frustrated

On March 12th my husband was diagnosed with pc he was badly jaundiced a stent was fitted 5 days later which has helped he was sent for a biopsy but this was not successful as the Dr was unable to get down far enough he has now become diabetic and is on meds tablets we are now waiting for a appointment to have another biopsy via his back but we don't seem to be getting any were .3 months have passed with no treatment all we know is its stage 4 inoperable and from his last Mri has grown but not spread .He is 68 years old and has lost over 3 stone in weight surely we should be more advanced than this or is this the normal waiting time I am worried sick and feel he might pass away before we even star treatment

Hi Sheena,

So sorry to read of your husbands diagnosis.

It is terrible the length of time people have to wait for appointments. People with this cancer do not have time to wait for any appoinments.

Please don't wait to hear from then. Chase them and chase them. It is possible. You can be persistant but polite. Do you have an Oncologist? Call his secretary, tell her that your husband is stage 4 and that you need help now. It is upsetting to do, because you shouldn't have to, but sadly, you do. You can also call the biopsy dept and speak to them direct for an appointment. I did this with my Dad. He was going to have a long wait. It took me aboht 6 hours and lots and lots of calls, but I did it. I never bothered with receptionists after that. They don't advertise that you can go behind the scenes to chase things up, but believe me, you can.

Is your husband taking Creon?

Leila xxx

No to creon unfortunately we live on an island and have to travel by plane for treatment .we have an oncologist here but not experienced to do biopsies .when the first biopsy was a failure they said we would get another appointment in 2 weeks that was May 12th .they then said the Dr was off work sick .last week we heard he was back

Thank you for your support , I cannot understand how they just leave us to carry on I'm not even sure I am doing the right things for him his sugar levels went up to 32 and if I hadn't mentioned this they wouldn't of even tested for diabetes I have learnt more from online than from the supposed specialists

Are you able to call the nurses on this forum tomorrow?

I think you could benefit very much ffrom their advice. They are real specialist nurse and I promise they can give you help.

You need more help than this.

Leila xx

Freephone 0808 801 0707

I think I will call them we are so isolated and just feel upset and annoyed I know there are other people in the same boat but I can see my husband going down hill

Yes, there are other people in the same boat, it doesn't make your situation any less important. Every life counts.

Please give them a call. They helped me so much. Our GP was terrible, didn't know what he was talking about. My Dad being from the generation he was, believed him. It took me a lot of tears to get Dad to believe me.

Where are you Sheena?

Leila Xx

Channel islands need to travel to southampton

Ask his G.P. for a prescription for Creon (pancreatic enzymes). It doesn't have to be prescribed by a hospital or specialist. Also ask the G.P. about diabetes medication. It's probably different with everyone but my Dad was told to aim for a sugar level of between 7 and 10.

Don't be afraid to chase up an appointment. We found that one hospital told us that a referral had been made and when we called to find out what was happening we found out that the referral had never been received.

Did tou call the nurses on here Sheena?

Hi Sheena sorry to hear about your husbands diagnosis. Chase the appointments and don't give up I always persist! Ask the GP for a prescription of creon tablets they may help. As FiFi said call the nurses on this forum they will help you.

Stay strong and take care,

Sue x

Not had time to call nurses as a member of staff was ill and had to work oncologist has now written to hospital and is optimistic we should gave biopsy appointment in couple days

Ty jeni Jones nurse I nearly cried when I read your reply so many answers I finally feel I'm getting somewhere Will definitely call xx in morning Ty for phone numbers I am overjoyed at your response xx

Sheena, your husband sounds so similar to mine - same age, same time of diagnoses, jaundice etc but the only difference is the treatment that we received. From day one we have received excellent treatment and although he is still quite poorly, at least something is being done. Like everyone says, you must press for an appointment although I know it's so hard when there's so much going on, they have to do something. The nurses on here are also an excellent support and can really help with problems and offer really good advice, I can't rate them highly enough. Also, I've found out so much information on this board from others in the same boat as me and although there are some really sad stories, there is so much support and practical advice. I really hope things get moving for you soon.

Take care

Sue

So I have now got script for creon demanded appointment from our specialist this Tuesday even though they didn't have one ? Have spoken to nurse from this site only now have to speak to dietician .I have succeeded more today than in 3 months .I am now ready to battle Ty all for support and help x

Hi Sheena,

Pleased you spoke with one of the nurses. I am sure she/he was some help to you.

Unfortunately, we are all very experienced with this. It is a huge fight. The patient fights the disease, we fight the system.

Please keep posting on here, and please ask questions you need to. Someone will be able to offer you advice.

How is your husband today?

Leila xx

Any help on creon dosage please . Unhappy we wasted 3 months my hubby wouldn't be so skinny know if drs actually knew what they were doing

Ty Leila he is in good spirits has discussed his funeral and sorted out clothes for charity ,I am finding this strange as he never parts with anything ,do you think he knows he hasn't much time left it just being organised I on the other hand am feeling very emotional , And finding it hard to concentrate hopefully weekend will be a bit better

Creon dosage is very personal. Some people may only need one woth food, others might need 15. What strength is he taking? You need to remember that they are enzymes, not medications. He can take as many as he needs, you cannot overdose.

You need creon for the digestion of fat, not the amount of food on a plate. The more fat, the more creon is needed. If his stools are still yellow, that is one indication that he needs more.

Dad would have 12 40,000 with a main meal.

Unfortunately, you have to play around with it until it suits him.

What is he taking now?

With the regards to him clearing out some clothes, that must be very tough for you to see. Dad never did that, but he did used to remind me what I needed to do when he had passed away. I think possibly, he just trying to get some acceptance maybe? I know how hard it is. Lets try and get the creon sorted for him, and hopefully he can start putting on a little weight. He will feel so much better if that could happen.

Leila xx

Sheena oh I do feel for you the saddest day before my hubby passed away was when he took his golf clubs out the boot of our car and stored them away saying I won't be playing golf again as they were always on the car ready for his morning round of golf it broke my heart but all I can say is be strong and somehow we do find the strength to cope against all odds but belive me the sadness never ever goes away but precious memories live for ever so carry on making those memories for as long as you can and stay positive and don't give up hope !

EmmaR x

Dear Emma I am trying to be strong but feeling very tired I am not sleeping well ,came home from work ha has now sorted through paper work he has tired himself out .I know he thinks he is helping me but I feel so sad he is doing this ,has started on creon so hope will not lose any more weight ,it's so sad to see him so thin he has aged so much .the only consolation I have is we had a lovely holiday at Xmas in vienna if only we knew what was around the corner we would of stayed longer and done so much more .thinking of you all we are all doing a grand job x

Dear Leila he is on 10,000 dosage have given him 2 with snacks etc and 4 with his larger meals had a bit of diaroah today so maybe to many.

So we get to see oncologist tomorrow not sure to be scared worried or just grateful hoping that all our questions will be answered it's been along time getting this far

Sheena,

He isnt having a high dose of creon. Have they only offered the 10,000 ones? Is the consistancy of the diarrhoea changing? I know they don't like to talk about thag, but he must if you are to help with that.

My advice for the oncologist tomorrow, is to take a book with you. Write questions in it tonight, and read them out to him tomorrow. Don't be scared to ask anything. Make sure he answers your questions.

I had a book with Dad and it was a god send. I constantly wrote everything down in it. You find that when you get to an appointment, you mind is blank. It is only when you get home, you think, I should have asked that.

Good luck

Leila xx