Hi Rose,

I've been thinking of you today. 
First one is the worst, I'm told. It'll be easier from here on in. 
Hope you are feeling OK. 
 

love and light,

Danielle xx

Hi Rose, 

I hope you are getting on ok with your treatment. And you're still taking the time to reply and share your journey, which is incredible and will help people so much. I am thinking of you. It must be so difficult, but even over a forum it comes across how strong and brave you are. You've got this! 

And ladies, I hope you are all doing okay too and that you all receive good news from your appointments. It is so scary when something like this happens and it does take over your life. But I'm so glad you've all found this thread helpful and a way to support eachother through such a difficult time. 

UPDATE from me - for anyone wondering and in case anyone comes across this in the future. It's always helpful to hear the outcome. 

I've had blood tests which all came back normal and I had my ultrasound today which is also normal. The radiologist said some of the lymph nodes in my neck are still raised but nothing to be concerned about. I'm not worried about this anyway, as they've been there for so long and not really changed. 

The only frustrating thing is, that the scan didn't pick up the lumps arond my collar bone, even though we could feel them. She said they could be hiding under the bone or it could be part of the muscle that is raised. I'm not sure. I would have liked her to see them and be able to tell me they're ok, as this is what has been concerning me. I can literally feel 2/3 each side and one is a rock hard pea kind of size, the other are more oval shaped. 

But, its still a positive outcome. I've had clear test results and it's been going on for a while, so I'm hoping if it was anything serious that something would have been picked up. I would of course prefer a definite answer of what is causing this, but sometimes there just isn't one or not one that can be determined. 

I can't tell you how worried I've been at times and absolutely convinced myself I have cancer. We read symptoms online and it's so easy to self diagnose, as most common symptoms are present in every illness. So if this can help anyone in the future, please believe that even when you feel 100% certain you have a serious illness, its not always the case and it's hard to see this when you're in that mindset. Don't let it ruin your life whilst you wait for tests and results, because you really don't know. But it's always worth getting checked out. Xxx

Hi Sallx, 

Glad to hear things are looking up for you and everything is hopefully fine. It is hard not having a definitive answer though I'm sure.

I had my first hospital appt yesterday, very quick with a lovely ENT consultant. After feeling my neck and hearing about my ongoing itchy legs, and my elevated ESR in my bloods, he referred me for a chest, neck and abdomen PET-CT and an ultrasound guided core biopsy. He said I should have the tests done in the next week or so so fingers crossed I get the letters soon. He was quite frank with me though and basically said it is very very likely a lymphoma given all my symptoms and the size and number of my enlarged lymph nodes at the base of my neck, they are rock hard and there's a bunch. He said really the bigger concern is that it originated somewhere else, hence the chest and abdomen PET-CT. Fingers crossed it is local and I've caught it early, but I've had symptoms for months and only a lump on neck for a few weeks so I am a little worried.

I'm so sorry to hear this. I hope you are managing OK. Its good that they are getting things done quickly but I bet it still feels like a lifetime. There's still that small chance that it could turn out to be something less serious and I really hope that's the case for you. But I know in your situation it's best to prepare yourself as your doctor has done. 

If it does turn out to be Lymphoma, hopefully you have caught it early. I'm sure you know that a lot of lymphomas are very slow growing and you can even have some for years before you get symptoms. So even though you've had symptoms symptoms a few months, it could still have been caught very early. Again, I'm sure you know that a lot of lymphomas have a really good chance of being treated successfully and making a full recovery. I know that won't ease your worry, as you must be so scared right now. But hopefully it helps a little. Stay strong and we're here if you need to talk anytime xxx

Hi Sal, so pleased to hear your recent tests have gone well. How frustrating that the collar bone nodes couldn't be viewed, but as you say, the bigger picture is that everything is fine so that can only ever be reassuring. You're so right when you say sometimes we will never know why something has happened, so we have to accept certain things and move on. 
I do hope Rose is doing ok, I've thought about her a lot. 
Danielle x

So sorry to hear your possible diagnosis Judgey, as Sal says there is still a chance it may be something else but you are wise to prepare yourself for a lymphoma diagnosis. Keeping everything crossed that it's localised to the neck. But know this- lymphoma is one of the rare cancers that still has very high treatment success rates even when caught at stage 3 & 4. From what I'm told- this waiting part is actually the worst bit. Once you know what's what and start your treatment, you're going to feel an awful lot better and you will come back here and tell us how you have kicked it's butt xxx

Hi all - sorry the radio silence. Rocky few days but all ok.

I'm pleased that overall everything's ok Sally but it is frustrating about the pesky collar bone nodes - I'm sure that anything sinister would have been picked up but always good to keep an eye. 

I'm sorry to hear your story Judgey - doesn't sound like a particularly cool way to be told news but I'm sure they know what they're doing.

Well, I'm 1 chemo session down and so far the worst thing has been the inconvenience of my PICC line (as I wasnt expecting it I suppose!) Tomorrow is a clinic day and then chemo again on Monday. It's tough but, as I keep reminding myself, I'm tougher!

If anyone needs me please give me a shout - I'm sorry if it takes a while to get back but I will answer promise.

Sending you all love and light xxxx

Hi Hmr2711,

I'm so sorry to hear you're so worried. My experience is the only knowledge I have so please don't put much stock in what I say!

I never had to go searching for my lump by feeling around as it was prominent and could be seen - because of where it is and how big it is. 

2 inches sounds big- is it worth doing an online consultation thing if your doctors offers this service? 

Please try to stay as calm as possible as, I'm sure you've read from the other contributors on this thread, it doesn't make you feel any better. My type of lymphoma, although aggressive, doesn't depend on being caught early for treatment which is amazing.

Please look after yourself and be kind to your self too.

Lots of love xxx

Hi Danielle, 

Aww thank you and hope you're keeping well. Yes it's good news so I'm very pleased. It is frustrating as if she had been able to see them and say they're cysts/ or whatever they may be, then I'd be 100% satisfied. Obviously without that, there will still be that little niggle. But I just need to try and ignore that now and move on. I'm very lucky and very grateful and If it was anything serious hopefully something would have been picked up. Like we said, sometimes we will never know. 

And Rose I'm sorry to hear you're having a difficult time. I can't imagine what you're going through, but you are definitely tougher and will beat this. Take one day at a time and let your lovely family look after you. Those cuddles from your children will get you through. You really are incredible. 

Sending lots of love xxx