Gutted !!! still gutted!!! update pg 3

[jjk]

I hope its good news today

 

[irongirlof12]

hope it goes well for you today -

 

[Tinks1984]

Good Luck for the appointment today Louise & Cameron

 

[mumloveseeyore]

good luck, thinking of you

 

[poppie123]

Good luck for today, I really hope it's good news

 

[tennisfan]

Good luck for today Louise

 

[jamjar84]

Good luck, I will keep everything crossed for you.

 

[strawberry blonde]

I'm keeping everything crossed for you Louise as always. Really hope you get some positive news as it's long overdue.

 

[stitch&ariel]

Good luck for today I'm sending all my best wishes

 

[higgy66]

Hope it went well Louise - thinking about you all

 

[wils]

Thinking of you

 

[buzz for boys]

Well I have good news in that we came home with an eye in and its pretty definite that the growth is scar tissue but the consultant said although Cam needs the operation now they do not have theatre space anymore for the required length of time so it has gone to the trust to be approved ????? Not really sure what to think to that as he also said that he could cancel 3 other procedures to gain the time so surely its his choice then and the other kids are coming first and he is just hiding behind hospital protocol. They did say that as the infection has cleared it is no longer seen as life saving surgery so they can take their time arguing for theatre space.But then he said if the infection came back it would be emergency operation I went mad at that as they dont have to watch Cam in pain or anxious to the point of distraction because he doesnt know what is happening. Im seriously contemplating complaining about our care for the first time ever - just feel like we are being side lined as insignificant

 

[Chilly]

That is great news it is just scar tissue.

I know it must be terrible for you to see Cam in pain but I can see it from the other side, the doctors must have a terrible time deciding who should go first for ops and stuff. Still you have to think of Cam so you fight to get him what he needs like any loving mother would

 

[Dimplenose]

That's good news that it's just scar tissue. But it's frustrating that you are no further forward in knowing what's going to happen next.

 

[buzz for boys]

That is great news it is just scar tissue.

I know it must be terrible for you to see Cam in pain but I can see it from the other side, the doctors must have a terrible time deciding who should go first for ops and stuff. Still you have to think of Cam so you fight to get him what he needs like any loving mother would

My frustration is that I feel that they bump Cam to keep up with government guidelines and waiting lists - Cam is on no official waiting list as its still under continuing care for eye cancer!!
The procedures they are doing are never going to be life threatning to the child unlike cams and the procedure they are doing to cam is not without risk and I just would prefer him to have the best chance of recovery and that is if its done with no infection and Now !!
2 months ago we were told we needed a miracle to get to Christmas its now January we have apparently witnessed this miracle but we are going to play russian roulette as to wether we wil be in the same situation by the end of next month !!
I dont blame the drs I blame the hospital and the beauracy which is stopping my child getting the care he deserves.

 

[thelittlemermaid83]

Can you not go to a different hospital Louise?

 

[buzz for boys]

Can you not go to a different hospital Louise?

Well technically yes but there are only 2 centres who deal with Cams condition one is Birmingham which is where we are at and the others in London - so if you think we went to hospital last year 31 times with Cam its not really feasible !!! I would if i could !

 

[Tinks1984]

Oh Louise, life really is a roller-coaster for you guys First, the great news that Cameron's growth is scar tissue, only then to be told the news about the operation. I bet you don't know whether you're all coming or going these days. Such a terrible shame. You all deserve so much more.

I hope the 'council' at the hospital make the correct decision and quickly. Least then you'll know what path you're taking. More pixie dust and hugs for you guys x x

 

[buzz for boys]

I know i should be elated !! We were told he has no sign of infection,its only scar tissue and we came home with his eye in - first thing this morning that was all I was hoping for.

But somehow knowing that we have to fight the very people who we are most grateful too -they saved his life what more could you want?? - its just so unfair !
I feel guilty for feeling like Cam is more important than another persons son but I cant help it and I can guarantee if I turn up there and see who is getting these procedures thats its all daft little stuff like unblocking tear ducts stuff that really would make little difference to these families if they were bumped for a week. Wooo thats really selfish isnt it !!

maybe I just want too much and i need to just accept that our life will never return to what it was before diagnosis and just shut up and put up ??

 

[Tinks1984]

No, no, no Louise. Your son is just as important as any other persons. Every Mother would be the same. You only want what's best for Cameron and you've all been through that much you just want to try and have some 'relaxing and peaceful' times for you all.

I don't think you should have to put up with what's happening - and certainly don't shut up! You need to voice your opinions, if not in a harsh way, but certainly let them be known. I'm sure the Doctors and Nurses don't wish to fight either, they, in the long run, want what's best for Cameron also, even if this does not feel so at the moment.

As I've said previously, you brave lady, I don't know you personally but I feel very proud of the way you've dealt with things that you've told us about. You are amazing

P.S If you'd like another buddy on Facebook, then feel free to PM me and I'll add you for some more rants along the way I don't mind listening.