Introducing myself

[Suzz]

Hi, my name's Sue and I'm 49. Our family's world was shaken apart when on 10 March this year, we found out that my husband, Phil, 50 has Pancreatic Cancer, which is stage IV, ie to his liver.

I've been through all the emotions, anger, denial, resignation, but feel like I'm living in limbo. I know full well that Phil's cancer is terminal, but a tiny part of me hopes that a miracle will happen. He's having palliative chemotherapy, and it is definitely making him more comfortable. At the moment, I'm taking one day at a time. I have to bury my head in the sand about what I know in my heart of hearts is going to happen, but it's hope, however miniscule, that's keeping me going at the moment.

Phil and I have one son, Rob, who is 22, who is ever the optimist. He knows the odds of Phil beating this are marginal, but hasn't lost hope. I am so afraid he's setting himelf up to be not prepared when the time comes. I, am totally the opposite - my attitude is to prepare for the worst and hope for an unlikely miracle.

Does that make sense?

Love and hugs,

Sue

[Ellie]

Hi Sue

Welcome to the forum, although it's not where any of us want to be. So sorry to hear about your husband.

I can identify with your feelings so very much. My husband, after having a whipple, was eventually told the cancer had spread to his liver and I, too, had to accept that it would be terminal. I have coped by doing the same as you - accepting what is happening in one way, yet denying any of this is really happening in another and praying for a miracle at the same time. The only thing I am so grateful for is that we have had time to talk to each other, say all the things we want, do as much as we possibly can together with family and friends, and make the most of every single day we have left together. Some people lose their loved ones without any warning and can never say their goodbyes, so I suppose it is one consolation to us that we are having chance to do so.

My daughter is 26 and she remains positive about things, but I know she is confused that her dad will not accept any more treatment. My husband decided quality of life is better than quantity and refused a 3rd chemo treatment, which she found hard to understand at first but eventually accepted that it was his decision to do things this way.

We have a motto - "carrying on regardless" and that is what we are doing. We cherish every day that we can share together and try not to think too far ahead.

We are all here to listen and help if you need us.

Best wishes

Ellie

xx

[Suzz]

Ellie,

Thank you so much for your kind words, and I'm truly sorry to hear about your husband.

Much as I would never wish what I'm going through on anybody else, it really helps to talk to people in the same situation. Sadly, it happens and all we can do is to be as positive for as long as circumstances allow. If this has taught me anything, it's to make the most of everything we have at the time we have it. It's ironic that for the past few years, I've been inwardly worrying about how few years we have left with our parents all of whom we love dearly? Yet I assumed that I'd have 30, possibly more years with my husband, it never occurred to me otherwise. Now I know the hope of another year with him is likely the most I can hope for, and that may not even happen.

The only consolation is that I've asked my dad, who is a retired and well-respected GP if this cancer is hereditary, to which he's replied it is not. I just want to share that with you, seeing as we are both mothers.

Like you say, at least I know I'm getting the chance to say to Phil everything I want to say, and that's a big comfort. Sadly that's a chance that many families and loved ones, including those of the recent Cumbria victims didn't have.

Huge love to you.

Sue

xx

[Nardobd]

Hi Sue

Like you and Ellie, we are living on 'borrowed time', my husband, Ted, having been diagnosed with stage IV pancreatic cancer in January 2009. We have two daughters, aged 35 and 29.

I tell Ted that he just has to survive until some scientist or researcher finds a cure - that's all! We're both very positive, although we are both conscious of the facts and the likely eventual outcome. My stepdaughter, from Ted's first marriage already lost her mother to cancer. My stepdaughter was just 13 at the time, so it's had an enormous effect on her but she still manages to stay hopeful and cheerful. Honestly, I think everyone has to manage in their own way. Of course, I get times where I worry and think of the future but I try not to let those bleak times persist.

Don't forget to let us know how Phil, you and Rob are doing from time to time and there's always someone here with helpful advice or comfort if you need a shoulder.

Take care

Nicki x

[Suzz]

I just want to thank you for your replies and kind words.

It really does help to be able to talk to people who are in the same position, much as I am very sorry that you are also having to go through this. At the moment, Phil is feeling better, and hasn't been sick for several days now. As a child, I always used to slightly spoil all the good times, be it holidays, Christmas, school holidays etc with the knowledge that they wouldn't last. To an extent, this carried on into adulthood. However, now more than ever, I'm determined not to think like this. Of course, I have no idea for how long Phil will continue to feel better, but why ruin what good times while we still have a chance to have them? Phil's brother, Paul has heart trouble and has been in and out of hospital for the past two years. Of course, I am sympathetic, but he's so bitter that even when he's feeling well, he'll say "Yeah but it won't last, it never does" and that is exactly opposite of Phil, who said to me, "I know I have a limited time left, so why waste it being bitter, I'm going to enjoy what time I have as much as I can!"

Although it's sometimes impossible, we do manage to maintain our sense of humour, and still tease each other.

I'm so grateful to have found this site, and I hope I will be able to be a support to you all as you are to me. I thank you from the bottom of my heart.

Love and hugs,

Sue

xx

[scp38]

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Edited August 9, 2010 by scp38

[Suzz]

Please, please let me apologise for not logging in for some time.

To be honest, I've had so much to deal with - I'm giving up work next Friday (I work through a temping agency) and want to spend the rest of Phil's time with him.

His cancer has spread to his bones, and resulted in a 'pathalogical fracture' in his pelvis- which means he is in more pain and disabled. The chemo hasn't worked sadly, yet he still keeps his sense of humour. He is amazing.

All I can do is make what time he has left as best quality as is possible given the circumstances.

Hugs,

Sue

xx

Edited July 17, 2010 by Suzz

[Suzz]

scp38 wrote :

> Hi Suzz - I just wanted to wish you all the best and just say that I am

> going through treatment for PC myself and just lately have been having a

> hard time dealing with - for the obvious reasons - but mostly for the times

> I wont have with my husband and children. What Phil said, about wasting

> time being bitter and enjoying whatever tie we have left is so true. I am

> doing my best to drum that into my head and try and follow his excellent

> advice. All the best to you and may you all have many fantastic times

> ahead to cherish.

> Susan

Susan, I am truly sorry to hear this, and I send you all my love. I honestly don't know what to say, except I'm so glad Phil's advice has been able to help you - I've told him that too, and he was glad to know he's helped somebody.

I send you all my love

Sue

xx

[Nardobd]

Hi Sue and I'm sorry to hear about the progression of Phil's disease. I took a year out when Ted was first diagnosed and I can assure you it was well worthwhile - the quality time you will spend together is fantastic and you will be far less stressed.

Do keep posting and let us know how Phil is getting on.

Nicki x

[sausagehead]

Hi Sue,

Like you i am new to this site and this is the first time i have logged on, I was diagnosed last July with PC aged 48 (49 now) and went onto have tests and a Lapcaroscopy then a PPPD operation in September, They found a Tumour in the head of the Pancreas and also one in the duodenum,

out of 16 lymph nodes removed one was invaded but the biopsy showed no sign of malignancy,

It is a hard and long Operation 8 hours but worth it, I know what your husband will be feeling but, i would like stress is to stay positive, Talk to people, don't bottle your emotions up.

Regards

Graham

[Ellie]

Hi Sue

So very sorry to hear that things have got worse for Phil. Again, I can imagine how you are feeling as Brian, my hubby, is in the same situation.

I hope you can enjoy spending all your time with Phil once you finish work. At least it shouldn't be so demanding on your time if you don't have to work.

I truly hope the doctors can keep Phil relatively pain free. That's the worst for us carers - having to see our loved ones suffer.

Sending you my warmest wishes,

Ellie

x

[Ellie]

Hi Graham

Just to say, welcome to the site. Sorry to hear that you have been through the major op. How are you doing now? Are you having any chemo? Have you got your strength back etc?

Maybe you'd like to tell us a bit more about your situation.

Hope you will find friends on this site for help and support if you need it.

Best wishes

Ellie

[sausagehead]

Hi Ellie

Thanks for your reply, In answer to your questions, I had the PPPD operation last september and started Chemo in October, i was on that for 6 months having Gemcitabine once a week for 3 weeks and one week off, I was great with it for the first 4 months and then for some reason i started haveing what i was told was Anxiety and i used to be sick either before or after Chemo never during but it was once each time and then i was fine (usually down to town for a Big Mc), The consultant told me that he thought that the Operation had cleared me up so i took that as good news but, even from before i started Chemo my Tumour marker was 4 although it was 279 before the operation i used to get the Consultant to tell me the Score at each monthly consultation, the highest rising to 8 which is good, Hopefully he was right, and with the marker being normal before i started Chemo, then any stray cells have been killed off,

Going back to after the operation and i know this major op will affect people in different ways but it was my intention to get up and about as soon as possible, i was out of the Hospital within 8 days and i used to walk around the living room and Kitchen 10 times every time i came down stairs for something to eat, i set myself a goal that i would be walking my dog within 1 week of coming home, I believe things help if you set yourself a goal or target (well it did for me)

As for my strength well i have always suffered from back problems so this operation is an added hinderance, but, i still suffer from the operation around the scarring but I can live with that, i was told in the Hospital that the stomach can take anything up to 18 months to settle down so i will have to get used to it.

As far as i know everything has and is fine with me and maybe i am lucky, who knows. It was only by chance last year i went to the Doctor as i felt fine apart from what i thought was a touch of IBS and to be honest i was prepared to return to work which was Offshore and working a month away at a time,

Funny really in my head i really think someone told me to go to the Doctor that day, as he sent me for bloods (which picked up a high enzyme count and the start of things) I always think what would have happend if i went down the day before , day after or even saw a locum, Maybe it would have been some magic pills and told to come back in a week if it didn't work by which time it could have been too late,everything is done for a reason hopefully i got it right,

Back to now though and one of the reasons i am here is that i went to the Doc's last week as i have been feeling down and Depressed, Just looking for someone to share what i have been through and share experiences, There is no magic pill to take but you need to talk to people, It is easy for people to say don't worry or You'll be ok but everytime you turn the tele on or pick up a paper you are constantly reminded about Cancer, Please don't get me wrong but, being a casualty of this desease, personally I would rather not be constantly reminded of it so often, You get told not to go on the internet but the Human is a Curious creature and curiousity gets the better and when you see the satistics they look grim, but these satistics are never broken down to other factors like other conditions, age, whether an Operation was carried out and, they paint a grim picture. When you have or are having Chemo then you have that comfort zone that someone is monitoring you, once you stop then this taken away from you and for me it is worrying, the demons in your head saying things like "has it come back" or " what if"

I would really like to know if what i am feeling is the "Norm" and others feel the same or have i lost the plot"

In myself i am fine but i have black days i have never referred to this cancer as a desease but more like a bug and i try to make light of it, I am determined not to let it beat me but there are times when you need to talk to someone in similar circumstances due to being depressed

Ellie i hope i haven't bored you too much or anyone else who has read it I could write more but think i should stop here

Regards

Graham

[Trevor F]

Graham

As published elsewhere on this Forum I had a Whipples procedure 13 months ago after turning bright yellow from top to toe at the end of May 2009, so I had to go to the doctor. I was told what the cause was and I was told that it was operable. In fact I was advised that I was the ideal candidate for the operation.I then spent 6-7 weeks at home watching the grass grow after which I returned to work part-time as I was getting bored. I felt so sore for months but that has now more or less gone away. I had adjuvent chemo for 4-5 months which caused the runs but no other side effects. I still get the runs from time to time but it's a bit better than it was. I'm now working in Switzerland during the week, commuting from London, and I can walk along an airport corridor as fast as anyone else.

I lost a lot of weight which was a good thing, only putting part of it back, so I look a bit slimmer. I'd like to get involved in more cancer charity work, which is a little difficult being abroad for much of the week, having survived the initial part at least. We're off to Sicily 2nd half of August for a few days, driving down from Rome. I have stopped eating red meat for the most part, stopped imbibing red wine, but carried on with the beer. Good job I like fish and pasta.

Bonne chance.

[Ellie]

Hi Sue

Just a quick note to ask how things are going for you and Phil? How are you finding it now that you've given up work? Hope it's making life easier for you and I'm sure Phil will be enjoying your company at home.

Please let me know how you are.

Love

Ellie

x