When it seems like the world hates you...

Less than one minute read time.

FormerMember

8 Mar 2010

I've now not had any treatment since August.

I went to London nearly 7 weeks ago for a consultatin with regards to going on a trial, because chemotherapy didn't work, and I can't have anymore radiotherapy, and the hospital down there (Royal Free) had to get funding from my local PCT.

I've now been waiting all that time, and my PCT only met last week. Just had a call from the Royal Free to say my local PCT haven't decided, and need more information before they can decide. So now I have to wait even longer for a decision.

I just feel like im so unlucky, and that im being ignored, and never going to get any treatment.

I think I have another lump in my neck, and im so paranoid it's all going to spread and be totally untreatable.

I'm going to phone Christies tomorrow and try and get an appointment, because I just cant deal with this anymore :(

FormerMember over 15 years ago

Oh Crikey - they really are dragging their feet. This must be awful for you.

I hope you get some answers when you ring them tomorrow. Surely they can't keep you waiting like this with no answers.

Think of you.

Jo
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johnr over 15 years ago

If you can cope with the hassle write to your MP asking why your PCT are dragging their feet given the urgency of your case.

hope its not too much longer you have to wait.

take care

john
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FormerMember over 15 years ago

This sounds a shocking situation - you should not be left worrying about things like this. If you have no luck with the hospital, if I were you I would be on the phone to your GP and say that you are really anxious about the lumps on your neck and your situation generally. Perhaps do this anyway?

Do you have Macmillan involved? Mac nurses can be very good at getting through red-tape and hastening things along.

I wish you the very best of luck, Grace
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FormerMember over 15 years ago

you know what. if your worried about things you should just turn up at the chemo unit were you have your treatment , even if you dont have an appointment...tell them you NEED to see someone and tell them why...i must be lucky were i live ...i can go to the chemo unit were i live anytime and someone will see me, if i need to see the specialits i just have to go any thursday...and if i want to see the specialist in castle hill nr hull i just turn up and go on the ward were i had my last treatments and my specialists will see me, if she isnt there someone else will...cant you just turn up at the chemo unit you have had yoiur treatment at huvver ? if that fails you mac nurse must be able to sort something out , or maybe yours isnt so good....you need to see someone dealing with your treatment thats for sure....with me going to my gp is no good as she isnt a cancer specialist....i sure hope you can get to see someone soon ...id rerally just go to the chemo unit and see the nurses there if all else fails....

good luck.....hope you get somewere ....
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FormerMember over 15 years ago

what sort of chemo have you had ? i am noooo expert but i thought that hodgkins lymphoma was quite treatable....but as i say i dont know....i dont eveb know much about NHL and thats what iv got....i think a friend had beam chemo and stem cell transplant for his hodgkins lymphoma....but i guess theres lots of different types and what works on one wont on another....you go to the chemo unit and TELL them you want to know whats going on....
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