A forum for family, friends and carers of pancreatic cancer patients

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sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: My husbands pancreatic cancer situation

Postby sooty » Thu Mar 08, 2012 4:38 pm

Hi Laura, hope you enjoy meeting up with your sister, I hope to do the same when I go and see my father (can you believe she broke her foot the same week that my husband was diagnosed and she still in unable to drive so cannot visit me,never rains......As for my husbands opinion on me going to see dad, he is desperate for me to go, he is so worried about my stress,Bless him and wants me to go as soon as we get back from Eastbourne. Our daughter will come home for the night while I am there, she has done the medication before so I know that will be ok. My husband is not good today and has been in bed for most of it, not like him at all, seems a little breathless too !. I dont have any dealings with McMillan prefer not to, if I want medical help I phone the district nurses or the hospice, I must say I am beginning to feel very much abandoned by medics, in fact we think that as soon as my husband said he was not having chemo (following the advice of the surgeon and GP) the hospital became disinterested in him !.My own GP was surprised when I told her that we had no follow up appointments with anyone. By the way, I am a Yorkshire Lass now living in Lincolnshire, enjoy time with your sister, and best wishes to you and Brian .

sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: My husbands pancreatic cancer situation

Postby sooty » Mon Mar 12, 2012 4:42 pm

Hi, anyone got any answers please..during the last few days my husband has become very easily tired, not walking as much as he was, appetite reduced, waking every hour during the night to urinate as drinking so much due to constant thirst. I increased his creon as suggested in the hope he puts a little weight back on !. Noticed that sometimes his speech is slurred, is this the diabetes, he takes 2 metformin a day? I have booked a few days away down south on Thursday and getting a little unsure about if this is wise although he is so looking forward to it. Thankyou S

sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: My husbands pancreatic cancer situation

Postby sooty » Tue Mar 13, 2012 10:55 am

Would like to thank very much Jeni the moderator who emailed me a reply to my queery, suggesting it could be his blood sugar levels and take K to the out of hours GP. I followed this advice and K was seen by the GP who then said he needed more in depth tests, Ks blood sugar reading was 26.5, apparantly this is high, his acid and keytones test were fine, his ECG showed a slight blip, chest xray clear. Today we are to attend the diabetic clinic to be shown how to administer insulin. The doctors and nurses at the hospital were brilliant and in this long process since K was diagnosed I feel I now know and understand things!. By the way, I was asked at the hospital for his "green card" ? which would have made things simpler for us, so ...whats a green card never heard of it, they also asked for his consultants name and seemed amazed when I said we are just under his own GP, is this usual. Again thankyou so much Jeni for your kind email, comforting to know you are out there, regards S

sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: My husbands pancreatic cancer situation

Postby sooty » Wed Mar 14, 2012 9:17 pm

Saw the GP this morning as my husband was realy not well at all, apparantly his blood sugar is still way too high, a urine test showed keytones and he was admitted as an emergency to the hospital. Because of the tumour the doctors think that his pancreas is no longer producing insulin, he was started on insulin injections and so far bloody surgar levels falling hope it continues and he gets his strengh back again soon !

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: My husbands pancreatic cancer situation

Postby laura » Thu Mar 15, 2012 12:17 am

hi sooty, am sure your hubby was feelin rotten, sure was a high sugar reading, bris was sky high when diagnosed, started on metformin progressed to insulin, after about 12 months, it all cleared up?, really strange, but doesnt take anything at all now, dont worry about the insulin i used to inject bri sometimes, easy peasy, and will make him feel so much better.
hope you manage to get away, but guess getting hubby better is priority!

best wishes to you both and hope things "buck up". love laura xx

sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: My husbands pancreatic cancer situation

Postby sooty » Mon Mar 19, 2012 8:52 pm

I am sooo angry I dont know whether to shout or cry ... my husband has been in hospital for 6 days, the blood sugar levels fluctuate from 14 to 26 during the day on "18 insulin", I visited him this evening and he was complaining of pain in his right side, his tummy was very distended. I spoke to the nurse in charge of him, my first meeting with her, took me by surprise when she asked what he liked to be called ! I replied "his name". After talking about the diabetes issue I mentioned the pain he was having and how much more distended his tummy was, strange that I had to tell her what procedure he had done and inform her of his cancer, why is this not noted but what realy tipped me over the edge was her telling me he will see the ward consultant tomorrow, I said great is he a diabetes consultant or PC one, she looked rather surprised and said no he specialises in Chest complaints !! He has no chest complaint ..what good is this to us, I could cry I am so tired of batting my head against a wall, I give up ..I've reached my limit.

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: My husbands pancreatic cancer situation

Postby laura » Mon Mar 19, 2012 11:30 pm

oh sooty, what an awful situation, if you cant get anywhere on the ward where your hubby is, go to PALS, they are there to help you sort out problems that you need addressing, they will be based in the hospital and i think are open all day, was your hubby admitted to an assesment ward? i found things were more difficult to sort out on the two occasions bri went in, the prtoblem is they deal with all differant admittances and its usually a thruput ward, where patients then get sent to an appropriate place. if thats not the case then certainly your need of a chest specialist doesnt seem appropriate,
hope you can get some answers tomorrow, thinking of you laura x

mints
Posts: 32
Joined: Mon Jul 04, 2011 7:43 pm

Re: My husbands pancreatic cancer situation

Postby mints » Tue Mar 20, 2012 9:09 am

Hi Sooty,

I have to say I experienced something similar with the hospital when taking care of my husband.
When they're admitted they find a bed on any ward, then it's never a specialist doctor they see just one that's on call,I too found this very frustating.Once I found him left on a day ward with no-one looking after him,I really created a fuss and put a report in.
It's an added worry you just don't need.
All our situations are similar but different,but I do hope you find the help and advice you need,your local hospice, or your g.p.refering you to someone.
Wish you well.

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: My husbands pancreatic cancer situation

Postby PCUK Nurse Jeni » Tue Mar 20, 2012 1:22 pm

Hi Sooty,

So sorry about this.

I will email you a direct reply.

Jeni.

davidbird
Posts: 2
Joined: Mon Dec 26, 2011 1:39 pm

Re: My husbands pancreatic cancer situation

Postby davidbird » Tue Mar 20, 2012 7:31 pm

My first post here.
My Father-in-Law (aged 82) was diagnosed late November, after many months of indigestion-type symptoms, and then sudden weight loss.
After a MRI scan, the prognosis was for palliative care only. Its now mid-March, and with various prescriptions for pain relief, anti-acids and steroids to boost appetite, all now seems stable, after what looked like a downhill slide, but was due to co-codamol inducing constipation.
GP very good but taking a background role, MacMillan Nurse is very good and now the main source of care & information.
Just today he was looking a bit yellow, and MM nurse was talking about a stent, also considering Creon.
MM nurse says that due to his age, everything slows down, as this also includes aggressive tumor growth, we may still have him for longer than a younger man.
So, no, you're not the only one with just palliative care, no chemo/radio/surgery. I'd also noticed most folk talking about chemo etc.

sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: My husbands pancreatic cancer situation

Postby sooty » Tue Mar 20, 2012 8:02 pm

Hi David, so sorry about your father in law, well from experience with my husband the worst thing for this condition is constipation, my husband was constipated for 10 days and the District Nurse said this is one of those conditions that can be very serious, he takes laxido x2 daily to keep on top of this. A stent was initialy put in him via his ribcage as the camera could not get past the tumour this helped with the jaundice, also he takes creon 40000 with food, this is an artificial enzyme to help food be digested and hopefully to put some weight on. My husband was discharged from hospital today and hopefully going to feel better on insulin, by the way when i phoned his GP this morning he said in hindsight he should have tested his blood more often (January and then due again April) now will be sooner. We have Marie Curie on standby for help. All the best to you and your family.

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: My husbands pancreatic cancer situation

Postby laura » Tue Mar 20, 2012 8:37 pm

hi there sooty, glad that your hubby is out today, he will be so much happier at home, as im sure you will be to have him back, hope things go more smoothly now , and as your gp seems to be more on board, together with m,c, hopefully life will be better for both of you, we are always here if you want a "chat". take care love laura x

sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: My husbands pancreatic cancer situation

Postby sooty » Sun Mar 25, 2012 5:28 pm

Hi, well he has been home a few days now, the diabetes is all over the place, readings of blood sugar from 10 to 30.5, insulin injected is now 22. He has had a stabbing pain in his stomach since he came home, severe at times so I phoned his GP who said double his morphogesic to take 60mg morning and night and to immediately take 2x5ml oralmorph. He hates oralmorph and only took the one dose, no more. He is very tired and unable to eat as he says foods will not go down it seems to get stuck in his osophogus !? any idea what that is?.The GP said phone him tomorrow with an update but I feel I want him examining..again..what should I do?. Regards and best wishes to you all..you have no idea how much I rely on this site, Sooty

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

hi sooty: My husbands pancreatic cancer situation

Postby laura » Sun Mar 25, 2012 6:50 pm

hi sooty,, sorry to hear you have yet more problems, cant give you an accurate answer to your hubbys discomfort, try smaller ammounts of food more often, and perhaps try soft easy to swallow things like custard, blancmange, porridge etc, but keep portions small. can you get hold of your M.C nurse, i dont know how much clout they have, but certainly our M,M nurse can sort out meds, hosp,etc, maybe worth a try, thinking of you, laura xx

sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: My husbands pancreatic cancer situation

Postby sooty » Sun Mar 25, 2012 8:37 pm

Hi Laura, well he is eating very little, yesterday he had one wheatabix, a small scone with jam ( suitable for diabetics) and for dinner he had half a muller light yoghurt, he could not finish it as it would not go down !. Well as for MC nurse we are registered with the local hospice where they are based however they said after the initial meeting with us that we did not as yet need their involvement so I have not asked them for help yet as I am not sure at what stage we have to be at to warrant it.He just went for a small walk to help ease his tummy pain and it seems to have worked, now in a nice warm bath. Thankyou Laura for your help, hope things are going ok with you and that you have met up with your sister now? xx