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
FormerMember
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
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
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.
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
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.
