Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

A bit bleh!

Gragon
Posted by

Hi All,

I thought I would post before I settle down to watch the rugby this morning.  I received a phone call from one of the research nurses yesterday at just before 5:50pm to say that they had managed to arrange a scan for November 6th at 6:40 pm.  Still after my oncology appointment but it should be easier to arrange another appointment for that.

Annette, our relationship with the site is so up and down isn't it.  Lovely to have all the contact and understanding and when it works well it is a joy.  Occasionally a post which makes you think you don't understand how the world works and that the technology has decided to change all the rules as well!

love to all,

Gragon xx

anndanv
Posted by

Hi Gragon, That's terrific your appointment has been moved forward. I should think so too!

You are right of course, when the site works well it is an amazing lifeline, to amazing people! But when it decides to play up, and especially when it's in the wee small hours, you can loose patience with it! Because of the people here though, we always give it another chance...and another..and another...Lol! Have a great weekend!

My husband and I are looking after our grandson this afternoon from lunchtime to dinner time inclusive and I've not closed my eyes all night! I hope I can last the pace until it's time for him to go home!! Fingers crossed! 

Love Annette x

Tinalay
Posted by

Morning Gragon, I missed this thread, but it's more likely to be a lack of technical savvy than anything to do with the site...

I'm so sorry to hear you're having some worrying symptoms and pain and relieved the scan has been brought forward. Does this mean you'll have the results before our meet up?

It's no wonder you've been feeling low, that would chip away at anyone's resilience. I hope you'll soon have the answers you need and a plan. Looking forward to seeing you with a Hollywood smile in November

Tinalay 
Gragon
Posted by

Hi Tinalay,

At the moment I have an appointment scheduled for today in Hull (which I don't intend to go to as although my oncologist is based in Hull I see him at his clinic in Scarborough).  Another appointment in Scarborough with the same oncologist for Thursday 31st October which one of the research nurses is seeing if I need to attend or if it should be rearranged as it was scheduled to discuss the results of the CT scan.  My CT scan is booked for 6th November with as yet no follow up appointment or any idea when the scan will be reported.

So at the moment nothing is clear.  It is frustrating as I know all this is because of staff shortages especially on radiology although my oncologist also looked under pressure the last time I saw him as well.  When I first started having CT scans the dept was fully staffed and the reports were always available within a week and could be obtained even quicker if required.

The painkillers are working but I can take two tablets up to 4 times a day.  They work for about 4 hours each which does leave gaps so I tend to wait until the pain starts again before taking my next ones but make sure I can take some just before I go to bed so that I can get decent chunk of sleep each night.

As for the Hollywood smile we will have to see.  I see the dentist before the meet up but if you want Hollywood I'm not sure I can get an appointment to see the plastic surgeon in time!

Have you got someone going with you on Friday for your results or do you prefer to go on your own?  I'm not sure what I am doing yet on the Friday but if I can be about I will let you know and we could try to meet up?

love,

Gragon xx

ruthjp
Posted by

Hi Gragon,

It is difficult that it can take time for them to report on the scans.

what I do now is cancel appointments until I know that the scan has been reported on. They tell me over the phone if it has been reported on. Then I get an appointment for the next clinic. My Oncologist will also email me the report so I can read it and prepare for the meeting with him. I also ask for copies of the scans so I can view them on my computer.

this time it was bad news and he was reluctant to send me the report. I am seeing him this morning. I had to ask 3 times but I said I would be happier to read the report to prepare for the discussion.

eventually he sent it to me and I am so pleased I was able to research the possible outcomes and treatments 

Ruth 

Ruth age 66

 acc R submandibular gland wth lung mets liver met and brain mets