Beginning to feel paranoid!!
Is it just me or are there others having similar problems? Last week when I first met my Melanoma Nurse (after apologising to me about being left 5 weeks before I saw/spoke to anyone after my diagnosis) she gave me her contact number so I could ring her if I was worried or needed information. We also discussed the need for me to cut down the amount of visits I had to make because of the distance etc. She said she would arrange for my Pre -Op Assessment to be done either over the phone or I could come in the day before so I would already be there for the op the next day.
Well, I have received an appointment for next Monday BUT op not until 29th. SO, Mon I rang the number she gave me and it was her Sec answerphone. I didn't leave a message and tried again later to have same message! Tried again Tues and got the same again so on the 4th attempt I left a message asking her to ring me with my number. Here I am. Thurs evening and she hasn't rung me back. I could page her but I don't think what I wanted to ask is urgent for me to page her? My poor friend who is taking me to my appts because I can't drive long distances just sighed and said she would take me Monday no problem (bless her she meant it too). I now feel bad because we have to do this, even after explaining the problem to the nurse, and not having anyone get back to me.
My confidence is dropping through the floor about what kind of treatment I will be getting from the staff when I'm in.
Pheonix xxx
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You
Not suprised your feeling low. You must have the support you need, Have you been in touch with any one other than this nurse, If not have a good look at this site. I'm sure some one will be able to advise you. Any way best of luck from Lindaj
Advocate
It is so hard to be sick AND have to advocate for yourself! I'm so sorry that you are going through this and have to take care of stuff like this too! So do me a little favor. Imagine that she is calling you back and has it all sorted out in the next couple of days! :) I'll be checking back. Good luck. Thinking of you. - Lori
Pheonix
Don't worry, it isn't personal, it is just normal administrative incompetence.
Just leave a message with the secretary's answerphone that you can't get transport before 29th, and you will see them then. Leave your phone number as before, and wait for the phone to ring. When they do ring again, give them your email address and ask for their email address. Actually, if you have the name, you can use the Chief exec's email as a pattern, copying it to him "to avoid things going astray". As long as you remain perfectly polite, they will treat it as normal chaos and make sure it gets dealt with.
Good luck
Rwth
Hi Phoenix - are we at same hospital?
This is exactly what I am getting trying to get my old scans out of my old hospital in Nottingham. I ring, my Cancer MacMillan nurse rings, my gp's clerical assistant rings. The hospital eventually says, yes, oh definitely, they understand I need them by such and such a date - and three months down the line, I am still paying loads to go down to the Marsden and finding they have received nothing. It gives one a feeling of utter frustration and as if I as an individual simply do not matter. It is also very hard to keep chasing, keep "on your case" if you are ill. I suppose it is just incompetence and neglect. Whatever, do you also have a Cancer MacMillan nurse as she can perhaps take some of this burden off you and see what the heck is going on. I know it is hard to complain at the hospital as one feels that one is going to get worse treatment. By the way, as the hospital is so far away, are you able to get any financial help with travelling?
Lots of love - and you're not paranoid, they're just crap. xxxx Penny
Paranoid?
Try jealous and paranoid!! I don't even have a melanoma nurse!! In 2007 when I had my first recurrance I was given the number of someone I could talk to, but at that time I didn't feel the urge to talk. When it recurred in my lymph node in 2008 and moved me up to a Stage 3 I really could have done with a bit of extra support, more explanation of what was going to happen and the treatment options open to me (tongue in cheek here!!), but nada, zip, nothing!!! And MacMillan nurses? What are they then?
Try to stay focussed Pheonix and don't get disheartened, this will all soon be over.
Marsha xx
Thank you!
Dear Lindaj,Lori,Rwth,Penny and Marsha thank you for being patient and reading my frustrations and taking the time to answer. As it is now Friday and my Pre-op is Mon there is no point in ringing her again now. Hopefully I might get the chance to when I'm there. No, I do not have a MacMillan nurse as far as I am aware?
Post has just arrived and a letter from the insurance company . I took a loan out in Feb and took payment protection insurance "just in case". When I realized I would not be back at work for a while I contacted them about 6 weeks ago to activate the insurance (loan payment £210 a month). Letter says they will not be paying as I was "aware of my condition in January (according to my GP's paperwork) therefore a pre-existing condition". I'm afraid a red mist decended in front of my eyes when I read that!!!!
So, armed with my diary I have just rung the company back (in Wales) and said my first appt with my GP re this was on the 2nd June. A whole 4 months after taking out the loan. My GP had asked me at that appt how long had I noticed it there and I wasn't sure but thought it about January. This is what he's put in his report for this company. I then explained firmly that I was not medically qualified to have known that my 'blemish' then was cancer and wasn't officially diagnosed until the 12th August!! Was I expected to run to my GP every time I had had a skin blemish come up all my life BEFORE having this happen? My Cancer was a rare one, NOT caused by changes in a mole so why would I have suspected it was cancer? It was bad enough to have this disease without the added stress of them not doing their job properly. I explained I was on SSP of £300+ and not able to pay £210 out of it to them! I also said I was absolutely disgusted at being treated in this way. The man then asked if I would 'hold' while he spoke to his Supervisor. He then came back and said they would refer my case to Customer Care within the next 5 days. I pointed out that the next payment was due on the 20th and I had no money to pay it so I hoped that they would contact me sooner rather than later lol!
Honestly, whatever lessons I'm meant to be learning here I wish I was a fast learner!!
I think I will contact the advice people here just so I am armed with correct info when Customer Care Dept get in touch.
Take care all you wonderful people!
pheonix xxx
Same here
Same here on handling disability type claims. Try to weasel out of it first off the bat. But I can't imagine that until you are actually diagnosed they have a leg to stand on. Good luck with that!