Having a meltdown please help

Hi Janet

i generally only reply on lung cancer posts and I don’t know what your cancer is but Just wanted to say do you have a clinical nurse specialist at your hospital that you can be in touch with as I’m sure she would be able to help you.

Hi Janet

i generally only reply on lung cancer posts and I don’t know what your cancer is but Just wanted to say do you have a clinical nurse specialist at your hospital that you can be in touch with as I’m sure she would be able to help you.

Hi nel its the nurse negligence put me in this situation.I have asked her in April if she knows any hospital i can go because my original hospital shut down the clinic but nobody let me know.So she promised me to call back but she never off.Then I gave up.My onco dont care either.I had to cry over the phone to the GP.

I am not asking much just to them to get me that sleeve to bring the swelling down I can do exercises on my own.

I feel ashamed of NHS.Its disquisting.Nothing else now exist only the virus patients.Now its gone too far.I am already suffering from depression and anxiety and they making me more ill.

Hi Janet

i am very sorry to hear that. Have you thought of contacting McMillan direct for some help. I imagine they will do all they can to get things sorted for you and I believe everyone is entitled to a 2nd opinion so if your current hospital are not sorting things for you perhaps McMillan can point you towards who can 

Is it worth going to A&E? You sound so desperate and I am so sorry that you are still suffering. I am also angry on your behalf.

Xx

Janet, my heart pours for you, you have had/having an extremely stressful, awful, rough and tough nightmare when everything and everybody you are relying on to help you in your most dire situation. I've had the most horrible of days when we felt abandoned and unwillingness to help us, albeit a one off incident when we wanted to try a new trial in the USA for treating my incurable GBM. Days when you feel so numb, so lost and frightened when your world has stopped and you've come to stop with it as you feel you're at the end of your tether. It's natural, however horrible to feel, WHY should I fight on, what for, there's nothing going for me, why bother.

But, Janet you are much greater, your mission, much more pressing, sacred and noble. However difficult, please pull yourself back from that end of the road, those and those things holding you back and letting you down constantly. It's frustrating when emotionally you have just had enough - and you darn have been treated and let down badly. You are worth much more, you are bigger than life, you're life fighter and a huge inspiration to us all. I hope I'm not giving you woffle, I mean what I've said with sincerity and feelings for you in your extremely painful situation.

Mcmillan are a wonderful group of people all so kind and keen to help in every way possible. - sorry, that's been suggested to you already.

Please try your best but I know you need time and space to try to refocus. Remember, an ill person has ONE job and that is to get better. Everything else will sort itself out and what you had will come back. Concentrate and you yourself, it's so important.

I hope you get all the help you need. 

Be well.,

Rafs

Hi ,

I agree with flowerlady that it is a good idea to go to A&E.  It is possible for them to refer you to see a specialist on the day if they think that is appropriate.  The fact that you are so distressed would justify a tip to the hospital in itself.

I would also suggest you consider complaining to the hospitals involved.  Personally I would go through PALS (Patients Advice and Liaison Service) initially, their contact details will be on your hospital website.  You would be perfectly within you rights to make a formal complaint but I think PALS might get you a quicker result.

I also wondered if your GP has referred you to Macmillan to have a Macmillan nurse allocated to you.  They can act like your representative when dealing with other medical professionals but their word carries much more weight because of their specialism.

If you feel that you are not being taken seriously it is always worth making a noise and keeping on doing so until someone takes notice. Whilst I believe that you need treatment for lymphedema, even if they don't they would eventually sort out an appropriate treatment or treat you for lymphedema just to stop you complaining!

It is just about the appropriate way of going about it.  I recently complained about my local services being changed without the patients being consulted.  I wrote to the head of the trusts involved but copied in my GP, my oncologist, my research nurse and my local MP and the MP whose constituency the service was moving from.  I received a positive response and was offered more options as a consequence.  This would not be appropriate in your case but gives you an idea of who you can involve if you want to.

I hope that you can get this resolved soon as it has been going on for much to long now.

Wishing you all the best.

Gragon x

Thank you everybody for your help and advice.I am afraid I cant go to the A&E I am so scared from the A&E s to sit there for 4 hours with who knows whats diseases.

I already made a complaint about my nurse and oncologist why they didnt do anything about my arm since January.Yes they referred me to the clinic but when the clinic shut down they didnt even let me know.

Anyway I called this new hospital yesterday back with tears and I will have a video appt on Monday and i need to measure my arm so they can get me the sleeve.

Thanks Rafs I apologize I am such a baby but cant help it.Depression doesnt help it.I know people are worse than me.

I am sorry didnt read your profile but did you manage to get the treatment?

Thank you flowerlady I have called the hospital back with tears so on Monday I will have a video call and told me to get me a measuring type to get the she sleeve for me.But if i am not pushy they will get rid of me.Not enough have to deal with cancer I have to fight for my treatment.