New - feeling scared

[suemc]

Hi, we returned from a lovely holiday in Nov 17, believing yet again my husband had a great colour, after a day or two of being home my children mentioned that the colour was yellow, in the natural daylight yes it was. This started to become more apparent over the next couple of days, that's when my mind went into over drive, actually on holiday my husbands appetite was very minimal, he complained of indigestion and belly ache, he would no admit things were not right in fact, things started to add up. over the last couple of years there had been lots of little things, back ache, tummy upset, indigestion which all had been ignored. now he was very yellow, I booked an emergency ~GP appointment, who was extremely professional in the way I could see the concern but he did not mention anything sinister. As this was late Friday we was advised to get bloods done Monday. Knowing that my husband does not like a fuss but my children and I was concerned my son took him to A & E on the Monday instead, from there two scans, and a stent inserted Weds I feel my life has changed so much, the consultant and oncology nurse have informed us that the scans showed there are several tumours on the pancreas and other tumours on other organs, although he is due a biopsy this Weds, the consultant and oncology nurse words are "they are not thinking it is not cancer" I know this is not good news. I believe my husband has not fully taken this info on board yet. I have so much going round my head.

1, my stress is up and down like a yo-yo, I'm currently signed off for two weeks in my second week, due to company policy, I'm better off taking more sickness as I get paid, unfortunately I do not get paid for compassionate leave. I feel a fraud taking time off, I rarely take sick.

2, my husband does not get paid only statutory sick so financially this is not helping, we are ok and can manage but not to the lifestyle we are used to.

3, I want people to be honest with me, we still don't know if this is terminal,(which I believe it is) what quality time do we have left

4, Should my husband return to work or will he be able to, as his job if physical

5,What have others said or done about employment

Sorry so many questions my husband is 61 and I am 56. Just don't know what to do.

Sue

[Didge]

Hi Sue

I am sorry you find yourself in this position. Pancreatic cancer is not good as you probably already know but some tumours are less aggressive than others and you won’t really know what you are dealing with until you get the biopsy results. I know it’s hard but you need to take one step at a time otherwise it’s overwhelming. Let us know how you get on x

[Justamo]

Hello Sue.

Yes, when it first dawns on you that you are dealing with this ghastly illness it is quite overwhelming, and you can think of so many problems that you don't know which is the worst and which one to deal with first.

Wait until you have the biopsy results. Then you will know what you are dealing with. If you don't understand anything that the doctor says to you, ask him to explain it there and then. If you still don't understand phone the nurses on the helpline - they will help you.

Contact your local MacMillan Nurses. They have a benefits advisor who will claim Attendance Allowance for you once the diagnosis is confirmed. I think it's about £83 a week at the higher rate. It is paid regardless of any other income you may have and does not affect your entitlement to other benefits.

Don't beat yourself up for taking sick pay at the moment. And what on earth is fraudulent about being in such distress that you are incapable of working anyway ? So stop feeling like a fraud.

These days medical staff are, on the whole, completely honest with the patient and his family. It's no longer a case of keeping things a secret and talking in code. I remember when people lowered their voices and talked about the "Big C". It's not like that anymore, and medics are obliged to tell you what's happening, and they will. And nobody can possibly tell you how much quality time you have left.

So, once you have the biopsy results, see what's offered in the way of treatment, and stay in touch with this forum. Be sure to tell us how you get on because we'll all be watching out for you.

For various reasons the forum has been a bit quiet for a day or two Sue, but you will get lots of support once we all get back into gear again.

Kind thoughts

Mo

[suemc]

TY for words of support/advice, I never knew how lonely you can feel, despite having people. xx

[Didge]

Hi Sue. I think that is why the forum is so appreciated. We’ve all been there and you can say things to us that you may feel unable to say to those close to you for fear of upsetting them etc. Plus you will find a lot of useful tips and the nurses are on the end of a phone too when you need to hear a friendly expert voice xx

[Veema]

Hi Sue...sorry you find yourself in this situation, it's awful and very scary for you all.

Firstly, on the monetary front, as soon as your husband has a diagnosis of pancreatic cancer, you will automatically be entitled to either PIP (if he's younger than 65) or attendance allowance (over 65). I'm pretty sure it's at the highest rate which should also entitle you to mobility. This is not a means tested benefit. There may also be other benefits you are entitled to. If you get a Macmillan nurse, they should be able to help you apply for it.

Secondly, if it is found that the primary cancer is pancreatic, the spread to other organs would make it stage four which is considered palliative care only. Although this is the case, treatments such a chemotherapy (and in some case radiotherapy) may still be offered to prolong life and there are many that do still have a good quality of life whilst having these treatments. My husband had one of the toughest chemotherapy treatments for pancreatic cancer and it hardly affected him at all.

Keep us updated...the forum does have periods where it seems there's no one about, but most of us come on regularly and read even if we don't post and if you are in need, someone will respond. The nurses are also renowned for being a valuable resource, so use that too.

Once you've got over the initial shock, you'll find you move into 'getting on with it' mode, where you stand tall, stick your chin out and deal with whatever this crappy disease throws at you.

Much love

Vx

[AndAde]

Hi Sue,

Sorry you find yourself in this position. It's horrible. You are currently in shock, you will be for a while..... take the time off to be with your family.

If the biopsy isn't good news, as the ladies have said, there are treatments to prolong life.

Take a breath, get the PIP sorted, and look after yourself.

Thinking of you,

Andrea

[Marmalade]

I am so sorry you have found yourself here, everyone on here knows exactly how you feel so you never need apologise for feeling hurt or angry or despondent.

As other have said there is financial help available almost immediately you get the diagnosis. In our case the hospital sent the for DS1500 directly to MacMillan Finance but your GP can also issue this form. This benefit is not means tested. You can also claim a smaller allowance for caring for your husband of around £65 per week if you are under 65. I know it may feel wrong to be thinking about money but money worries only add to stress so its one of the things you can do to make a difference at the moment.

Another thing you can do is get the GP to refer you to your local palliative care team who can help you with lots of things including managing symptoms including those from chemo and other treatments, they are experts in this field. They either run caring and coping courses themselves or can find one for you. These are extremely helpful as they deal with managing diet, pain, sleep, exhaustion and other things which will come up on your journey. It gives you a bit more confidence and understanding. They also do groups for the patient about things they can do for themselves and they provide experienced listening ears. Patients can often speak more openly to strangers about how they feel as they don't want to upset friends and family.

I hope you will find the forum a supportive place. There are many stories you can follow where patients have had a variety of treatments. Mine is a thread dealing with no treatment "our journey without chemo". these threads can help you understand the huge variety of manifestations, treatments and pathways.

I send you best wishes and prayers,

Marmalade x

[Marmalade]

Dear Sue,

How are things going? Please don't be shy about posting.

Marmalade x