Waiting, worrying, waiting, worrying...

Hello Niloc

So sorry to hear what you are going through. I’m further down the line than you but I know how it is. 

The worrying and not knowing was the worst thing about my journey. You are given a bit of information and then your mind goes wild. I also made it worse my googling so well done you on not going there!

I kept myself busy and fortunately I have a very busy job which helped. I also went to the gym regularly, did yoga and ate well, just to make myself feel better. 

I would also hound them daily until you get your results. 

Good luck. 

Rebecca x

Hi Nilco,

I am soooo with you on this. Everything you say describes how i'm  feeling … the title is perfect!!

Its is the waiting that is screwing me up & of course what on earth i'm going to end up looking like at the end of this. My mind never switches off & now the more im hearing about scars the more I am starting to really panic as to how bad mine will be (BCC is under my eyelid on my face) The more time it takes the more I am becoming increasingly anxious. I've only known I have BCC since 8/1/19 & that's feels like months ago. Still no date for surgery but Consultant will send out a letter for a biopsy & after the results of that he'll refer me for moh's surgery ….. when? I just want to be further down the line with all the others offering their support, saying i've been there & its no where near as bad as I imagined! That unfortunately seems a long way off at the minute :-( 

Thanks greatly for your replies folks!  Much appreciated.  I've come round to thinking that, when GPs first see a patient who believe that their symptoms may be cancerous, it should be a standard practice to provide those patients with an avenue for counselling or advice if they should need it.  Especially until the diagnosis is confirmed positive or negative.  The damaging psychological effects seem to be overlooked.  At the moment, it's left entirely up to the unfortunate soul to writhe in torment, or try to find some plateau of peace on their own.

This is so true & because you are given no information to read up on the only option is to turn to Google which has been both reassuring & a daunting experience for me.

It good to be able to let out my fears on here or read other experiences.

I think I'm learning that despite generally being a strong person this time I’m failing myself with not being able to cope .... 

C xx

It's a very positive step to be in a position to talk about your fears, for you find people who - whilst not being totally able to give the answers you desperately seek - are in a position, from experience, to provide comfort and help give that rampaging mind a little bit of rest.

In my first days, when I really was tottering at the end of the world, I phoned the Macmillan help line and talked to a nurse.  I so thoroughly recommend doing that, because these people are not only knowledgeable, but know exactly how we are feeling.  Phoning them that once gave me that little bit of support that helped see me through the past weeks.

Everyone I have spoken to who knows anything at all about this situation, says DO NOT Google!  The information is very often either erroneous or out of date.  I did so to start with, and regretted it.  Now I'll just not go there, no matter how great the urge.

Please don't feel you're failing yourself because of your fears and feelings - they're all perfectly natural under the circumstances, and I'd challenge anyone to truthfully declare that they wouldn't feel the same.  In fact, what I've found is that you discover a side of yourself that you hadn't known before.  For myself, I've always been a bit of a loner when it came to hiking or biking - heading off for a day in the hills, the beach or wherever.  Now, I find I daren't do that because, alone, I just trudge along with my mind dominated with these blasted thoughts.  For the first time in a very long while, I feel far more at ease in town crowds, or in a café.  For me, that's weird, but I'll go along with whatever works to chase away those little demons!

Hello to all here....I'm a newcomer to this part of the online community. 

Couldn't agree more about the 'no Googling' advice.  In only a few minutes I can end up with everything from acute appendicitis to several rare diseases I can't even pronounce.  Re the possibility of a bcc (just using the initials is far quicker and to me, at least, keeps it in its place, if you see what I mean.) I hope you will get the results you want quickly.  However, if it is a bcc, may I share with you what two of my medical team said to me?  My GP said she thought it was a bcc and added, 'don't worry, it's not the sort that could kill you!'  We know each other very well, and are always straight with each other!  The other med professional said, 'don't worry, it's not the burrowing kind'.   I found both of these pronouncements very encouraging.  

Well it was a bcc.  I say 'was' because as of yesterday it is no more!  I had my op under sedation, everyone was so nice and I didn't have to stay in.  I had a good nights sleep last night and am taking it very easy today and for as long as it takes.  Scarring on my nose and face should eventually be minimal if I do as I'm told.  And I will. The biopsy reports should be in by the time I have my next consultant appt., but the surgeon is optimistic that he got it all and that it was a bcc and not invasive. 

The procedure was ok.  Really, it was.  I understand everything we all feel when we hear that word 'cancer'......now three out of the four of us in my immediate family have had a diagnosis.....but we soldier on.  May I share a service with you all?  You may know that Macmillan works in partnership with Boots?  Their Chemists are trained to help with drug queries, of course, but some stores have No.7 ladies who are gained to help us gals with makeup during/after treatment.   Just a thought for when our scars have settled and we could do with a bit of pampering.  I shall certainly be one of the queue. 

Sending all here love and solidarity! 

Sandy x

Thanks Sandy!  That's very encouraging.  Great to hear that you received all the info you needed, and also very efficient treatment.  I don't have that sort of good rapport with the GP I've seen (who also carried out the curettage), so am kind-of left dangling in mid-air.  Also, our GPs are strained to the limits in this area, and getting appointments are extremely difficult - especially if the matter is merely to discuss something.  Every time I enquire at the surgery re my result, the answer extends the waiting time.  First it was 2-3 weeks, then 6-8 weeks, and now it's expected to be well beyond the 8 weeks.

If the result does indeed show up as BCC, I'll certainly keep in mind your reassurance.  Thanks again, and all the very best.

Just another update as the weeks trudge by.  Now approaching 7 weeks and nothing heard.  These past 7 weeks have been amongst the most strained times in my life, and I'm now beginning to wonder if my nerves will ever be able to get back to normal after this.  The last time I enquired at the GP surgery reception, I was told that if the result is clear, I'd normally receive a letter direct from the hospital.  If not, I'd receive a phone call from the GP.  Now, what do you think that little snippet of seemingly-innocent information does to you?  Every time the phone rings, heart-beat goes into overdrive.  Every time the postman arrives and no hospital letter with him, the heart sinks.  Ridiculous!  I've been through some tough times in the past, but I can certainly say that this has been of the longest duration and worst psychologically.  How much longer?

Hi, Chilly, 

Was just looking through these posts again and the last line of yours leapt out at me......may I share a few thoughts?  I'm sure that you are a strong person....and that you still are.  It takes a strong person to admit that there are times when they don't feel strong at all, I think.  You are not failing yourself or anyone else by 'not coping'.   What does 'not coping' mean?  What does 'coping' mean?  It is it is natural to be fearful, natural to cry if we need to.  It is natural to worry......we are human.  You may have seen Macmillan's latest campaign where a discussion about the language we use about cancer is being held.  We often use words of combat.....brave, courageous, strong, fighting, battling.....all those kinds of words.... but when we hear them it can make us feel as though we are failing if we don't 'live up' to them.  

Who does 'live up' to them?  Some people might seem to on the surface but what of those private moments? Those middle of the night moments?  I think that you are coping....in your own way.  For one thing, you came here to share with everyone and the sharing and knowing you are not alone in how you feel really helps, as you said.  That's coping.  Not only did you share, you have also encouraged others.  Coping with a big capital C.  If you have what I think of as a 'wobble'....a tears and fears outbreak....then that's coping too because you need to let go of all that stress and wobbles allow you to do that. 

Don't be hard on yourself.  We get through the best we can and although we are sharing the journey we are all different in the way we manage things.  We can look at others and think they are doing it better but in fact they are doing it differently and we don't always see their wobbly moments.  Sending a gentle hug.  The face isn't up to doing anything other than gentle at the moment.  Stitches out on Thursday, maybe....xxx

Hi, Niloc, 

I absolutely get how frustrated you must feel.  The reply from your surgery gives you no info you can rely on....just that word 'normally' says it all!   A phone call to tell you that all is not well?  That's appalling!   It's that sort of thing that Macmillan is trying very hard to stamp out but it's an uphill job.  I have little faith in hospital letters.  I've had to go privately to get my bcc sorted - reasons too long winded to go into here - although I knew it could be done on the NHS.  After I booked the private op I suddenly got an NHS appt through, which I cancelled.  Have since had three letters from them...one before Christmas cancelling, and two on the day of my surgery, separate enveleopes, one again cancelling the appt, and another reinstating it.  The words party and brewery come to mind. 

My American friend has a phrase......it's the squeaky wheel that gets the grease.   Be that squeaky wheel.   Keep on at the surgery.  Ring  the hospital.  Give our Macmillan helpline a ring....number at the bottom of the page.....and ask them what you can do about this.  Seven weeks is a ridiculous amount of time  and makes me think that there's something stuck in the system, should there have been one... 

Gentle, but positive, hugs. X