How to stay positive?

[Cheryl]

My darling dad, was diagnosed on the 15 January 2013, and although in my heart of hearts he was seriously ill, NOTHING prepared me for this journey.

A healthy, happy, 58 year old man, who suddenly lost 41/2 stone between October and January 2013 was the give away, he also went very yellow and itchy.

From there, he had a stent and was told that his tumour maybe operable, the surgeon said 'we will be able to tell more once we can look inside'.

So a whipple's procedure was planned and at the beginning of Feb, dad got the call less then 24 hours notice to go and have it. He was worried he wouldn't wake up from the op. Luckily he did.

On the Friday night, it all looked good and he told us (as well as the nurse) that it was all gone and it was great news... we breathed a sigh of relief.

Saturday (of course his surgeon wasn't around so no one could tell us properly) In one of his more lucid moments, He said, the tumour is still there, it can be managed by chemo! My sister and I were panicking as this wasn't the great news we wanted.

Sunday was a haze, then I arranged to see the surgeon, with my mum and sister! Although I was expecting bad news as they had not got the tumour, nothing can prepare you for the feeling you get when your in a side room and you are given devastating news.

The tumour was still there, too close to major organs and it had spread....he had a tumour on his liver. But they managed to bypass his stomach, so he could eat and not be in pain, one good thing.

I felt like I had been kicked in the stomach by a horse, but had to be brave for my lovely dad, who already knew, but just didn't know how to tell us.

The prognosis maybe 5 months without chemotherapy, roughly 12 with, but emphasised the quality of life against the quantity life point.

My beautiful strong brave wonderful dad, who was going through this and trying to be strong for everyone else to protect OUR feelings... who was protecting his? All that hope,all that praying that things would be OK, that he would not be around to claim his pension, retire with my mum and do all the things they have talked about since they got married as teenagers. He wont get to see his grandchildren grow up, get married and be a great granddad, everything is just slipping away in a blink of an eye.

I put on a brave face and a smile, my heart breaking as life is just so unfair at times, this is DEFINITELY one of those times to support everyone around me that needed that support.

So dad has been recovering from the op, we have looked at other options such as nano-knife, but as dad has a liver tumour its not possible.

We have had some time as a family trying to make memories, its made some of the family closer but pulled other parts of the family apart. Funny how something so traumatic as this can make people so selfish rather then focus on the precious time we have left with him.

Dad, went to see the Oncologist, but came away feeling negative.... out of the 7 people in our area only 1 has managed to *COPE* with the cocktail of 3 chemotherapies that will hopefully prolong his life. However sadly, It will not change his outcome.

So on Tuesday, Dad goes to has to have a PICC line put in or fitted to start chemotherapy on Wednesday.. He doesn't want the PICC line... who would? So he is being like a petulant child crossing his arms and stamping his foot. But then who wouldn't given the prognosis?

I am sorry for my ramblings, but I am struggling to come to terms with the fact as of Wednesday life is going to change dramatically for everyone, my poor beautiful but now frail dad is going to have chemotherapy to slow down this evil disease, if he can tolerate it, it MAY prolong his life, if not then time is even more precious...

This just doesn't effect the person who has it, He was my mum's carer, and of course life partner, they are so in love, after all these years, its heartbreaking to watch. I have a a thirteen year old daughter, who is definitely granddad's girl, its breaking her heart as she is old enough to understand, and as much as we tried to keep things from her, her owl-like hearing tune's in on the things that we don't want her to hear, shame its not the same when we ask her to tidy her room! I also have a primary school age nephew who loves his granddad they spend hours together, but will one day wake up one day and his granddad will not be there and he will not know how or why?

So this weekend is Easter, and Mum and Dad are having a party, and my brave face is slipping, as these moments become more and more precious and time doesn't slow down or stop, my anxiety levels are through the roof, which seems selfish as I am not suffering with this disease, just trying to support my dad who is.. trying to be positive and I will put on a brave face, but on the inside I am feeling far from it. I will as I owe my dad that much at least.

I just wish I had a magic wand...........

[dabber66]

Hello Cheryl, please try to stay positve, it really does help I have read your posting, and my heart goes out to you. How lucky your dad is to have you - just be there for him. My husband was and is there for me, couldn't manage without him. I didn't think I would see christmas, but then it was found I had a rarer tumour, that could be operated on, and was slow growing. It is Easter, and that doesn't help, but I am sure you will find so much support on this forum, there are so many wonderful people out there. No one can say 'I know how you feel,' only you know that but think we have an understanding of what you are going through - It is a beautiful day today, very cold, but the sun is shining, I will certainly be thinking of you today and praying for your dad. sent with love Carole

[Cheryl]

Carole,

Thank you for your lovely reply, I feel totally selfish, my dad is my hero. I will put on a brave face, I have too. Its a beautiful day and yes I should celebrate life, its all so bitter sweet.

I am glad your PC was operable and hope you are feeling well and getting stronger (I will pray for you)

I am starting some counselling this week, so hope that will help some. I honestly thought I was a little stronger then this! I am lucky that I have a wonderful partner and daughter and I know that my beautiful sister feels the same as me.

I need to remember to be thankful for small mercies and make lovely memories to hold on to.

I hope you have a lovely Easter Carole, and you are surrounded by those the most important to you.

Love & best wishes

Cheryl x

[KATB]

Cheryl - I hear you. My dad was diagnosed 4 weeks ago and oh how life has changed since then. I can relate to all that you have said so I'm glad you've found this board. It's good to talk, especially to people who know what you are going through.

Keep posting.

Kate

xxx

[rachelqt]

Hi Girls,

I feel for you, I have been on your journey with my Dad, no doubt it is a hard road to be on. For me when I look back, what helped me was the fact I alway took everything with a positive approach (hard I know!) and always held hope even to the final weeks with my dad. My dad took Chemotherapy for 4 months and lucky for him it improved his quality of life during treatment and after for a few months, we got to spend the most precious months with him and he felt so good! There is positive stories out there, so hang on to the hope!

This forum was my god send, it has so much support and information on it.

Its been 6 months now since I lost my dad, im slowly coming to terms with him not with us, before he went he insisted we live life to the full and be strong, so were getting there.

Wishing you all strengh and best wishes.. Rachel xx

[J_T]

Cheryl, everything you say resonates with me. Thank goodness for this forum. Who ever heard of pancreatic cancer? Not me! It is so low profile yet so many famous people succumbed to the disease I'm surprised its not more in the headlines.

I wish you strength to continue the journey with your much loved dad. x

[DRAD3]

Hi Cheryl

I am so sorry to hear about your lovely Dad and know how this terrible disease turns lives upside down. You will understandably be totally devastated and finding it very difficult to come to terms with everything. At the very least you have found this forum and you can be sure that you have found a great bunch of people who will be with you every single step of the way. How I wish we could wave that magic wand and just take it all away but we can offer you lots of support and love - I hope that will help a little at least.

My husband was diagnosed in January 2011 and with chemo had a really good quality of life for over 15 months - not just a good quality of life, more than that - something like this puts everything into perspective and we literally lived every single moment, treasuring life and each other - crazy and surreal that the worst of times can also be the best. There are others who will tell you that chemo has done some great things for their loved ones, so do not give up hope. I know it all seems very bleak and it is very, very difficult, the road you are now on, but try and stay positive and take each day as it comes. I am hoping your Dad is recovering well from his op and that he continues to gain strength. Sending you lots of love,

Deb

x

[zozie1]

Cheryl and Kate

In the most difficult of times it can seem almost impossible to stay or even feel positive, but somehow you will find the strength to do it.

My mum was diagnosed mid July last year whilst she lived in Tenerife, they had been over to the UK to visit in May and I said to my husband that mum wasn't 'right' and had lost too much weight but thought little more of it. Unfortunately she lost her battle on 16th Dec, but even up until the last she stayed positive for the majority of the time. I spoke to her as I usually did on Skype the evening before she died, and I remember that she only had one complaint - her bum was uncomfortable as she had no padding on it, but more importantly she also said 'when I'm better'. She had such a positive outlook how could I feel any different.......but I did and I knew deep down that she was losing her battle. She had had 1 course of Chemo and had started a second when she got an infection and became anaemic but she remained positive, only letting it slip a couple of times when she asked me to make sure that if anything happened that I would make sure my stepdad was ok (he has now been living with us for 3 months) and when I mentioned my 40th later this year and she said that she didn't think she would be there. (sorry I've waffled)

Make sure that you treasure every moment and always look to the brightside, your Dad will get strength from you and your family and as a family you will get strength from each other.

Take care of yourself

Zoe x

[LindaH]

Hi Cheryl,

My dianoses was given to me in December 2012, whilst in hospital where I had been admitted for Jaundice and Diabetes.

After a CT it had shown I have a 6cm tumour in the Pancreas. I was told ...only by the Gastroenterolgy Consultant...that it was inoperable, but yet speaking to other people within the consultants team, they didn't once give me the feeling of 'No Hope'.

I am a 59-year-old female, been married to Steve for 29 years and have a beautiful 21-year-old daughter; Natalie.

Unfortunately, the results of my particular tumour ...ie ..what kind of tumour had dared to enter my body...were not forthcoming as soon as diagnoses as I would have liked. I received my results in the middle of January because the team seem to think the tumour was a secondary to breast cancer I had back in 2007. It turns out it was nothing to do with breast cancer and it's actually one of the rarest forms of cancer not usually found in the pancreas. It's Squamous Cell Carcinoma.

As soon as I was able to get out of hospital and away from the rather 'negative' Gastro Consultant, I went along to speak with the Oncologist and right away he gave me hope. He has never once given me negative thoughts and even though an operation is not possible at the stage....plus the tumour had spread a little into my liver...he feels that the chemo I am on at the minute which will be on going until approx June...will hopefully shrink the tumour, stop it growing and then he speaks of Radiotheraphy to kill the tumour and put me in remission. He has never once given me a time-scale of life expectancy, by saying you may live 12 months more, or 15 months longer, he gave me hope for years and years to come.

I am also hoping to speak with a specialist XXX in Manchester and again I'm hoping they maybe able to offer more help and advice.

I don't want to give up Cherly and I'm sure you feel the same for your wonderful dad.

Would you feel it could be an option for you to get a second opinion for your dad? My Oncologist was only too pleased to help me speak with any department in any specialist unit where ever I wished in the country.

I'm the same Cherly. I want to spend my hard earned pension on retirement with my family. I want to see my daughter graduate from Uni, so many things I have do to in my life.....because Cherly....I've not got the time to die.

All good wishes to you and your Dad.

Linda x

[karen17]

Hi Cheryl,

So sorry to hear your news. Your story is so similar to that of my family. My husband aged 51 was diagnosed during November with pc that has been deemed inoperable as it had spread to his liver. We have 2 children ( young adults ) aged 23 and 20 years old. The youngest is at uni and hubbys greatest wish is that he will see him graduate next year. Our eldest lives nearby and is a great support. All thhe things you said about retirement, pensions, working hard all your life etc I can totally relate to. This disease is so unfair. Anyway what I really wanted to say is to tell you to try to remain positive. It appears everyone is given the same 4 months without treatment 6 - 12 months with prognosis but you will find that as individuals we will all react differently to the disease and treatment. There are lots of positive stories out there including our own. My husband commenced folfiranox just before xmas and has now had 7 cycles. He may not agree with me but as a nurse myself I would say he has sailed through it. His only complaint is a loss of taste. Nothing has really changed in our lives as he is still working, we socialise and lead a normal life. His scan 2 weeks ago showed a reduction in the primary tumour with reduction in the liver and some gone altogether. The oncologist says he is still incurable but if this continues we will be pushing for further options. Take heart Cheryl and be strong. The more positive you are the more confident your dad will feel. Smile lots even though you wont feel like it. My husband says he doesnt want to look at us lot being miserable! Will be thinking of you

Karen xx