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

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emmao
Posts: 2
Joined: Tue Apr 17, 2007 12:41 am

My Mum

Postby emmao » Tue Apr 17, 2007 2:09 am

Hello all,

I'm new to all of this and only discovered this great website yesterday morning.

My mum had felt a bit under the weather earlier this year, particularly with a loss of appetite, but just put it down to her 'flu jab. She started losing weight, but not at an alarming rate, and as I now know her doctor just put it down to anxiety.

Mum saw her doctor around the time of her and Dad's 40th wedding anniversary in early March, as she noticed her eyes looked yellow. The doctor sent off a blood sample and jaundice was confirmed. Mum was then referred to her local hospital for an ultrasound scan which revealed what was thought to be a gallstone, measuring approx. 1.5cm. What seems poignant now is that at the initial doctor's consultation, he gave mum a big hug.

A little while later (dates and times seem a bit blurry at the moment) Mum was referred to a larger hospital to see a consultant, who advised that she needed to be an in-patient in order to have (what I also now know) to be an ERCP. She stayed in hospital at this point for 6 days until she was sent home after having a stent fitted and told that she needed a big liver operation. Mum was always a tough cookie and always protected me and my younger brother, but I didn't think to really question what she was telling us. Things weren't really adding up, but I went along with what she said (I wouldn't dare do anything else(!)). I did try to probe a few times, and mum did say that her gallbladder had packed up, and that the stent would relieve the jaundice symptoms (which it did). As I understood from mum, the idea of the stent was for the gallstone to pass through, but this didn't happen. She was referred on (again) to a more specialised liver unit, and I hoped that the referral would be quick. Mum spent two weeks at home, gradually getting weaker, eating less (my poor old dad couldn't even cook his dinner without mum complaining about the smell and insisting he shut the kitchen door!), feeling hot all the time (dad was freezing with the windows being open, even I'd started wearing jumpers on my visits there!), feeling very, very thirsty and eventually not getting out of bed, and losing interest in things such as TV programmes and having her hair washed, which was unlike mum.

To add to it all mum was constipated and bloated, and couldn't stand the Lactulose which was prescribed to get her 'moving'. She also didn't like the build up drinks she was prescribed either. All this adding to the medication she was on - mum had high blood pressure and diabetes mellitus, so was already on Metformin, etc.

In the very early hours of last Monday morning, she felt ill enough to tell dad to ring the doctor, and an ambulance took her to the hospital where she previously stayed for 6 days. Her sugar levels were ridiculously high - 23 or something (she'd just wanted to eat things like jelly, and sour things like pieces of lemon) and she was severely dehydrated, even though she was drinking.

She was given fluids by drip, and put on a catheter and when I saw her on Monday afternoon, she looked better than she did two days before, at home, so I was relieved to see an improvement. However, things moved on, and quite quickly. Mum's condition slowly got worse, and even though she wasn't on a catheter on the Wednesday, she had a water infection and had to have drips and a catheter again to keep her levels up. By now she was being given insulin injections with a view to this being permanent, instead of the metformin.

I think last Friday pancreatitis was suspected and mum had a build up of fluid which they were going to try and clear.

I can't remember now, but I think by the Friday she was on oxygen and on Saturday morning dad was told (over the phone!) by a doctor that it was 99% likely that she had pancreatic cancer, she was too weak to operate, or have a tissue sample taken, and that she wouldn't be resuscitated. She was moved to another ward, into a private side room, and although she put up a strong fight, it was too much for her and she passed away very peacefully yesterday morning with me, dad, my brother and sister-in-law at her bedside. She was 63.

I am so angry about different things, some of which are going to be addressed, but sadly now I feel that she knew the truth and wanted to protect us all. Her referral letter came through last Friday with an appointment for this Friday, which of course we've now cancelled.

My dad was diagnosed with skin cancer three years ago and is still not in remission. Cancer is just the most awful thing and it's robbed me of a wonderful, strong, brave mum who's left behind two bewildered grandsons, not to mention the rest of her family and friends. My brother's mother-in-law has stage 4 ovarian cancer, and has vowed to fight it, after seeing mum in hospital (she's been fighting it anyway, but this has made her more determined to beat it).

Pancreatic cancer, it seems, is so hard to diagnose, and it's one of those cancers which shows symptoms only in the late stages. Not enough is done to detect it early enough.

Mum smoked for over 40 years, and packed it in nearly 4 years ago, when she was first diagnosed with diabetes. She did manage to say a few things on Sunday (the day before she died) including advice to my other half and eldest son not to smoke, both of whom have now vowed to do so in her memory (and I shall be making sure they do!).

I'm sorry to share this with you, especially when you're looking for hope, but I just felt that I had to do something during my phase of insomnia! Everyone is different and so therefore the outcome is not the same for everyone. My heart goes out to all of you who have been or are affected by this dreadful disease.

beaniek
Posts: 2
Joined: Wed Apr 04, 2007 8:55 pm

Postby beaniek » Tue Apr 17, 2007 11:23 am

Dear Emmao,

I know how devastated you must be. My mum also died yesterday from the dreaded pancreatic cancer. So say I am inconsolable is an understatement. My beautiful mum was only 54 and she truly was a wonderful person. Throughout her whole illness I have been nothing but angry with pancreatic cancer and the fact that my mum was not even given the chance to fight it, she was given a death sentance at diagnosis.

Broken hearted
Kerry X

melanie w
Posts: 5
Joined: Wed Apr 11, 2007 2:16 pm

Postby melanie w » Tue Apr 17, 2007 2:20 pm

Dear Emma (and Kerry)

I feel so much for both of you, my dad died 3 yrs ago of this terrbile disease. I do feel now that I am glad he had such a quick release from the battle he could never win. He was ok ish for about 5 months after his op where he felt good then it came back and he didnt tell any of us. He was getting worse from July and finally said goodbye in October.

I hope that sometime you both can find those feelings, there is nothing on this earth worse than watching your parent fade away, this strong person who has always been there when you needed them, i felt i grew up overnight when dad died.

I cant tell you time will help, it will make it slightly easier to bear and in time, your happy memories will be more prominent than the sad ones.

Im so truly sorry for you both, I do know how you feel, take care of yourselves.

Mel
xx

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Tue Apr 17, 2007 5:20 pm

Emma, Kerry and Melanie
I am so sorry to hear how you have lost your loved mums and dad.

For those of us still going through our journey with loved ones who are ill, it doesn't make us give up hope - I guess we just learn to revise what we hope for. Early on in my dad's illness I hoped for a diagnosis of pancreatitis or IBS. Then when we knew he had pancreas cancer I hoped for some form of treatment. Then when they couldn't offer any treatment I hoped for my dad to be comfortable and in peace.

It's often hard to find any positives in this awful disease and dying process.

Please all take care of yourselves and your families.

melanie w
Posts: 5
Joined: Wed Apr 11, 2007 2:16 pm

Postby melanie w » Tue Apr 17, 2007 10:15 pm

Hi Rosie

I still live in hope of even an advance in diagnostic technique if not a cure, at least then people would have the strength to fight this disease and be given the best chance with early diagnosis

Take care

M
xx

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Tue Apr 17, 2007 11:20 pm

Melanie - yes I agree with you there. Later on (after my dad has passed) I want to look into that in more detail. I am also concerned in that pancreas cancer has affected my paternal grandmother, father and maternal grandfather. So I want to look at the Europac info and what they're doing to investigate genetics.

And another positive I can see (if I look hard enough ;)) is that I can always think about fundraising for research and diagnostic techniques.

:)

Barb (Canada)

Emma & Kerry

Postby Barb (Canada) » Wed Apr 18, 2007 3:38 am

I am so, so sorry for your losses.

My family too will soon be in the same situation with our Mom and I can only think that the only thing that can possibly come of it is knowing that your loved one is no longer in pain... its the watching these strong, wonderful, caring people who have been your strength in the pasr disappear and in so much pain and heartache that it is the hardest.

My prayers go out to you and your families.

KarenM
Posts: 2
Joined: Fri Apr 27, 2007 1:12 pm

Mum

Postby KarenM » Thu May 03, 2007 1:21 pm

:( I am so sad to have needed to look for a site like this. My mum is 71. She would have been 72 this August but very probably won't be here then. She went off on holiday in Jan and came back in Feb. Within a week she was feeling unwell and went to her GP who noticed she was jaundiced and that was the first signs of something not being right. She was going to have the tumour removed but it had attached itself to some bloodvessels so they had to bypas it. We were told 6-12 months max. That depended on whether or not she could have chemo or not. Her recovery from the op has not been good though. The tumour is bleeding into her stomach and is using her blood supply, causing her blood count to drop. It also makes her really sick. She is currently in hospital again, having a course of radiotherapy in the hope it stops the bleeding and shrinks the cancer back. they have now told her chemo is not an option. We have always been really close. Trouble is she is in Cornwall and I am 250 miles away. I am so sad for everyone who is affected by this awful disease. There is so much more I could say, but if anyone wants to reply it would be good to share what we are all going through.

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Thu May 03, 2007 2:29 pm

Karen
I'm sorry you've had to come looking for this site, too. I am also really sorry to hear about your mum.

So few people seem to be "ineligible" for surgery with this disease. Do you know why chemo is not an option?

I can understand your concerns about being so far away - I'm 70 miles away from my parents but as luck would have it I took voluntary redundancy from my job at the end of March and so I've decided not to go back to work just yet, but to take time out and care for my dad instead.

My husband is great about it - I am away from home Mon-Thurs and get home on Friday night for the weekend most weeks.

I agree with you that it is helpful to share what we're all going through and support each other.

Take care.
Jan

looloo1
Posts: 7
Joined: Sat Mar 17, 2007 8:20 pm

Postby looloo1 » Thu May 03, 2007 6:23 pm

Hi everyone, I am not a carer but a pancreatic cancer survivor (1 year). I am truly touched by all the messages on this page left by loved ones, and feel compelled to say it. You are very wonderful, caring people and your loved ones must be very proud of you.

I had never heard of pancreas cancer before I was diagnosed, and I cant believe or accept that its happened to me, I am lucky that I could be operated on, but it seems that Im showing signs of a recurrence 1 year on. I lost my best friend to stomach cancer last year at the age of 29 and just cant believe how my life has been affected by this. Im already grieving at the thought of leaving my beautiful children (aged 7 and 5) without a mother for the rest of their life.

I really do hope that pancreatic cancer gets a boost in funding to explore more about the ways of early detection, and ways to beat this disease. I was truly shocked to read the number of people that are affected by this disease in the UK each year and the very poor survival rate.

You're all in my thoughts,
Lynn

emmao
Posts: 2
Joined: Tue Apr 17, 2007 12:41 am

Postby emmao » Fri May 04, 2007 3:28 pm

Hi everyone, especially Kerry, Mel, Jan, Barb, Karen and Lynn,

Thank you for your messages of support, which have been a great comfort. Mum's funeral was last Thursday, and was a fitting tribute to her. The one 'good' thing (for want of a better a word) that has come out of all this is that pancreatic cancer awareness is being increased, and Dad and I were specific about any donations being sent to Pancreatic Cancer UK, and not just Cancer UK, in the hope that one day detection and diagnosis will be much earlier than at present.

My heart goes out to everyone affected by this terrible disease, and Lynn, you are in my thoughts. Stay strong, stay positive (I know I only have experience from a carer's point of view, but want to offer you my support as well).

Take care everyone.

Emma

beaniek
Posts: 2
Joined: Wed Apr 04, 2007 8:55 pm

Postby beaniek » Fri May 04, 2007 4:35 pm

Hi Emma and all,

My mum's funeral was last friday and I although I thought it would be quite hard it was not nearly as hard as I thought it would be, I think this was because that since the day they told us she was going to die from PC in Nov 2006, we have all been crying nearly everyday since and because the last week of her life she was in so much pain it was a relief when she passed and was at peace. I don't think I have accepted that she has actually gone yet, but as I was at the start of all of this I am still so angry that this cancer can kill so many so quickly. Hopefully for our mothers and fathers and any relatives that could be at risk of this, there will be something that can detect this horrible cancer sooner rather than too late. At my mum's funeral I was so proud, I just carried this feeling around with me and when I get really down I remember how proud it makes me feel that I was lucky enough to have the most loving and caring mother that would do anything for me and our family. I didn't need to wait till mum got to heaven because she has always been my angel.

Take care

Kerry XX

rosieh
Posts: 69
Joined: Sat Apr 14, 2007 11:42 am

Postby rosieh » Fri May 04, 2007 8:20 pm

Hi Emma and Kerry - I am glad you both checked in to say how things are going.

Kerry - I'm glad you got through your mum's funeral service, and the words you have written about her are lovely - very moving.

Emma - I couldn't agree more with what you said about helping support research into PC. I have donated to "Cancer Research" or "Breast Cancer" charities in the past, but now - like you - I'll want to be more specific about where my money goes.

Take care, both of you.
Jan
x

Barb (Canada)

Emma, Kerry & Jan

Postby Barb (Canada) » Sat May 05, 2007 6:09 am

Hi Guys ...

Emma and Kerry, I hope you are finding some kind of peace after all you have gone through with your loved ones if not only by knowing they are no longer suffering and in pain.

Emma, Kerry and Jan, I too will be asking for donations to go to PC research this is such a terrible disease and I know they are making progress but it seems to be so slow in the area of detecting the disease and it seems that detection is the key to the success of fighting PC.

I lost my best friend at 25 years of age (1986) to this same disease and for her too it took 5 months of mis-diagnosis before it was detected and once diagnosed she was gone in 3 months. It seems that detecting early is the key especially to how long you can fight it and want treatment you can have especially if you find it early enough that it is operable, which has not been the case with any of our loved ones.

The last weekend of every May in Canada we have Relay for Life.

Teams of people (usually 10) walk laps from 6:00 p.m. Friday until 8:00 a.m. the next day. Most teams have a theme (my group are the "Campbell & Cooper Cure for Cancer Crusaders), teams pitch tents for the night around the track, dress up, sing/shout chants, music plays and people walk together and talk together all night. Some nights in May in Alberta its cold, wet, and miserable, and when the daw breaks at 4:00 a.m. its a relief. People light luminaries around the track at dusk (10 p.m.) in honour of survivors and in memorium of those that have died. Its quite incredible and very emotional to see how many luminaries are light for so many people. Last year our team raised $13,000.00 for Cancer Research. This year my team from work have told me they are walking for my Mom which moves me greatly.

Take care all and to Emma and Kerry I hope you and your families can continue to be strong together and for each other.

Best wishes and prayers to you all.

B

KarenM
Posts: 2
Joined: Fri Apr 27, 2007 1:12 pm

Mum

Postby KarenM » Tue May 15, 2007 7:04 pm

My mum is out of hospital again, recovering from the Radiotherapy. She is sleeping a lot and has been quite sick. I am hoping she will start to pick up soon.

I can't help but wonder about her quality of life at the moment. She has been very brave and has arranged her own funeral. She has decided to go into a hospice towards the end. I saw her last weekend and we sat and went over some of the funeral plans together. It was the weirdest feeling.

The good news is that my husband and I have decided to relocate back to Cornwall so with any luck I might be there for the end.

Thanks for all your kind thoughts