Hello. I'm new and feeling overwhelmed

You need to grab the bull by the horns!

Ring the CT dept directly, and play the innocent card I.e the post in your area is poor, and just wanted to check I havn't missed the letter or I'm about to have a break for a few days and don't want to have to cancel it. I am sure this will work! 

Good luck. There's nothing worse than waiting in this world, so be one step ahead. 

Hi Moira, and welcome to the group, and to the roller coaster ride that none of us want to be on! It’s normal and okay to feel overwhelmed - feels not nice at all, but like the rest of us you will find a way of coping with the anxiety and learning to let things settle in your mind. I tried to explain the feeling overwhelmed thing by saying it was like someone had shaken up a bottle of lemonade and all the fizzy thoughts were trapped inside my head and I just needed to let the bubbles settle before I could be anywhere near rational! 

I got my hysteroscopy results over the phone. The registrar was very nice but what she said to me felt like a fast train rushing through a station at which it wasn’t stopping - I barely took anything in and asked her to stop and slow down. I composed myself to ask things like what grade and type it was, I’m pleased I did that. But still felt incredibly overwhelmed. Thankfully she gave me the phone number of my CNS - cancer nurse specialists - and told me I might like to contact them for support, So, after bursting into tears and composing myself, I phoned them and spoke to a lovely person. My CNS helped with support and also with chasing appointments for me whicn also helped. If you don’t have your CNS contact details, I’d recommend phoning your consultant’s secretary and asking, as the CNS can chase this CT for you. My hospital tends to do MRIs and I was lucky enough to have mine (and chest x ray) within 4 days and results 3 days after that as they were back in time for the Friday MDT meeting.

Click on my name if you’d like to read my story - but basically I was diagnosed in November 2021 and had my hysterectomy in January 2022 and then some radio as an insurance policy. You will find your way through this and there’s every reason to feel positive. I found the best way was to look it in the eye and own it right from the start. And I hardly told anyone as I didn’t want to have to deal with sympathy or unhelpful things said. 

So, I’d advise finding how to contact your CNS, and also possibly sending an email to PALS at your hospital, explaining that you’re feeling like you’ve been left feeling high and dry. It will help. And talk to us here - and don’t Google! 

I'm such a wimp, Cathy. I'm Mrs. I Don't Want To Bother You. But, I know you're right. Standing up for myself isn't my strong point. I slip into aggressive mode very easily, so I avoid confrontation. I realise this wouldn't exactly be confrontation, but just speaking to people is a struggle sometimes. I shall endeavour to get their number and do it today. Thank you xxxx

Lol at Google! Yeah, I've already learned that one. I have spoken to my CNS, last week. I hadn't been told of her existence! If I hadn't phoned the gynaecology secretary,  I wouldn't have known there were CNS.

I phoned her this morning and left a message on her answer machine. We're at the stage where my husband has said, "find out if we can pay for a private one!"

Anyway, I've left a message and presumably she'll call at some point. In the meantime, I'll take my other bit of advice and try calling the xray department, to try moving them on.

Who are PALS? When I say I feel alone, believe me, I've had no real guidance beyond my initial contact with the CNS, in which she told me about McMillan and the Maggies Centre. I've spoken to both but in very general terms. My main problem is I just don't know what's going on. A lot of "advice" relates to treatment and coping with it. I don't know what treatment I'll be getting, indeed, the more I sit creating my own scenarios, the more I don't think they're going to give me any treatment (yes, I'm THAT bleak in outlook). I was never a fan of roller coasters, and you hit the nail on the head with that description. 

We'll talk again, I'm sure. Thank you xxxx

Hi PALS is patient advice liaison service- just call the main hospital number. Thetwillbe able to help you to move things on - must be horrible being left in limbo like this- you will feel better once you know the exact diagnosis and next steps. Good luck!

Phoned!!!!! I have a cancellation appointment for Friday coming! Thank you for helping xxx

Hello so sorry to read this as bad enough what you are going through without extra worry !! I was going to pay for a private MRI scan as I needed to have it prior to MDT which was the following Friday  but the nurses said that they wouldn’t view it as they were no where as good as the NHS so not to waste my money !

u got results Thursday Feb 1st this year CT was same day ! And MRI I had to ring and go in and leave my details and managed to get one on the Saturday couple of days later ready for MDT. I personally would call the hospital and request to speak to the consultant their secretary and the nurse asap also you could go to your Gp if you can’t get contact 

• oh just read you have app Friday so good luck !!!! X

I phoned X-ray Dept. and the guy offered me a cancellation appointment for Friday coming! Woo hoo! Action, at last. Of course, once I get this done, it'll be the fear of the results. But, better to get on with it, I suppose than sitting in limbo land no.1. I'll be moving to limbo land no.2!  I've never heard of PALS. They might not have them in Scotland,  or they might? I'd be the last to know! Thank you xxxx

Hiya. Thanks. Aye, I managed to get a scan booked, but let me tell you this, I tried to get a GP appointment just after I was told I have cancer, and our very thoughtful receptionist advised she had no appointments left, could I call the next day!

Don't get me wrong, I'm not tarring all GPs with the same brush, but good grief! When surgeries recruit staff, they should maybe consider a compassionate attitude as well as typing speed! Grrrrr! Some folk make me so angry. 

Thanks for talking to me xxxx

Cathy, try and set aside any fear of how you might come across, just be insistent but polite. This is your health, your life, your responsibility to yourself and those you love. The health system cares but they’re busy, so find your roar and do it. Nicely but firmly. Being assertive is what you need now - sinking into “victim” status won’t help you get through. All of us go through this anxious and terrified - and it’s okay to feel like that. But we don’t have to let it knock us under. We can take responsibility for our condition, we can be proactive, we can ask questions, we can be assertive, insistent, even risk being a nuisance - because at the end of the day, it’s our cancer and our life. As long as we are considerate and polite, we can say and do anything we need to. And from my own personal experience, I will say that doing so helps with the fear and anxiety. I phoned my CNS or the Macmillan helpline whenever I needed the edge taken off my anxiety - CNS hours for my hospital are 10-4 week days and Macmillan helpline are 8-8 7 days a week. Some weeks I phoned my CNS 2-3 times - sometimes to ask them to chase stuff, but most times just to say that I was phoning as I was feeling anxious. I felt it was my responsibility to lean on them rather than my husband or adult kids as they’d have their own stuff to deal with. Talking with my CNS or the Macmillan help line helped me not to lean too much on my loved ones. I wanted to cope and show myself coping, and getting help from others, and from this group, helped me achieve that. It doesn’t mean I didn’t fall apart sometimes, and I would not say I was either strong or brave, but I managed to be pragmatic and just got on and did what needed to be done, You can do too, you will find your own way through.