Love of my life, has secondary cancer

[knutsford4]

Hi my name is Martine, I'm new, to the forum, my husband of 28 years (33 together) has been living with bile duct cancer (secondary) since January, he was diagnosed in sept2012, at the age of 46, had Whipples, took all complications, had a further 3 operations, in hospital 8 weeks lost 3 stone, came home with clear margins, told no cancer did preventive chemo for 6 months, was fine on it he ran a leg of the Belfast marathon while on chemo, got all clear in August 2015, life back to normal, he ran the Belfast half marathon in 2 hours in Sept, left the country 4 times, was getting his life together again, ( I need to mention, that he never once was sick in his life even on chemo he was normal, non smoker and non drinker) scanned in January 2014 after feeling a small pain in his back, our lives fell apart, you only have months to live, we were told it wrapped around the main artery that feeds the small intestine, since then he has 8 months of intervenious chemo, is feeling great docs r amazed he's even here today we have been on 2 cruises, and a family trip to USA that they said he would never see, he is very positive, it's such a hideous decease, looking at Allen he is the picture of health,

I don't know if this has helped but he is taking a shot of pure wheatgrass every morning, he did the baking soda thing, and I've started giving him B17,

Thank you for listening to me, I look forward to making new friends on this page, xxx

[J_T]

Hi and welcome.

Well, we all know what a roller coaster this thing is but boy you have had some ups and downs! Allen sounds like a star! To be so well, all through the hideousness of it all, that at least is good and allowed you both to live a relatively normal life, enjoying holidays together, not to mention marathons - wow!

I do hope Allen continues to defy the odds and keeps being well, it would be one in the eye for the barsteward that is pc!

Julia x

[knutsford4]

Thanks Julia

It's great to talk to people who understand what your going through, we r very lucky, even if we r living on borrowed time, we know there's a lot of sadness ahead of us, but we have put a lid on it until it bits us in th butt lol

Xxxx

[nikkis]

Hello and welcome Martine,

As Julia says Allen is defiantly a star. My husband had a whipples and then another op last year and that was bad enough. Being fit to start with and then having a positive attitude defiantly makes a huge difference and Allen clearly demonstrates that. Paul's doctors are also amazed that he is still here, but he has no intention of leaving us yet! I really hope that you continue to have and enjoy many more special days and holidays.

Best wishes,

Nikki

[Cathy]

Hi Martine,

I agree that Allen sounds like he is doing amazingly well. All very good signs.

I hope you are both getting the support you need, even if it feels not necessary at the moment.

This forum is a lovely friendly place to come to for support and to feel that you aren't so alone.

Cathy xx

[knutsford4]

Thanks Cathy and nikkis,

Allen is truly amazing, even though we talk a lot about what's ahead of us, it's nice for me to have this forum for me, I have dipped in and out of different pages here, and I have been saddened and inspired, and I know we r not alone in wat is ahead of us

Hugs and kisses x

[Slewis7313]

Hi Martine, it sounds as if Allen is a real trouper and it is great to hear he is doing so well. His athletic feats are nothing short of amazing! The Specialists will admit they don't have all the answers (Allen seems already to be proof of that!), so long may his current 'good health' continue. I am inoperable, was diagnosed 22 months ago and am likewise still going strong.

This does not change the fact that Pancreatic Cancer is a really crap disease, but we can sometime seem to buck the statistics and live with it for much longer than expected, giving hope to others (as well as ourselves) that this thing will ultimately be beaten.

Regards to Allen and all the best in the future.

Steve

X

[knutsford4]

Thanks slewis,

He is truly going to try his best to prove them wrong, his attitude to his consultant is, " i want to be the person you write your book about ", lol

Sometimes it's hard though to stay strong and have a smile on your face,

[rsk1974]

He sounds amazing and an inspiration, it is such a horrific disease. And it's not easy to be strong. I find reading these forums helps. I still don't understand the disease and it seems different in all. Keep strong and if you need to vent or cry then do it.xx

[knutsford4]

Thanks rsk1974

It's very hard living with cancer, you just live it as best you can, we take everyday and hope is a good one xx

[SusannaUK]

Hello and welcome Martine,

Your husband is a real fighter, an inspiration! You've been through so many things!

This forum is good, here you can chat with people who go through the same or similar things like you. Giving you advice, sharing there experiences. People who can really understand and feel what we are talking about. It is just so great!

I wish you all the best!

Susanna x

[knutsford4]

Hi all, a wee question, Allen got results back from CT they said it was similar to his June on, but he is having real pain in his back, on consultant said that it was connected to his cancer, but his consultant last Tuesday said it sounded like muscler pain, in getting worried cos from no meds Allen is now taking painkillers every 4/6 hours, any advice, Allen takes it in his stride, I'm a basket case x

[Slewis7313]

Hi again Martine. Not sure I can help and it is so frustrating for two healthcare professionals to give conflicting information (you would think they could talk to each other and decide what it is). I assume if the pain is muscular that it would respond to (light) massage or something like Volterone cream.

That's it fom me I'm afraid.......probably not much use, but a thought at least!

Steve

X

[Pete12]

Hi Martine.

Sorry too hear that Allen is having pain. It is very frustrating when you get conflicting information from "professionals" who you would think would be able to help. You didn't say what painkillers Allen is taking but I am recovering from a whipple carried out on 6th June and was prescribed Oxycontin For the pain (I now only take Paracetamol). The Oxycontin was very good for the pain at the time.

It would be a good idea for you to contact one of the specialist nurses on this site who are very helpful and I'm sure they would be able to answer any questions you may have. The contact number is...02035357099.

Pete x

[knutsford4]

Thanks Steve and pete,

He's on paracetamol, the OxyContin he was on when in Hosiptal nearly sent him crazy, he didn't like it give him awful nightmares, I'm hoping it muscler cos if he sits in the bath he gets relief, another app scan came in the post for 3rd November, so results around 24th so we will c then, have to say his medical team on the NHS are amazing and very attentive to him, xx

[sandraW]

Hi Martine, I just wanted to say welcome to the forum, Allen sounds like my husband, Trevor, he has until this week sailed through his treatment, but this week he was quite unwell. I hope the doctors can get Allen's pain sorted, its so scary isn't it, watching our poor husbands got through all this. take care sandrax

[knutsford4]

Hi Sandra,

I know, it breaks my heart to watch him in pain, he keeps telling me it's just uncomfortable but you just know, and from Allen never being sick before to this even though he looks well it's like a waiting time bomb, I'm a basket case, I cry on my own, I then run around cleaning like a mad woman, the smallest thing annoys me, I need to direct my anger at something, I blame god for this, then I ask him to help, your just all over the place with this hateful decease,

Xxxxxxx

[SusannaUK]

Hello Martine,

I hope they will find out the cause of Allen's back pain. It is just so terrible to watch our loved ones like this. When you are there but you cannot help. Awful! It must be hard because you've got two different opinions from consultants and it is so confusing. I really hope that they will find out what's going on.

We are in a similar situation now. My husband has unbearable pain, he is on painkiller anyway 24/7. He also takes paracetamol 4 times a day, plus Oxycodone slow release tablets and Oxynorm liquid. Just to write this down was too much.

Has Allen got pain only at his back? Or abdominal/stomach too? Which part of the back? My husband has pain just around where his kidneys are and in the front around his stomach. He calls it "sandwich pain". It means that the two places are like connected and it's like a tube. He will have CT scan next week. As I understood well Allen already had a CT scan it showed no changes. Ohhh, I really don't know. I think sometimes even the doctors don't know either exactly what causes the pain...

I hope it will be sorted out quickly.

Take care,

Susanna xxx

[knutsford4]

Hi Sandra,

Yea it's like your Trevor,

It's in the same place like a sandwich, he has another scan in November, we started to think is it the B17 giving him the cramps, don't know, I'm going to phone the GP today and get stronger painkillers,

My heart is breaking, but you just have to get on with it, I'm a childminder so at this minute he is asleep in bed and I have 5 kids here with me 3 under 3, two going yo school lol my own children r in universary so I have to keep my head straight, and do the normal every day thing

Thanks Sandra for your ears

I'm away to school talk later xxxxx

[alison vickerman]

Hi martene I havnt been on this site long my 40 year old husband had a tumour removed 4 weeks ago today from his pancreas ot all happened so quickly we are waiting for hit results any day now to find out if it was cancerous or not hes recovering well ots such a terrible disease I wish you and your family well from alison

[knutsford4]

Hi Alison, I hope and pray your husband gets clear results, it's a long time to wait for results, my Allens pancreas was clear, he had cancer of the bile duct, but I think it all comes under the same umbrella, his was found very early and quick he was admitted into hospital on 16th September 2012 diagnosed on 25th, and had a full whipples operation on 17th October, I think it must depend on where you live, on how and quick you get treated, we live in Belfast and only 1mile from the hospital, and its the only one that did this type of surgery in the country,

I hope you get good news very soon (4weeks is to long to wait)

[Ruthos1]

Hi everyone,

I last posted on here last November when my mum was getting inconclusive biopsy results .

After a lot of ups and downs and told she did have cancer then didn't and now does , took a lot for us to handle.

She is such a courageous lady and an inspiration.

I live in Corfu and travel backwards and forwards.

Despite having very little appetite, the pain is under control with slow release morphine and she enjoys her life, despite being told in February that she had weeks to live.

Who knows how quickly 'things ' will progress but for the time being we are making the most of our time together.

Lots of love , positive energy to all of you and your loved ones.

Ruth

[knutsford4]

Hi everyone, well allen has been I really bad pain for a while, pain killers were lasting about 2 hours, he then swelled up and his hands broke out in itchy blisters, got him to the GP who said it was the codeine, I had my self convinced there was more turmors growing, GP had his blood results from oncologists and said they were great, leaving me totally confused, so what is causing the pain, they didn't know, I ask the chemist for his strongest painkiller without paracetamol in it, he give me volterol, 1every 4-6 hours, Allen started them on Friday it's now Sunday and he is nearly pain free as long as he takes the meds, so praying that it is just muscular, scan again on 3 nov will know more around 24th

[J_T]

Hi, sorry to hear Allen has been in pain. You should be getting painkillers from your GP! Have you got a McMillan nurse? They are fab at controlling the pain and making sure everything you are entitled or need is in place.

Julia x

[knutsford4]

Hi Julie, no we don't have a Macmillian nurse, even though Allen is terminal, he looks and acts very healthy, we have his back pain sorted looks like it was inflammatory, so he's on voltorle, it's scary, but we r living life to the full, just booked Newyork and a Caribbean cruise for Friday last minute, we r kicking cancers ass lolol