The Worst Week of my LIfe

[Simon Lee]

 

This time last week, all seemed good, week ahead was two days on a course, one night shift then 5 rest days.

 

Then on Wednesday, our life fell apart when we were told that our 15 y/o son has a brain tumor. I've never known so many emotions go through my head so rapidly, Sadness, Pity, Anger, Rage, you name it I felt it and so did my wife.

 

The consultant told us as kindly as he could, then came the question how did we tell James ? we opted for the truth, even though he is Autistic, he deals with the truth far better than pussyfooting around, so we bought him into the room and again went through it all with him. We all saw the results of the MRI scans and to see the little white blob that could cause untold damage - God I hate that thing, to look at James head and know that inside is such a vile little piece of s@"t that could cause him severe damage or death really makes me so mad....

 

Needless to say we came home absolutly shattered,Carol cried for hours once James was in bed, I can't cry at the moment Im still so wound up.

 

Yesterday we had a call from the Hospital, after a case conference, it has been decided that the best course of action with be to get the damm thing out, so next week we go back to see the Neurosurgeons to talk about whats going to happen. Yesterday that seemed a relief but today that gut wrenching weight is back in my stomach.

 

Today James finally broke wanting to throw things, punch me, biting himself snarling, all totally out of charachter as normally he's a very placid lad.

 

I guess in amongst us all there is another of us whos been through the same ? If not I hope that no one else will have to go through what we are going through.

 

Regards

 

Simon

[PhilH]

Simon, I really don't know what to say apart from the fact that my heart just goes out to you and your family. I hope and pray that whatever course of action is decided on is successful, that the prognosis will be an optimistic one and that you, your wife and son will be able to get back to your family life as soon as possible.

Phil

[Western Stalwart]

Thinking of you all and pray that any operation will be successful.

Best wishes, Mark

[Andy Y]

I genuinely feel for you Simon. If there's any consolation it's that they've got a diagnosis and a plan and that there's something to put faith in.

 

Wishing all of you all the best.

 

 

[D802 FORMIDABLE]

All our best wishes mate, Hope it all goes well

Anthony and Family

[RedgateModels]

Our thoughts are with you

 

Ian, Andrea, Josh & George (two lovely autistic boys)

[Adams442T]

You and your family will be in our thoughts Simon. Next month will see my 5th year of remission after surviving a major invasive tumour in my shoulder and neck, and I shall be eternally grateful to the great NHS staff who helped see Elaine & I through it.

 

NHS Surgeons and nursing staff at the sharp end of serious illnesses are still up with the best in the world.

 

The very best of luck to you.

[Leicester Thumper]

my thoughts are with you, and i wish you the best of luck.

 

i will keep my fingers crossed for you guys and i must say stay strong, and you are doing well from what you have said, it's not easy living with an autistic person normally (i know myself as i have Asperger syndrome) and i can appreciate how difficult things will be for you so all my sympathy and thoughts will be with you.

 

best regards,

Bruce.

[NGT6 1315]

Simon,

 

even though I do not have any children myself I can well relate to how hard this must have hit you and I, too, strongly feel for you. And I think it also is perfectly fine for you to uncork the bottle - figuratively speaking - and let out all these emotions, lest they eat you up.

 

But as Andy said - at least there is a name to the problem at hand, and thus something to work from - hard as it may be to feel optimistic, right after a diagnosis like this.

 

All the best to you and your son!

[Robert]

It would be flippant of me to say I understand what you are going through - but having a son myself, I do understand that a parents love for a child is like nothing else.

 

My thoughts and prayers are with you, and all your family, Simon.

[shortliner]

Having been through a similar sort of thing, many years ago, I really feel for you. May whatever god you believe in, bring you, your wife and your son through this successfully.

[BlackRat]

My very best wishes to you and your family.

[Coombe Barton]

Not a lot anyone can say except to offer support and sympathy.

[45156]

News like that certainly puts everyday problems into perspective.

 

May I add my best wishes to those of my fellow RM Webbers. As Andy said, there is a diagnosis and a plan - so let's all just wish you well for that plan to work out and to give a positive outcome.

 

Kindest regards

Stewart

[smudgeloco]

Life is filled with sadness. Each day I read of something that truly saddens me, and this I guess, is today's dose of sadness.

At least there is some hope for your son, so let's all try and be positive about it.

Thinking of you and your family.

[Simon Lee]

Guys,

 

Thanks for all your messages of support, it means a lot and we really appreciate it.

 

At the moment we are carrying on as normal until we are advised otherwise. That in itself make the whole thing seem so unreal, to know that the tumor is there yet nothing has physically changed in the way we are carrying on. I suppose its the way we cope as human beings.

 

Not so say James hasn't been the recipient of a few extra treats, when we thought it was just a normal second MRI scan to gain extra definition to he brain (as we were told)he was promised a Hornby Maunsell coach as something to look forward to, needless to say by the time we got home he had three !! Plus when the scan was taking place James was watching a DVD - Southern Electric which was a christmas present.!! If there is no change Im been pestered for a trip to the Mid Hants Gala this weekend - thank goodness for Free Travel.

 

Once again thanks for all your good wishes, and I'll keep you posted how we get on.

 

Regards

 

Simon

[PhilH]

If there is no change Im been pestered for a trip to the Mid Hants Gala this weekend

 

I'm driving on the Saturday, if you are around say hello - I'm the scruffy one with the beard and black beret.

[St. Simon]

Hi Simon,

 

My thoughts are with you

 

Wish you all the best

 

Simon

[Guest Dutch_Master]

My visits to the W&S forum are few and far between, so I just noticed this. A bit late, apologies...

 

IMO you did the best you could do for your lad: keep his daily routine intact. That's important to him and he senses the tensions from you and your wife on his well-being. It makes him even more suseptable for thoughts that it's all his fault (which we all know isn't the case!). Inform the family (I suspect you've already done that) but emphasise they necessity to act as they would normally do in his precense. Again, it's something autistic people are very sensitive about. So, how ever much you want to spoil him, resist that urge if you can. But rewarding him after difficult procedures remains recommended, as he'll associate these difficult moments with something positive, like a new toy or something as simple as an icecream

 

The final thing to say has to be my unreserved sympathy and support for you, your wife and son. I really hope medical science finds a way to remove whatever shouldn't be there safely and w/o affecting his abilities negatively...

 

PS: do note I have no medical qualifications, but do have some experience with autism in the past.

[SIMBA1OFF]

Hi Simon

Your family are in my thoughts.

Mark]

[iL Dottore]

I am saddened to hear of this news, you have my support and sympathy.

 

In addition to the support you should get from your medical team, you may find the following two links of some help to you and your family: Macmillan Cancer Support (http://www.macmillan.org.uk/Home.aspx) and Cancer Research UK (http://www.cancerhelp.org.uk/index.htm).

 

Additionally, the US NCI (National Cancer Institute) is an excellent source of up-to-date information - some of which is fairly technical and detailed (http://www.cancer.gov/)

 

F

[Simon Lee]

 

Gents,

 

Thanks for all your messages of support both here and via PM, really do appreciate them.

 

We met with the Neurosurgeon on Friday, and James will be operated on within the next 10 days. The initial though is that the lump is non malignant, but of course nothings 100% until its out and been tested. Were focusing on that, but always mindfull nothings guaranteed. As always the surgeon give us a long list of risks, the majority not nice but with a very low % risk factor. Then of course you start the doubts is it fair to put James through it supposing this or that happens, you can easily tie yourself up in knots just thinking of all the options.

 

Its amazing how detached I've become from everyday life and exceedingly intolerant of some other people. One thing that I found really unreal, was talking to the surgeon, it struck me that in a few days he will actually have his hands inside James brain !! seems so outrageous as of the entire human boday the head/brain area seems so untouchable.

 

As always thanks to you all for your support and I'll keep you posted as things progress.

 

Simon

[reevesthecat]

Hi Simon

my thoughts and hopes are with you and your family. I am a district nurse but previously worked on a ward for many years. Regards consent the surgeon has to tell you all the risks to ensure you all understand and that the consent is valid. As you say the % is low but they are only following procedure to make sure they are not sued by the ambulance chasers.(I am not suggesting you are by any means).

I hope everything goes well and he will probably deserve some wagons to go with those coaches!

mark

[Guest Dutch_Master]

Given your remark on the intolerance to other people, you are advised to inform your employer of this sad situation. That way, if you clash with someone (either a collegue or customer) he knows the cause is not from bad intent but from James' condition... If push comes to shout, he can even give you a day (or more) off and with your consent can inform the other party about the situation. Most employers are very sympathetic if you inform them in advance. Your employer may even take prevasive action and assign you to a job that you can handle properly.

 

All the best chap.... :icon_sad:

[37114]

So sorry to hear your bad news and hope he makes a full recovery. I won't even pretend to know what you are going through, I have a 1 week old son in Hospital who is now on the mend but at one stage was very poorly and not responding to treatment, it was horrendously distressing, no parent should have to go through what you must be going through.