic chores that need sorting. I'm confident that by this time tomorrow I'll be reporting more positive news. I'm not going to edit or check....so apologies for any glaring mistakes...I'm sure our reader will understand.