Gall Bladder and being petrified........

Hello Helen

You are allowed to whinge here, though I think you have every right to be annoyed/scared. Have you tried PALS? Do you have a Macmillan nurse you can speak to? Hope you get some answers soon

Take care xx

A whinge is in order ,and another whinge too !!

seriously ,pals is worth a call as is head of governors ,medical director of hospital ,your gp too

if it is gall bladder it can be removed keyhole ,

a real worry re chemo stopping and starting , you need a chemo plan 

hope you are sorted asap

xxxxx

janet

Hi Helen,

What a nightmare!!! No wonder you're petrified....

A couple of things jump out.

1.The urgent referral letter hasn't been written. I would get onto PALS as soon as possible, your Oncologist has to respond.

2. Your oral chemo is being delayed by infection in your gall bladder, so that's your priority. You DO need to go into hospital for the 7th time because the risks from the infection are potentially life threatening. You could develop sepsis, which is treatable but needs to be caught early. You can't have gall bladder surgery with an infection.

3. You can't afford to go on SSP or lose any more wages. I would ring the Macmillan help line or speak to an advisor at the hospital to see what financial help is available. It's just unthinkable that you've got that added stress to deal with when you're already going through so much.

4. My employers got fed up with me constantly having time off....WTF??? Do you have an HR department that could support you?

You're not whinging, you're having a really awful time and don't really have anyone to chat to about it. But you have us, and anything you say is allowed and completely understandable.

Please, please follow the advice about having a temperature, however daunting it feels. You've had 18 months of stability and survived repeated infections already, and need to be well enough for gall bladder surgery.

Wishing you the very best of luck, and sending you a big hug xx

Morning Tinalay

Thanks for your reply.

Unfortunately HR at work are pretty useless, they are not about the employees but company profit!!

I contracted sepsis from work, I work in an animal feed merchants so we are inundated with rodents. Employers and HR rfused to accept that I contracted sepsis and told me to prove it. I replied prove I didn't get it from work, so that's their attitude, not great!

I will contact PALS tomorrow when they're open. The annoying thing is my treatment up to July has been fantastic and really couldn't fault the NHS. I've been incurable since 2013, I know my body, I know what pain is what, but my times spent in hospital I was treated like an idiot as though I had no idea what was going on with my body.

I repeatedly kept saying scan scan me, lets get to the bottom of this. But no just keep coming in for IV antibiotics.

I even ended up going in via ambulance as temp was so high and they thought i was nutrapinic[can't spell it] To me this is such a waste of money and me taking up a bed. They should've scanned me straight away, seen that it was an inflammed gall bladder causing the problem and booked me in for a removal. Instead of being told I can't have my chemo and I feel I'm at such a great risk of the bloody cancer growing. I've been worried sick for 8 weeks thinking, well that's the tumours growing again in my eyes or my lungs or my liver or my bones or perhaps one has popped up in my brain as been having dizzy spells [ due to gall bladder infection]

I feel frustrated and very weary of it all...............................

Thanks for the hug much needed

Xxx

Flowerlady thanks for your reply,

I feel I need a MacMillan nurse to fight my corner, I will contact PALS though

Thank you

Xxx

Thanks Janet, it's the stop starting of chemo that worries me more than the painful gall bladder.

Hopefully will get some answers tomorrow, after I've made a few phonecalls

Xxx

Hi Helen

what an absolute nightmare. I think Tina said it all so I’m just going to add my hugs and ask for an update. 

I know what you mean about being treated like an idiot by A&E and in hospital. It’s so frustrating! I’ve got so used to being treated like an informed adult by my oncologist and GP. It comes as a shock every time I get treated like a kindergarten child and I end up getting hostile and bolshy and that doesn’t help either. 

Lots of love 

xxx

Hi Helen

I had gallstones around 18 years ago and had to have my gall bladder removed via key hole surgery.  

I'm not sure about you, but I could tell when an "attack" was coming on and, my GP advised me to take Gaviscon liquid.  It really did help me and helped take the edge of the terrible pain.  I also found that certain foods brought on an "attack", particularly spicy or acidic foods - onions and oranges for the worst for me - and I couldn't even bear to smell garlic - so I avoided these.

I ended up having it removed via BUPA, as the NHS were taking their time and my GP estimated the waiting list for removal at the time, was about two years.  I later found out (via a friend whose wife had trouble too) that if you were admitted to hospital via A&E, whilst having a bad "attack", that you could jump the waiting list and they would remove it following your admittance.

Hope this helps and good luck.

Jan

Hi Helen, I've just caught up with this thread and my heart goes out to you! My husband had been in and out of hospital 3 times with his gall bladder, one of the times we were actually on a weekend break, in between my hospital appointments! (Busmans holiday or what)! The third time he was admitted I demanded to speak to the head of department who said the trouble with the gallbladder is we can't operate while it is flaring up, then he went to walk away! I said smiling, then I take it you will give him antibiotics and keep him in until it settles and then do something about it! Then he said the first time this happened, they saw gallstones but the recent scan showed none! He now had jaundice so it may be his liver! I asked him what he was going to do so that I knew before I wrote a formal letter of complaint!

He was in hospital for 8 days, then they did an endoscope which found the stone had broken up but was stuck between the gallbladder and the liver! He's been fine since!

Please don't give up, contact PAL, your McM nurse, GP anyone who will listen! It's your life, if it was one of the surgeons family do you think they'd wait this long? It's a sad fact but these days you have to fight your corner! Good luck!

By the way, I've had my gallbladder out too, a long time ago but my oncologist advised as soon as I started a cancer drug, to take one Actimel each day as well as the tablets she prescribed to help my stomach! Worth a thought once things are sorted out!

Many thanks for your reply. The referral letter has now been written and sent to relevant Dr/surgeon. I contacted surgeons PA and explained my predicament and said she would chase it up for me.

The attacks are coming more frequently now had two last week with a high temperature.  Luckily though didn't  affect my nutrifils for starting chemo cycle! 

It's so frustrating  and ironically my neice had her gall bladder removed last week.

More waiting as usual.......

Many thanks 

Xx