Today has been a good, good day
The last three and a half weeks has seen Paul the recipient of some very cruel happenings. The GVHD saw his skin, eyes and mouth receive the equivalent of third degree burns. But, that light at the end of whats been a very long tunnel is starting to get brighter.
Two positives to report today.
Tuesday saw Paul at his regular ophthalmologist visit. They were really impressed with the huge amount of improvement and pleasingly everything still looks to have escaped permanent damage.
Better still it was such a beautiful day (sunny and 21) I was allowed to take Paul outside the hospital for a walk in a wheelchair. This is the first time he has been able to breath fresh air since he returned to hospital. To say he was in his element is an understatement, in fact I almost had to tie him down – got out of the chair and started doing laps. Think we now have a new afternoon routine – better than any vitamin pill.
So, just like a loner, when I had to vacate Middy’s Marriott for Paul’s afternoon spa treatment I found the nearest bar and celebrated by myself with a glass of wine 🙂
Sunday today – this marks three full weeks that Paul has been entombed in “Middys Marriott” this time around. It has been a very long three weeks and for the first time he is beginning to show signs of frustration at the slow pace his recovery is taking (I am looking on this as a positive 🙂 ) Three weeks not leaving these four walls is just unbelievable.
What he needs to remember though is just how low he got and just how far he has come. Paul’s eyes are looking so much better as is his nose. His mouth continues to cause him a great deal of trouble and the main cause of his frustration. He is continually nagged by me and his nurses to get some food into him. Even his sweet tooth is not showing through!
The last few days though, we have had a laugh at Paul’s expense – they upped his pain medication and this saw him almost floating. A bit reminiscent of the 60’s and the old happy weed – Paul lay back in his recliner with his mouth piece nebuliser clenched between his teeth off in lala land. Just needed a bit of The Beatles playing in the background!
Fortunately the medicos decided that this was not the right way to go and changed their approach. I am pleased to say we now have more of the old Paul back.
We spoke about this SCT as being like a hurdle race – forget the hurdles, this dose of GVHD has been more like a high jump – Olympic standards! But, this athlete is rising to the challenge.
Each day sees Paul a little stronger and although he still looks really tender around the eyes and nose, he’s not getting such a fright when he looks in the mirror! His mouth is still pretty troublesome, but with a good dose of pain killers before hand he is attempting some food. The protein drinks have become Paul’s staple diet – we these he is doing exactly as he has been told (at least six a day). This too shall pass.
The nurses and dermatology team are all commenting on what a great improvement they can see and his day spa treatments have now been reduced to two a day.
Paul’s life still revolves around intravenous drugs, pills, potions and lotions. The nursing staff continue to give him so much attention and be so supportive – these girls really do deserve a medal.
Paul wants everyone out there in blog land to know that your support is much appreciated and they really do give him a laugh at times.
One day at a time……..
Paul has likened this past week or so to when we were in Croatia several years ago we drove into a tunnel. The tunnel went on and on and on, he thought he was never going to get to the other end. Six and a half kilometres later we did. Well he is not at the end of this tunnel yet, but he is at least feeling like there might be some light at the end.
Today saw him at the ophthalmologist for his second visit. Although the whites of his eyes have taken a beating, they believe that the corneas have thankfully escaped damage.
He is still suffering a lot with his mouth, so today he told the doctor “you stop this pain in my mouth, I will do the rest – I am hungry and want to eat”. This is the first time Paul has had the urge to eat for as long as my recent memory recalls.
These are all baby steps, but at least things seem to be moving in the right direction.
Paul is fast shedding his burnt skin, particularly on his back and the new skin looks fantastic. We are quite excited about this development, but at the same time we need to remain guarded because there is a possibility that the new skin could also be attacked – but so far so good.
His eyes and mouth continue to cause him the most discomfort at this point in time – hopefully this too shall pass and before too long.
The nurses continue to be amazed at the tenacity and courage Paul has when facing each hurdle placed in front of him.
You might find this very hard to believe but they tell us he is the model patient doing everything without argument asked of him!
Today was a better day for Paul. He seemed to have back some of his sense of humour and be more comfortable. Just like a snake he is fast shedding his old skin especially from his back – and the new skin looks good so far.
Still very early days, and a day by day thing, but at this stage any positives are welcome.
Heres hoping he is turning a corner – or it could be he has relented to some of the happy pills :). Whatever I will keep you posted and let everyone know when he is up to visitors.
Each day presents new challenges for Paul and he continues to face them head on like a true champion.
He tells all you blog followers thanks so much for your support and not to concern yourself too much – he will be back giving everyone the shits before too long!