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frustrated

Posted: Mon Jun 15, 2015 7:45 pm
by sheena
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

Re: frustrated

Posted: Mon Jun 15, 2015 8:25 pm
by Fifi
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

Re: frustrated

Posted: Mon Jun 15, 2015 8:31 pm
by sheena
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

Re: frustrated

Posted: Mon Jun 15, 2015 8:36 pm
by sheena
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

Re: frustrated

Posted: Mon Jun 15, 2015 8:39 pm
by Fifi
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

Re: frustrated

Posted: Mon Jun 15, 2015 8:39 pm
by Fifi
Freephone 0808 801 0707

Re: frustrated

Posted: Mon Jun 15, 2015 8:42 pm
by sheena
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

Re: frustrated

Posted: Mon Jun 15, 2015 8:46 pm
by Fifi
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

Re: frustrated

Posted: Mon Jun 15, 2015 11:11 pm
by sheena
Channel islands need to travel to southampton

Re: frustrated

Posted: Tue Jun 16, 2015 2:32 pm
by WilliamS
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.

Re: frustrated

Posted: Tue Jun 16, 2015 6:41 pm
by Fifi
Did tou call the nurses on here Sheena?

Re: frustrated

Posted: Tue Jun 16, 2015 7:40 pm
by Sueoliver
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

Re: frustrated

Posted: Wed Jun 17, 2015 8:17 pm
by sheena
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

Re: frustrated

Posted: Wed Jun 17, 2015 8:36 pm
by sheena
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

Re: frustrated

Posted: Thu Jun 18, 2015 8:56 am
by kittycat
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