Life in limbo

Hello Podperson, it is difficult to be patient when waiting for the system to react with a schedule, treatment details/options and dates. Behind the scenes, the medical team will be juggling resources so that the line-up of facilities and specialists can be arranged for you. Unfortunately, the flow of information regarding your case and what they are up to is often slow or virtually non-existent. If you have a cancer nurse or a Macmillan nurse contact at the hospital, they can often catch specialists or access patient notes so that you receive at least some information. I know how the experience of phoning and joining a long call queue, only to be told when finally getting through that there is no-one available to take your call can lead to a feeling of desperation. I hope you receive an update soon. If your symptoms change and cause you concern, pester your GP who can sometimes delegate someone to lever some information out of the hospital. Best wishes, Ray    

Hi Podpersen and welcome, the waiting for results and appointments is awful we have all been there at one time or another. I can't offer any reassurance to you just my best wishes as you move through this horrible journey, I'm sure someone will be along soon who can help you more. Lynn x

Hi Podperson,The waiting is awful we have all experienced it and understand.My cystectomy was marked as urgent but I still had to wait a month.They have to assemble a team and ensure that there is a bed available in intensive care/high dependency and the arrangements do take time.If you can,try to find something to distract yourself while you are waiting.I got the house tidy/organised and did some tasks that I knew would be difficult or impossible post op.It may be useful to write down any questions you have ready for the consultant appointment.I took my sister in when we met the surgeon and she asked questions too and it’s always helpful to have an extra pair of ears.If you are able to you could use the time before the surgery to get as fit as possible.This will help you through the op and the recovery.Love Jane x

We all understand that anxiety about waiting. Once you know you have a tumour, you want it out as soon as possible and fret at the hosp delay. Things aren't always quite as urgent as we think, but certainly worth chivvying them along (politely). The PALS department may be able to help if you don't know who to contact. Hope you get news very soon.