I just need somewhere to vent, where people can understand how I'm feeling. I was diagnosed with cc a fortnight ago, had my MRI last Monday, and was told I would hear back that week. I phoned up the Hospital, and they said the report was ready but the consultant needed to verify the results, and call me.
I took my kids away for five days, and this shadow has sat over me, my kids and partner, because of the not knowing. I'm on a thin line from coping, and being on autopilot, to completely breaking down. I'm bleeding heavy, with pain, which just adds to everything. I'm sorry to rant but I feel very isolated, even with everyone around. xx
Sorry to hear that you're having to wait so long, the waiting is what's driving me insane. I also had my MRI last Monday, but luckily got my results on Friday. Unfortunately they were inconclusive, so I'm now waiting 2-4 weeks for a PET scan. The waiting times are just ridiculous!
I know a lot of people are diagnosed with illnesses, but it's difficult to just go on with not knowing. Unfortunately for me, my results have gone completely against what my consultant thought and the cc seems to have jumped around my body. So now, I have to wait 2-4 weeks to find out where I'm at stage-wise, but they're anticipating stage 3.
Feel free to rant away at me or vent, I completely understand your frustration. I'm going to be starting chemoradiation eventually, but it's the waiting and not knowing what' going on in my body that's the worst.
I hope you get your results over the next couple of days, feel free to drop me a message.
the waiting is horrible, it was about three and a half weeks ago I was diagnosed and had my MRI and PET scans two weeks on wed. They told me my MDT meeting for staging treatment would be last wed so held it together till then only to get a call at work saying treatment etc couldn't be discussed as there was no oncologist present. I had built myself up to have answers so just lost it and began sobbing.
the guy on the phone then vaguely explained I'm a 2a but too advanced for surgery but didn't explain what that meant. He said the next meeting is wed again but now I have an appointment for wed afternoon which I don't know is a bad thing or not.
I'm lucky I suppose as I have at least vaguely been told a stage but I completely understand what your going through. I think for me it's the not knowing coupled with the lack of support, information and understanding. i respect the professionals but I think they forget it's a persons life and fears they are dealing with.
once I got the phonecall on wed about the canceled meeting I asked my GP advice about how to get more info. She told me to call and explain that I had expected to have more information by now and I becoming very distressed and asking that a consultant calls me back. I ended up getting the appointment so didnt call but I would say to call again explain how much this is upsetting you and get them to call u back at all. I think if they told you that you would hear on Friday they can't blame you for chasing it up.
I have ranted a lot on here ALOT and always feel bad but I think what we are going through is so awful we deserve to rant. it helps me to put my feelings out there and find out I'm not alone and others feel the same.
i really hope you hear something today as its agonising all this waiting.
hani im so sorry you haven't got your answeto yet and hope you get your pet scan quickly.
thank you for your replies. It's scary how much the wait affects you. Haji, I'm so sorry the cc was not at the stage the Dr first thought. I can't imagine how confused and stressed you're feeling. To have to wait for a further scan, seems so unfair. Please message me anytime too, for a rant or just a outlet. Kimmy, I gave to say, I built myself up to hearing last Thursday, and was so upset, when nothing happened. I think we all just want to start besting this horrid disease xx I'm so glad we have this site. It's fast becoming my most viewed.
I know what you mean about it being a shadow over you, it's like it's always there just hanging around. I have always been a chaser the nurse who handled the lletz results recognised my voice after a while! Definitely call them and explain. Waiting is so horrible. big hugs and always good to have a good old rant. Lots of love xxxx
i don't know if it's any use but when I was waiting to hear about scans I explored going private for the PET scan and there is somewhere in Preston that gets them done and they could have fitted me in quite quickly. I was quoted 850 pounds and decided to chase up my PET scan on the NHS and managed to get one later the next week.
i hope you can chase it up and get it done quicker but just thought that information would be helpful if you do decide to explore going private.
likewise to slyvia feel free to shout me if you want a rant. This process is so awful it's sad there is not a better, quicker way of doing things as it grinds you down before you even start fighting the cancer.
The waiting is the worst. I can appreciate some things take time and they need to be confident in what they are doing but the lack of communication is disgraceful. I ended up calling my cns and breaking down over how in the dark I felt. She then told me when the mdt was and that I could expect a call on that day. She called me after the meeting with a bit of info and then I had an appointment two days later with the consultant. Definitely chase them.
I've just called the consultants secretary, well, a stand in, who kept getting the dates wrong, & didn't explain things clearly. I finally found out, that an MDT meeting was had on Friday, with a treatment plan. However, I won't know the outcome, till after tomorrow, where they then have to speak to Brighton, as that's where my treatment is going. The earliest, I will hear is Thursday. That's two weeks since my MRI. I came off the phone crying because I can't cope with not knowing.
I don't even know what to say as you must be so upset. can you not ask the consultant to call you back to at least tell you the stage, as I assume that's the bit causing you the most worry. They might not be willing to tell you over the phone but you could ask the question. The guy who called to tell me the MDT eventually told me my stage but I had to push him a bit.
I think you should really think about calling back as this is clearly causing you so much distress.
When I was upset at hearing nothing the gp explained they don't tend to tell you anything till they can sit down and tell you everything ie treatment etc however if you are likely me that didn't really provide much comfort.
Sylvia big hugs I seem to always have massive waits I will have been waiting 5 weeks for hysterectomy fron being staged which is out of the nhs protocol but we are not in control. Big hugs my dear I hope you feel a bit stronger tomorrow. Perhaps get your gp involved to chase things or contact PALs google them I contacted them because of my waiting time to get results and they did definitely help xxx
