How are you doing Bluebear? We’re still waiting. Trying to stay positive! Laughed today as nearly lost mum down the loo as she’s lost so much weight. 

Podge.x

Hi Podge 

Thanks for asking.  Bit all over the place.  I heard on Tuesday my CT can was okay bar a couple of harmless cysts on my kidneys.  Initially I was euphoric as I had got myself into a dreadful state but once I had had time to think again it wasn't long before the fact I still have the symptoms and no answers, hit me and I started getting anxious again.  I now have an endoscopy booked for 12 days time.  Not looking forward to that but still pleased to be referred for further investigation.  My doc also prescibed a PPI drug Omeprazole to try in case my symptoms are caused by an ulcer or too much acid in my stomach/duodenum.  I was happy to try it although my hunch is that isnt my problem but 48 hrs in I am not feeling any different (It apparently can start to work quite fast), the side effects are similar to some of my original symptons so not sure now whether I feel some of these due to the underlying condition or the PPI - and I have to come off it 7 days ahead of the endoscopy anyway (although on the latter point I have received conflicting info) but dont want to risk masking symptoms (which I understand is the risk) if putting myself through the endo so will stop taking it today or tomorrow.  

I will get a tepehone appointment was a specialist or consultant 4 - 6 weeks after that which seems a long time but I know waiting lists are at an all time high.  I am worried on so many levels: that the endo wont show anything and I will be further delayed in getting a diagnosis for a cancer that might be growing but also that it will show stomach or other cancer and if it does, the delay in treatment I might experience.

I can be quite positive when I am not actually experiencing pain but when the pain in my back comes on (and neither I nor investigations can discover what might be the cause of this, which is by far the most worrying symtpom to me), I just sink mentally.

i keep telling myself I have had clear ultrasound/chest x-ray/CT and bloods (more of those due tomorrow) so be positive but then the gnawing pain in my back starts and I just cannot think of a single innocuous reason for it.  I am still worried about pancreatic cancer as I know Ct scans are only accurate in about 70% of cases and in the remaining cases endoscopic ultrasound is the next step but I understand that is only offered at a hospital in London in my area ( I am in the South East) and only on a specialist referral so if the endo. i am scheduled for doesn't show anything, I guess that might be the next stage but will probably takes further weeks.

Well, I bet you are sorry you asked now .  Possibly a case of too much information but thank you again for asking and it does help to tell someone your worries.  

Bluebear x

I’m so sorry you’re still feeling so anxious, but try and be reassured that all your tests so far have been positive and that you will be seeing a consultant soon. Things are moving forward for you, albeit slowly, so try and take comfort in that. I know how horrible the waiting is, it’s almost the worst bit. 

Coincidentally, we’re in the South East too. 

Podge.x

Out of interest, how did you get your results?

podge.x

The doc phoned with my CT results as she knew I was hyper anxious.  This was only 48hrs (not inclding Sat/Sun) after the scan so very quick, so I was fortunate in that regard.

Bluebear x

Just to put your mind at ease modern helical or spiral cts have an accuracy of 98 percent most of the information on google is so out of date x hope this helps

Thanks Alfiemoon2008, I expect you are right  (although I do check the publication dates of research papers I read) and  things are hopefully progressing all the time in terms of disgnostic tech!

Best wishes, Bluebear

Hi Bluebear,

I understand your anxiety, it is indeed a frightening illness to think about, but you are right, you're not alone.

I'm currently awaiting results of a biopsy & (yet another) ca19.9 blood test. I started getting abdominal pains about a year ago. I will probably post my long story sometime (I'm new).

It's natural to be anxious about illness, but if you find that the worry is affecting your life, I would look into ways to try and alleviate it. There are loads of resources on-line & your GP may be able to help. My own way to cope (which works most of the time) is to think 'if I worry, & it's not cancer, I'll have wasted precious time over nothing, & if it is, my time may be more precious, and I certainly don't want to waste it'. I know it may sound blasé, but I can only say what works for me.

Of course, there are times when I worry, feel frightened, feel guilty towards Mrs WilliumBill & the kids, but I just try & get through those times by thinking about how they will pass. I also find music & reading help, to distract me.

I hope this helps in some way, & that the CT results give you reassurance. WB

My dad was a GP, & taught me that doctors don't know everything, but they know a hell of a lot :-).

The digestive system is incredibly complicated, and there are so many things that pains etc. can be. Also, PC can be very hard to diagnose, so it may take some time for you to get an answer.

i'm trying to trust the process (my tests have become more specific as my year of illness has gone on), as I can't do much else. I'm sometimes convinced of the opposite - that it's just the back end of a bout of pancreatitis, & that I'm wasting everybody's time.

Isn't it strange how people react differently to this stupid situation?

I wish you the best.

Hi WilliumBill,

Thanks for your post. I also switch between being convinced mum is on deaths door to thinking she’s malingering and just needs to eat a big cream cake 

I’m finding the waiting for results really really hard to bear. Mum’s a recovering alcoholic and I’ve been staying with her since she broke her hip 6 months ago as she can’t cope alone and won’t accept help from anyone else. I’ve watched her deteriorate and I’m pretty convinced it’s cancer, although I do wonder if she’s lost so much weight just from stopping drinking ‍♀️

We really just need to know now. I miss my family, my husband and kids, and I want to go home at some point, but don’t feel I can if she’s potentially seriously ill. Mum’s also recently been told she has a detached retina, double cataracts and macular degeneration in both eyes and is now effectively blind and deaf - but she won’t entertain getting treatment for that if she’s got cancer.

Everything hinges on those results but they’re taking their own sweet time in arriving!

Podge.x