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

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Mr Edd
Posts: 4
Joined: Thu Jul 07, 2011 11:10 am

Having a bad day

Postby Mr Edd » Sun Jul 10, 2011 10:22 am

I am new here so please forgive me if I say anything out of line.

I was told last Thursday that my wife has cancer which has already spread from her pancreas to her Kidneys, Liver, Lungs and Thyroid. She started with a lot of fluid in her legs which they initially thought was a DVT but eliminated that and started to treat her for kidneys. She became quite poorly on Wednesday of last week and they took her into the Cardiology ward at New Cross. After a few test etc we found out about the cancer last week.

As you can imagine we are devastated. It will be out 46th wedding anniversary in September and she is my life my soul mate and I am not sure I can cope. Today is a bad day for me and I don't know who to talk to. We have a son (46) and daughter (35) and are a very close family. My daughter is taking it very bad and it makes it very difficult to talk about anything.

My wife is the carer for her father who lives with us. He is 92 and an invalid and is slowly loosing his memory. I am now looking after him but I can't talk to him either. He knows but I am not sure he understand, I don't know if I do for that matter.

Tomorrow she is having biopsies and we may get more info later in the day or whenever, these things seem to take forever. The staff at the hospital are wonderful but we don't seem able to talk to anyone there or perhaps it wont happen until after the biopsys etc.

I just don't know what to do.

Edd

pamela
Posts: 27
Joined: Sun Aug 08, 2010 9:52 am

Re: Having a bad day

Postby pamela » Sun Jul 10, 2011 3:26 pm

sorry to hear about your wife.Spend as much time with her as you can,special moments.

Have you had any input from the macmillan nurses? through the oncologist.
It's probably your daughters own way of coping with the news. I had to keep a brave face to all the weeks my dad was ill,it was unbearable.but i did it for my family.
You are always welcome to talk on here, I myself look in most days but don't tend to post often.I lost my dad to this cruel disease.

Pam

Mr Edd
Posts: 4
Joined: Thu Jul 07, 2011 11:10 am

Re: Having a bad day

Postby Mr Edd » Sun Jul 10, 2011 4:05 pm

Thanks Pam for your response.

I guess it's still early days for us as we haven't yet had any contact with the Macmillan people. We do have a very strong support group with my wife's church. All my family have a strong faith although I myself have dropped off over the last few years. I guess that's why I feel abandoned. My fault really but I still believe in the power of prayer.

My wife is still in the cardiology ward but we have been told that they may move her to the oncology ward soon. They also told us she will be able to come home once they have mapped out a treatment. I would love that as I could then nurse her myself. She was very ill 36 years ago with Ulcerative Colitis and I nearly lost her then but she is a fighter and pulled through that. I nursed her then so I'm used to that. She has managed her health very well since then; watching everything she eats and staying clear of anything that aggravate the colitis. But this was just a bolt out of the blue and I am still reeling from it.

The biggest problem is not knowing anything and not having yet been able to talk to anyone. I don't even know what questions to ask. I noticed in a few threads in this forum that people talk about Winbles (?) and stents. I have no idea what these are, I guess something to do with treatment although the doctor has already told us that surgery is out of the question.

She did say that there will be a meeting or panel where they discuss her condition and then they will start treatment accordingly. My worry is that they will say she is too old (68 next month) and so say she is not worth it. I remember watching the Panorama show about NICE and how they sit around a table and discuss cases and who to give treatment to and who not. We lived most of our lives in Australia and the NHS here is something new to us. The treatment in Oz was fantastic but of course that was all done through insurance and private hospitals. I have no idea if I can actually compare the two services or not. I had a stint in hospital over there for surgery in private hospital back in the 1980's and the services were fantastic. This is our first real experience with the NHS.

I find forum talk like this very good, I have used forums for years and I'm actually a forum administrator for a theatre group so I am used to chatting like this.

Sorry if I am rambling but I am having a bad day today, I will be off to visit her shortly with my son and his wife. My daughter is there this afternoon with an old family friend.

Its just that dreaded word Cancer that has floored us.

Edd

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

Re: Having a bad day

Postby laura » Sun Jul 10, 2011 11:52 pm

hello edd, the shock of being told about pc is awful, my husband was diagnosed feb 2010 , stent inserted because of blockage causing severe jaundice, attempted whipples op but tumour wrapped round superior mesenteric vein, so bypasses done and sewn up, now on 13th month of gemcap, a chemo which consists of intravenous once a wk and tablets for 7 days this is for three wks out of four, i know it feels like your waiting ages for something to be decided, but the team has to be sure that they make the right decision for your wife, i am sure her age will not be an issue, where we go to chemo in truro, cornwall, my husband is one of the youngest , senior patients and he is 62. try and take each day as it comes, my best wishes to you both,laura

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

Re: Having a bad day

Postby Nardobd » Mon Jul 11, 2011 6:36 pm

Hi Edd

I'm sure that you are completely floored. I know we were when my hubby was diagnosed. It takes a while for all the information to sink in but I can reassure you that your wife's age shouldn't be a problem. My hubby is 65 and although the tumour is inoperable the hospital are treating it quite aggressively - he's on his third lot of chemo since he was diagnosed in Febr 2009.

Does your wife have a nurse-specialist? If so, make use of them! They are nurses which specialise in pancreatic disorders and their language isn't quite as technical as the doctors'.

A whipple is the name of an operation which some pancreatic cancer patients have. A stent is a tube inserted into the bile duct if it is obstructed by a pancreatic tumour.

A list of good basic questions can be found on the main PCUK site: www.pancreaticcancer.org.uk/support_basic_questions.htm.

The one difference between NHS and private treatment is the timing. In the NHS the staff tend to be a little less 'exercised' about getting things done quickly. My advice would be to push for things to be done. If someone says this or that needs doing ask "when will that be done then". If you're told to wait for an appointment (nicely) point out that you're concerned the waiting will have a detrimental effect. You have to be quite assertive!

Any questions, pop them on here and we'll help if we can. Jeni, one of the moderators is great with clinical stuff because she's worked with cancer patients for a number of years. If you would like her help but don't want to post publicly then she can be contacted on support@pancreaticcancer.org.uk.

Kind regards
Nicki

Mr Edd
Posts: 4
Joined: Thu Jul 07, 2011 11:10 am

Re: Having a bad day

Postby Mr Edd » Wed Jul 13, 2011 1:57 pm

Hello and thanks for you comments. Sorry I haven't been back for a couple of days but things just get on top etc.

I am also looking after my father-in=law who is 92 and an invalid he's also loosing short term memory so it doesn't get any easier.

Well I have just had some good news... She is coming home today. She had something called fine needle what's-it yesterday in her neck which she said was uncomfortable but not too bad. They also wanted to do biopsies of the kidneys and liver I think? but then asked for some sort of consent form to be signed. As she is feeling a bit unsure she refused. I think this morning she talked to her heart doctor about it as she wasn't very confident with the one doing the biopsies. Maybe this is why they are sending her home I dunno?

I rang the Macmillan people up this morning and had a very nice chat with a you woman who was very good. They are sending out an info pack which I may get tomorrow.

The wife said that there is going to be a big meeting on Friday to discuss her case and then we will get the info on treatment etc. When she goes back in hospital it will be the oncology ward and may only be for treatment so she maybe home again in the same day. All this stuff is so new to us we don't know what to ask about. Is there a list of questions on here?

Sorry if this is a bit rambling. I am both worried and excited she is coming home.

Edd

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

Re: Having a bad day

Postby PCUK Nurse Jeni » Thu Jul 14, 2011 10:16 am

Hi Edd,

I am sorry to hear that your wife has been diagnosed with pancreatic cancer. It is good to hear that she is able to come home today.

You mentioned that you were looking for a list of questions to ask. We do have a list of questions on our website, just follow this link http://www.pancreaticcancer.org.uk/supp ... stions.htm

You mentioned that a number of people will be meeting to discuss your wife's treatment and care. This will be a multi-disciplinary team (MDT) meeting. The multi-disciplinary team (MDT) is a specialist multi-professional team who make decisions together about how someone diagnosed with pancreatic cancer is to be looked after during the course of their illness. The core team generally consists of an MDT co-ordinator, gastroenterologist, medical oncologist (deals with chemotherapy), clinical oncologist (deals with radiotherapy), radiologist ( an expert on all types of scans and x-rays), pathologist (looks at tissue under the microscope), nurse specialist, dietician and surgeon.

At the MDT meeting the plan for treatment for each patient is discussed and any investigations which are recommended are ordered and the findings from any previous investigations discussed. Eligibility for clinical trials will also be considered. All members of the team should agree on a course of action and the decision taken should be accurately recorded and acted upon by a member of the team. You can read more about the MDT on our website http://www.pancreaticcancer.org.uk/treatment_mdt.htm

Pancreatic Cancer UK runs a Support Service where we can provide information and support, you can contact the service at support@pancreaticcancer.org.uk or by calling our office (0)203 177 1686

Kind regards

Anna

Mr Edd
Posts: 4
Joined: Thu Jul 07, 2011 11:10 am

Re: Having a bad day

Postby Mr Edd » Sat Sep 03, 2011 7:52 am

My angel and wife, Angela, died at 3.20am on the 1st September 2011. My light has gone out.

It would have been our 46th wedding anniversary on the 18th but instead we are having a memorial service. She had a bad night with difficulty breathing. The nurses in the palliative care in our local country town of [name removed -moderator] hospital were fantastic and help her as much as possible. Her breathing changed at 3.10 and she stopped by 3.20 and was finally at rest.

I shall miss her so much. 8 weeks from diagnosis to her death seemed so quick. We felt abandoned by the departments at [name removed -moderator] Hospital as they didn't take ownership of the case and pussy footed between the cardiology ward and the oncology department.

We were fortunate in that a close family friend is the local town phlebotomist and knew the Macmillan nurse. She contacted our GP who still didn't know Angela had cancer and arranged a visit. When she arrived she contacted [name removed -moderator] hospital and arranged an appointment for a thyroid biopsies. After witch they arranged an appointment with urology. A few days later we got a call to change that appointment to oncology specialist but a week later. Angela was too ill by then and had already been admitted to palliative care on Tuesday last week where she died this Thursday morning.

It appears that there was no proper communication between the cardiology and oncology departments in[name removed -moderator] hospital and my poor wife fell between the cracks. What communication there was, was inappropriate in that a junior doctor went to see her in cardiology and told her about the cancer, there was no discussion with me or any family and it was left to her to tell me at the next visit. Even the nurses on the ward were disgusted with the way we were told. She was discharged two days later with no support or advise or any communication between the departments. We were left with the false understanding that someone would contact us and a discussion on treatment would eventually take place. But we heard nothing. As a result we didn't have the necessary discussions between my wife and I about the future as we were under the impression that some treatment would commence eventually. She said she would fight it and so we didn't face the facts.

So if you have family in [name removed -moderator] Hospital you will have to drive them to talk to each department and don't expect any discussion with the patient or family, they just washed their collective hands of my dear wife. My son and his wife have contacted the doctors there and had discussion with them about the situation we found ourselves in and they requested that my son send a letter outlining in detail all of the above and they may discuss it and change their proceeders. But don't hold yer breath if you or a family member has any dealing with [name removed -moderator].

Sorry for the rant but I am upset and feeling the loss.

Edd

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

Re: Having a bad day

Postby louiepc » Sat Sep 03, 2011 2:05 pm

Edd, I am so very sorry to hear of Angela's passing.

It is a terrible and sudden illness, it seems to take hold so quickly. My mum is very poorly with pc she was diagnosed around the same time as your wife. It is very frightening how many people on here seem to echo a similar story concerning the hospitals. We too have had poor communication, we're not too far from you either, not the same hospital though.

Anyway I digress, I offer you and your family, my deepest condolences. Rant as much as you want, you need to be able to talk things through.


Thoughts are with you at this very difficult time.

Louie x

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

Re: Having a bad day

Postby CFF » Sat Sep 03, 2011 5:19 pm

I'm so so sorry Edd,

To lose your wife in circumstances of feeling so unsupported by the medical profession is just terrible.

There's no words to really comfort you I know but use this forum for support and rants and I hope you have lots of family and friends around you at this time.

You should be so very proud of your 46 years together.

Take care of yourself xxx

RSK
Posts: 19
Joined: Thu Aug 04, 2011 5:59 pm

Re: Having a bad day

Postby RSK » Sun Sep 04, 2011 8:43 pm

So sorry Edd, my dad died on the 25th his funeral was yesterday. We had just less than 6 weeks and he fell into the cracks too. So much time wasted in hospital on a cardiology ward with little or no treatment why they argued over who would do what. My parents had been married 43 years and he was just 63. At times you just feel so helpless and the anger in me towards the hospital will do very little to bring my dad back. I just don't understand why so many seem to fall into this situation :x

Keep your chin up, and wishing you all the best, like you I hope my faith, friends and concentrating on work will get me through.

Robyn

millyjo
Posts: 74
Joined: Mon Aug 03, 2009 4:29 pm

Re: Having a bad day

Postby millyjo » Mon Sep 05, 2011 9:48 am

Dear Edd,
So sorry to here about the loss of your dear wife.
Please accept my condolances.
Millyjo xx