Concerned about scan

Hi Frogs and a very warm welcome to the online community

I'm sorry to read that you're still suffering with the pain that you were experiencing when you were first diagnosed and, in fact, it's now spread further.

You said that your surgeon has said that it's nothing to do with your cancer so what has he said is causing it? As you say that the pain is worse now it would probably be a good idea to speak to your CNS for advice if you haven't done so already.

I don't know if anxiety can make your pain worse but if you feel that your anxiety is increasing you might want to speak to your GP or CNS. You could also have a look at this information from Macmillan on anxiety as it gives useful information on ways to help manage it. 

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when answering or looking for someone with a similar cancer. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

I often see reference being made to a CNS. I take it this is an abbreviation of Cancer Nurse Specialist? I was told that this person would be my main point of reference. By her, not by the consultant.  However, I can never get her either on the phone (I leave messages) or by email. She ignores all calls. What’s to be done about this? 
it’s difficult complaint but I can’t get any answers to simple queries. 
i attend the Beatson in Glasgow.

anyone else out there experiencing such an impediment to their health?

Hi and welcome to the online community

You are right that CNS stands for cancer/clinical nurse specialist. I'm sorry to read that you have left messages and sent emails to your CNS but she hasn't returned your calls or replied to your emails yet. I haven't had to contact mine for over a year now but she does get back to me 24-48 hours after I've left a message. 

If your CNS is not getting back to you you could ring your consultant's secretary and ask if the details you have are still correct for the CNS. The secretary might also be able to pass a message on to the CNS asking her to call you back.

If that doesn't get you anywhere you speak to the Scotland equivalent of PALS (Patient Advice and Liaison Service) at your hospital as part of their role is to help you if you're having problems contacting your hospital team. 

I noticed that you haven't joined this group yet. This isn't a problem but joining means that you can then start a new post. To do this click on the 'banner' at the bottom of this page and, to start a new post, click on 'new' or '+' depending on the device you're using.

It would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.

x

Thank you Latchbrook for your considered response. My partner and my daughter have both contacted my oncologists Secretary, who is efficient and considerate usually, but even she can’t get the so called (sorry about the not so veiled disdain) NetsCNS to call back or even acknowledge we’ve contacted her. My partner says however that the oncologists Secretary hasn’t got back to him either. Perhaps they’re on holiday, but don’t they have temp staffing? 
My GP upon my asking if she’d received any notification about my CT scan of the 20th July. She hadn’t, but advised me that she was advised that I had a scheduled appointment for August. That’s the first I’ve heard of that. But for asking my GP I wouldn’t have known anything about it. That’s poor communication and an example of bad practice in my book. Don’t think my GP was too impressed either.

this lack of communication is but one problem, but I’ve since had a stroke and I’m extremely unwell overall. I walked steadily into that clinic when my treatment first started, but have deteriorated to the point of not being able to walk 20 yds without having to sit down mid-way.  Ive had little or no aftercare since leaving the hospital and I just feel like jacking it all in.  Has anyone else experienced such shoddy treatment from Scotland’s Centre of Excellence?

I'm sorry to read about your aftercare experience . As I'm in England I don't any experience with Scotland's Centre of Excellence. You could start a new post asking this question if you wanted to.