A forum for any other issues around pancreatic cancer

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curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Thu Jul 25, 2019 2:27 pm

Aww, thank you Lullabyebye. Still not heard back regarding CT results but feeling slightly more optimistic after an appt with Gastro Dept at a different (private) hospital yesterday. Consultant felt quite sure that I would’ve heard back within a week, if it was serious, based on it being an urgent referral. He assumes my file is sitting on a pile of other ‘normal results’, so hoping he’s right. He was a little baffled (to say the least) that my GP even ran the CA19-9 test as my symptoms are lower GI, not upper. Obviously I need further investigation (sigmoidoscopy booked for 2nd Aug) but he feels everything is pointing to a functional bowel disorder (that’s exasperated by antibiotic use - hence the timing of the flair-ups) so has instructed me to follow a FODMAP diet in the meantime.
I’ll keep you posted with any new developments, but at least I can eat and sleep easier (heatwave permitting 🥵) for now.
Once again, thank you so much for your support.
To anyone else reading this, the nurses on the helpline are fantastic. I’ve spoken with Nicci twice, without really knowing why I was even ringing them, or what I hoped to gain. She is so professional, caring and compassionate, it makes such a difference if, like me, you’re finding the whole NHS process very uncaring and uninformative xx

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: Scared and desperate

Postby PCUK Nurse Jeni » Thu Jul 25, 2019 3:56 pm

Hi Curly Sue,

Thank you for posting your update.

Its so good that you are feeling more positive after the consultation, and that further investigations are pending. It is good to have been given some reassurance also regarding the CT scan results, and the potential "whereabouts" of these.

I am so pleased for you that you are feeling a little better about the whole process. Thank you so much for your kind comments about Nicci - they are all true of course!

I will ensure that Nicci is aware of your feedback.

I hope the diet also helps with some of your symptoms.

Kindest regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Lulla bye bye
Posts: 8
Joined: Thu Apr 04, 2019 7:06 pm

Re: Scared and desperate

Postby Lulla bye bye » Fri Jul 26, 2019 4:00 pm

Hi Curlysue, so glad you’ve seen someone who has reassured you a bit. Hopefully you will get the results of the CT scan really soon so you can be fully reassured.
Yes please do keep us updated.
Take care x

curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Thu Aug 15, 2019 3:41 am

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Last edited by curlysue on Sat Aug 17, 2019 1:26 pm, edited 1 time in total.

curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Sat Aug 17, 2019 1:16 pm

curlysue wrote:
Update to say the sigmoidoscopy was clear, but I’ve still heard nothing from the CT scan I had over 5 weeks ago. My GP is now saying a 6-8 week wait is not unusual. At the scan, the radiology nurse said I’d hear “probably by Friday (i.e. 2 days after) and absolute tops within two weeks.” The Hepatobiliary admin (?) told me over the phone it would be “a minimum of two weeks”. My gastro consultant (at a different hospital) said he was sure it would’ve been within a week if it was anything serious. So much confusion. Still, I’m hoping ‘no news is good news’ holds true.

I’m trying to follow a FODMAP diet for now, until I see Gastro again on 4th Sept.

Against my better judgement, I rang the hospital I’m under for hepatobiliary. She couldn’t even tell me if my scan had been looked at. She told me I “will be in the system somewhere. Possibly referred to a different department” but that no timescale could be given as to when I might hear. She could offer no reassurance that the length of time it was taking could indicate it wasn’t cancer. Feeling some of the old panic setting back in, and kicking myself for even ringing them.

Borobi
Posts: 8
Joined: Wed Feb 20, 2019 9:23 pm

Re: Scared and desperate

Postby Borobi » Sun Aug 18, 2019 10:30 pm

Hi Curlysue.

Sorry that you’re still waiting. It does seem a very long time to wait. Was it your GP who referred you for the scan? If so could you ask them to chase it? it’s probably easier for them to get information.

My partner was referred under the 15 day cancer target. He got the phone call from his GP 3 days after his scan - and that included a public holiday! So it would be nice to think that as you haven’t heard yet that it means good news. But I know that it’s not necessarily the case as not everywhere is as organised as our local services.

I hope you hear soon. Keep trying to look on the bright side.

curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Tue Aug 20, 2019 9:31 pm

Thank you Borobi. I returned from work today to a very short, but oh so sweet letter from the hospital. My CT results showed “no significant abnormalities” so they’re discharging me back to my GP 😀 I’m so, so relieved. There’s no answer as to why my CA19-9 levels are/were elevated. I will continue on my journey to try to resolve these digestive issues that have been affecting me for the last two years.

Thank you to Lulla Bye Bye, Borobi, Nurse Jeni and the wonderful Nurse Nicci. You were all so willing to offer support and kind words when I was feeling lost and scared. I am truly, truly grateful.

Borobi, despite what you’re coping with, you still made time to offer kindness to a complete stranger. You are a gem. I wish you and your partner the best of luck for the future. You will be in my thoughts xx

Lulla Bye Bye, to read your messages of support, and to know you were thinking of me, gave me
enough light to chase away the worst of my despair. A million thank you’s xx

Nicci, we had two phone conversations when I was at my lowest point, and you will probably never comprehend the impact your kindness, calmness and understanding had. You were honest with me, sharing your experience but without giving false hope. You were my angel, just when I needed one. There are no words xx

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: Scared and desperate

Postby PCUK Nurse Jeni » Thu Aug 22, 2019 10:23 am

Great News Curlysue!

Very pleased for you!

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Lulla bye bye
Posts: 8
Joined: Thu Apr 04, 2019 7:06 pm

Re: Scared and desperate

Postby Lulla bye bye » Thu Aug 22, 2019 12:56 pm

So pleased to hear your wonderful news. Sorry you had to go through such an anxious wait to get the all clear. Lots of love xxx

mummy.may
Posts: 3
Joined: Fri Aug 23, 2019 1:42 pm

Re: Scared and desperate

Postby mummy.may » Wed Aug 28, 2019 12:22 am

hi. i wont say try not to worry. i can read your fear in your words.
this is my first time using this sight. i promised myself, that i would join when i was 5 years post op, and here i am. i hope it comforts you. and yes apart from disabilities not cancer related, i am FINE.
Can i suggest that if you are going to google, google the helpful stuff about PC . like diets if your suspicions are correct then you have one hell of a fight on your hands. you will need to be strong and fit to give you the best chance of a good recovery.
there are people 12 years post op. and lots of 5 years like me are still going. try not to feel so desperate. this is a fight that is winnable, so prepare for battle now. eat well even is you don’t feel like it. your body needs it even if your mind is telling you that you are not hungry. eat well be strong and lets all hope you don't need this forum in the future. Bless you. x