Coping with the highs and lows

[Wonderwomanjo]

It is my first post, I have read so many on this forum that I keep rereading the same things so thought I’d start my own.

My dad (75) was diagnosed a month ago with a tumour in the tail of the pancreas, spread to liver and lungs. Chemo not an option.

After the first 2 weeks, which were mainly contacting his GP to refer him to the hospice, Macmillan etc I was struggling with life. I am an only child and work full time with a family of my own to look after. The worry was just as much about my mum too.

Last week, I felt elated, the hospice had sorted his pain meds, everything was under control and we could focus on enjoying the time he has left.

Of course, hours after I told a friend I felt normal again, he was rushed to hospital with breathing difficulties. The last week has been spent sorting out his soaring blood sugar, constipation, pain relief etc.

He is now home and so much happier- as am I. My mum, I feel, thinks I am not realistic enough about what the time scale is. I think this cancer is so unpredictable it isn’t the same for anyone.

How do you prepare for enjoying the good days, as well as dealing with the massive crashes? A couple of days ago,I was crying 5 times in the day, today I feel elated he looks so well.

Thanks

Jo

[PCUK Nurse Dianne]

Hi Jo,

Welcome to this forum, I am sure you will find the wonderful 'forum family' here will be in contact and also understand all you say. I am sorry to hear of Dad's diagnosis and all that this involves, however it does sound that you have had some good support and the team have enabled Dad to have good symptom management - that is very important, and as you suggest Jo, good to see that Dad seems comfortable and looks good at present.

Jo all that you highlight is very common, the altering emotions and this is very difficult to plan around. Sometimes tears will occur when you least expect them and without any consideration of what you are doing at the time. Many people in the same situation as yourself and family will look at immediate days and concentrate on them and not plan too far in advance. If Dad is having a day when he is feeling good and you have capacity to be out and about, enjoy this time. Of course there will be interwoven with this days when he may not feel so good and will want to stay indoors, these may be more difficult to manage. The most important aspect is to share this time together, enjoy the good moments, and support both Mum and Dad in the difficult ones.

As much as people do not like to show emotions (especially tears) it is good to let these flow and not hold onto emotions. It is important that you have some good friends who sound supportive and are able to be there for you during this difficult time. If you find you are really struggling with all of the emotion and how this is affecting you, it may be helpful to consider having some counselling.

By all means, please feel free to give us a call on the support line if you feel it would be helpful to touch base with myself or one of the other nurses. Each day is precious and I hope that you will be able to enjoy some special memories with Dad in the days ahead.

Please don't hesitate to touch base with us as you may wish too.

with kind regards,

Dianne

Pancreatic Cancer specialist nurse

Pancreatic Cancer UK

Freecall: 0808 801 07007 (open M-F 10-4pm)

email: nurse@pancreaticcancer.org. uk

[Bon]

Hi Jo

Im so sorry to hear about your dad. My dad was diagnosed in November it had already spread to liver and lymthnotes. I haven't coped well at all. It's such a horrible horrible type of cancer with so many compliments. I ring Macmillan a lot just to tell them how I'm feeling or ask a nurse a question. I feel very alone in my own thoughts. My dad won't listen to prognosis so he keeps saying he has years and I know he doesn't. He is too poorly for us to enjoy family days out. Is your dad having chemo?

My only advice is to talk to supportive friends and family. It's crazy how our life changed so suddenly and will never be the same.

[Wonderwomanjo]

No, not strong enough for chemo. Is your dad having it? He can only go out for 10 mins or so before he gets tired.

Luckily, he is in good spirits most of the time, I think he thinks he has a fairly long time left too.

Thanks Dianne, it is strange not being able to plan ahead, I’m usually a real planner and hate the uncertainty each day brings.

[PCUK Nurse Lisa]

Hi Bon,

Welcome to the forum, I am sure you will find great support within the 'forum family' here. Nonetheless I am sorry to read of your Dad's diagnosis at the end of last year and how poorly you now find him. I know you have been in touch with MacMillan, but in case you need someone else to talk with, I am one of the nurses who work on our support line here at Pancreatic Cancer UK. Our phone line is open 10am - 4pm Monday to Friday, or you can email us directly if you would rather. Please do contact us should you wish.

Best wishes,

Lisa

Pancreatic Cancer specialist nurse

Pancreatic Cancer UK

Freecall: 0808 801 07007 (open M-F 10-4pm)

email: nurse@pancreaticcancer.org.uk

[Wonderwomanjo]

Sadly, my dad died last week. It was a rapid deterioration in the last week. Make the most of every minute, I’m glad I did.

[PCUK Nurse Lisa]

Dear Jo,

I am so very sorry to read that your Dad passed away after a relatively short illness that you described. From what you have written, it sounds as if you did manage to enjoy some good times with him for which I am very glad. I hope your family have the support you need and are coping in these difficult times. Remember the good and happy memories, stay safe and my thoughts are with you.

With best wishes,

Lisa

Pancreatic Cancer Specialist Nurse

[Wonderwomanjo]

Just to say, although I didn’t contribute much to this forum, I read every post relevant to me, for hours on end. I set up a just giving page for dad which has raised a few hundred pounds for this charity already. I hope when we are able to hold a proper memorial for him after Coronavirus it will raise even more. If you come across this post doing the same as I did, searching for any scrap of information then I would say there are lots of wise words and sadly not many exceptions to the rule. Make the most of each day, as the downward spiral is rapid, even when prepared for it. Much love to anyone going through this now.

[PCUK Nurse Emma]

Hi Wonderwomanjo

I am Emma one of the nurses, I'm sorry about the recent loss of your dad. I just wanted to acknowledge your kind contribution to the charity , and say a huge thank you to you for what you have raised in memory of him. I hope that you are able to have your memorial to enable your family to come together soon and share your precious memories of him.

Take care and stay safe

Emma

Pancreatic Cancer Specialist Nurse