Another One Of Those Days!!

Damn, damn, damn, damn, damn.  I think that’s enough damn’s to make the point.

Yesterday was a bit off a disaster in many ways.  All was well in the morning and for once I wasn’t really even bothered by the Heath Towers Express racing through on the dark early hours as I was actually awake and not tired too which is unusual for me.  I had arranged the day before for Judith to come in a little earlier than she usually does so that she can bring me in some lunch.  I had told the slop stirrer earlier what I was doing and thanks but no thanks to the cottage pie on offer I will stick to my fresh delivered meal from Judith.  Well she was supposed to be coming in sometime between 12 and 1pm and when 1.30 came and she still wasn’t here I gave her a ring.  Lucky I did as I woke her up, she was still asleep.  She said she would be in as soon as she could and would ring me from Asda’s to see what stuff I wanted.  I really fancied some stuff from the salad bar.  Tomatoes and beetroot and pasta salad and stuff.  Well about an hour or so later she rang. “You’ll never believe this, they don’t have a salad bar anymore”..  Oh no after all that too I was really looking forward to some.  She did however then go on to say “but they do have some Bacon Hocks”,    yummy, yummy.  “YES PLEASE”.  She was around half and hour or so from the hospital and wouldn’t be too long.  Thankfully the physio’s turned up just then to assist me in my daily marathon.  I was hoping that as my chest felt a little less tight that I might do a bit better than yesterday in the walking stakes and I wasn’t disappointed either.  I managed a good 15 metres for the first attempt then after a much shorter rest to catch my breath I continued on to do another 3x15 metres with stops in between of course.  That is by far the longest I have walked in quite some time and although I did get breathless it was back under control fairly quickly by my standards anyway.  When I got back to my cell I was greeted by the intoxicating smell of my wife obviously and maybe the bacon hock too!!!!!   It was a case of out of my way I am starving and attacking the joint with a sharp knife cutting off huge chunks.  After a while I thought ooops I better ask if Judith wants some because at this rate it will be gone soon.   I did share it with her and made sure she had all the fat free pieces as she doesn’t like the fat and I BLOODY LOVE IT!!!!  It’s the best part I think.

The physio popped her head in a while later to say that the assessment team that were supposed to be coming will not be coming now till tomorrow, Thursday.  Ah well I guess it is going to be one of those days where nothing else goes right.

Later on I was having a chat with the nurse responsible for my health and well being, poor girl, what has she done to be punished so harshly?  She was asking if the doctors had come and told me the outcome of the Pow Wow earlier, which they hadn’t, so she went off in search of a body that resembled a medical type person, well in fact anyone who had a stethoscope around their neck would have done.  Could have been an escaped mental patient for all I know.  Suddenly as if by magic “The Quiet Monk” turned up.  After the obligatory “how do you get Sky TV on your laptop then”? Question, loads of them always ask.  I ought to buy a load of these Freeview things and each time I come in I could sell a few.  I would make a killing.  Well sadly it was not good news really.  Merlin had to go and do an Urgent Bone Marrow Harvest so was not able to get to the Pow Wow hence they didn’t discuss my case.  I must say I was none too happy really as things have gone on long enough now, but I do understand priorities.  I will hopefully see him later on tomorrow to see if there is a way around this or if not it will be brought up next Wednesday.  The other thing he said that he had noticed was that they had prescribed me the wrong nebuliser.  The one I have been taking is called Pulmozyme and it should be Pulmocote.  They are very similar except the one I was supposed to be taking contained a steroid and the one I was taking didn’t.  This is a big problem really as some of these doctors’ handwriting is nigh on impossible to decipher.  Even so they should have at least gave him or one of his team a call just to make sure as it’s now when I’m writing this, Thursday and I have been on them for 7 days now.  What if it was doing me harm??  Good job I read all the information on the sheets about the particular drug before it gets anywhere near my body.  The Pulmozyme I was taking is designed to break up the mucus that’s building up in my lungs, therefore loosening it and making it possible to cough up.  This is what I remember Dr Gelder saying it was going to do when he prescribed it last week so I thought nothing of it at all.  I do vaguely remember him saying something about one of the drugs he was prescribing including a steroid of some sort.  Maybe it is this that has been causing the wheezyness, but in saying that the other one will probably do the same thing as that’s designed to break down the mucus too.  

I’ve been sitting here thinking to myself and out loud, much to the amusement of the odd onlooker though the spy hole cut in the door, placed there just to make the whole “Being Locked In A Cell” experience more accurate, about what have they actually achieved for me after just over 4 weeks in here.  The coughing has certainly changed and eased a little.  I don’t appear to have any infections although there was some debate whether I actually had any when I came in.  My breathing occasionally is better than it was and definitely improved in general but not by a big amount.  I have been given an immune system boost that can’t really be quantified in feeling better or not, just a case of see if it stops me having as many infections etc.  GVHD of the skin is unchanged at all.  Still tight, still painful, still adding to my breathing problems.  The big skin difference has been the sores that I have.  As they are now being treated properly as in re dressed every day not once a week that the first nurse was saying it had to be done.  2 out of the 6 are almost completely healed up and the others are not too far away as well which is good.  They look like they should be very very painful but thankfully due to the GVHD the skin is pretty numb so I can’t feel a thing.  The physio input has been extremely useful and will remain so hopefully at home if they ever come and assess me that is.  I have on times been able to walk a little further than I have for a while although I have also been at the other end of the scale when I just sitting up in bed makes me short of breath, however the general direction is Onwards & Upwards, well as Upwards as my tight skin will allow, which at the moment is about Half Mast!!.  I used to be 6ft 5ins but at the moment I would think I am about 5ft 7ins fully stretched.  I won’t even go into the mental torture sustained by all the problems with the slop stirrers and dirt shifters etc etc as its 3 blinking pages again before I know it.

In general I think there have been improvements, lots of which would not really be visible and it has laid a foundation to try and build on the future.  I was, as usual expecting a lot more I think, which is not necessessarily a bad thing as you need to aim high don’t you, which would explain why I’m not jubilant at the progress but I assure you I am inside and now hopeful for the future again, which has not been the case of late.