Hi Jock  
just thinking about you and wondered how things were going ? I hope you're further forward and surgery is booked ? 

Hi, 

Sorry for taking so long to respond. I hope things are progressing for you. You have been in my thoughts. 

I have been busy over the past few weeks and have spent some time back and forth from the hospital. I am there three times this week. Things were going to plan and I was prepared for my surgery on the 15th. After I returned  from my appointment today, where my surgery on the 15th was mentioned, I had a call from one of the colorectal nurses. The call was very brief and I had the impression she could not get off the phone quick enough. She told me that the surgeon had not heard back from the anaesthetist so he has cancelled my surgery. It will now be some time in April and she will phone me when she has a date. I was a bit stunned and speechless. I am still trying to make sense of it. I am wondering what he needs from the anaesthetist and why he can't just chase it up. My surgery is two weeks away so why does it need to be cancelled. I have went in to a bit of a tail spin. They tell you that the best chance of surviving cancer is early diagnosis. I worry that I was diagnosed early enough for something to be done but it hasn't. 

Hi Jock 

im actually gobsmacked that this has happened to you . I would have thought the nurse would have given you more of an explanation as to what was going on . They need to realise that although to them we are just a case number but to us and our families/friends we are much more . This is our lives and not being given a full explanation is not acceptable and contributes to the mental torture that we are already going through . 
Are You planning on contacting them again for more info ? 
I don't know if they can get you on the waiting list at another hospital . That's what they do for scans etc but I'm not sure if it's the same for surgery ? 
I  feel very sad that this is happening to you and hope so much that you will get a date much sooner than they expect. 
from my side , I'm doing ok . Surgery as planned next week but again who knows . I don't think I'll believe it until I'm actually wheeled into a theatre . 
Let me know how you get on and keep at them if you can . Don't give up because we are all worth more than a number . I'm rooting for you .  

Hi, 

Thanks for your support. 

I am really struggling at the moment. Yesterday was a blow that was completely unexpected and has left me unable to think straight. My head is in a bit of a mess. I have an appointment for an echo tomorrow afternoon and I will drop into Maggie's for a chat. They have been able to find things out for me in the past. I can't understand surgery being cancelled now whilst there is still two weeks for them to gather whatever information they need. After my echo tomorrow all the pre-surgery exploration will be completed. How much damage can be done by delaying surgery for another month or more? As I said, my head is in a mess. 

Hiya

I completely understand how you're feeling . Unless you've been in a similar  situation it's difficult to get the level of anxiety and the effects of the horrors of your own mind . Maggies is a good call though and hopefully they will be able to shed a bit more light on what could be happening . The lack of information is the worst thing because you think all sorts and then things start to spiral rapidly . Do you have another appointment with your consultant scheduled ? If so , it might be an idea to pin him/her down and delve into all the "what ifs" . I did that at one point with my consultant and I'm not sure she expected it but it was the only way I could cope with the time it was taking to actually get a treatment plan . 
Once I had all the information that's when I started to actually get my head around what I may be facing . Suppose that's not for everyone and we are all different but I do know you need answers . It's been too long now  . Let me know how things go tomorrow and how you get on at Maggies . I'll be thinking of you . 

Hi, I'm delighted you are now being seen. in February 2021 I was informed I had a tumour, affecting my one good eye, but had been noticed in posterior fossa Of CT scan. I did wonder how such an enormous tumour, apparently stretching from back of head to my eye, left me with any working brain cells! It was made even more fun since I am profoundly deaf and hospital either phoned or consultants sat with masks on. The test sections were fine - used see through visors. I finally got sense from my GP who said it appeared to be 2 tumours. Whilst the one, a pseudotumour or inflammatory orbital mass can't be assessed further than they have,  as is my only good eye. I received a telephone call about the brain tumour and at that time they understood I was being tested for the eye problem. Since then I have had one further phone call and they said they'd use the old scan. I have heard nothing more. All I know is that they hope it is benign due to being a meningioma. I have increasing tinnitus now 24/7  and controlled epilepsy. Can I request clarification regarding whether it is benign and what,if anything, needs doing after all this time? 
 

Hi Dare 

Thank you for your support . It's an absolutely awful time for everybody who has been told they have a tumour . Your whole life just spirals especially when the time from diagnosis to treatment is so long . Jock is right when he stated that we are told the earlier the diagnosis the Better the outcome but then the length of time to surgery in some cases kind of knocks that in its head .

I don't really know about your own situation but I wouldn't have any issues at all about going back and asking questions , especially if I was having new or worsening symptoms . Before I was diagnosed I was good at batting off aches and pains as a sign of age , or whatever , but now I have absolutely no problem about calling my GP/nurse to ask the question . Through this , I've realised that I matter and I'm pretty sure that if I have any symptoms of recurrence (fingers crossed I don't) I'd be onto them like a shot . 
hope this helps and good luck going forward . I really hope you get answers and it's good news for you

Hi Jock 

Many thanks for your kind words . They are very much appreciated . I was taken yesterday . I assume there was a free surgery slot and I was next on the list . I was home just after 6pm and am recovering . Path results will be next week so that will determine the next stage of treatment . As always , fingers crossed for a positive outcome . Another waiting game but at least im another step forward whatever that will bring . 
I've been thinking of you and hoping you've had some answers ?. How are you feeling ? Totally understand if you don't want to talk as I know how it can be . 

Hi, 

It’s good to hear you have had your surgery and have started your recovery. I'll keep everything crossed for a positive outcome.

I am no further forward. I had my echo on Thursday which was the last of the pre-operative checks. I am now back in Limbo frustrated and concerned . Another long period of nothing. I have, however, got a wee lift from your progress.