Husband newly diagnosed

[bibs]

I wondered if anyone feels as I do. Whilst I cannot begin to understand how my husband of 35years( diagnosed two weeks ago ) or his fellow sufferers are feeling - I feel that I have been plucked out of my normal life and dumped on another planet that has clones of people I know, family, friends etc but no one who talks to me about the cancer.They are polite and ask how he is but no one really talks to me. I know they probably don't know what to say - what would I say if the shoe was on the other foot? I feel so alone.The first hospital that treated him were marvellous he had not been ill just turned yellow and was having tests, and I was included in all aspects of his treatment and felt a part of things. During this time we were able to talk about lots of things together our fears, we cried together and said how we would look back in 6 months time and laugh about the pressure we had put ourselves through. Two weeks later and things took a turn for the worse and instead of packing for our holiday we were packing for a different hospital one which has agreed to do the Whipple Op within the next three weeks. In the two weeks that we have known I have lost the man my husband was.He has become withdrawn, moody, angry tearful all things natural I suppose.But now it feels like we are treading on egg shells afraid to talk - so don't talk. He cries when he thinks I don't see, I go have a bath to cry out of sight of him. What has happened? is this normal? I am supposed to carry on as normal away from him - go to work crying, do my job crying, go home crying please someone tell me you feel this way - I feel so selfish to even consider my own feelings but cancer hadn't invaded our lives until November x

[Sones]

Hello bibs

I am so sorry to hear about your husbands diagnosis and my heart goes out to you both. Although I can't put myself in your shoes or begin to imagine how you are feeling I can put myself in your husbands, as I too was diagnosed with PC and had whippels surgery 14 months ago. I was terrified and numb when I was told I had PC. My husband tried to be strong but he too was frightened, both of us not knowing what the future held or how long we had left together. However, once the numbness wears off you begin to go through all different kinds of emotions and anger was high on the list. Good friends stopped visiting as they didn't know what to say and those who continued to call in to see me looked at me with such pity in their eyes that i wanted to slap them. There is such a negative response to this cancer and reading about it on the Internet is even more negative. However, there is many inspirational people out there with PC who are fighting this terrible disease.

People on this forum will give you all the support you need, giving advice on almost anything.. However, your husband may not want to read about how loved ones have lost their lives and the sadness and pain this leaves behind. It was a long time before I could come on this forum.

It's very early days for you both, I know all I wanted was for someone to say everything is going to be ok, give me something positive to hold on to. No one can say this but reading "people's real stories" on this site gave me the little bit of hope i had been looking for. I have had three scans since my surgery in Oct last year and thankfully they have been clear of cancer. Your journey is only just beginning and I send you all the positive vibes I can muster, remember there is hope.

My thoughts are with you.

Sue.x

[laura]

hi bibs, welcome to the merrygo round, thats how it feels sometimes, but you will get used to it, briefly my hubby diagnosed feb2010, unsuccessful whipples may 2010 comm chemo Gemcap june 2010 had 19 months treatment, is still doing well, weve had MUCH longer than was anticipated!! not all doom and gloom, Click on my name and u will be able to read bris story, all the best, tell hubby about my post, love laura xx bri is coming up to 64 nx feb xx

[susikus]

You're in a new place now Bibs and there's no map to guide you. You will find your way, bit by bit, but we are all different and find different ways to get through this. I hear you when you say no-one is talking to you. Would you be able to talk to someone and break the ice? I think so many people just do not know what to say and are so scared of saying the wrong thing and upsetting you. I am a very open person and I have always believed in talking openly so we discussed all sorts - my husband was diagnosed in august and died in october - and many people have said how wonderfully we, our whole family, are coping. In truth it gets worse once you are bereaved. So many people just have not got a clue what to say - and the silence is awkward and uncomfortable. So I break it - I say what has happened or ask if they know, and then I talk about it, and sometimes people are curious and want to know more and sometimes they are uncomfortable. It takes all sorts. But mostly people are glad to have the chance to talk about it. You can always come and 'talk' to us. Hugs to you Bibs, I hope the op and all that is to come goes wonderfully well. Lots of love

Sue

xxx

[bibs]

Just thought I would update my post. Having waited since Last year for my husband to get his whipples on ( 22/1/13 ) we received a phone call from the Consultants secretary yesterday 19/1/13 to say that his surgery is cancelled due to anaethesia problems. No other explanation and we have been catapulted into limbo not knowing what other options we have - if any - Richard has now lost 7.5 stone in 12 weeks and continues to get weaker by the day.Has anybody else come so close to this Op and had this happen and what happened? Because our own GP last week was encouraging him to grasp it with both hands as so many do not have the opportunity.

[Sones]

Hi Bibs

I am so sorry to hear you are now having to deal with this delay.

A similar situation happened to us when i was due to be admitted for my whipples surgery. My husband was told it was to be cancelled/delayed for four weeks due to my surgeon going away on holiday. As you can imagine this news sent us into complete turmoil. My husband initially made contact by telephone to my consultant/ surgeon and after many telephone conversations later a decision was made that surgery would go ahead but with a different surgeon. My surgery took place in a London Hospital and i had a team of anaesthetists? I know my husband phoned constantly and was the one fighting my corner as I wasn't able to do this myself at that time. The support team may be able to give some advice on how/who/where you can go to for support with this.

Sue.x

[suef]

Dear Bibs,

I am so sorry to hear your news. It is really inexcusable that the reason for the delay was not clearly explained to you. Would you feel able to call the consultant's secretary on Monday and ask for a clearer explanation, and whether there are any other options - another hospital, another surgeon, another team of anaesthetists.

Unfortunately we have to be polite but very very firm when dealing with the NHS. Every patient needs a strong advocate!

Thinking of you!

SueF

[DRAD3]

Hi Bibs - can only reiterate what has been said already. I would ring the hospital again and ask for an explanation and a re-schedule. Try getting PALS involved if you feel you need some help - that is what they are there for - their telephone number should be on any correspondence you have had from the hospital. Chase and be assertive and good luck. Sending you love and strength.

Deb

x

[laura]

hi there bibs, sorry to read about the delay for you both, the others have given you very good advice, so try and write down what you want to say to the secratary, specialist nurse or whoever you decide to ring,, go thro your questions, take the persons name, explain you are writing down the answers so that you can relay the ans to your hubby correctley!

re weight loss, is your hubby on creon, cos i would think he really needs to take them?, lots of info on here from various postee's also click on my name and read about bri!

all the very best to you both, sending strength, love and lots of poitiveness laura xx

[bibs]

Thank you everybody.. I have gone from shock on Friday to hellbent on getting answers tomorrow. From the decision being made in Nov to have the Whipples it has been a nightmare of delays waiting for appointments to come through as he is being treated in two hospitals, not getting the right tests done and certainly not in the 31 days mentioned after the mdt meeting. But what I cannot come to terms with is the fact that he was a suitable candidate last year has had no medication of any description prescribed except for paracetamol which he has now had to go to over the counter codiene to help with the pain, lives on a spoonful of ready brek a day and all the time has been told you should be on this, we could give you this BUT don't want to jeopardise the surgery. What could have possibly happened since his pre-op on the Monday when arrangements were in place to come in the following Monday to the Friday as he certainly did not have any more tests. Fingers crossed for me xx

[Sones]

Fingers definitely crossed Bibs. Let us know how you get on.

Will be thinking of you both.

Sue.x

[PCUK Nurse Jeni]

Hi Bibs,

Sorry to hear about this, but unfortunately, it does happen. As long as there is not too long of a delay, and there is another date given to you soon, then try to make the most of these days where he is at home.

Want to ask again, is he on creon? Has he been seen and assessed by a specialist dietician at any stage?

Email me on support@pancreaticcancer.org.uk and we can take this discussion further, and can provide more information about diet etc....The team should ensure that your husband's nutrition is adequate before such a major operation.

Kind regards,

Jeni.

[bibs]

I cannot thank all of you for your advice and support. To know that a complete stranger can be such a strength is mind blowing and I offer my thoughts and prayers to everyone that uses this site. Richard yesterday was given a terminal diagnosis - not what we wanted to hear but you have to live through this and see a loved one change to understand all the emotions that overtake you. He has had no medication apart from paracetamol and codiene ( over the counter ) since the diagnosis apart from anti sickness tablets since xmas eve. Yesterday they finally gave him some vitamins through an iv drip.On Tuesday he will undergo another ERCP to try and relieve the blockage but the consultant is not hopeful. Please include him in your prayers and bless you all and your loved ones. xxxxxxx

[laura]

hello bibs, so sorry to read your latest post, unfortunately most, if not all, sufferers of p.c. are diagnosed as terminal, awful words to hear, it was put to us slightly differantly, " i cannot cure you, but can offer treatment and see what happens" we to were told 6 months ish! but they can never be sure, so go by the base line i guess.

i fully remember how i/we felt after that meeting, takes a while to digest doesnt it?

try and stay positive we are both sure it helps, the alternative of giving up, was not an option for us.

why do they think they cannot do a stent?

thinking of you both bibs and sending love, strength, and loads of poitive vibes. [ dont do

prayers] but if love and thoughts help, you can have as much of mine as you like!

all the very best and enjoy the "now" cos thats all ANY of us can be sure of, so no regrets eh?

love to you bibs laura xxx

[DRAD3]

Hi Bibs - I certainly will do as you ask and hope for the very best for Richard. I am left wondering why they think the ERCP will not sort out the blockage - as Laura said, usually the insertion of a stent would ease this problem. I also question why Richard is not on some decent pain relief? Getting these two sorted could make all the difference to his level of comfort. You mentioned before that he was being treated at two hospitals - is it a case of one thinking the other is taking care of things and therefore things being missed? Have you got a Macmillan (or similar) nurse involved? They are excellent at providing good advice and can be a go-between GP, hospital, yourselves and can also help with pain management - do chase this if this has also been missed. I know this is a lot to think about and to do, but if you get the basics right and get the right support system in place, this awful situation can be, if nothing else, manageable. My heart goes out to you both - I have been in your shoes and know how you feel - I wish I could do more than to just send my love and strength. Take care and keep strong.

Deb

x

[PCUK Nurse Jeni]

Hi Bibs,

So very sorry to hear this news.

As Debs said, getting some of the basic things such as pain relief sorted out will make a huge difference. And, having a Macmillan nurse. Has Richard been referred to one do you know?

I hope the ERCP is successful - they will probably insert a stent if they can.

Do email us on the support line if you need further help, or have any other questions.

Kind regards,

Jeni.

[bibs]

Hi, Richard came home last night. He is now on Morphine Sulphate 10mg/5ml every 2-4 hours, 1 lansoprozole per day, 1 x Metoclopramide 10mg 3 times per day, and because they discovered an infection at the site of the old stent during the ERCP this week co-amoxiclav 500/125 3 times per day for 7 days. Macmillans are coming on Monday but over the telephone they told me to write down when he has the morphine as they might be able to give him a longer lasting type.The dietician at the hospital told him to eat what he wants when he wants. Since the ERCP this week he has gone from zero food to sloppy and today has had porridge for breakfast/lunch a digestive biscuit in tea mid afternoon and a spoonful of rice pudding for tea. Any tips regarding the diet would be much appreciated. You mention creon- is this something that we should be looking at as I have never heard of it? The Consultant said that he was unfit for surgery due to heart and kidney and for the same reasons cannot have chemo. Anything is greatfully received.

Cannot for some reason action email to support line

[Catherine]

Hello Bibs,

Creon is a digestive enzyme, which does the job or part of the job of the pancreas, there is lots of information on the PCUK site about it. Yes push for it, it helps to digest food properly, as those with PC struggle. There is also lots of information about diet on the main website which gives tips such as using full fat milk and adding calories where possible. Does your husband have a dietician? They can offer advice and support on diet. Though it is very positive that your husband has started eating a little again. My mum chose not to have surgery as she has a number of underlying health conditions. She did worry about chemo, has your husband been referred to an oncologist at all?

Lots of love

Catherine xx

[bibs]

Richard's journey on this hideous road ended 11/03/2013.The only comfort we now take is that he is free from suffering and his final week was in xx where the level of care that was given to both him and our family was like nothing we have experienced since this nightmare began last October. They gave him back his dignity which this disease had stripped him of.

[susikus]

I am so sorry to hear that news. My condolences to you and all your family. With love, Sue

[DRAD3]

So, so sorry Bibs. I am relieved to hear that Richard's last days were where he finally got the care he needed and deserved. May he rest in peace now. We are still here for you if you need us - sending you lots of love.

Deb

x

[PCUK Nurse Jeni]

Dear Bibs,

I am so sorry to hear about the passing of your husband Richard. I am very pleased though to hear that the level of care at the hospice was good for Richard and your family.

On behalf of the charity, and the support team, I would like to offer you our sympathies at this sad time. Please do remember that we are here for you should you need to speak to us.

Kind regards,

Jeni.

[KATB]

Bibs, I am so, so sorry to hear this. I'm glad you and Richard received excellent care.

Do take care of yourself.

x