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The Worst Week of my LIfe


Simon Lee

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Guest jim s-w

Hi Simon

 

Theres nothing that can be said really. I cant imagine what it must be like for you and your family and all I can do is offer you all my best wishes. I'll be keeping 'em crossed for you all.

 

Jim

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Hi All,

 

Well the last 48 hrs have been a blur... at 1800 Tuesday we got a call "can you get to Hospital ASAP the operation will be tomorrow" quie a jolt but possibly the best way to do it as it all happend so fast there was no real time to start to ponder or start to worry.

 

So 9am Wednesday James disapeared into theatre and we were left to wait - never has 10 hours seemed like 10 years !!

we were told that he would be in theatre for approx 6 hrs so by 4 we were back at hospital having spent the time wandering round Sheffield in, it has to be said, a somewhat dreamlike state it all seemed so unreal. By 1700 we were alternating between blind panic - "whats gone wrong etc etc," to "well it will take ages its a delicate operation" parental panic/logic/ you name it we had it !! Finally at 1900 we were allowed onto the HDU and there he was bandaged up and lines every where but it was James. :icon_smile:

Groggy and sore our son had made it through !! He even managed a very croaky "hello" Needless to say we slept well last night.

 

Today he's made good progress, so far no problems with possible side effects, though its early days yet now we just have to wait for the results of the tests on the tumor. We knew things were looking good when a croaky voice announced "Im bored of been in hospital" then promptly went back to sleep. If you can see a stupid grin on my face thats why !!

 

One thing I must say to all of you who work in the NHS your heros, everyone we have come into contact with at Sheffield Childrens Hospital couldn't have been more helpful, caring, and just brilliant. One of my abiding memories will be the night James was admitted, a young staff nurse sat with James for a good 15 minutes going through the Hornby catalogue together to help take his mind off things, discussing which livery was better East Midlands Trains or Cross Country.........

 

Thanks again for all your support.

 

Regards

 

Simon

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Hi everyone,

 

Well James continues to make good progress, yesterday he was still very lethargic Though was very grumpy which we took to be a good sign as he kept saying he was fed up !!

 

Today we walked in James was sat in a chair eating his lunch, the nurses who he seems to now have wrapped round his finger had got him bathed, changed and up into his chair, he managed about 2 hrs sitting before he was ready to get back to bed for a sleep, Carol stayed with him tonight, and it appears after recharging his batteries he was ready for tea, and was planning his evenings TV viewing !! He really has made incredible progress we are amazed how well he has done. All we are waiting for now is the results from the biopsy on the tumor (fingers crossed on that one)

 

To keep my stress to a minimum we've been going to and from Sheffield by train, today we hit the jackpot of cancellations, got on the train at our local station (Kirk Sandall) arrived at Doncaster sat for 10 mins after departure then "all out cable theft at Mexboro" so we ended up on the express bus. Coming home I arrived Sheffield got on the train, 5 minutes after departure time "train cancelled Fatality at Meadowhall" back to the bus station I went !! Best of it was if things had been normal, I would have been on duty in Control at DBS today so would have had the aftermath to deal with there !!

 

Regards to all

 

Simon

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Good luck Simon, we lost a good friend of the family to a brain tumour about 20 yrs ago, when there wasnt a known, and it wasnt deemed operable, cure. Its good to know that although these things seem desperate medical advances are progressing, despite the negs the press would have us believe.

 

-wishing you and family all the best.

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Simon - as someone who had continuous dealings, over several years, with the Sheffield Childrens Hospital many years ago ( in their old location), I can only say "He couldn't be in better hands" - the staff then, and apparently now, really are "The TOPS", and actually CARE. Glad to hear he is responding well.

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Hi all,

 

Well the last three weeks have been a busy!! James was sent home a week after his operation, in high sprits after making a determined and sucessfull attempt to get strong enough to come home, he amazed the doctors and nurses with his spirit and will, considering the operation he had.

 

After a few ups and downs he is now making sure and steady progress, although obviously very tired, and suffering regular headaches. He has some days when he is clearly depressed, this seems to be caused by his frustration that he is so weak.

 

As something to look forward to we now feel confident enough to sort hoildays, so next week we're off to Kent to stay with friends, and in August 2 weeks in Somerset close to the WSR, that news really put a smile on his face !!

 

As regards the tumor, initial tests indicate that there are no aggressive cells, but some abnormal cells remain to be identified, these are subject to stain tests at the moment and we should have final results at the end of April when it wil be decided what to do with the 20% - 30% of tumor that could not be removed.

 

Once again thanks for all your messages of support.

 

Regards

Simon

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That is very good news - which has brightened my morning. Even though he obviously still has a way to go, it is good news that James is making such good progress.

 

Enjoy Kent - it is a lovely part of the world, and while you are down there try to fit in a visit to the K&ESR and the Spa Valley Railway. Both worth a visit!

 

You all remain in my thoughts and prayers.

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I'm sure there are lots of members, like me, who haven't posted because they've had little to add.

Nevertheless we are all delighted that there is some good news.

All the best to you and yours, Simon.

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I have somehow managed to miss this topic until now.

 

The lows and highs of such things are the extremes of life and bring out qualities in people they were not aware of having before. All the emotions - anger, frustration, worry, desperation, hope, joy, laughter, tears and anything else you may feel are all NORMAL. Don't let anyone tell you otherwise.

 

The hardest part is to share your story. That you have done admirably and if there was a "Hats Off" icon I'd post it.

 

I have just emerged from the shadow of sudden and serious illness myself; it is not so long ago that a close friend required brain surgery for a tumour on her optic nerve. I fully understand how hard these past few weeks have been for you all. These things occur without rhyme or reason. The outcome is often good in the end thanks to advances in treatment. We have a lot to be thankful for.

 

My good wishes extend for a full and lasting recovery and for the healing of the emotional scars which this sort of thing leaves with the families and friends involved. Not only do you have good friends here who freely offer support (myself included) but there are also professional support agencies which can be called upon any time they might be needed. Not just now but at any time into the future. There is no embarrassment nor stigma in talking with these people. It is no loss of dignity nor manliness to ask for support. Rather it shows strength of character, love, warmth and generosity in that you are at a point where you wish to share things.

 

No matter how rough the road you never travel it alone.

 

Please accept my best wishes.

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That really sounds like good news, Simon :) . I keep wishing you and your family all the best, and am sure the excursion to Kent will be just the right thing - been there twice myself!

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Guest Dutch_Master

Delighted to hear your lad is on the up, but I do have to warn you that at one time, he'll probably have a fall-back. It's then that he needs your support most and it will be very hard. It's good to have a positive attitude, but be aware of false and/or premature hopes...

 

All the best!

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Simon,

 

I only came across your posting today. I read every posting as I'm sure others did with a sense of anxiety, fear and then relief. Thank you for letting us all be so involved with James and his, yours and Carol's feelings. It will surely help other people in similar circumstances, God forbid it should ever happen. But these things do. I'm sure I can speak for us all in saying how much we admire you for finding time amidst all your domestic and emotional upheaval to find time to read our postings. Best wishes for a bright future for the family from now on; each day at a time and may each day be a true blessing.

 

Steve.

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