New to Forum - Introduction to My Wife

[Trevor]

My wife, Christine, was diagnosed with inoperable Pancreatic Cancer on Friday January 23rd. She had had her 59th birthday on December 27th 2008. The tumour was inoperable because a slight spot was shown in her liver.

Chris has been receiving Chemotherapy (Gemcitabine) since February 19th. When she was diagnosed her Cancer Count was over 8,000 - now it's below 100. She was initially in great pain, but has been pain free since early April. The unfortunate side-effect was to "wipe her legs out" by mid-May - basically confining her to a wheelchair. Her oncologist stopped treatement for four weeks in order for her legs to return to "near normal". Whilst still having some difficulty walking, Chris is now out of the wheelchair.

From Feb 19th, Chris had six weeks chemo (in 7 weeks) prior to scans. These showed cancer gone from her liver, and tumour much reduced. She has only had 8 more gemcitabine treatments since her 6th (April 3rd), although her scheduled chemo programme should be 3 weeks on, 1 week off. Her oncologist has told us this will continue on an on-going basis as long as it does some good AND Chris is willing to accept side-effects.

Chris is doing really well, being extremely positive, eating well & enjoying the holiday programme we' ve been following since she was diagnosed. I try to arrange a holiday every month to ensure Chris has good targets to aim at. These play havoc with her treatment programme but her oncologist is fully supportive of this approach.

We told all our friends around the world immediately about Chris's diagnosis & keep them informed of developments every month by Email. We knew we would need their support, & they have all been wonderful. Prayer groups, distance healing, positive thinking groups have all played their part in supporting Chris.

We both worry about how this cancer will develop. We hear such horror stories & the medical profession seem unwilling (or, perhaps, simply don't know) to offer advice on the likely path the cancer will take.

Meanwhile, Chris is an inspiration to me with her bravery & positiveness. We'll enjoy life as long as we can - which means going off to Brittany early September for this month's holiday! Any help, or infiormation, anyone can provide will be gratefully received.

[Nardobd]

Hi Trevor (and Chris, if you're reading).

Well, as my husband's oncologist said today "You're beating the odds and exceeding expectations" because, as a general rule, they expect to see a rapid deterioration within the first six months to a year after diagnosis. Chris sounds very much like Ted, my husband - very positive and determined to fight and I'm sure that helps. To watch them battling with such courage and dignity is very humbling isn't it?

Ted's chemo (also gemcitabine) has finished now, as you'll see from my post today. I understand that if the tumour markers (currently at an unbelievable 5) rise significantly they may be able to give him a second chemotherapy but we'll cross that bridge if and when we come to it. Not all the stories are horrific and some patients do go into remission although, as you probably know, pancreatic cancer is very aggressive. There is a considerable amount of research being done and there are some trials going on at the moment both here and the US, so it's not necessarily all doom and gloom.

There's a lot of information on the main website and you'll want to read through that but if there are any particular questions you have, or you just want to vent, then thepeople on this forum are fantastic and very supportive and will be behind you and Chris all the way and, of course, you can also email the PCUK team. You're obviously doing exactly the right thing and spending a lot of quality time together, which is so important and will keep Chris' morale up together with the support from your friends.

Let us know how Chris is doing from time to time and whether you had good weather in Brittany!

Kind regards

Nicki

[Ellie]

Hi Trevor

Welcome to the forum. It's not where any of us want to be, but at least it's somewhere we can find some help and support.

My husband was 58 on the 29th December (so similar to Chris!) and he's on gemcetibine after having had a whipple op last July, then finding a spot on his liver in April this year. He's due to have a scan next month, to see how things are going. I was very sorry to learn how the chemo affected her so badly with her legs, yet was very encouraged to read of how it has worked well in other ways.

We, too, are going away as much as we possibly can. We have a caravan and are taking every opportunity to go away and see all the places we love, or new ones we've had been to before. Unlike you, though, we work round his chemo and are always back for his regular appointment, but I do admire you for doing it your way! We used to go to France a lot and I would love to go back again, but my husband finds it too uncomfortable to travel very long distances these days. He's had a lot of surgery and the state of our bumpy roads doesn't make it easy to sit in a car for hours!

Anyway, just wanted to say hi and to wish you & Chris all the luck in the world with her treatment. Enjoy every minute of your holidays together!

Best wishes

Ellie

[Trevor]

Hi Ellie

Good to hear from you. All this is really difficult to deal with, I guess partly because the future is so uncertain. It's so good to hear from others who are going through this nightmare as well. I sometimes feel very alone, even though our son & all the extended family are being so helpful & supportive. At the end of the day, it's just me (you) that has to cope with the gradual loss of someone we love.

I'm basically terrified of the "end phase" because I struggle to cope when Chris suffers even minor stuff like being sick - it is just so hard to see the one you love become helpless! Sounds a bit like self pity, but I don't mean it that way.

I hope things go ok for you & please keep in touch. It's a bit late tonight so the old brain is bit banjaxed by the red wine.

Trevor

[clair2305]

Hi Trevor, Chris, Nicki and Ellie

I'm new to this forum as well.

My husband, aged 41 has been diagnosed with advanced pancreatic cancer which has spread to the liver. He had been going to the GP since April with all the symptoms of PC and GP kept shrugging him off, this shrugging off got worse when he was diagnosed as Type 1 Diabetic. The GP kept telling him his back pain and constipation (only two of his symptoms as well as diabetes and severe weight loss another two - 3st in 3 mths!) were to do with diabetes even though diabetes nurses kept saying it wasn't. He even said on 17th June that only a CT scan would show what was wrong but wouldn't refer for one and when an A&E nurse rang GP the next day (cos the pain was unbearable) he referred somewhere else instead for the scan.

My husband then started to develop what we now know is foot drop in his right leg on 8th July, by weekend of 11th July he felt he was tripping up and so we made another GP appointment for 14th July......wot a breath of fresh air, our GP was on holiday and the locum was extremely thorough, we were in there for about ½ hour, then told to come back an hour later, when he did some more tests, reflexes etc, read through hubby's notes and asked us wot had been going on. He rang our local hospital, xx in XX , wrote a letter and told us to go there straight away with the closing line of "take a bag, expect to be kept in".

My husband, Steven but known to family and friends since a child as Blue (finding it hard calling him Steven cos I always call him Blue, I've told all the medical professionals this as I slip between Steven and Blue wen we are at medical appts, etc) was admitted to hospital and had a CT scan on 17th July which confirmed a mass in the pancreas and spread to the liver with the largest in the liver being 2.5 cm......as you can imagine my world just fell apart and I'm getting tearful wrting this.

WHY WHY WHY didn't our GP (not our GP anymore) refer for a CT scan on 17th June???

Blue started GemCap chemo on 17th August, this Monday was week 2, he had a day of diarhhoea on Friday, well one bout really and he took the tablets as told to and it stopped.

The hospital last week prescribed steroids to stimulate his appetite and on Friday they kicked in…..he wanted crumpets, but alas, it’s typical isn’t it, he’d almost finished them and broke his tooth!!! The hospital prescribed some cover antibiotics and said not to visit a dentist this week (because of low count week) and next week only to get an assessment and take it back to them before they agree what he can have done. But hey ho no pain from tooth and he has been eating no end, only lost 4 ozs this week (yes 4 ozs!!!) – let’s try and get it going back the other way now.

Now thanks for listening to my rant….today seems to be my ranting day, now for my questions which I hope you can help me with.

I need to find a solicitor that will take on our case. I know it’s hard to prove negligence in these cases and I’ve rung a couple of solicitors who are reluctant, we know it will not be a walk in the park, but then our life now isn’t a walk in the park….we’ve gone from being a family (hubby has 17 yr old son that lives with us) who had a good income and relatively good standard of living to well, I’m sure you all know….and I know it grates on Blue to be dependent on me.

We need a solicitor who will take on Blue’s case and my thoughts are if the GP had taken our concerns seriously and had referred for a CT on 17th June or to be honest taken us seriously and referred earlier say May, a month or more even before the one on 17th July, maybe it wouldn’t have spread to the liver and he would then have been suitable for surgery. So any help would be appreciated. Blue’s sister, Lisa, died in 2000 of cervical cancer aged 34 and that was a clinical negligence case (health authority admitted liability)….as I’m not a mum I can’t imagine how my mother in-law is feeling, both her children with cancer due to the negligence of the medical profession!!! Lisa’s solicitor is not suitable as he is not in our area.

Next, I’d just like to hear from others, a bit of support really. I’ve heard all the statistics, only 3% alive in 5 years and that scares me but Blue is not a statistic and I want him to have a long and happy life. We’ve been together 8½ years and married for 18 months, no children between us yet (we didn’t think we were in a rush and now that may not happen!!)

So please support me, let’s support each other, sometimes I find it hard t get support from our family, cos we’re all going thru the same thing

….and I think I’ve waffled on enough, but this has been the edited version as well and it’s nice to let it all out.

Clair

[Trevor]

Hi Clair

I was so upset to hear your story of Blue, I cannot imagine how angry you must be. Chris had no symptons at all (slight tummy discomfort over Xmas last yer) until she collapsed in acute pain one day. After that, her treatment by GP , hospital & NHS in general has been excellent & caring.

I have 1 contact Cambridge way who I will call & ask about legal contacts. I have none over there.

We all need support in this. As I wrote, we told all our friends & acquaintances all over the world immediately Chris was diagnosed because I knew that I would struggle to cope without their help, and the warm glow we both get from all the letters,calls & emails we receive from them in response to my monthly updates has been vital in keeping Chris positive. Chris has always participated in "Race For Life" but was unable to this year, so her sister took her place. I emailed my contact list, & many of my business contacts,with details of Linda's run and the response was unbelievable - she ended up raising £1,500 for Cancer Research! That made us both realise how many people were on our side - and this is crucial for those inevitable dark moments.

We have found that our monthly targets of things to look forward to - holidays, visits, trips etc - are vital in helping maintain the positive attitude that is so important in fighting the cancer. In our case we are well aware Chris is on a "ticking clock" but our short-term aims are (1) to beat the 9 month average and (2) get Chris to her 60th birthday at Christmas. After that, we'll set some for 2010!

Please mail me whenever you need a helping hand of support, if my pal in Cambridge has any legal ideas I'll let you know. I do know litigation lawyers in Worcester & Banbury if you would like their details. Let me know.

Trevor

[Ellie]

Dear Clair

I was so sorry to read your story - it's one thing to find out your loved one has PC, but to feel it could have been dealt with so much earlier must be 1000 times worse. Those two words "if only" must keep going round in your head.

It is well known that PC is hard to diagnose - if you read all the stories on here, everyone was diagnosed with different symptoms, but it does sound as if your GP should have done that CT scan when he first mentioned it. I can't advise you on that side of things, but I have gone through so much with my hubbie since last May and fully understand what you are going through now. I found this forum a huge support at times and it does help, sometimes, to know that others on here understand and can help in different ways, from their own experience.

I don't know how I have kept going, but I was so determined to fight every inch of the way for my husband and I still am. You have to take one day at a time and stay as strong and positive as you can.

You have my thoughts and best wishes.

Love

Ellie

x

[clair2305]

Dear All

thanks for your replies, it is a great support to me.

If you don't mind, can you share your experiences, as a newbie this is all strange ground for us. Each week when we go to the hospital, myself and the doctor go through the "i'll ask my questions, then you can ask yours" and he is good, but maybe some of you know things I don't:-

Does anyone know what mean cell haemaglobin means?

I keep seeing on here about CA counts? What are these? They seem to be the way to tell the success of treatment. And when/how are these tested?

Has anyone else experienced foot drop, also know as neuroplasty? Blue developed this in his right leg on 8th July, but spread to his left on 11th July and the lower parts of his legs feel numb, although in the right it seems to be getting higher, just past the knee. It takes a great deal of effort for him to walk and anything on a slope up/down, even a slight gradient is even worse and I worry about the effect on his joints (knee/hip) because of the effort to lift his legs. Its seems from the professionals that this is another sign of PC and happens in PC patients but they are not sure why, if it will get better and so on, so any info would help. His splints have just arrived and he's been over the shop to get a paper, yippee. I reckon I will have to get dressed, to take him to the bookies!!

Anyone using Manuka Honey? We've been given UMF10+ but really there's so much info on the net it all gets confusing, so really what are the benefits of Blue having it?

We are so early on and I don't know if we are getting information overload in the right areas.

Thanks again.

Clair

[clair2305]

Hiya

oops, can I add, has anyone had a nerve block? Blue is having one next week by endoscopy

Also, Blue been referred to Genetics Dept, because of sister's death and his mum just having finished radiotherapy for breast cancer.....so practically gotta do a family tree today.

Thanks a million.

Clair