Today, the 14th July is (would have been) a very significant day in the journey of ‘middys marrow’.
Today marks exactly one year since Paul went for the blood tests which turned out to be a very life changing happening and one that caused us both, and a lot of other people heartbreak.
Today would also have marked day 100 for Paul which in terms of stem cell transplants is a very significant milestone and when a bone marrow biopsy would have been performed to determine the percentage donor cells to remaining diseased cells. More importantly though is that from day one hundred they start to consider the weaning down of some of the toxic drugs used to suppress the patients immune system.
Today – its unbelievable, also marks National MDS day. So, can any bloggers who happen to read this spare a thought and help raise awareness for this little known but very destructive disease.
I still struggle to believe that this is it and my darling Paul is with us no longer. It all just seems so unbelievable.
At time we have used songs to express emotions on this site. Well one that constantly goes through my head at the moment is an old one by Ringo Star.
“All I’ve got is a photograph and it reminds me of the places we used tho go.
All I’ve got is a photograph and I realise your not coming back any more.
Now your expecting me to live without you and that’s just something that I’m not looking forward to”
Paul’s funeral service yesterday was beautiful. There was over 400 people in attendance and the tributes he received were lovely.
On Paul’s behalf (and the families) I would like to thank you all for attending, and for the flowers, gifts and cards. He would have been overwhelmed by every bodies kindness.
The Yorkshire way of putting it is “we gave him a right good send off”.
Thank you everybody!
A service for Paul will be held at:
Karrakata Cemetery at 10.30am on Saturday, 8 June 2013
It is with the greatest sadness that I must let you know that our dear brave Paul has lost his battle as a result of his stem cell transplant at 4.00am on Monday 3rd June 2013.
Paul has fought so hard during the last five weeks, but the infection which came on fast and swift was just more than his tired body could handle.
He has been a very loved man by his family, extended family, friends and work colleagues and will be so seriously missed.
We would like to thank the wonderful staff at RPH especially in the BMTU who worked beyond the expected to make Paul’s long stay in hospital both caring and comfortable and treated us like family.
Thank you to all of you blog followers who showed Paul so much support. He was lucky enough to get the opportunity to find out just how much people thought of him whilst he was still with us. Your support overwhelmed him.
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.