coping - or just

[liz99]

I am writing this in the hope that putting it 'down on paper' (or to speak) will help me deal with the emotions I am currently facing.

I am sure many of you will understand the difficult emotions of living with someone with pancreatic cancer.

A short summary -

my husband (aged 44) was diagnosed in April this year with pancreatic cancer.

We were informed it was inoperable due to vein involvement. We however discovered a surgery in Germany that would operate, we went for the operation in May - and discovered the cancer had spread to liver - so operation did not happen.

During all this time we were awaiting oncology appointment here in Uk.

We then waited 8 weeks for a chance to commence treatment.

My husband was in pain for much of this period, until we discovered macmillan who came out and sorted out his pain relief.

He has had 8 sessions of folfirinox - which he has found exhausting, but it has shrunk the tumour by 1 com - so now down to 7cm.

Although this was great news he was soon in severe pain again - but this time in lower abdomen, he was admitted to hospital for a week. They diagnosed diverticulitis and sent him home. The oncology team revisited his scan and discovered it was not diverticulitis, more tests and he has now been diagnosed with ischemic colitis (the tumour is pressing on vein and therefore reducing oxygen to colon, so in effect it is dying) it also has ulcers.

The hospital have said there is nothing they can do - due to position of tumour and veins, and we just have to wait for it to deteriorate and they will likely lead to removal of colon, and a colostomy bag.

He remains in pain, as his pain relief does not seem to work on reducing this - I will again contact macmillan for advise.

I am trying to remain positive for him but finding it difficult.

I go to work (I work full time), financially we would not manage without me working. I feel guilty working and leaving him alone all day, I do not go out apart from this - know I should at times for some time to myself but feel cannot leave him alone any longer (and also do not want to as want to spend as much time with him as I can). His family all live in france and friends all work. (although parents are coming over for a month in 2 weeks time which should help).

He is exhausted all the time, although we did manage a 20 minute walk this weekend. This has made me very sad - when it should make me feel good, as he has not managed this for weeks, but we used to cycle for 40 miles on a weekend - it just made me realise today how tired he is.

This is such a horrible illness and I feel we constantly have to chase for support at our local hospital.

I am sorry to have this moan - but feel quite low today.

[nikkis]

Hi Liz,

Don't think I can say anything that will make you feel any better, but you are not alone. It is so frustrating that you have had such a fight for everything and your husband has suffered so much.

My husband is on a diamorphine infusion for his pain, that the district nurses change everyday. We have seen a brilliant pain specialist who thought that because of his problem with his stomach and bowels he wouldn't be able to absorb any painkillers he took by mouth properly, and as a result they wouldn't be effective. He also has tablets that dissolve under the tongue as a breakthrough painkillers, so therefore go straight into his system. These might be worth asking about for your husband, if he has similar issues? Paul has been in pain for several months but these seem to be working.

Also I don't know what your circumstances are but would you be able to get your GP to sign you of sick from work, as it sounds like you are very stressed and would therefore have grounds to be off? Whatever you do, don't feel guilty, it sounds like you are doing a fab job. It's just so hard that in these days of modern medicine they can't fix things, isn't it, and we just have to watch those we love suffer?

Thinking of you both,

Nikki

[kwaitang]

Sorry that you and your husband are having to fight for what should come easily and quickly. We too spent many months waiting for treatment. Waiting for appointments to come, waiting in hospitals for countless hours, waiting for results to come through. Once we had been accepted for clinical trials things seemed to pick up and get a bit better. It is so sad that there seems to be no urgency to treat and see people that have such a limited time to live. It is so unfair. I just hope that things get better for you with good treatment. I am at my worst and seem to sink into a depression when, like you, I remember the strong and healthy husband of a few months ago, who now seems a different person when he has bad days. But he does have good days now and that lifts my spirits, I can put out of my mind for a while that he is ill and enjoy life again (yes I am probably in denial) but i survive by doing this. I hope you have the good times that you both deserve. Good wishes to you. Arlene.

[belgrade]

Hi there,

I am so sorry to hear about how this awful disease is affecting you and your families. It is very difficult when those around you are getting on with their lives, having the luxury of being able to make plans, when you feel that time is standing still and all you want is for your loved one to be as they were before. My advice would be to make the most of every day, enjoy the good days and ride out the bad with the hope that tomorrow might be better. This condition is very unpredictable, my husband, although only receiving palliative care, was told he perhaps had a few months left. Unfortunately, at the start of September, he developed an infection, deteriorated rapidly and passed away just over a week later.

Keep on going, you will find the strength.

Hilary

[liz99]

Thank you all for your replies and kind words, although comforting that others understand it is horrible to think that others have to go through this.

I am really sorry to hear about your husband Hilary, makes me realise I should focus on the good days as time together is so precious.

I only started my new job in April - just after husband was diagnosed, so sick pay is limited, work have been great allowing me time for all the hospital appointments.

Today has been a fairly good day - although we were told that his treatment is to stop, we decided to not let this get us down and enjoy the fact his pain is minimal today.

It is amazing how much pleasure you can get from the little things in life.

Wishing you all well and as others have said stay strong.

[nikkis]

Really pleased to hear the pain is minimal and that work have been supportive. We have had a good couple of days, and it makes such a difference doesn't it?

Nikki

[EmmaR]

Dear Liz just read your post and I was feeling so down myself this morning sitting watching the rain come down hubby sleeping in the chair after another disturbed night ! We are still waiting for biopsy on his liver result with the hope of starting chemo as you say it's waiting waiting all the time and your hubby is so young mine is 71 with mass on pancreas body and tail with spread to liver and lung what a terrible terrible disease I feel my hubby would sacrifice his appointments so that your's could have his earlier as we have had more time together but as we all know its life and we cannot predict the outcome I am praying for you both so stay strong at this moment that is hard to do and I could cry my eyes out along with all the other carers but hey that would not help .

Love and kind regards to everyone .x

[karen17]

Oh Liz It made me feel so sad reading your post. My husband was also young at 51 and he faced this disease with such courage, fighting for exactly a year until he developed an infection like Hilary's husband and passed away in weeks. Prior to the infection he was still working and life was as normal.

I think the most important thing is to get on top of the pain relief and then to take each day as it comes and enjoy every minute together. I worry about you still working and would urge you to ask your Gp to write you off sick. I did not take any time off until the last 3 weeks of his life but would have to say that I was not performing well at work for months before. I was just lucky that my colleagues were so supportive. Look into benefits too such as DLA and carers allowance which may help you.

Sending a big hug to you

Karen xxx

[liz99]

Thank you for responses.

Karen - really sorry to hear about your hubby, how long ago was this? Hope you are coping.

I have looked into benefits - but I earn too much to receive any - I am in a catch 22 situation. I am going to look at if I can reduce my hours at work though. We also unfortunately just before this illness started doing the house up - new bathroom conservatory etc so have additional debts to pay off.

Emma - I hope that you get your results through soon and your hubby can start treatment, my hubby would not have wanted to take anyones 'place' whatever the age. Indeed he often says that the older people should be treated first as they are not as strong to deal with symptoms (pain etc).

This is such a horrible illness - I am always amazed by how strong people are and what they have gone through and managed to come out the other end.

[kwaitang]

It is so sad reading about so many others going through what I am going through. I am also amazed at some people's positivity - I wish it would rub off on me. I suppose when everyone finds out about this disease it seems like you're the only ones going through the pain and anguish. But there are so many others suffering. Life seems to come to a standstill. On the plus side, my Keith has been well enough to be out cutting the grass for the last 2 days. It has seemed almost normal. I hope that everyone else has some good and normal days. Best wishes. Arlene.

[cestrian]

Like Keith I've been feeling amazingly well and out mowing the lawns, walking dogs and grandchild and generally living again so truly grateful. One of the most important factors is the support given to fellow sufferers by their fantastic pfamilies families,friends and in a majority of cases health care professionals. I qualify the latter as my heart goes out to all who lose out in the "post code lottery" and have to battle to obtain information or treatment. I do sometimes feel guilty that I couldn't ask for better care when others are struggling. I do hope that the treatment Liz99' s husband is receiving will do the trick for him and that he will come through any adverse side effects very soon. I'm an old codger of 69 so feel so sorry for those diagnosed at a much younger age when children are still dependent and like Liz99 partners and the patients themselves have work and financial burdens to add to their concerns. It must make an already difficult situation almost unbearable particularly when there is no one to share the load. This forum can be a source of inspiration and encouragement; even though it contains more than its fair share of heart ache and heart break the strength and fighting spirit of each and every one of us shines through like a beacon.

Love and Peace

Mike

[Jwilson]

Liz, hi. We knew nothing at all about benefits but our GP told us we should fill in a DLA form, that's disability living allowance and that we would definitely get it. Your GP fills in something called a DS 1500 and sends it off to back up the form which you fill out. It's not means tested as far as I recall. All we filled in was the total truth about any help that I give Bill day to day. My view is that I paid taxes for 36 years and even if it helps with petrol for hospital appointments, heating costs, anything at all you may as well have it. It's £134.40 a week. Your diagnosis of PC ensures that you get it.

I don't normally post about money but there again, advice is good. I am going onto half pay this month and not looking forward to that. Mind you I am only spending money in the supermarket as Bill is not fit to go out.

Anyone else got seriously swollen lower legs,ankles and feet? Bills are terrible even with compression socks.

Oh the GP signed me off work several months ago. I couldn't work now at all as Bill is very confused about his drugs and his insulin. I just look after all that stuff so as not to cause any more anxiety. I watch the clock and make sure its all taken on time

[nikkis]

Our Macmillan Nurse can arrange for someone to help us fill in the DLA form (or PIP as they are very confusingly now called), it should also mean we can have a Blue badge for the car if we need it which will be invaluable for hospital appointment, and just being able to get out and about. So worth considering.

Felt in two minds about applying, but you have convinced me June, when I think about all the money we have already spent on train fares, parking, different foods and how much extra we will spend on heating over this winter. Like June my GP has signed me off work several months ago. Sometimes it would be lovely to go to work and think of something else, but we have had so much uncertainty that would be hard as my job often involves supporting people at difficult times, and I just wouldn't have the resources there. My work have been amazingly supportive, but I appreciate that not everyone is that fortunate, and my heart goes out to anyone who doesn't have a choice in the matter.

Nikki

[PCUK Nurse Jeni]

So amazing to see all the support you are giving one another on here - you are all amazing, and have so many tips to offer one another.

Keep up the good work.

Support Team.

[karen17]

Liz - Like June I think that if you get your Gp to fill in a DS1500 form you will then be entitled to benefits. We did not receive any benefits or even a blue badge as Bob refused to accept his illness. Anyway as he worked until 4 weeks before passing I guess it didn't matter. In answer to your question Liz I lost Bob on the 27th September. On Tuesday we have to face the funeral which I am dreading. I am so up and down it is just unbelievable and have thrown myself into organising this funeral. Bob always said not many people would attend his funeral. Up to now we have 100 coming - how wrong was he!

Sorry to talk about this on here but I have been an active forum member for the past year and feel that I personally know some of the people on here.

Karen xx

[Jwilson]

Karen it's just so good of you to post on here in the midst of all you are going through. I think of it like this. My life is not going to take the route I thought it would take. There is a sharp 90 degree shift coming up. Bill will never be a grandad and he adores kids. Who knows what is around the corner for him but he is pretty crap just now. Strength for the next while coming from me

June x

[KATB]

Just wanted to say I'm thinking of you Karen and wishing you strength for tomorrow

K

X

[belgrade]

Like KATB I'll be thinking of you and your family tomorrow Karen.

Take care all,

Hilary

[cestrian]

Hi All

I've mentioned this on other, earlier, threads so apologise for repeating myself. I was lucky enough to have a nerve separation procedure by key-hole surgery before I started any other treatment. I know this is not available countrywide but it worked like magic and arrested any pain from the pancreas immediately. For anyone suffering severe pain I really recommend that you enquire if the operation is available and suitable for you. I cannot describe the relief that being pretty free from pain has given me and would love to think that others could obtain similar benefit.

[Dfarmer]

Thinking of you Karen. My mum passed away 18th August and it still doesn't feel real. Not a day goes by that I don't cry. I did the eulogy at mum's funeral and it did help. We're now still busy with things like probate and sorting the headstone. I think you do just cope and this is a great place to share how you're feeling. Will be thinking about you on Tuesday

Dawn

X

[liz99]

Hi Karen,

My husband also does not want to accept the illness and does not want to apply for disabled badge etc.

I have managed to get some flexible working and a laptop - so I can do some work at home, which will help (could not reduce hours due to my job)

I am so sorry about your husband, I hope the funeral goes okay for you on tuesday my thoughts are with you. I cant imagine what you are going through but you appear to be strong and suporting your husband through his illness must have needed strength, just make sure you receive support for yourself during this difficult time.

Thinking of you.

Liz

[Bee]

Hi,

Have been reading and following this thread, haven't replied cos things are a little up in the air here, but I can so identify with you. My husband was also diagnosed this year(January) and like yours is a "babe" in terms of PC , 42 at diagnosis.

This forum is such a help whether to off load, or just know you are not alone.

We are fortunate to have had great care here and I cannot fault everything we have been offered.

Take care, stay strong,

Bee x