It's all moving so fast - advice sought

[Ki H.]

Hi, sorry if this is a bit rambling, this is just a very unfamiliar situation for us as a family, and we have had very little guidance from the hospital. 

 

My 77 year old mum was diagnosed with stage 4 pancreatic cancer with liver metastasis on 17th August (and, due to a miscommunication at the hospital, again on the 26th). Since these two very preliminary meetings, one with a GP, one with a gastroenterologist, we have not yet met the oncologist. 

 

She was meant to tomorrow, but it had to be pushed back a week to accommodate the biopsy (which was meant to be last Friday, but is now going to be tomorrow as the hospital didn't have any beds left). Everyone we have managed to talk at the hospital to has been extremely vague. They have given her helpful prescriptions (codeine, ondansetron, Creon) but none of these seem to be working quite right, nor is it easy to get hold of someone to discuss this. Where I have been able to find information, e.g. in the Pancreatic Cancer UK diet booklet, it has not been entirely reassuring. For example, the dose of Creon they prescribed her was unusually small (10,000 units for a meal), which I imagine is why it wasn't working! I can't help but feel that must have been a mistake or typo. Apart from these prescriptions, there has been no other information, no referral to any services or help, no discussion yet of options, no timeframe. I understand that some of those may be difficult until after the biopsy, but it is hard not to be frustrated - it's hard to know so little, while also knowing that it's so serious and terrible.  

 

My main concern is that her situation is changing much faster than these appointments can keep up with. Two months ago she was almost as normal. A month ago, she had some mild abdominal pain, lessening of appetite and was occasionally needing a nap after dinner. Two weeks ago, she began to find it difficult to eat much at all, and was having to take afternoon naps every other day. This week, she's been in bed most of the time in moderate discomfort. This afternoon, she started (for want of a better word) chucking up her guts continually after even just sips of water, and is in moderate pain, and has only just managed to go sleep. Were it not for the fact that we're going to the hospital early tomorrow morning for the biopsy and an overnight stay with observation, I would have tried to get her to A&E, it was that bad for a while. 

 

We left a voicemail and urgent email with the oncologist's team this afternoon but did not hear back before the end of the working day. Every time we have talked to them briefly on the phone, we have tried to impress on them how quickly she is getting worse, but the information doesn't seem to filter through to anywhere. I guess what I'm asking is: is this pace of change in her symptoms to be expected? Or is this something I should be making more noise about? Should I be more demanding and pushy? Is that even helpful? Is the attitude of the hospital normal, or is my concern that they aren't taking this seriously enough at all fair? Many thanks in advance. 

[Lee W]

Hello Ki H,

I would make as much noise as it take to get the oncologist to listen to me, but saying that the Biopsy is incredibly important to define what the type of cancer and the size the tumour, I doubt your mums oncologist will recommend any chemo until they review the results of the biopsy it took 3 months from my initial diagnosis to receive my chemotherapy so things don't move as quickly as we feel they should, but having said that my hospital trust United Lincolnshire Hospitals have been fantastic I can't fault them, I take creon with every meal and for me it was just a case of trial and error with the amount, I take four 25,000 capsules with each meal and I up it to six if I'm having dairy or pastry dishes I also take two 25,000 capsules with any snack I may have throughout the day which seems to work for me, my Macmillan nurse told me I cant overdose with creon so take as many as I like until I find the level that best suits me the 10,000 your mum has been prescribed wouldn't work for me I would be using bottle of them every three days, please give your Mum a big hug and tell her she's not alone many of us are fighting this awful disease.

[Ki H.]

 

13 hours ago, Lee W said:

Hello Ki H,

I would make as much noise as it take to get the oncologist to listen to me, but saying that the Biopsy is incredibly important to define what the type of cancer and the size the tumour, I doubt your mums oncologist will recommend any chemo until they review the results of the biopsy it took 3 months from my initial diagnosis to receive my chemotherapy so things don't move as quickly as we feel they should, but having said that my hospital trust United Lincolnshire Hospitals have been fantastic I can't fault them, I take creon with every meal and for me it was just a case of trial and error with the amount, I take four 25,000 capsules with each meal and I up it to six if I'm having dairy or pastry dishes I also take two 25,000 capsules with any snack I may have throughout the day which seems to work for me, my Macmillan nurse told me I cant overdose with creon so take as many as I like until I find the level that best suits me the 10,000 your mum has been subscribed wouldn't work for me I would be using bottle of them every three days, please give your Mum a big hug and tell her she's not alone many of us are fighting this awful disease.

 

Thank you very much for your reply! And for your own dosage and timeline information, it is helpful to be able to compare my mum's to something tangible. I was able to get the radiologist at the biopsy this morning to agree to contact the oncology team today, and to hopefully come see her (as she's staying there all day and overnight after the biopsy). I am relieved to say the least. I hope that you are doing alright today yourself. 

[Support Team]

Good morning Ki H,

 

I am sorry to hear of Mum's situation, this must be quite an overwhelming time for you.  Please feel free to be in touch with the specialist nurses on our confidential Support Line as they may be able to give you some very good guidance and support, certainly regarding the use of the pancreatic enzymes as you mention you are struggling with some of the information. A conversation by phone or email may help with some of this information.

 

The support line nurses are contactable on email: nurse@pancreaticcancer.org.uk or on the free call phone number 0808 801 0707.

 

I hope you feel able to reach out and have some contact with Mum's local team soon.

 

Thinking of you,

 

Administrator

Pancreatic Cancer UK

[CJG4CJG]

My husband took poorly on Sunday. Took him to gp on Monday who despite my husband saying “I feel fine, just a little pain” referred him to hospital who were very quick to say it’s gallstones. His scans were pushed back because he presented so well, strong brave character- rugby man. “Your not imminently dying the consultant said”. On Wednesday, he finally got the scan, pancreatic ca, liver, Lung and peritoneal mets.  I walked him out, cared for him at home (told our young children daddy who was ‘fine’ last week is going to die very soon, and he died holding my hand on the Monday. 1 week we had. 3 nights of which were spent separated by the hospital and 2 he was unconscious…. So we lost him 2!. information was not communicated by a doctor, nurses, or anyone…. Just another bed number dismissed by staff and badly treated. As a nurse who has worked in many acute trusts, if it wasn’t such a whirlwind of shock, stress, grief, PAIN ….. I’d of leaked story to papers! Unfortunately it is true, whoever screams the loudest gets more attention! If your concerned which by the sounds of it you should be, scream loud, louder, and even louder than that until you get answers! Afterall, 

 

The GMC (doctors) and the NMC (nurses) states the importance of a holistic approach without discrimination. To provide evidence based care in a timely manner according to priority. However I feel acute trusts are often, in my opinion, governed by their hierarchy… bed status… funding…etc as opposed to what should be the priority ‘THE PATIENT’.  With the fast progression of Pancreatic CA (and my husbands was devastatingly obseen) ‘pushing back a week’ is a week too long in my opinion! Maybe if their husbands, mothers, brothers or colleagues were diagnosed they would act quicker? In my opinion, Just saying. 
so I reiterate SCREAM LOUDER 

[worrier]

Hi, So sorry to hear about your Mum. I am on Creon (25000 dose) and have been for 14 years, after going through a Whipples procedure and had part of my pancreas removed. (non malignant, thank goodness)  YOU CANNOT OVERDOSE ON CREON. So I would certainly try giving her more capsules. As an example I take 6 capsules with my porridge in the morning. At the other end of the scale, if I have fish & chips or pork chop lunch then I may take as many as 15/20.

I hope this little bit of advise helps and I wish you and your Mum all the best.