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Help.

Posted: Wed Feb 12, 2014 9:53 pm
by kwaitang
My husband has inoperable pancreatic cancer. Chemotherapy has been suspended. He recently also had a heart attack. This was treated successfully. He has to take blood thinning tablets every day as well as injection to stop blood clots in his lungs (been on that for 4 months). He has been told to take a disposable aspirin daily. About a week ago he started to have pain behind his ribs and really bad headaches and feeling sick, to the point he has to go to bed. I rang a district nurse and she said to take 2 paracetamol 4 times a day. Up to this point Keith only took them when he was in bad pain - we didn't know he should take them all the time. Anyway the rib pain has gone but the headaches are getting worse. The district nurse phoned for a doctor to come visit. A locum came and told Keith to take 2 x paracetamol 4 times daily. 2 x Tramadol 4 times daily and 1 x Ibruprofen 4 times daily. 20 painkillers a day seems excessive to me but the doctor told us to do it. He also said that if the headaches don't clear up that Keith may have to undergo further investigation as the cancer may have spread to his brain. Does it spread to the brain? We are now worried sick. Arlene.

Re: Help.

Posted: Wed Feb 12, 2014 10:23 pm
by Bee
Hi,
I can't answer your question I am afraid but it sounds like you need some more support. Perhaps the nurses on the forum here if you give them a call. Or do you have an oncology contact or specialist nurse you could contact. You must be so worried, hope you get some sleep tonight and hopefully get some answers and steps forward soon.

Bee xx

Re: Help.

Posted: Wed Feb 12, 2014 10:44 pm
by J_T
Hi Arlene do you not have a Macmillan nurse available to you? They are really good at pain control. I'm no doctor but those painkillers do seem excessive, although 2 paracetamol 4x a day was always part of Ray's regime. Does Keith have liquid morphine to take for pain? This was also made available to us as a 'top up' to the paracetamol.

I fear the cancer can spread almost anywhere. Has he had any recent scans?

You've had some really shoddy treatment and I hope you are making notes of it all. I would get your own GP to come out and tell him exactly where you are and why you're not happy and ask him what he's going to do about it. Poor Keith needs someone take charge and get his pain under control.

Best wishes
Julia x

Re: Help.

Posted: Thu Feb 13, 2014 12:09 am
by kwaitang
I am going to ring the doctors surgery in the morning to see if I can see our doctor. I also have an appointment with a nurse at the local hospice to have a chat. Keith has had a scan recently but just of the abdomen. Good news was that the cancer had not increased. That is why he is having a break from the chemo as it and the trial drugs damaged his heart, kidneys and liver function. I will find out what hours I can ring macmillan nurses although we have not had one allocated to us yet. I have met a macmillan social worker a couple of weeks ago and she said she would put a nurse on to us. I think that tonight will have to be another sleeping pill night. Thanks. Arlene.

Re: Help.

Posted: Thu Feb 13, 2014 12:13 pm
by nikkis
Hi Arlene,
Can't give you any advice I'm afraid, but really hope things get sorted out soon. Stress to whoever you speak to that you don't want to get to the weekend without having had some advice and help,

Nikki

Re: Help.

Posted: Thu Feb 13, 2014 2:50 pm
by marie souter
hi there,

not a doctor but whaaaa? All those painkillers target different areas of pain I have been told, however given the diagnosis I think realistically you need to be seeing a specialist with regards to pain management...for eg your allocated Macmillan nurse (if you havent got one yet then push for one through your doctors surgery)...my mom went through a period of headaches and similar pain it turned out she had an infections but the macmillan nurse at the time did mention to me there was a possibility it had spread to the brain, however as my mom was at stage 4 they said they wouldnt investigate as there was nothing more they could do for her anyway.
By the way locum doctors I found to be worse than useless the one thing I dreaded was having to call one out over a weekend..your macmillan nurse will actually know way more about drugs for your husbands condition than ANY gp or locum doctor ... they will liase with your doctor to write up anything that is needed but its imperative that you get this sorted sooner for your poor husband xx District nurses are great BUT they need the clout of a good macmillan nurse .. remember your GP is a 'General Practitioner' not in anyway a specialist xx and with a locum you get less than that as they don;t know your husband as well as your GP would x Push Push Push...you need to.

Hope this helps
Marie
xx

Re: Help.

Posted: Thu Feb 13, 2014 7:52 pm
by Cathy
Hi Arlene

I'm sorry to hear about poor Keith. PC can spread to the brain but there could be any number of reasons why he is having headaches and so it would be good to get PC ruled out.

In the meantime I agree with the others... We didn't have a Macmillan nurse ourselves but DID have a community palliative care nurse allotted to us fairly early on, before we even needed one really, so push to get the name of someone and get them involved. You will find it a huge help, both you and Keith.

Fingers crossed for you

Cathy xx

Re: Help.

Posted: Thu Feb 13, 2014 8:16 pm
by kwaitang
I rang the doctors this morning as Keith's headaches getting worse and throwing up. A lovely doctor came out and did a good check up. Keith's blood pressure was 220 / 120 which he said was dangerously high. He rang the hospital and I took Keith straight down there. After a few hours the pain had lessened slightly and his blood pressure had dropped to 185 / 110. They have kept him in to try find out why it is so high and will be doing a head scan asap. So now we wait. I have to say what a difference in the whole attitude and demeanour of the doctor that visited today compared to the one that visited the other night. Even though Keith was so ill I smiled because I felt so comfortable. Thank you lovely doctor. Arlene.

Re: Help.

Posted: Thu Feb 13, 2014 10:35 pm
by Bee
Hi, glad to hear he is getting checked out and you have had a better experience today. It sounds like you did all of the right things. Hope you manage to get some rest tonight .

Bee xx

Re: Help.

Posted: Sat Feb 15, 2014 12:10 am
by kwaitang
Well Keith had the head scan tody and nothing abnormal was found - the relief !!! Apparently he has hypertension. Extra medication has been given to lower his blood pressure. He feels better already. Only odd thing today was the discharge time - 9pm ! Arlene.

Re: Help.

Posted: Sat Feb 15, 2014 9:37 am
by EmmaR
Hello,
Well that's good news we are glad of any improvement big or small that makes us worry a little less in the battle against PC .
take care
EmmaR x

Re: Help.

Posted: Sat Feb 15, 2014 1:27 pm
by Cathy
Well that's good news.

9pm doesn't surprise me. Both times Jonathan was discharged in December we had a huge wait for his drugs etc. The first time was well after 9 that we were able to go. Part of the reason they told us was that it was a Friday eve and the pharmacy was busy.......

Xx

Re: Help.

Posted: Mon Feb 17, 2014 11:11 am
by PCUK Nurse Jeni
That's great news Arlene!

So pleased to hear that Keith is feeling better already with the blood pressure medication.

Jeni.

Re: Help.

Posted: Tue Feb 18, 2014 6:29 pm
by marie souter
Hi arlene,

so happy to hear the news, I suffer with hyper-tension myself and I get headaches a lot...My mom was the same, a few times she was released from hospital at 9pm, same as Cathy it was the long wait for drugs to be delivered to that department ... glad you are out of hospital now though ..


best wishes
marie
xx