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

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Barbara2
Posts: 15
Joined: Thu Mar 29, 2012 9:18 pm

Really confused

Postby Barbara2 » Sat Mar 31, 2012 1:30 am

Hi, i'm looking for some help, my husband has just been 'diagnosed' following a ct scan with pancreatic cancer which appears to have spread to the liver, both lungs and bowel. The results were coveyed by our GP. This was devastating news for us and he is in some pain but his biggest problem currently is jaundice which is causing him extreme discomfort. At present we have been waiting nearly 3 weeks to see anyone from the hospital and this is my concern, he has not seen a consultant, had a formal diagnosis or any opportunity to hear a prognosis in his case. I have pursued the hospital and a nurse made contact and advised there had been a delay because the referral had gone to the wrong consultant, she said they may admit my husband for an ERCP with a view to inserting a stent but this was done on basis of priority - so far he has been deprioritised twice. The hospital operate a system whereby if you don't hear from them assume it's not happening which I find very stressful. My husband has been prescribed meds by our GP but they are not working well and he has had several changes already. He can't sleep at all because of the horrific itch caused by the jaundice and is visibly losing weight, he also has significant digestive disturbance. I hate to see him like this and feel so helpless, he is 53 and until recently was a strong man who was a workaholic. Can anybody tell me if our experience with the hospital is normal, on the bais of the information from the ct scan I am scared he already has stage 4 cancer, my mind is running riot and I don't understand why nothing is being done....

Sorry, I've ranted quite a bit but any comments would be welcome. Thanks x

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Really confused

Postby louiepc » Sat Mar 31, 2012 8:56 am

Hi Barbara

I am very sorry to hear of your husband being so ill. I can only speak from my experience, my mum had pc. Her diagnosis was very irratic, first she had it, then she didn't.

I noticed mum had jaundice in June last year, she had previously been very poorly with her tummy, and had lost a considerable amount of weight, but she was under a consultant at the hospital, and had various tests ect. I made her go to a and e concerning the jaundice, and they admitted her, she was put on a drip, and had a stent put in a few days later.

In my experience, I have discovered with hospitals, that if you don't SHOUT you don't get. Don't be rude or aggressive, but be assertive and basically tell them your husband needs this stent put in. Whatever stage the pc is at, quality of life is paramount, and he needs to get rid of the jaundice. Don't be put off, jaundice is bile and rubbish build-up that cannot pass through the proper routes due to blockage or whatever.

I would also insist on seeing a consultant asap. Do you have a number of hospitals near you? Some hospitals have pc specialist doctors, you need to see someone who actually knows what they are talking about and not be passed from pillar to post or completely ignored.

Get your GP on board, if he/she is any good. Make a nuisance of yourself if needs be, but get your appointments, and treatment that you not only deserve but are entitled to.

Good luck, don't worry about ranting, I have had many rants on here, people understand, that's what so great about this site, everyone in some degree or another has been or is going through this.

Take care louie xxx

Barbara2
Posts: 15
Joined: Thu Mar 29, 2012 9:18 pm

Re: Really confused

Postby Barbara2 » Sat Mar 31, 2012 12:10 pm

Thank you Louie, I am going to act to your advice, I'm not prepared to be pushed from pillar to post, my husband deserves better than that and he needs help with the jaundice so if I need to shout then I will! This is all so new to us but it seems we will have to learn quickly. I'm so glad to have found this site I think it may prove to be a godsend to me. I am so sorry you lost your
lovely mum to this disease, you have clearly been through the mill so I am ever more grateful you have taken the time to offer me support, it's very much appreciated. xx Barbara

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Really confused

Postby louiepc » Sat Mar 31, 2012 1:02 pm

Barbara

Your more than welcome, unfortunately I cannot help my Mum anymore, but if I can be of help - however small - to anyone else, then that's great. It kind of helps me too, in some strange way.

Good luck in your shouting. Let us know how you get on.

Louie xxx

CFF
Posts: 56
Joined: Fri Apr 22, 2011 9:38 am

Re: Really confused

Postby CFF » Sat Mar 31, 2012 6:27 pm

Hi Barbara,

Very sorry to hear about your husband. I can understand how scared, confused and angry you must be feeling. Just wanted to reiterate Louie's advice really - the lack of consultation in general and progress with having a stent is absolutely unacceptable. When my dad had quite bad jaundice early on in his illness I remember how distressing the itching was for him. He would be taking showers almost hourly during the night to try and get some comfort. Rubbing cool calomine lotion on his arms and back helped a little but only temporarily. Do make a fuss with the doctor - emphasise just how poorly your husband is feeling and get your GP onto the hospital. Call the hospital regularly re the stent - unfortunately sometimes the only way to get priority which isn't right or fair.

Once my dad had the stent removed he felt much better in terms of the symptoms. Of course, you also need some proper advice from a consultant.

Good luck and rant / ask for advice on the forum whenever you need to. it can feel lonely but there's lots of people on here unfortunately that have been so terribly effected by PC and are keen to help.

take care
Cx

Barbara2
Posts: 15
Joined: Thu Mar 29, 2012 9:18 pm

Re: Really confused

Postby Barbara2 » Sat Mar 31, 2012 6:38 pm

Thank you C,
I have found it reassuring to hear from people like Louie and yourself, I hate seeing my husband in such discomfort and until you've witnessed the effects of jaundice it's hard to imagine how awful it can be. I was worried I was over reacting to the lack of communication/action from the hospital but now feel more confident I'm not. Thank you for taking the time to reply to my post, it means a lot . Barbara x

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Really confused

Postby suef » Sat Mar 31, 2012 8:44 pm

Dear Barbara,

I am so sorry to hear your story and can understand how stressed you are.

It sounds as if your husband should have been referred to a specialist unit. I do strongly suggest that on Monday you contact the office of this website because they will give you excellent, individual advice on how to proceed. You can telephone them on 020 35 35 70 99 or email: support@pancreaticcancer.org.uk.

They gave me excellent advice when I had a Whipple two years ago, I do recommend them!

And yes, you do have to SHOUT! It is sad but true, you have to fight to get proper care for those you love.

Thinking of you,

Sue F

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

Re: Really confused

Postby laura » Sun Apr 01, 2012 12:00 am

hi barbara, welcome to our "family" all of us will stand by, and with you, and try to help where possible, as previously said, do contact jeni at the office for more indepth help and advice, we have been so fortunate in the care, my hubby brian, has received at truro hospital, our story is not the same as yours but he does have inoperable p.c. 2 yrs now since diagnosis. be polite, but very firm when asking for more help. your hubby wont stop itching untill the stent has been inserted and allowed to drain out the neccassary fluid. with jaundice diabetes can sometimes kick in, it did for bri and the readings were sky high but now, so far down the road, it has "dissapeared"!. so you need to be on the ball, cos not all wards/hospitals are that familiar with p.c.
wishing you and your hubby success and better news, regards laura x

Barbara2
Posts: 15
Joined: Thu Mar 29, 2012 9:18 pm

Re: Really confused

Postby Barbara2 » Sun Apr 01, 2012 12:55 am

Sue and Laura,

Thank you both so much - I will take your advice and contact the office of this site on Monday. I am overwhelmed by the support and kind thoughts from everyone who has responded to me. Its helpful to hear from people who have direct experience of pc, just so sad anyone has to.... Thank you again, Barbara x

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Really confused

Postby rachelqt » Sun Apr 01, 2012 9:23 am

Hi Barbara, I am very sorry to read about your Husband diganoses with PC. The feeling is just so shocking and the ache you feel inside is unreal when you first discover. I remember me and my mum felt like we were banging our heads on a brick wall looking for answers. My dad (60) was diganosed with inoperable PC in Sept 11, it was July when we noticed he was losing weight and Jaundiced. He became very ill with the jaundice. It took to october for him to get a mental stent placed and then for about 2 weeks for it be cleared up. We felt it was a slow process to begin with but now i would say his care from the NHS and Macmillan nurses is very good, just keep asking for your Husband. He felt so much better once cleared up was able to start Chemo, which seems to be working well.
This forum is full of support with plenty of advise.
Hope things get moving soon for your Husband, let us know how you get on...Take care Rachel xx

Barbara2
Posts: 15
Joined: Thu Mar 29, 2012 9:18 pm

Re: Really confused

Postby Barbara2 » Sun Apr 01, 2012 3:47 pm

Thanks Rachel,

I'm hoping my husband will have to chance of a stent, I feel if he could get rid of the jaundice he would be so much more comfortable. I am going to push the hospital to prioritise him, he might not be their 'priority' but he is mine! I'm glad to hear your dad is making progress and wish him well. I hope you and your mum are coping as best you can; I could never have imagined how upsetting finding yourself in this situation could be. I'm sure I will continue to make use of this site as I find it helps to talk to others who are aware of what's involved with pc and I dont want to overburden my family who are also struggling. I will let you know how we get on and thank you again for taking the time to respond.

Barbara x

Barbara2
Posts: 15
Joined: Thu Mar 29, 2012 9:18 pm

Re: Really confused

Postby Barbara2 » Wed Apr 04, 2012 2:03 am

Hi, just wanted to post an update, I followed the advice of those on this forum, dug in my heels and strongly asserted the need for my husband to be admitted to hospital and today he finally was! he is extremely poorly and visibly deteriorating but at last may receive the treatment he needs, including an ERCP to insert a stent. We also saw a registrar who confirmed the news I was dreading - the pc is inoperable and has spread, it seems palliative care is our only option. I think I knew this is what we were facing so somehow it didn't come as such a shock but I am upset and scared what the future might bring. The doctor who admitted him was concerned there was fluid accumulation in his stomach so now I am starting to worry what that might mean - another question to add to my list... This is truly a devastating disease. Thank you all for your advice and concern, you helped me take control of a horrible situation. Barbara x

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Really confused

Postby louiepc » Wed Apr 04, 2012 9:13 am

Hi Barbara

I am very pleased that you managed to get your husband admitted, hopefully with the insertion of a stent he will start to feel a lot better.

I am sorry the news that the Registrar gave was so bleak. It is horrendous receiving this news. It is scary, you are going to have moments when you fall apart. Take each day as it comes. Don't look on timescales, every day/week/month that you have with your husband you can continue building your special days and memories.

His swollen tummy is ascites. My mum suffered with this. It is basically the tumour in the tummy "leaking" fluid, your husband may need to have this drained. This is a procedure that involves a tube being inserted into the abdomen, and the procedure happens over a few hours. It cannot happen quickly as the body will go into shock.

This will probably not be a one-off draining either. My mum had at least five drains (at one point she had a permanant drain put in - which unfortunately got blocked, and had to be removed). Unfortanately the tumour will continue to leak. You may also notice that his legs start to swell, this is relieved by raising legs.

I hope that your husband feels much better soon.

Take care

louie xx

CFF
Posts: 56
Joined: Fri Apr 22, 2011 9:38 am

Re: Really confused

Postby CFF » Wed Apr 04, 2012 6:58 pm

Hi Barbara,

Glad your husband is getting some help. Really sorry to hear the news though - sometimes I think 'knowing' what's coming doesn't mitigate against the shock and being scared about what's to come.

I would just say though that sometimes the pain management can be very effective and given you some good quality time so try to take one day at a time, as Louie suggested.

Also, even with the pain mgt do keep up with the 'assertiveness'. 'They' found it really difficult to keep on top of my dad's pain for a while. It can be a difficult pain to manage so sometimes there's trial and error involved. I strongly felt, as I@m sure we all do, that when there is a sense of limited time any time at all in unnecessary pain isn't acceptable. So do stay on their case and shout on here with any questions.

x

ps take care of yourself

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Really confused

Postby Nardobd » Wed Apr 04, 2012 7:17 pm

Hi Barbara

My husband was diagnosed with inoperable pancreatic cancer in February 2009 and he is still with us! For a good portion of that time he had a reasonable quality of life and we saw each day as a blessing, so don't despair.

Unfortunately, since Christmas, Ted has been deteriorating and I am now in the stage which so many on this forum (including Louie) have already suffered.

My thoughts are with you.

Nicki