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Months rather than years!


Kaye 19
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I now know the total extent of my diagnosis.

I have inoperable pancreatic cancer and yesterday I was told I have secondary cancer in my spine!

I start chemo next week with folfirinox.

I am a young 63 year old , married and look after my disabled son aged 38.

My eldest son came with me and my husband and asked how much time do I have left and was told months rather than years!

I think I am all cried out and I try to put on a brave face but I am absolutely terrified!!

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Dear Kaye, what can anyone say to you in the face of such devastating news? All of us here have heard similar news, whether as the patient or the family member/friend. We understand.


You have a good family unit it seems, although with its challenges, from what you say, but I am sure they will be with you every step of the way in the months and hopefully years ahead.


There are plenty who have been given similar prognosis' who are still with us. The truth is no-one knows how long each of us has on this earth. I hope you can tolerate the treatment well and make some good progress with it. Be assured all at the pcuk forum will help you along the way.


I'm sending you a virtual hug. Keep us up to date with your treatments and how its going.


Julia x

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Dear Kaye, I am so sorry to hear your news. My husband James, was 70 in March 2014, when he was diagnosed with terminal PC, with spread to his lungs and adrenal gland and given 12-26 weeks, probably nearer 12 weeks. Well, he is still here 67 weeks and 2 days later and despite all the warning, quite well. At the moment he is building a raised decking area and just carries on. We have been holiday, including outside Europe twice and he does pretty much what he did before. This April I had to get a prognosis from his Oncologist for holiday insurance was was told under 6 months, but they will always have to say that as he is stage 4, even though his adrenal gland is now clear and he no longer a visible tumour in his pancreas. This is because they can only base their judgement on empirical evidence, IE what other patients have already experienced and as the drugs get better, James is on ambraxane and Gemcitabin, the average length of prognosis will go up and this is only ever an average, some people will do much better.


I'm really sorry that this wicked cruel disease has happened to someone else and especially with your caring responsibilities and know there are no words to ease you and your families' pain and distress, but sincerely wish you a much, much longer than expected life. Fiona X

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Kaye, as others have said, those of us who have been kicking around on this site for a while know that the prognosis often bears no resemblance to the reality. Here's hoping that the folfirinox does its stuff - it can work wonders! x

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Thankyou all for those encouraging words.

Everyone in the medical profession has been so negative...I feel like they have just given up on me!

My family have been wonderful and full of support. My sister and brother in law are coming home from Canada to spur me on.

They themselves were in an horrific car accident 2 years ago and I flew out to help them in their recovery, I hope they can help me in my recovery.

I am scared...my husband is scared..we don't know how to how things will turn out...but most of all I am scared for my disabled son. I thought I would always be here for him!

So...onwards and upwards....I start the big fight on Tuesday ..and with your encouragement I will conquer this!

Thankyou for your positivity...I now feel there is some hope! x

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My dearest Kaye .So sorry to hear your news ,my hubby was diagnosed in March.Not a good outlook inoperable but he is coping well and trying to carry on as normal,I was scared and angry ,but now realise I have to be strong and not let this get in our way .we want to do so many things and I'm sure we will.please stay strong and try to carry on big hugs x sheena

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Kaye, I know how you feel - my husband was diagnosed in March with inoperable PC and it was something we never expected. We had been living the dream and it all came to a sudden end. At first I was angry that symptoms had been missed for so long but decided there was no point in dwelling on that as it would achieve nothing and now I just concentrate and doing the best I can and trying to enjoy every minute, every smile and just being together for as long as we can. We've been married for 38 years and you could say we were 'joined at the hip' as we do everything together. It's an absolutely devastating thing to hear but please try to stay strong - I know it's difficult and I often cry buckets when I'm on my own, but as many on here can confirm, the doctors can get it wrong and there are success stories to prove it. My thoughts are with you and your family - take care.


Sue

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Kate, I just wanted to offer some reassurance as I know you are very fearful about your son. I do some part time work with adults with learning disabilities, most of whom have gone into sheltered accommodation with appropriate care packages, when their parent carers have either died or no longer able to look after them. They all seem to do well, with increases social life and learn new skills. I do hope you can reassure yourself that your son will be ok whatever happens. You do not need this worry to be hanging over you at this time x

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  • 4 months later...

Well it's now December and I'm still here!

The chemo didn't work and I was told the cancer had spread to liver etc.

I have sorted a lot of stuff out and my wonderful sister is here from Canada to support me...I know she will have to go back at the end of the month....and I feel that if I am still here then that will be when I give in......maybe!

I'm scared...I'm not in too much pain but I have this Sister Mary Joseph nodule which is really bothersome!

Has anyone heard of it!!! It's very rare ...basically it's a tumour behind the belly button but mine is coming through!!

No one knows how to dress it!!!

Any advice would be well received Thankyou .

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Hi Kaye,

Just wanted to reply, never heard of that name, but a friend of mine had a relation with something that sounds very similar, he too had problems with dressing the wound, but he managed to stay well for a long time.

Sorry no advise to offer, why not ring the nurses on here and see if they can give you any advice they are amazing, and very approachable.

I am glad the pain is not too bad and sorry that your sister will have to go home again soon, and that you are feeling worried, sending you a cyber ((hug)) take care sandrax

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PCUK Nurse Jeni

Hi Kaye,


Sorry to hear that the SMJ nodule is causing bother for you.


Can I ask, what are they dressing it with at the moment? If anything?

Is it dry or is there an exudate from it? Is it covered over or left exposed to the air? Who is looking after it right now - oncology or district nurses? How big is it, do you know, roughly?



You are welcome to email us on support@pancreaticcancer.org.uk if you would prefer to.


Kind regards,

Jeni.

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Sorry to hear the news but hope you find comfort in having your sister with you. Also Rob lived for over a year after liver tumours were diagnosed so it is still unpredictable in its path. Sending you love x

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Thankyou for your replies.

It's being dressed at the moment by district nurses twice a week.

A dry silicone plaster is placed over an anti fungal gel??

It has been leaking lately....but the smell is better. When it's dry it looks like a jelly tot has been crammed in there!!

The GP out today to look at a very swollen stomach.....so I am now on oramorph for 48 hours or til the pain subsides...I have taken 6 doses so far but the pain is no different!!!

It's very difficult to draw breath and get comfortable.

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Do you have ascites which could be drained?it might help with the pain. Do you have the palliative care team involved? They suggested that Rob had a,scan at one point in case he needed a stent so it is important to still address symptoms where possible. Xx

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PCUK Nurse Jeni

Hi Kaye,


Thanks Didge, yes I agree with Didge. Symptoms must always be managed to the best ability, and sometimes this requires scanning to see what is going on. It sounds like you might have ascites, which is fluid in the abdominal cavity, and this is quite known to cause discomfort, especially when you are trying to lie down at night. We find a lot of folk say its very difficult to find a comfortable position. it also causes breathlessness - however, oramorph should be good to help this.


Did the gp listen to your abdomen? Did he say that there was fluid there? Did he get you to lie on either side and "tap" your stomach with his fingers, to listen to the difference in sounds when you were lying on a specific side? As this can tell a person without having a scan, if there is fluid there or not, but obviously, you would also need a scan. So, you might need this. Sometimes, water tablets can help a little with the fluid, but often, you have to have it drained off by doing a special procedure.


In terms of the SMJ nodule, we used to use Silver Nitrate pen on such nodules - not saying they were all SMJ nodules, but many of them were, even if they were not called it at the time.


Kind regards,

Jeni.

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