The (not so old) Crocks Cafe

TOBRUK

Hello everyone how are you all today? Bluedog, welcome back :hello:sound like you're going through it, hope they're going to sort out your ulcers and gallstones. Are they planning surgery?

Puzzledbubbles, hope your ultrasound goes well today and that they will tell you something today. Thanks for your good wishes. Well, hope on Monday your GP can sort your pain out but with the side effects your having with the D.H.C tablets it doesn't sound as though she'll up the dose, although with taking double the dose that you are taking I still have pain.

Cwta, I can't believe that the consultants aren't taking any clinics for 2 months!! What the hell is going on?!

I actually made it to bed last night!! Now there's a novelty Ha! Not feeling too bad today ... so far anyway, although feeling rather exhausted. I saw the surgeon yesterday and had very good news, the result of CT scan showed it was clear, no sign of any tumours. :j The surgeon was lovely as ever and even though he gave me this news he was in no hurry to rush the appointment.

He showed me the pictures of the tumour (it was quite big, around 3 and half inches!) he removed explaining everything in the pictures (what everything was etc) and said that I didn't need another appointment. He said that the pain I'm having now is post surgery and he hoped that it would get better soon - it just takes time. However, he said if ever there is anything in the future to contact him and he would see me! What a lovely man he is.:) So that's one thing less to worry about.

Tomorrow I go for an MRI scan.

Hope everyone has a good day.:)

Jojo_the_Tightfisted

Thinking about it SingleSue, unless your son is actually in hospital unable to move because he's in the middle of surgery, I think he should be encouraged to go on the trip. He may need extra splints, physio with a purpose (always good for motivation when the exercises hurt), but most problems can be overcome by planning and lateral thinking.

Taking a positive attitude, it's something he will remember for the rest of his life and may take his future into amazing directions, possibly with being able to recount the entertainment value of completing the last week with a chunk of rainforest as a walking stick/splint (but that's the sort of thing that happens).

With suitably designed equipment, he may end up looking more like a technopunk, but compared to the grey and beigeness of most assistance gear, that can only be a good thing. At one point, I dyed bandages black just so they were different and the one thing that people remember about me at junior school was that I had a really mad metal cage type thing on one hand, trying to straighten a finger. Nowdays, I'd probably get someone to make one that looked more like robotics, rather than less.

On a more serious note, what if his condition gets worse as he gets older? You don't want to overhear him say when he's 35:

'Oh, I had the chance to go on one of those expeditions once, but my mum said because the doctor pulled a funny face, I was too fragile to go. Wish I had gone then as I can't now. They kept on saying 'maybe next time'. Well, there never was one.'

He could be secretly carrying a fear that he's going to end up still living at home when he's 45 or stuck in a bedsit down the road unable to do anything without relying on his mum coming round to help him get dressed. His mates could be talking about wanting to work abroad, backpacking around Asia, and he's not convinced that these chances are available to him, that his life is going to be grey, boring and pretty much over before it's even started. But he won't say a thing about it, as admitting it would be yet another sign of weakness, just like asking for 'special treatment' during exams. He might really want to go, but is afraid of acknowledging it, because he's scared to want something so much, hence the nonchalance.

If someone had said to me 'yes, of course you can' and encouraged me, rather than tell me x, y or z wasn't for the likes of me, because of 'your bones', 'you haven't got the sense', 'you'll only hurt yourself', or even 'that's for boys/rich people/normal people' etc, I know my life would have been different.

So now I have my first passport sitting in a drawer, various splints, braces, bandages and surgical tape, a provisional driving licence, plenty of Uni coursework and a lot of stupid, risky and probably extremely enjoyable plans for standing up and raising my voice in an almighty squeak against the dark.

I'd like to imagine him telling the doctors 'I am going on this trip....' and ask for advice/help, rather than you saying 'I was wondering if it wouldn't be too hard....' and effectively asking for permission to do it.

Oscar_The_Grouch

Good afternoon all,

I've just got my DLA letter through - No medical - No fuss - No problem - No need to appeal. Mrs Grough is very happy and will be putting in her Carers claim straight away.

Then, just to make the day go with a bang, I fell down the stairs! Can't have everything going well in one day!!

SingleSue

Jojo_the_Tightfisted wrote: »

Thinking about it SingleSue, unless your son is actually in hospital unable to move because he's in the middle of surgery, I think he should be encouraged to go on the trip. He may need extra splints, physio with a purpose (always good for motivation when the exercises hurt), but most problems can be overcome by planning and lateral thinking.

Taking a positive attitude, it's something he will remember for the rest of his life and may take his future into amazing directions, possibly with being able to recount the entertainment value of completing the last week with a chunk of rainforest as a walking stick/splint (but that's the sort of thing that happens).

With suitably designed equipment, he may end up looking more like a technopunk, but compared to the grey and beigeness of most assistance gear, that can only be a good thing. At one point, I dyed bandages black just so they were different and the one thing that people remember about me at junior school was that I had a really mad metal cage type thing on one hand, trying to straighten a finger. Nowdays, I'd probably get someone to make one that looked more like robotics, rather than less.

On a more serious note, what if his condition gets worse as he gets older? You don't want to overhear him say when he's 35:

'Oh, I had the chance to go on one of those expeditions once, but my mum said because the doctor pulled a funny face, I was too fragile to go. Wish I had gone then as I can't now. They kept on saying 'maybe next time'. Well, there never was one.'

He could be secretly carrying a fear that he's going to end up still living at home when he's 45 or stuck in a bedsit down the road unable to do anything without relying on his mum coming round to help him get dressed. His mates could be talking about wanting to work abroad, backpacking around Asia, and he's not convinced that these chances are available to him, that his life is going to be grey, boring and pretty much over before it's even started. But he won't say a thing about it, as admitting it would be yet another sign of weakness, just like asking for 'special treatment' during exams. He might really want to go, but is afraid of acknowledging it, because he's scared to want something so much, hence the nonchalance.

If someone had said to me 'yes, of course you can' and encouraged me, rather than tell me x, y or z wasn't for the likes of me, because of 'your bones', 'you haven't got the sense', 'you'll only hurt yourself', or even 'that's for boys/rich people/normal people' etc, I know my life would have been different.

So now I have my first passport sitting in a drawer, various splints, braces, bandages and surgical tape, a provisional driving licence, plenty of Uni coursework and a lot of stupid, risky and probably extremely enjoyable plans for standing up and raising my voice in an almighty squeak against the dark.

I'd like to imagine him telling the doctors 'I am going on this trip....' and ask for advice/help, rather than you saying 'I was wondering if it wouldn't be too hard....' and effectively asking for permission to do it.

Huge thanks for that and it has certainly put my thinking into perspective.

Eldest is certainly of the "lets do it now" brigade, regardless of how much it might hurt him later, as was I at that age and I would not have given up any of my experiences (although none of them were as great as going to Honduras) despite it doing the extra damage to my body which makes me struggle from time to time now.

My nan was the same, at age 14 she was told she had a heart condition and that she was to do nothing, no dancing, no going out etc or it would kill her....what did she do? Well she completely ignored the doctors and went all out to enjoy her life..for another 76 years! As much dancing as she could do, as much fun as she could have, living every day as if it could be her last and she had a blooming great life.

I've said he can go but that he might have to have some things or treatment for it, he understands that and is now researching knee braces etc that he can decorate to make them look 'cool' which he is having a lot of fun doing. He also understands the risk he may be taking with his joints, he only has to look at me and my attitude when I was young, to realise the damage and pain that can be done...although even now, I tend not to allow it to stop me doing anything, in fact, I only think of myself as just having a few troublesome joints rather than being disabled in any way (hence why I don't claim anything for my joints - neither does eldest).

Careful_with_that_Axe

oscar That is truly wonderful news!The DLA that is, not the fall. *g*
Chuffed for you - maybe a wee celebration is in order?

Sue, JoJo managed to put very succinctly what I was thinking but couldnt put into words properly.

Tobruk - hope everything went OK with you.

I still have fun and games - there was a meeting at the hossie yesterday with senior management and the consultants to ask the consultants to put on more clinics and they refused! My complaint has now been escalated to the board. I am quite sneakily enjoying the intellectual challenge as I'm not clamouring for attention for myself, but for everyone who is in the same position as me. I bet I'm not alone in waiting for an appointment.
Apparently if there is a potential breach of the 14 days rule you get erferred to the private hossie next door and the same surgeon does the work but gets paid for it! Hmmmmmm.
Am caught in political in-fighting I suspect.

morag1202

Jojo_the_Tightfisted wrote: »

Thinking about it SingleSue, unless your son is actually in hospital unable to move because he's in the middle of surgery, I think he should be encouraged to go on the trip. He may need extra splints, physio with a purpose (always good for motivation when the exercises hurt), but most problems can be overcome by planning and lateral thinking.

Taking a positive attitude, it's something he will remember for the rest of his life and may take his future into amazing directions, possibly with being able to recount the entertainment value of completing the last week with a chunk of rainforest as a walking stick/splint (but that's the sort of thing that happens).

With suitably designed equipment, he may end up looking more like a technopunk, but compared to the grey and beigeness of most assistance gear, that can only be a good thing. At one point, I dyed bandages black just so they were different and the one thing that people remember about me at junior school was that I had a really mad metal cage type thing on one hand, trying to straighten a finger. Nowdays, I'd probably get someone to make one that looked more like robotics, rather than less.

On a more serious note, what if his condition gets worse as he gets older? You don't want to overhear him say when he's 35:

'Oh, I had the chance to go on one of those expeditions once, but my mum said because the doctor pulled a funny face, I was too fragile to go. Wish I had gone then as I can't now. They kept on saying 'maybe next time'. Well, there never was one.'

He could be secretly carrying a fear that he's going to end up still living at home when he's 45 or stuck in a bedsit down the road unable to do anything without relying on his mum coming round to help him get dressed. His mates could be talking about wanting to work abroad, backpacking around Asia, and he's not convinced that these chances are available to him, that his life is going to be grey, boring and pretty much over before it's even started. But he won't say a thing about it, as admitting it would be yet another sign of weakness, just like asking for 'special treatment' during exams. He might really want to go, but is afraid of acknowledging it, because he's scared to want something so much, hence the nonchalance.

If someone had said to me 'yes, of course you can' and encouraged me, rather than tell me x, y or z wasn't for the likes of me, because of 'your bones', 'you haven't got the sense', 'you'll only hurt yourself', or even 'that's for boys/rich people/normal people' etc, I know my life would have been different.

So now I have my first passport sitting in a drawer, various splints, braces, bandages and surgical tape, a provisional driving licence, plenty of Uni coursework and a lot of stupid, risky and probably extremely enjoyable plans for standing up and raising my voice in an almighty squeak against the dark.

I'd like to imagine him telling the doctors 'I am going on this trip....' and ask for advice/help, rather than you saying 'I was wondering if it wouldn't be too hard....' and effectively asking for permission to do it.

Whilst I agree with every word of this I must sound a word of caution.

I was a primary school Governor for 14 years and one of my areas of reponsibility was doing the Risk Assessments for school trips. When a trip was first mooted we did an initial RA and if it was a goer we'd then propose the trip to parents and get their permission. When we knew exactly who was going we'd do a detailed RA based on all the special needs etc. This RA then had to be passed by the LEA.

If it became apparent that staff could not cope safely with any any identified risk we'd either regig the trip (include extra help etc) or as a last resort we'd reluctantly refuse to take child. There could also be issues if specific Insurance was required.

Sue, before your son gets his hopes up, please make sure that when it comes to the crunch, the school will take him and will be able to get the appropriate insurance for him.

Jojo_the_Tightfisted

Refusing to take a child on educational visits because they're disabled?!!!!!!!!!!

Words fail me....

Invasion

Oh yes Jojo, last year at college I was told that the college couldn't get me transport for an educational trip to local hosp (as if I don't spend enough time there already ) because of insurance issues as I use a wheelchair... Had my dad not been around to take me I'd have been left out of v. educational trip due to my use of a wheelchair!

Invasion

Oh, and this is a college that has many differently disabled students accessing it.

Indie_Kid

Invasion wrote: »

Oh yes Jojo, last year at college I was told that the college couldn't get me transport for an educational trip to local hosp (as if I don't spend enough time there already ) because of insurance issues as I use a wheelchair... Had my dad not been around to take me I'd have been left out of v. educational trip due to my use of a wheelchair!

Could they not hire a taxi for you? I remember in 6th form, having to go to a different 6th form for a subject; as it wasn't taught where I was based. There was someone there who was a wheelchair user and he went to the other 6th form by taxi.

The rest of us went by minibus.