sorry to hear this Bell haven't been on much having problems with my computer . am thinking of you both xx

Hi Bell
I've not had access for a couple of days and have just arrived home. First up (after a big sleep!) was to check to see how you are but alas! you've not posted.
Hope you're OK. Thinking of you from way down here.
Love
Deborah
x

Hi Deb's,lovely to hear from you and look forward to hearing all your news .Been a busy week but they have been working hard with Paul and have now got him going with a Bananna Board !! great thing looks like a fat flat Australian Boomerang .Took measurements of our own bed and then then they put hospital bed to same hight and added cushion to a rather wondeful Rolls Royce of a wheelchair which he will bring home .Anyways ,he slides first part under his bottom then slides down it into wheelchair or commode and does the same back up into bed etc.He is really doing ok with it and will bring him home today so just a little bit nervous but I know we will manage .This will be for 4 weeks then they will collect him and take him back in to remove both plasters check and then replaster bringing both feet up in stages from pointy position to a flatter one etc then will do the same in annother 4 weeks then another ,so will be 3 resets till they hopefully heal successfully .

If things heal well ,could be after 4 weeks they amy incorporate walkers into plaster which would make things a lot easier .

They had discussions with his ENT Specialist who said they could not use blood thinning medication or injection becuase of recent haemorrage and could also cause Tumour to bleed, so have opted for the Aspirin . They are worried about the DVT aspect because he is older and unwell and both calves immobilized .Have been given a list of things to watch out for and this is really what is frightening me most .Becuase his pain control is so good he did not feel pain when tendons snapped .So will not really feel any discomfort in his legs if a problem arises .But will feel extra heat or swelling which I would notice in his toes or legs .

However as my daughter said it would be the same for anyone in this position so just need to be vigilent .Well, going to have another cuppa and make sure I have the house already for him and wheelchair friendly as I am sure in a couple of days he will be trying out some clever moves and then the furtniture may take a good bashing ,lol.He is in a very positive mood and concentrating on this new set back.

Will let you know how things go .

Love Bell x

i am humbled in the face of such true determination and bravery

love to you both
liz

Hello , Life here been very busy and not had much spare time.Thank you Cookey for your kind words.Paul is trying so hard and I am amazed at his strength and courage .Things were going fairly well and Paul so cheery and positive but because his skin is so thin and circualtion poor he bruises very easily at the slightest knock and now his poor bot is showing signs of pressure sores .We have now got to do extra trips on and off the bed every 2 hours in order to help circulation ,have been given special spray and cream to use and expecting delivery of pressure mattress on Monday .Yet another concern that has now appeared.This will now add another 5 inches to bed height which may not be achievable but have said to make it a single with the idea of him getting in at my side and then shuffle accross on to it .They have said they will give us a hospital bed but Paul not happy about this as he loves our own bed and we all know they don't do doubles,lol, so will need to see if he can manage this .

So hoping they can get walkers on in a fortnight which would make a difference but not sure if this will be the case .Once again his chest is playing up so back on another anti- biotic .Seems to be this is going to be an ongoing problem.12 weeks now seems such a long time away and still no gaurentees how well they will heal.

This last week has not been so great and we are turning into Hoddit and Doddit ,but are managing to guddle through and still make jokes .I hurt my back when Paul stumbled and second achilles ruptured.So we are a couple of old crocs at minute .My back is on mend and Paul superman at boarding on and off bed and commode .He has become really proficient with his wheelchair so I do not have any heavy lifting .

Well this is our news at moment and hoping next week will start to pick up a bit .

To Ananth ,thank you for your kind thoughts and we look forward to seeing the rest of your film and also we would love to read your book .Keep up all the good inspiration and I am sure Sonya is keeping a good eye on you what a lovely couple you make .Printed off for Paul to read and the girls managed to sort my computer so we could take it upstairs and let him watch .He was so annoyed when the clip finished after you spoke about the coffee incident as Paul has been having this problem so he is waiting to find out what you said about this.

Best wishes to everyone ,

Bell .

Hi Bell
Great to hear from you and to know that you're hanging in there.
We were so lucky that we were able to swap beds with our daughter to make things easier for Trevor getting on and off the bed. Ours is very high so would have taken a fair bit of pressure off my back, but the lower one was best for Trevor to manage. When I commented about hospital beds being singles, I was told that wasn't the case. Might be worth following up.
I have just arrived home from a week in Queensland and stayed last night with Trevor's sister. She was telling me about a board they had for their bed when her husband was sick. It went under the mattress and had the overhead ring attached and also a pole that he could grasp with his weaker hand (he had had a stroke). With both things available Frank was able to take a good deal of his weight when he had to be moved. It sounds like the benefits of a hospital bed in your own bed.
As I said, it's great to hear from you ~ I check the board every day but you've not been there, except in your role as support person extraordinaire!
Love to you both
Deborah
x

Hi Deborah ,great to hear from you ,just been a bit busy here and not been on as often to catch up properly with everyone as I know you will understand .They have been excellent here with Paul's care and helpful with all the bits and bobs we now need so I can't complain .Paul has lost quite a lot of muscle strength so does not have a great purchase with his arms so the babanna board is working ok ,the 2 flipping plasters on his legs are the bug bear but he is managing ok .

Last couple of days has brought quite a lot of pain break through in back of neck which has become somewhat changed in shape and also very swollen so pain medication being tweaked at moment and because we have to go back and forth from wheelchair to bed with the start of pressure sores it causes more strain on his upper body and neck.

I think Australia must be more liberal because when I mentioned a double bed I got the LOOK !!!.Paul does not want to move bedrooms because we have such a lovely view of the golf course and sea and it is so beautiful and cheers him up .If I move him to one of the girls old rooms he will be looking at walls and nothing exciting.The wheelchair people are making him a chair that is 5 inchs higher and also more support at the back for his neck so that should help getting him into bed once pressure mattress arrives on Monday .

Bye the way we are still waiting to hear about the wee project you hinted at Deb's so when are you going to spill the beans ?

We love to hear all your news and of course you sense of humour that you and Trev are so famous for .Oh, Paul says to let you now the rabbits are all gone and the summer flowers are all thriving.( Thanks to Elmar ) .

Well time for supper as Paul's appetite is never ending and if this keeps up his new chair will need to be sent back for a wider one .

Talk soon ,

Love Bell xx

Dear Bell,

I always read your updates and can't get over how calm and reasoned you appear in the face of such adversity. You are both shining stars. I do hope Paul gets the equipment needs to give him more mobility. He does sound as if he has been doing incredibly well.

We seem to have been keeping fairly busy and Chaz has been in good spirits, although I am secretly concerned about the return of night sweats which I hope are down to nothing more than extreme recent humidity.

Love to you both,

Cathy

Hello Bell
Lovely to hear from you and yes! I do believe I understand completely how you are and just what you're involved in right now. As tough as times are it seems you are doing a great job and I know that you and Paul would be making the most of everything.
We are a fairly laid back mob down here Bell but believe me we have plenty who would also turn up their noses at the suggestion that you may like to lay close to your loved one no matter how rough the road you're travelling. In saying that I was told there are double hospital beds, I must say I have never seen one. Probably the worst thing about Trevor going to hospital was the fact that from then on we were 'apart'. While he was at home I could lay down with him and cuddle up whenever we wanted. He didn't have to feel so alone. Why isn't this taken into consideration with Pall. care beds?
Well, Bell (I'm a poet!) you asked about my 'project' and if you look at Trevor's thread you'll see what it is. I feel quite nervous about it because I have never done such a thing in my life! However, I'm very excited at the prospect of a great turnout. Should be a lot of fun. Here's hoping ......
So the mad woman with the broom won out in the end, did she? I'm glad you have your garden back and the poor bunnies have moved on .....
I'm very excited to have bulbs popping up everywhere. Today I noticed there is a fat bud on one ~ a jonquil. The ones that have steamed ahead are probably mostly daffodils so I'm still to be surprised by the ranuncs and smaller ones.
I am back to work on the 13th July so for the next two weeks I have a whole pile of jobs to get through. With the rain we have had I now have a half acre of knee high grass (or weeds might be a better description). Loads of other things to sort through as well so it will be go, go, go.
Our son Jack married on the 31st May and I have pics from my holidays and of course the 'TATT'. I need to find out how to get those loaded onto the album. Probably a bit boring but someone might like a bit of a sticky!
Tell Paul he isn't alone in the appetite stakes. Eating and sleeping ~ the two things I'm best at! I now have to shed a whole pile of weight if I am to fulfil my plan (as outlined in Trev's thread........)
I'm off. Take care you two.
Love
Deborah
x

Hello ,just a quick update things here a bit difficult so not having a lot of spare time recently to brouse through all the posts as in the past.Paul's chest infections becoming more prolific and have said that they may need to rethink peg tube as he appears to be constantly aspirating even though he is trying to eat as slowly as possible with the stage 2 and 3 feeding and thickners .

They are going to now try an anti biotic regime used for patients with Cystic fibrosis to try and give him as long as possible eating and drinking .

The chest infections are bringing him down making him exhausted and weak and his voice is now bearly audible , so possibly some more damage from Tumour, back of his neck is not so great either but pain medication has been changed .Although this helps with the pain he hates the feeling of being doped and also not mobile at all with plasters is not helping .The social aspect of not being able to use phone and trying to hold a converstion is very frustrating for him and takes a lot of energy to even have a short conversation .His hearing has also deterioated very badly over the last week or so and even his new hearing aid not working as well.Praying he does get some kind of walkers next week which will enable me to get him outside for a little while to golf couse to watch even for an hour but will need to wait and see ,will find out next Thursday .Fingers crossed.

Reading all the excitement of your visit Deborah has really lifted the mood on the forum but need to say that I am not in a position to organize a get together here in Scotland as life here is on a day to day basis at minute and looking and planning ahead is not an option .It is pretty much 24/7 with taking care of Paul and each day and week unpredictable with emergency trips to hospital with bleeding or another infection so planning ahead is out of the question and we deal with each day as it comes.

Look forward to reading about the build up for this fantastic visit and all your plans .would be great if someone could take a short video diary of this great event and Vinod could put it on forum for thoose that cant take part to see.

Love Bell .

quote:

would be great if someone could take a short video diary of this great event and Vinod could put it on forum for thoose that cant take part to see.

What a great idea! Dr J and Krishan - are you listening?

Best of luck to you Bell through these tough times.

Mimi

My husband, Pete, who has registered for the walk with me, would be happy to bring his video camera along and make a short film to post on the site, if it is possible to do this. He has recently made a short promotional film for another group, so has had a bit of experience (it took us a whole weekend to edit several hours of footage into a 15 minute film, but it was fun to do!).

Bell, sorry to hear how difficult things are for you and Paul. Do hope you are getting some respite and that Paul can get some relief. Thinking of you both.

Love

Gwyn

quote:

.would be great if someone could take a short video diary of this great event and Vinod could put it on forum for thoose that cant take part to see.

I am in Toronto for the IAOO conference later this week but am listening ..... as always .

Best wishes

Vinod

Well,whilst you're there Dr J, could you possibly whip up a bit of Canadian enthusiasm for the TIFC as we do not have a Canuc respresentative and get them to pass the hat round.

Atta girl, Angie.
Just in case you don't have a hat, Vinod you might like the put the following up on the whiteboard ~ http://www.justgiving.com/TrevsInternationalFanClub just to tweak people's curiosity .......

This message has been edited. Last edited by: Dr Vinod K Joshi,