Serious illness

[ivas4us]

Hope everything gets better now for you Ida

[nursecrippin]

hope all is well ida, im also not to far away just over the bridge in bristol. Keep your spirits up hun you know where we are if you need us
Heidi xxx

[Ida Clare]

By some incredible chance I hava friend, a psychiatric specialist, a uni lecturer, he was actually a part of the initial testing of the PET scanner, it is , he says like a movie, psych tests were carried out on b***** flow, brain changes etc..........I asked him about this stuff we thought was fine and the scanner said was bad...........as far as we knew, it was in his gullet, prssing on his lung lining.........we expected it to be not so good re that.................the rest.............his jaw.......I am terrified, I mean.....................it might be in his jaw?

[Julie]

Jan, Skippy, I wish you lived nearer too...[;)]

Ida - it might be in his jaw but it MIGHT not be. Now keep your spirits up.

I totally understand you watching him sleep...its like watching a new born baby. You're so in love with this precious being.

xx

[Max]

Ida, our best man is a Consultant Radiologist - now I don't know if he would be willing to speak to you privately and tell you about the PET and other types of scan - doctors can be nervous about speaking to the patient or relative of a patient of another doctor but I will ask him if you like. J

[Max]

Ida, I've just come off the phone to our friend - he said that he knows Dr A Brewster of the Velindre Hospital and if that name rings a bell he will ask him if he would see you providing it does not cause a rumpus with your husband's consultant. j

[Ida Clare]

Elv.................THANK YOU!

We have been to Velindre once, on Weds gone.

MR Havard at Royal Glam is the surgeon, we saw him and he told us we won't see him again realistically until late autumn when chemo is over and the op is planned. We see a Mr Crosby at Velidre.

He is actually very nice, I disliked MR Havard, disliked but TRUSTED him, intensely, Mr Timothy Havard.

ANY HELP or info would be appreciated.

[Ida Clare]

Our friend that was a part of the PET scanner development studies said what I said, what we were told, the PET sees "wrong/bad" if it's set to some searches a pimple would be flagged up, it was looking for tumours/swellings, it found inflammation in both lungs - the man has had a cough, ok he has cancer and he is entitled to have a cough at the same time isn't he?

The jaw though, USUALLY cancer, and it IS a law unto itself, it hides and multiples like a curse........USUALLY it has a path, it goes UP from the oesophagus ALONG a path, it rarely jumps, a jump from 32 cm down into a jaw is HUGE, or it goes down and we KNOW it HAS NOT gone down, the PET and every other scan prove it hasn't. It usually needs a path a ligament, a muscle a connection to travel along, USUALLY other sites would display it along the way from top of stomach to jaw.

That said, we had the oh it's a bad back nothing else. Then we had it hasn't spread at all.

Cancer does what it wants and rarely shocks anyone is what I have been told.

[Max]

Ida,I'll do whatever I can - be in touch. J

[Ida Clare]

YOU will do wonders, you already have!

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My R, he likes the arrogance of MR Arrogant, trusts it, (my R is the same Isuspect at work and he isn't a doctor but he is a top civil servant)



We both liked Mr Crosby, my R was listening but this lungs thing...............too big and the spread we KNOW TINY Mr crosby said, same as he said the huge tumour in the gullet means nothing size doesn't equal danger! I HATED to pick it up but he saw I wanted to and answerd me.

[wonder]

Just thinking of you all at this time. Hope all goes well. Just dont know what else to say, but I have been following this post and I think about you all and you know anyone on here is here for you and others who said they will meet up if you wish. Just keep talking to us as this will help.

[Ida Clare]

I mean there, my R, he can't eat, he can abrely swallow water, he is sick, what he doesn't sick up goes down (sorry, I don't mea to upset here)

So anyway, the "thing" in his gullet is large, huge in terms of where it is and the fact it is blocking the tube.
The doctors say and thank heavens they DO SAY, how big it is doesn't matter, means nothing.

So I picked that up and asked re the lining thing.

[Ida Clare]

Wonder, thank you so much.

One day soon I WILL be able to help others here, I mean serious illness I might know a bit about.


I am so sorry to be so self obsessed. IVA it's hell, isn't it? The literal pound of flesh? It hurts in ways you never even imagined, your kids needing basic things real basics, and you have to say wait. Remember the snow? We had the heating on and then we all had to snuggle under sleeping bags and watch DVDs.

IVA is hideous, it hurts, it seems never ending.My littler girl adores animals, we lost an injured rabbit because we hadno way to pay a vet.

WE got within 11/10 payments each, our lives back..............saying YES to our kids.............our youngest, OBSESSED with Spongebob, she has this stationary ste. she will NOT use it,she can't remember a time when things got replaced.

WE lived for the day our IVAs were finished, we OWED the money we did it, we wanted to repay, we tried every way we could, we did it, and ow we can't you know, even if they sue me, I haven't got it, have no way to earn it and feed my kids......................never mind the mortgage, that I don't have.

Yep maudlin again.

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[ivas4us]

Ida, Wonder is thinking of you so much and so am I, wish we were closer and able to offer more help. I have had cancer as well and know that it brings a lot of emotions with it. If we can do anything at all please ask and we will always do our best to help.


Love to all your family.

We are thinking of you.

[nursecrippin]

Ida, dont panic hun i deal with alot of people who have had tumours in their jaw, there is procedures, and radiotherapy is also a very good option, the specialists will discuss all the options with you so dont worry, try and have a fun filled weekend

Heidi xxx