Macmillan nurse called me

• Hi everyone I had my appointment yesterday for my PET scan results it showed more uptake than before and herder score is now 76% so a biopsy is needed however they need to do a surgical biopsy rather than needle so I have to wait to meet with the surgeon I want to thank u all for your continued support and I will keep u all updated xx

Hi VickyF,

Thanks for the update and I'm pleased to hear that the docs are continuing with investigating what's wrong.   Was the Macmillan nurse at the appointment?

You sound calm, but I guess you must still be apprehensive hon as was I waiting for a diagnosis.  

Don't let them keep you waiting too long for an surgical appt.  Give them a nudge if need be!  

Take care xx

Hi allotment lover

Yeah the macmillan nurse was there and she was amazing very helpful.

I'm not sure how to feel to be fair as still in limbo but fingers crossed will get sorted and know soon once and for all.

The macmillan nurse said if I haven't heard anything within a week to give her a call so hopefully won't be waiting too long.

Thanks for replying and keeping in touch xx

Does anybody else on here who hasn't being diagnosed yet still waiting for biopsy and know what's going on feel so alone and that nobody understands? 

I'm completely exhausted constantly needing at least 1/2 naps a day and sleeping during the night and people saying ur lazy pr u need to fight to stay awake even tho u are trying to but feel like it's impossible?

I suffer from RA, fibromyalgia and underactive thyroid ontop of this cancer scare so tiredness is overwhelming.

I have gone from working full time to not even being able to stay awake for a few hours and sick of people having digs at me all the time.

My macmillan nurse god love her tells me this is normal and people shouldn't be having digs at me but I feel so alone at the minute like everyone who I care most about is having a go feel like running away from everyone and everything 

Hi VickyF,

Although I'm not in the same situation as you waiting for your surgery and diagnosis right now I was there once last year before my melanoma result came through.   There seriously needs to be a group that people can always access called The Waiting Group as whether it's a diagnosis or results from tests people all feel the same terror, sleeplessness or like you sleeping a lot, nightmares, eating too much or to little, crying, working too hard, feeling anger, sadness, panic and so much more.

You are overloaded right now with the other three illnesses plus the current new situation with your lung investigations so it's like your Macmillan nurse says, it's normal.  Your body just needs to rest as there's only so much we as humans can take on board at once so just rest and do not be anxious about sleeping.  How are your two lovely teenagers dealing with things? Do they know what's going on hon?  I've always been a single mum and have just one daughter, aged only 21. 

As for people having "digs" at you, is this friends or family?

Others can be insensitive and often they mean well, they just try to laugh the serious bits away and joke around.  I hope that's the case here and there's no malice meant.  Do you have one or two friends you could share your real feelings with ?  Perhaps they could spread the word for you?  Yes it's isolating, you feel like you're the only one going through this so that makes you feel even worse.  It's not true though.  I'm here and many others too,  lots of us may be in similar positions and will support you.  Have you tried posting in the Emotion Support group.  I've been there and the support is heartfelt.  There's always the Rant or Rage Room if you just want to let off steam!

Another thought off the top of my head...do you have good GP support?  Is it worth making yourself a double time appointment with them to check up on your RA, fibromyalgia and thyroid issues plus share how you're feeling? Maybe it's worth a new post from you to access some more replies from here hon?

Hang on in there, you have strength in you to get through this hurdle.   If you're caring for two teenage boys that's exhausting in itself.  Can they do more washing up?  Do they make a good cup of tea/coffee?  

Are they too grown up for cuddly film and popcorn evenings together?  A little bit of snuggling with your kids always makes us feel good.  Sorry it's a long ramble to you but I am listening xxx