Same place different day. Here at Middy’s Marriott one day seems to roll into the next. But I am pleased to say, each day sees Paul getting a little bit stronger.
It has almost become an afternoon ritual to go out walking – good for Paul and also forces me to get some much needed exercise. Even though Paul has lost 13kg to date, pushing a wheelchair around the local hills for 50 minutes has to be worth at least some brownie points! The cathedral has become his favourite place both inside and outside and the place he is using to get in a bit of walking.
Hopefully now that he is eating some meals again he will regain some of the lost weight and manage to rebuild some of the lost muscle mass. It really doesn’t take long for muscles to waste away.
Big breakthrough today – his afternoon ‘spa treatments’ has now been dropped. This is great because it helps to free up the afternoon a bit. His skin is really looking so much better and his regular Tuesday visit to the ophthalmologist once again gave him the all clear.
He continues to praise the nurses that give him so much kind attention and he is so appreciative of their kindness.
All positives folks 🙂
Paul had a good weekend and each day is seeing him get stronger. Both days they gave him a two hour leave pass for a walk so Saturday son Nick found himself with the wheelchair duties as far as Supreme Court Gardens – check out the photo opportunity in ‘Photos of the journey’ (no laughing please and go easy with the smart comments but I just couldn’t resist:) ). Lets hope the sunshine lasts for days to come.
Another thing that helped raise Paul’s spirits was seeing a couple of the grand kids, Shelley on Saturday and Olivia today. He really has missed seeing the kids and at last he has healed more than enough not to scare them off.
At last food is being more easily tolerated and tonight’s chicken curry and rice actually got a compliment. It’s amazing how little things like having a drink of lemonade will never be taken for granted again!
Baby steps, but those steps are getting stronger by the day.
Somewhere along the line I have dropped a day and today is Day +50, so Paul is half way to that ‘magic’ +100 days.
The last four days have seen us out and about town taking a spin in the wheelchair. They have also seen Paul’s energy levels at varying degrees. But today has been a better day. For those of you who have seen the movie The Intouchables he has mentioned that he might trade me in for the black dude in the movie cause he makes life so much fun. We do look like a right couple though hairing around town with Paul in his weird get up (I will sneak a photo opportunity at some stage). Being out in the glorious sunshine certainly does gives Paul’s spirits a lift though 🙂
The improvements to Paul’s skin continues, in particular his mouth is getting much better and this makes eating food a little easier. Everything still tastes shocking and he cannot tolerate anything with the slightest hint of good flavour! Although his eyes are still quite bloodshot we can now see that He actually has whites to his eyes.
It seems though that instead of medications getting less the list seems to grow longer. The main medication for GVHD, a steroid called methyl prednisone, can play havoc with your blood sugar levels and cause irratic heart beat – well you guessed it Paul has been dished up both, so this means more drugs to counteract the other. He asked for a medications list this week and he has a total of 29 different types of drugs or lotions.
Another positive – he has been battling a couple of infections in the last couple of weeks, well they seem to be getting on top of those also.
We are hoping that the next 50 days, as we head toward day +100 just have to get better than its been. Keep up those positive vibes and prayers everyone, we are sure they are doing the trick – but Paul still has a steep climb to get out himself out of this deep hole he has been in.
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.