Cm

welcome to the forum and sorry to hear about your girlfriend

this is one of the worst part of the testing process, you have been diagnosed (although not confirmed) but you don’t know with what, to what extent, the treatment and prognosis.

on the 28th April I was diagnosed with a head an neck cancer that appears as a secondary cancer in a right neck lymph node. I then had load of scans and exploritories to find the extend and source of my cancer. 

I am now 3.5 years post cancer and I can honestly say that in the time the I knew I had cancer but did not know the full extent, was the worst part of my whole journey ... not just for me but my wife too.

so I sympathise and feel your worry

hang in there the pair of you as you will get there

its easy to say this but it does help and that try to do things to distract yourself from what’s going on, even if it’s only for 10 mins or so at a time it will help

let us know how you get on and ask anything at any time you want

vatch

Hi there.  Just wanted to add my sympathy with this horrible waiting time.  Have you been given any idea when to expect some more information?  Or are you just sort of hanging in limbo?  If you don't know when you might hear more perhaps you could try to find out when you can expect some more definite facts.

Keep talking to each other and whatever else you do or don't do please don't start googling anything.  I think everyone on this forum has said at some time that it was a really bad idea to try to pin things down in this way.  Of no use whatsoever and makes you more worried than you need to be.

Once you get some definite information you should know what to expect.  I have learned from this forum that treatments are now so much improved that many of the old fears come to nothing.  Still worrying of course but I hope it turns out not to be as bad as your worst fears.

Hi Vatch. I'd just like to say thank you for the welcome, and thank you very much for sharing your story.

I am so truly very sorry from the very bottom of my heart you were diagnosed with a head and neck cancer. My whole heart goes out to you and your wife and I wish all the best for you. 

I cannot begin to imagine how difficult the waiting and worrying must have been for you and for your wife. I completely agree with you this must be the worst part of it all, when you don't know anything specific, and have to play the waiting game. We don't know anything specific yet, other than she has a mass they just found today from an ultrasound in her lower right abdomen. But we have to wait a week for more information from her GP on the results, and probably further testing to find out more after that.

I'd just also love to say thank you very much for the advice and support. It really means a lot to me and my girlfriend, and I've shared your advice and support with my girlfriend, and she says thank you as well. :)

I'll definitely keep you updated on everything that happens. Talking about it with people does help relieve some anxiety, and makes me feel a bit better, as I don't have many friends I can talk to.

Thank you so much. Me and my girlfriend wish you and your wife nothing but the best of luck with everything. 

Take care :)

Hey Annie. Thank you for your response. I apologize in advance for how long this is.

We honestly don't know a whole lot, or anything specific besides what I've said in my original post. We've just found out today after she had an ultrasound done on her stomach, the dr who conducted it said he's found a mass in her lower right abdomen, but he couldn't share information more than that. He also said she's got to make an appointment within 1 weeks time to go see her GP to find out more, so she's done that. Now we just have to wait another week for her to find out more about the mass that was found from her GP.

We've honestly tried to get things done quicker/know more sooner, but it hasn't done us much good. Her GP told her they're doing the best they can and not to worry. 

What's been worrying me is that her eye doctor has referred her for more CT scans/tests to be done on her head, and these appointments for her CT scans have always taken months to arrive.

I didn't mention this in my original post, but she has had two CT scans done on her head, and nothing has ever been found. Yet she's had a scotoma on her left eye for over a year now. The eye doctors have all told her since the CT scans have found nothing, that it was all in her imagination/natural human blind spot every time she's been there to see them about it. She was told this up until a few months ago, when she went to the ER because the blind spot was bothering her so much, and they confirmed she has a blind spot at the ER, and that it wasn't all in her head like the eye doctors were saying.

After it was confirmed she had a legitimate blind spot, at her very next eye doctor visit the eye doctor said the only possible cause for the blind spot is a brain tumor, and he showed her diagrams and explained it all to her, and referred her for more tests on her head to be done. That's all we know regarding the brain tumor.

The same day before this appointment at her eye doctors where she found out she has a brain tumor, her GP suspected she had colon/ovarian cancer, and referred her for tests to be done. The tests came back testing high levels of some form of cancer.

So that's all we know as of right now.

I would just like to say thank you very much for your advice and support it really is appreciated. :)  The advice on not to google anything and try to pin something based off a google search is very good advice, because Google is usually our first response whenever something happens, it's become almost a habit at this point, but we'll both make sure we stay off Google for now. Also, it really does make me feel a lot better hearing another person reassure me that the treatments/medicines have gotten a lot better in this day and age, and that most old fears come out to nothing. I've had a few people tell me this on different forums. It's very reassuring and relieves some anxiety and worry, so thank you!

Thank you very much again for all your advice and support.

Take care :)

How nice of you to give so much information to us at a time when you are so obviously stressed and worried about your girlfriend's health.  I believe that owing to the well-documented problems with the NHS some of the deadlines for testing have slipped a little in some areas but hopefully not by a significant amount.  I am pleased you are feeling more positive regarding the treatment your gf will receive.   While there are no guarantees I do believe the position is much more hopeful these days.  

As I read your post I get a picture of the two of you efficiently taking action to push things forward.  Of course nothing is too speedy for the person we love.  Don't get consumer by cancer thoughts; enjoy the things you have always enjoyed; Laugh even and stick two fingers up to cancer.  Please keep us informed if you feel up to it.

CM

just glad to be of help and there are a lot of us on here who have been there, gone through our treatment and now help others

so ask anything you want when you want we are here to list and chat about the price of strawberries .... if that helps

best wishes to you both at this time

vatch

Hi CM121995

Your post really spoke to me and I just had to drop by and say I know exactly how you feel. I'm so so sorry to hear about you're girlfriend.  The shock is the worse thing and you've both been given really sad news.  I felt completely desolate when the doctors gave me my diagnosis,(this is the second  r me- how unlucky am I!!!!)  both myself and partner  were just numb. Then the emotions and reality of the situation sinks in but this takes time........... I've not posted much on here for a while as I've felt I just needed to concentrate on getting myself in a better position, putting my mind in a more peaceful and calm place and I've been in and out of hospital since September.  Chemo has been delayed but is now due  start on 16th February.  My cancer has spread but I've been told it's cureable and treatable so homing  in on those two words. I've found that things change quickly and you have  to deal with these changes as and when they occur.  So my advice is to try and stay as calm as possible, (i know that sounds flippant but it really will help) if you have a wobble it doesn't matter (both of us still have them regularily!) If you want to rant and rave that too is ok,  your probably both totally exhausted which makes everything worse, so any help with that could be an idea, cuddles hugs and let her do/say anything she needs to.  She's just so scared  that emotions and feelings are getting all jumbled up.  The doctors and medical staff are amazing and will do everything they can to help you both.  So any concerns questions and worries you have  they will do their best to answer. I've found my family and friends have been very supportive too so let them help.  People on this forum are not medically trained apart from the nurses but 'we've sat in the same chair' as you so totally understand you. No one judges we just listen and try to help. We've found NORMAL is something that really helps so again do things that you would normally. I'm thinking of you both at this difficult time and have everything crossed for you take care Jane x