New Problem

[Taichipat]

Am I a wreck or what? When I went to see Consultant on Monday I told her about a discharge I have developed (she said absolutely ziltch) now there is proper blood. Has anyone else had this? I am beginning to feel she is right in treating me like a lost cause. Will wait to ring the ward at 9.00 a.m. as now that seems to be my only option. Help needed....

[Whippit]

Can you get hold of your CNS or Keyworker, or your consultant's secretary. If that happened to me I'd be getting it checked out too. Hope your consultant listens to you this time. Hope all goes well. xx

[Taichipat in reply to Whippit]

Oncology Nurses message on answer phone ....phone ward if on chemo, phone your own doctor as messages will not be answered for weeks. How do you like that.? Other than here am having no support whatsoever. Have rung Triage Nurse (is that right, don't know what that is) she is going to ring my Consultant and get back to me as any blood is not good. She did say that my report on Monday contained very little and I said yes that's why I am unhappy getting nothing back from her and no positivity and even saying have you got private health insurance.

[Whippit in reply to Taichipat]

Crikey this does sound poor service. Where do you receive your treatment? Sometimes it's possible to chose another centre if you're dissatisfied and the other centre can offer more options.

I hope someone gets back to you soon. The Triage Nurse works out the urgency of dealing with patients on a sort of traffic light system, red, yellow and green so the most urgent cases get dealt with promptly.

Let us know how you get on during the day. xxx Annie

[doodoolatrice]

Hi Taichipat, so sorry to hear you're having this additional worry on top of everything else. I hope you get some answers soon, big cyber hugs, Kerry xx

[Taichipat in reply to doodoolatrice]

Definately need a hug today even if it is only cyber. Thanks Kerry.

Patx

[ScottishMisty]

Jeez what bad treatment! That is diabolical. I don't know your cancer journey but I would complain via PALS at your treatment hospital. Sending you another hug x

Sheila x

[Taichipat in reply to ScottishMisty]

I suppose not everyone gets good treatment. What is PALS? I will take that up at a later stage. Just at the moment I need to concentrate on the Caelyx Treatment starting Wednesday.

I love all these hugs

Thanks Sheila

Patx

[ScottishMisty]

Patient Advice and Liaison Service. Should be one in every hospital x

[vipervictoria]

Pat, I have had this problem, I know how worrying it is but in my case it was completely benign - it is by no means always a tumour.

Also, have you heard of the charity Cancercare, that operates in Lancaster? They provide holistic support for people affected by cancer, massages etc and counselling. They could perhaps help you resolve your issues with local NHS services because they are independent. Above all, they could listen. Their number is 01524 381820. The website is cancercare.org.uk

Sending more hugs, Vx

[Taichipat in reply to vipervictoria]

I go for counselling at Cancercare in Lancaster and luckily I am going today. I have had massages there and other than this forum and Ruth at Ovacome I have had no support. I am fighting my corner. A lot to talk about today with them.

[TinaB1]

Hi Pat ..

You are beginning treatment soon so you know that. I know your CNS isn't there but to be honest, I don't want a tissue nurse. (I can't believe I said that.) I want treatment when it's needed as I've paid into the service all my life and i've worked since I was 13. That's how I feel.

I know you're upset and I can totally understand that. If you're worried about bleeding, I think you should see your GP. If your GP feels it needs looking at, you'll be referred to A and E. if it's manageable and connected with your disease, you're already booked in for treatment.

The system can be difficult to understand but we're here for you. I think a lot of people understand your situation here. X

[Taichipat]

Not worried about bleeding now that the treatment is going to start sooner. Just feeling bloody minded about being written off by my Consultant and given so little hope. I shouldn't say little its NO. Feel the same about Oncology Nurse whenever I have phoned she has been mainly on holiday or geeing me on when I have been worried there is something wrong (and there was). Oh just a blip she would say. Not only are we fighting the cancer we can be fighting NHS employees as well. Grrrrrr. Just wait.

[thesilent1 in reply to Taichipat]

Hi Pat, I'm sorry you've had this problem but glad that your treatment is starting early.

I worked as a NHS medical secretary for a cons surgeon who specialised in bone and soft tissue tumours and part of our team was a specialist nurse. They are not at their desks all day, she would be in clinic with the surgeons, she had to go to clinics with the oncologists and she also ran her own clinics. She always reported back to her desk each day, even when out at other hospitals and downloaded her telephone messages. Depending on what information was left by the patient she might have phoned them at that time or if it was less urgent, the following day. If a patient was very anxious and had got her answering machine, they would have contacted me and I would have spoken to the consultant.

I'm not defending your CNS by any means as I think their system needs addressing, I'm just trying to point out how busy they are. Your Hospital does have a Complaints Department and perhaps you need to let them know you're not happy!

Good luck with your treatment and hope all goes well for you.

Ann xo

[Taichipat in reply to thesilent1]

I fully understand the system. What I don't understand is the message that has been left.

[thesilent1 in reply to Taichipat]

Contact the Complaints Dept about the message. I'm sure you won't be the only one to do this. Ann xo

[TinaB1 in reply to Taichipat]

Sending you lots of good wishes .. Xxx

[Taichipat]

Thanks Tina. I probably have griped on too much on this forum about what I am going through at moment but I guess a lot have you have been there already and understand hopefully.

[Btte]

Hi Ann me again replying to your 2nd post,and you are not griping just feelin worried and anxious the same way the rest of us feel at some time or another. what stage and type of cancer areyou. I am stage 3 serous OC with nodes in peritonem and lung. My original sympton which made me see GP was blood stained vaginal discharge which stopped for a short time after chemo. then returned so I had surgery to vaginal node at the same time they inserted some gold particles to mark the spot if it returns they may think about internal radiation, op. was performed 10 months ago so far no bleeding. I can go swimming! Good luck for Wednesday and keep us posted. Love Bridie xxx

[Taichipat in reply to Btte]

Sorry this is Pat not Ann. I am the same stage as you without the nodules on lung on diaphram instead. Diagnosed in May. Only finished treatment in November so not a happy bunny. I have just started having a blood stained discharge so treatment brought forward to Wednesday. Got a copy of Consultants letter this morning. It is not I feel an accurate account of what was said to me as it certainly does not mention the fact that she asked if we had private medical insurance and that the other two treatments on offer should Caelyx not work would be less effective. Worried that the report suggested a CT Scan after only 2 treatments as Caelyx is known to take 3 -4 treatments to have any effect and should there be no response I will be taken off the drug. Seeking an urgent appointment on Monday with my doctor to request a second opinion at the Christie. So that's where i am up to today.

Thank you for your Best Wishes.

Patx

[Btte]

sorry Pat for the name mix up, I knew it was Pat so how I managed Ann I have no idea. Bridie x

[Taichipat]

Quite alright Bridie, I forgive you. Patx