Feeling very disappointed

[rosebine]

Had yet another phone consultation with my fourth consultant on this journey. Once again it was obvious he hadnt read my notes, as have none of the two previous consultants. From feeling quite supported on initial diagnosis I now feel just one of the many on the conveyor belt. I dont have hope of a cure, best I can wish for is perhaps a few months now but would like to feel that I still mattered

[candyapplegrey]

Dear Rosebine,

Of course you matter. I know the conveyor belt feeling. Every time I turn up somewhere, nobody has any clue about me ... but I'm at the beginning of my journey, already feel like a number. Or a diagnosis.

The only people, apart from this forum, who have been kind and sympathetic are the Macmillan nurses. I thought it wouldn't help to talk to them but it did. If you are in UK, no. is 0800 808 0000. You probably already tried them but might be worth it again.

Sending love and prayers.

If you need to talk to someone, I know I'm new to this, but I could message you my number.

Candy

x

[27-359]

Hi. I really understand where you are coming from. I think Maidstone is having a few issues at present. My oncologist suddenly went missing and I was given a locum. I was supposed to have a phone consultation with him, which was suddenly cancelled. I was then give a nurse consultation for 12.45. She eventually phoned at 5.30, very apologetic and said that due to staff shortages she had been working on the wards.

None of this helps us at what is a very difficult and frightening time.

Jenny

[Hidden]

Hello, I totally understand where you are coming from, I have only seen my actual oncologist once since I switched from private to nhs over a year ago, I mostly see or have a telephone consultation with a different registrar every time, some leave and I never see again, but all don't recognise me and have no recollection of ever having met me before, I find this very disconcerting, and lacks continuity, when I ask for test results, mostly they have to then go and look it up, showing that they haven't read my notes, I don't bother asking questions any more I just request a FBC print out and monitor my progress myself with the help of Dr. Google. Not ideal!

[candyapplegrey in reply to Hidden]

I’m totally with you – my ‘care’ (sarcastic) has been just terrible. I actually said to one of the nicer medics that it seems to me I walk out of an appointment and someone just throws my notes in the bin (if they ever existed) and the next time I turn up they tell me they have no paperwork to administer the injections that they prescribed for me. I agreed to chemo and then they told me re compulsory PICC line. I wasn’t allowed to talk to anyone in the chemo dept until I’d consented to it and then was told a lot of stuff that directly contradicted what the consultant had said. Get to chemo and [to me] it’s [as if] they don’t know or care about any of the meds I’m on otherwise which I’d been told I could take as normal. My heart rate was 129 – they wouldn’t let me leave hospital after my operation until it had gone down to 110 but they did an ecg and time was going on so an absent doc gave the go-ahead. Felt awful and disorientated halfway through, told the nurses, they showed no interest. When the treatment was finished, no one even asked how I was feeling. [I feel t]hese people should not be in this profession. The ambulance driver was the kindest person I’d met all day, and my new travel buddy from Sidcup.

Candy

x

*this reply was edited by moderators and the edited text replaced with the text in square brackets*

[sticky3006]

I feel completely the same. If I didn’t push and continually ask questions I think I’d just fall by the wayside. So frustrating. I’ve learnt now not to be afraid to ask questions and generally harass people. I’ve got nothing to lose. I also felt better when I paid for a private consultation as a second opinion. It shouldn’t be necessary but it gave me peace of mind that I was getting another specialist drs opinion and that she was actively interested in me as an individual.

Take care x

[Kissmeonce1939]

My heart goes out to you and all those who are in this situation. You are very important to all of us on this website, to yourself and your family. I pray for God to surround you with the Peace that only He can give. I am in my 4th yr of this battle. I remind myself daily, the best is yet to come. Sending you love prayers and only good thoughts.

Kissmeonce1939 Amy

[mupash]

HI ROSEBINE,

CERTAINLY YOUR LIFE MATTERS. IF YOUR DR. OR NURSES AREN'T COMMITTED, YOU HAVE TO FIND THE STRENGTH TO SEEK OUT ANOTHER

TEAM. DON'T MEAN TO SOUND HARSH BUT THESE DOCTORS WHO DON'T SEEM TO CARE MAKE ME VERY ANGRY. THEY SHOULD BE DRIVING TRUCKS OR WORKING IN A STOCK ROOM. I KNOW WHAT IT IS TO GO THROUGH IT ALL BY YOURSELF, IT'S HARD. THERE HAVE TO BE SOME ANSWERS OUT THERE FOR YOU. CAN'T YOU ASK AROUND AND FIND ANOTHER DOCTOR, EVEN FOR A SECOND OPINION? I HAVE NOTICED SOME MEMBERS HERE REFER TO "THE PROFESSOR" WITH GREAT REVERENCE. I THINK LINDAURA MIGHT KNOW WHO THAT IS. I AM IN FLORIDA AND CAN'T HELP YOU IN THIS REGARD. DON'T GIVE UP, NEVER GIVE UP.

MY BEST TO YOU,

HUGS,

LEE