Hi Bell,

Just dropping in to say I am thinking about you and hope that you and Paul have had some relief since your last post.

Big hugs

Cath

Me too

hi bell and paul
been reading your postings about how things are with you both,you are often in my thoughts and i really hope things are settling down a bit and paul is more comfortable.love shirl xxx

Hello everyone and especially to thoose who sent personal messages, I have just manged to catch up with them tonight .Life here has been so busy and have had no time at all to myself .Paul had a turn with his heart a wee while ago which caused us great panic and was in hospital for a good few days it turned out it was an SVT and there was no damage to the heart itself thank goodness .He has had ongoing chest infections but is not ready to give in and go back to peg tube as he feels at moment his food is a cherished pleasure and as soon as more VF's are mentioned to check his swallow with a view to go down this route he is digging his heels in and won't be talked round .

As I mentioned before we had the Golf Open here last week and we had arranged to put up 4 of the golfers plus their caddies ages ago.They were in the downstairs section of house which is divird into 2 self contained flats so once they arrived all was ok and they were not any bother .Friends and family were up and down during week to park and visit so has been hell for leather .Paul enjoyed the week watching from window and on TV .I hired one of theese scooter things and on the Sunday with the help of the kids and boys we carried the wheelchair down and got him accross for a couple of hours on the Sunday which was good .

I know you guys are not into the golf so won't labour the oohs and Agh's of the week .

Tomorrow we have the hospital again for another plaster change but think it will be another 4 weks before they think about walkers so Cabin Fever is starting to set in a little and so is the cough again so was back onto doctors for more anti biotics .He has become very swollen and puffy and feeling a little low about his appearance and find him sitting staring at himself in front of mirrors.

The coughing is really hard to listen too especialy through the night but can't get through to him about the peg tube and getting him to undestand he is aspirating slowly due to the nerve palsy in throat .The doctors and hospice team have tried also but he won't have any of it at this moment in time .

The pain in hs neck area is starting to increase a little also but his medication is doing well and so far is working .Unfortunatley his skin is so poor and any bumps at all cause unsightly blemishes and need to be watched .His poor bottom is also starting to suffer and even though they have given us the best pressure cushion on the market it is still causing concern .I can't even get him on his side at night to relieve things as it is too painful for him around his head and neck so have now got him on a cushion ring at night to help as he needs to sleep upright .Got some new spray for at night so hoping it works better than the cream as a sodding great pressure sore is the last thing we need now .Between the pressure mattress and his ring he is like king Kong in bed and I am way down so I laughed the other night and said "Please dont you dare roll over !!!.He laughed and said " I WISH " so there you have it guy's just trucking on as best as we can in the hope theese plasters come off soon and hopefully he will be able to get back on his feet .

Hi Deborah, went onto to just giving and we sponsored you in memory of lovely Trev, so I hope you are geting in shape girl .

Take care and thinking about everyone .

Love Bell .

Dear Bell,

Its good to hear from you again although I am so sorry to learn that you and Paul have been going through the wars and that Paul ended up in hospital again. It sounds as if you are both coping remarkably well all things considered. I am sure it must be incredibly difficult.

Am so pleased that Paul managed to watch the golf and that you got him out in the scooter. Well done you!

We have been doing pretty well. The odd scare but I guess that is par for the course. I managed 10 days away from Chaz for work in Kenya. Must say it got difficult towards the end and I was very glad to get back to him. Chaz is continuing to enjoy his Harley Davidson and has started going for daily walks - which is truly amazing. At the moment we are killing time until Alex joins us for the summer and then keeping fingers crossed that Chaz manages to start his Masters in the autumn.

Much love to you both,

Cathy

Ahhhhhhhhhhh.........
What a relief to be able to exhale! It's lovely to hear from you Bell and that Paul is out of hospital and back at home. Clearly he's still very unwell if he's been tuned into the golf!
Thank you so much for your very generous donation, Bell it was very kind of you both. I have set up a blog (well, Peta set it up for me). If you'd like to (no, if you have a minute) the address is londonorbust.wordpress.com There is no prefix and it doesn't go through Google, just into your address bar.
I must be off to work. So lovely to hear from you. I'm sorry life is so full of issues for you both and hope you soon get on top of a few of them at least.
Love to you both
Deborah
x

Hello all,a wee catch up ,we had hospital yesterday and have now got feet in upright position ready for the blue shoes to try and get him on his feet.Need to wait till Monday for physios to come out and help him achieve this.Had a couple of goes at side of bed but his balance is awful so will just wait for the professionals.Have to take a pair of his shoes in next week for them to add height to the heels to reduce strain when they come off in a couple of weeks so at least meantime he can get his muscles working in preparation over the next week or so .Pleased they are moving things along as he is now getting some pressure sores.

Has got another ear and chest infection so back on the usual meds again but at least we are up and runing with this as it always happens at weekends .

Have enjoyed getting back on and catching up with everyones news .Checked out your blog Deborah very impressive you are really doing well and the ideas are fab.Cathy glad you managed your trip to Kenya and Chaz doing so well.I am sure he will manage to do his Masters Cathy .He will be the star of his class especially with his Harley Davidson...have you been on it yet ?

My goodness the trainers with heels ...well I am so gobsmacked this is indeed going to be a colourful walk ,the height of fashion !!!.Maybe by the end of this Paul won't be the only one in plaster.Maybe the ortho department could do your trianers also ,Tee Hee

.

Love Bell.

Hi Bell
Nice to have a chuckle at your post, especially the suggestion of injuries resulting from the heeled trainers. I'm thinking I might need some attention well before I get into the heels. I went ten pin bowling today with friends and oh me, oh my ~ I feel as though my knees are going to burst, my hips are humming and tomorrow I doubt I'll be able to lift my arm! At least it was fun so that will be my consolation.
I responded to your comments on my blog. Did you get notice of that? I really don't understand how it works and I have wondered if those who place comments get a notice of response (I do, whenever someone posts) or if they never know unless they go back onto the blog. I was very touched that you took the time to have a look at it Bell. Thanks.
Sounds as though things are moving in the right direction for Paul and isn't that great news? It will take a lot of pressure off you both if he can be just a bit more independantly mobile.
I must go get out the linament .......
Love
Deborah
x

Hi just a wee update ,things moving slowly and Physio in twice a week getting him up from chair to Zimmer doing some exercises and a short walk with me bringing chair up behind as he is prone to dizziness and just hits the deck.Had a wee altercation transferring him on Friday morning and took a bit of positive thinking out the box to get him off floor and back onto bed but we managed so back to waiting for Physio for a back up.She said if it happens again to phone district nurse as they have a gadget seat that is flat and once he is on it blows him up to higher position thinking i should maybe google this and have one handy ,lol.

Plasters come off on Thursday hopefully and will be easier to get him on feet ,he is a bit anxious they cave in again but with a little patience and raises on his shoes we should get him mobile again.

Spoke to doctor about dizziness so will see about this once his plasters are off and not taking the Aspirin .His ear as usual is playing up and causes balance problems too so a viscious circle .

Yesterday his left side cheek became hard and whole side of face swollen up so on more antibiotics as it looks as if their is another infection under skin which could be caused by a bite or a nick when shaving the whole area is bright red and in shape and pattern of original RT mask burn ,remember this used to happen occasionally way back .Pain in his neck is a little more prevelant but just monitoring this at moment with the infection and extra exercise getting from chair up on to feet takes a bit of effort and strain .

Well that is our update for now apart from all this he is quite comfortable of sorts and fairly content.

Deb's have been back on your blog but did not see a reply and looked for T shirt link but could not find it .Think I need to maybe start again with it and see if I have missed something .
Hope you have recovered from your bowling.

Love Bell x

Hello Bell
Great to read your post. Although you are obviously battling away each day with both new and recycled issues, you sound brighter/less worn than you were a while back. I hope that's the case and that you're both hanging in there. I still think of you every day and if positive vibes achieve anything then I'm sure we'll all have you both on top of everything before you know it.
Only two sleeps before the casts are gone. Even the thought (although causing a bit of anxiety) must have you on the verge of a sigh of relief! What an ordeal it has been for you both. True troopers, the both of you.
Maybe you do need to renew your entry into the blog, Bell. The link for the shirts is there quite clearly. The artwork is just gorgeous! Man, that seems like a million years ago ......
I have recovered from the bowling, thanks. I can't believe just how unfit I am. Can't expect much else I guess. The last couple of years were pretty inactive so I'll pay for it once I'm able to get out into the fresh air. Our temps are slowly coming up and it's only three weeks til spring! Where on earth has the year gone?
Thanks for giving us an update it's lovely, as always to hear from you, Bell.
Take care
Love
Deborah
x

Hello ,having a quiet time Paul sleeping so thought I would post a wee update ,things seem quite on the forum but will have a look later .Life here on a bit if a downturn of sorts .

Went to hospital on Thursday to get plasters off which resulted in one foot getting a wee nick which was sorted with a plaster,his skin is so thin and breaks easiy .Then consultant said she was happy and they could stay off.To go back in a month. They got his shoes on after a small struggle with the raised heels and we were told he could not weight bear till Physio came the next day to house and even if he had feet over the bed to go on commode or into wheelchair he has to have theese shoes on .Well took that on board and got letter to take back for Physio.Consultant left and when I turned round the plaster room lady was sliding him from bed to wheelchair without the Pat board so he just went down onto floor .Well panic stations but his ankles were ok and just another two cuts on arms and more plasters !!.Finally got him off floor with the hoist and into chair ,Got him home and the tracker chair used to get him back upstairs left huge rubber marks on all stair carpet . (no sweat, managed to get it off with white spirit .)

Today Physio came out but only managing to stand up and sit down as if he stands for a few seconds keels over so going to be a bit of hard work getting his upper leg muscles in shape I think ,but she assured me it would take time but we will get there so now having to nag him about excerises poor soul .

On a more worrying note his neck pain is getting worse and his swollen face on both sides and neck not settling even though he has been on god knows how many anti biotics ,doctor back out this morning to change medication and up pain meds but not clear about his face swelling whether it is an infection under skin or not and I think they are just monitoring this as well so next week I think all his medication will need to be properly assessed again .He is so fed up and in discomfort especially if he tries to look up or turn his head ,getting into bed on the board is hard because when he goes on to side we have to try and hold his head ,so I am not too happy about things at moment wish they could just say what the problem definately is about his poor red swollen face and sort it . Because of this, his jaw is tighter and opening mouth becoming more difficult now for his beloved food .His chest is still not great and coughing still prevelant but under control in the meantime .

His ear is still pouring also and not clearing up so he is not having a good time at moment, so many different things arising.

Well sorry about having a good moan but feel the better of it, maybe someone else has had this and can chip in with some know how .

Deb's will go back on to your blog and try again .

Hope everyone else is doing ok and coping with their own ups and downs through treatment thinking about you all,

Love Bell.

Dear Bell
As usual, words fail me. I always love to see you have posted an update but then can't believe what the two of you are having to go through on a daily basis. Surely, surely the tide will turn and you'll begin to get some relief.
I wish I was able to give you advice or suggestions to help, Bell but unfortunately I can't. All I can do is offer my love, thoughts and best wishes that things improve and your load is lightened. You are an amazing woman but I know the strength just keeps coming when you are caring for the love of your life. That being said, Bell please be gentle on yourself and make sure there is some 'Bell time' in the midst of the chaos.
Hats off to Paul who, on top of everything else must be distracted wondering what else is going to be thrown at him.
Please take care. Love and admiration to you both
Deborah
x

Wow Bell, this is just dreadful. I second everything Deborah says. I too do not have any advice but want you to know I am thinking of you. I admire you so much.

Much love to you both

Bell and Paul,

It's just one thing after the other. Admire your spirit. Keep going and hope things get better soon.

After reading your post I am saying to myself I have nothing to moan about today, thinking of you both.

Best wishes and take care

Ken

Dear Bell and Paul

Your bravery and determination continues to inspire. Hope Paul is gaining strength and is able to get around a bit better now and that you get some more definitive answers to your questions this week

Yes Bell I have been on Chaz's bike but am rather relieved that Alex has arrvied for the summer -he is a more enthusiastic passenger :-).

Warm wishes,

Cathy