All I’ve got is a photograph

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”

Thank you

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!

Funeral arrangements

A service for Paul will be held at:

Karrakata Cemetery at 10.30am on Saturday, 8 June 2013

Day +60 – Signing out

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.

Day +55

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 🙂

Day +52

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.

Day +50

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.

Day +47

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 🙂

Day +45

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.

Day +42

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……..

Day +40

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.

Day +38

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!

Day +37

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.

Day +36

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!

Day +35

The battle for Paul is going to get tougher over the next week or so if thats possible.

It seems that now the cells have wrecked havoc with his skin they have decided to attack the soft tissues inside of him.

Paul is still so positive and determined to win this battle. To save his energy for the fight he has asked if all you kind people out there could save your visits for when he is feeling stronger.

Please feel free to leave him your messages on this blog. It keeps him in touch with the world out there.

Day +34

Ground Hog Day. Same place different day!

The redness continues to work its way down Paul’s body moving the soreness from one place to the next. The skin is blistering and peeling in places. Even his fingers and toes have not been spared.

Thought this was the Battle for Britain – now I’m convinced the Red Coats are trying to take over.

One day at a time sweet Jesus thats all I’m asking of you.

When the going gets tough the tough get going.

That’s enough of the songs.

Day +33

It’s lotions, potions, pill – you name it Paul has it. If he has a square inch of skin it has the red rash trying to take control. Despite all his spirits seemed a bit brighter today. You really have to take your hat off to the way Paul is facing this set back.

He saw the eye specialist today and fortunately it’s only the whites of the eyes that his new cells have attacked not the cornea. Hopefully it stays that way.

His tummy has settled a bit and he is forcing a little food down after using some numbing paste in his mouth.

Still a very long way to go. When he looks in the mirror in the morning he says ‘that couldn’t possibly be me!!’.

Thanks to everyone for you continued support it really does mean a lot to him.

Day +32

Just a small update tonight. GVHD Grade 4 continues to plague Paul. The swelling is down but he is still bright red and the skin is shedding off him in places like he has 3rd degree burns. It is in his mouth, throat and eyes.

He is such a trouper though and he is turning on all the charm he can so that he has the nurses eating out of his hands. They have even got them upping the spa treatment to three times a day.

Visitors are still welcome helps keep Paul’s spirits up – it doesn’t take a rocket scientist to work out that Middy’s Marriott is going to be home for longer than we would have hoped for.

Day +31

Same planet different world!

Today when I walked into Paul’s room I thought it had been taken over by an alien. The swelling has gone down from his face but it is still very red and sore looking and he is now shedding thick skin around his eyes (and his arms). This combined with his bare head and sore mouth have given him a very surreal look.

Saying all this though he says he is feeling ok and perhaps a bit better than yesterday so I guess that is a positive. He would kill for a T bone steak and chips though instead of the liquid diet he seems to have acquired.

Paul is being kept very insular in at Middy’s Marriott. We now have to cover ourselves with gowns, shoes covers and rubber gloves before we enter his room and dispose of them before we leave. My turn now to be in photos of the journey.

They keep reminding us that all this means that the new cells are engrafting. Remember …… One day at a time…. One day at a time ….. One day at a time………

Day +30

Paul woke up this morning feeling pretty lousy but as the day has worn on he is feeling a bit better. Your visit must have cheered him up Michele!

The rash is no longer a rash but one giant covering of red (check out the photos) that has started to blister and peel. He looks like he has a massive dose of ‘pommy’ sunburn. The poor fella has it in his mouth, throat and eyes. This means that he has been red carded AGAIN and the poor nurses have to gown up and put shoe covers on in case his skin flakes and falls off on the floor and transfers to another room.

His temperatures have been up again today but they do say that the anti rejection drugs can do this and they have increased the dosage of this. Lets hope that’s all it is.

The things some poor folk have to do to buy themselves a few more years is quite unbelievable.