Pancreatic Cancer

[mary]

I found this site last week when checking the net for information on pancreatic cancer and have only now plucked up the courage to write. My 64 year old husband who has always been very healthy and active, never smoked and doesn't really drink much, was admitted to hospital on 5th February with a suspected DVT. He was complaining of pain in his calf and ribs for about a week and we put it down to muscle strain. To cut a long story short when they performed a Doppler scan and found no clot they decided to do do a lung scan, not only did they find a clot in his lung but also saw some shadowing on his liver. On the 11th February they did a CT of his abdomen and pancreas and that evening we were given the devastating news that he had pancreatic cancer with secondary cancer in his liver. I feel as though my whole world has fallen apart.

He was discharged from the hospital right after we were given the news ( we were shown how to inject Fragmin) and has been referred to a pancreatic specialist at another hospital, he goes on the 23rd February. We have not been given any information about the DVT and he has started to have pain in the opposite leg to where it started, I just don't know what to do. He doesn't want to go back into hospital yet.

How can anyone expect to give news like this and then just forget about you for almost 2 weeks? So sorry for rambling but just had to get it off my chest, our children are asking me what is going to happen and I know I need to be strong for them and their dad but all I want to do is scream about how unfair life is.

[Nardobd]

Oh Mary...my heart goes out to you. I know just what a shock it is to suddenly find out that your previously health husband is seriously ill. My husband, Ted, was diagnosed very suddenly in 2009 and it completely turned our world upside down.

I suspect that your husband was referred to another hospital because your local hospital isn't a regional centre: Studies show patients benefit from being treated in high-volume, expert centres. You can find a list of regional centres on the PCUK website at www.pancreaticcancer.org.uk/regional_centres.htm.

Two weeks seems like a lifetime under these circumstances, I know, but you're nearly there now. The important thing now is to make sure there are no more unnecessary delays. The way to do this is to be politely insistent - if they tell you your husband should start chemo in two weeks say "That's about a month after diagnosis, we'd rather he started now please". If they tell you they have to have more scans, ask when and push for earlier if it's reasonable to. If they tell you there's a meeting on, say, Friday, when your husband's case will be discussed ask what time on Friday they will be ringing to tell you the outcome. You can be insistent and assertive without being aggressive or rude.

Make a list of questions you want to ask the consultant. I guarantee you will forget something if you don't! Share the list with your children if they're old enough to understand and ask whether there's anything else they want to know.

I know that you feel you have to be strong but when Ted was diagnosed I cried in his arms! Totally the wrong way round but it actually helped him to be even more determined that he was going to fight with all his strength. You're human too and remember that your children will want to support you as well as taking comfort from you. It's only by leaning on each other that you'll get through.

Write as much as you need - we're all here to help where we can.

Love

Nicki x

[Ellie]

Dear Mary

So sorry to hear what's happened to your husband. I can certainly understand your total shock and horror at his diagnosis. It's not something you are going to come to terms with in just a few days, or even weeks, and the worst part will be waiting these next few days to find out more from the pancreatic specialist. Once you have all the facts, you may feel a bit more in control, knowing what the next steps will be etc. My husband had the whipple op, then pneumonia, then a pulmonary embolism, his cancer spread to his liver 2 years ago and he now has a DVT and uses Fragmin, so I can fully empathise with what you are going through. You whole world is turned upside down but try and take things one day at a time if you can. There is so much you can learn online - but only use the good websites like this one, Macmillan or Cancer Research for example.

Use this site to talk to others and get things out of your system - it does help to know others have been, or are going through the same thing. You can learn things and compare notes, but most of all, you will get support and understanding from everyone.

My thoughts are with you. Let us know how you get on.

Best wishes

Ellie

x

[mary]

Hi Nikki and Ellie

Thank you so much for your replies,It really does help to know that there are others out there who know how I am feeling right now. One site I checked said that when Pancreatic Cancer has spread to areas such as the liver then the outlook is really not good, but reading some of the posts on this site has made me realise that everyone is different and things don't have to be so bad. Stans legs have been really painful and I was so worried about blood clots but we saw our GP today and he has explained to us that the pain is probably being caused by the cancer and the chance of blood colts forming while Stan is on Fragmin are very slim. He also explained that as Stans cancer was found purely by accident there is a possibility that it is still in the early stages and because he is normally fit and well that there may be a chance of surgery, he even suggested some of the questions that we might want to ask the specialist on Wednesday. Please God the prognosis is not as bad as I dread.

My children are all adults now with families of their own but it doesn't stop them from thinking that mum knows everything and how to put things right, theyr'e not used to dad being ill.

Thank you both again, I will certainly stay on this site, your support mens so much to me.

Mary

xx

[PCUK Nurse Jeni]

Hi Mary,

My name is Jeni and I work for PCUK. I can be contacted at support@pancreaticcancer.org.uk

I have worked in oncology for 11 years -and have looked after many pancreatic cancer patients and their families.

I am sorry to hear about Stan's diagnosis, and the way it was found.

I would be happy to answer any questions you may have , if you would like to email me.

Unfortunately, just to clarify the operation possibility, once the cancer has spread outside of the pancreas, an operation would not be possible.This is because the nature of the operation is so major, and it is only done with curative intent. The fact that the cancer has spread makes this unlikely, and it is dangerous to perform an operation for fear of causing more rapid spread.

Chemotherapy, on the other hand, will treat the cancer wherever it is in the body.

Please do contact me if I can help any further.

Kind regards,

Jeni.