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This cruel disease

Posted: Sun Apr 22, 2018 10:49 pm
by KeithKerry
Thank you for activating my account, and for allowing me to join the forum. It goes without saying that I wish that I did not have to seek it out in the first place. Before I explain why I am here, I would just like to say this. You are warriors and heroes, every one of you. The patients, the families, and the medical contributors. This set of forums provides solace and often a ray of hope to many people, including me.

Numerous things that I have read here have resonated with me and my recent experiences with this dreadful disease. I expect that some of the things that I have to say will also resonate with others. I hope that whatever I am able to contribute will go some way to helping at least some people to work through their feelings and to know that there are other people sharing the same experiences who can share things with them.

It has taken me a while to be able to talk about this, even with close family, let alone to make a post about it here. But there are positives in everything, even if it seems impossible that there can be at one point. One positive for me is that I have worked through my initial grief, and can talk about it ( still with great difficulty at times) with close family and friends. Finally talking about it has actually helped me a great deal by getting me back from a very dark place that I originally could not see a way out of, ever.

As for my reason for being here in the first place, a little over 5 weeks ago, my beautiful, intelligent, and resourceful eldest Daughter was diagnosed with inoperable stage IV Pancreatic Adenocarcinoma that has spread to her liver. She is just 34 years old and has 3 young children ranging from 11 to 16 years old. A week ago, I could not have typed that out. You could have held a gun to my head and told me that you would pull the trigger if I did not, but I still could not have done so. If you find yourself in a similar position, know that although such things do not get any easier, they do become less difficult in time.

To say that this was a bolt from the blue would be a massive understatement. I'm sure that is the case for many of us. My Daughter had been treated for Inflammatory Bowel Disease which was a symptom of a seronegative autoimmune disorder, for many years. One particularly pervasive and painful episode, coupled with some rapid weight loss, made her attend our local A&E out of sheer desperation to get some relief from the pain and terrible Diahorea (apologies for using the English spelling of the word). They sent her home with some Omeprazole and a small amount of Oramorph, and booked a CT scan for her.

She had the CT scan with contrast a few days later. As soon as they phoned her and told her to attend a fast track appointment and bring someone with her "to help her absorb all the information" I knew that there was something wrong. But it did not even cross my mind that it would be something so grave and so utterly earth shattering. At the appointment we were told that a 3cm mass on the head of her Pancreas was likely to be Cancer, and that there was something on her Liver as well. She needed an Endoscopic Ultrasound Scan (EUS) and a biopsy as soon as possible to find out what all this was.

The result of the biopsy was a confirmed Adenocarcinoma on the head of her Pancreas that had also spread to her Liver. It was not operable and could not be cured. The first doctor that we saw had already started to organise Chemotherapy and chosen which chemicals to use, even though he said that he should not really be doing so and should not be trying to influence which treatment my Daughter would choose as a first line of treatment. He told us that the spread to her Liver was "early" and that he wanted to try to freeze the tumour and "put it to sleep", but that it was incurable and that the Cancer definitely would start to grow again at some unknown point in the future. which meant that it was terminal. I am profoundly grateful to him for how kindly he handled telling us and for being so proactive with organising treatment so quickly.

We already knew how grave this was before we attended that appointment. Both my Daughter and I researched this until our eyes bled, sometimes separately, often together. For my part during that initial flurry of research and planning, I frequently went from brightly burning hope to the deepest and darkest despair that I have ever know, and then back up again when I read something a little more positive. My Daughter has always been very pragmatic and fiercely independent. She admitted to me that she already knew that something was seriously wrong even before her visit to A&E. I have been truly humbled and filled with pride with how she has dealt with this so far.

To begin with, there seems to be so much to take in. So much information thrown at you all at once. But when I sat and wrote it all down, I realised that there really wasn't that much information given to us. The sheer gravity of what you are told, the shock and the horror that you experience when your worst fears are realised is too much for our minds to handle. I think our minds deliberately slow everything down as we absorb and digest what has happened as an act of self preservation to stop us becoming mentally and emotionally incapacitated. For me, time itself changed. At times a day seemed like an hour, and an hour sometimes seemed like a day. To begin with I filled my time with researching, planning, exploring Clinical Trials, looking at what was available abroad, figuring out how I could raise the money if it came to it.

Then I ran out of things to research, plans to make, and possibilities to explore. All I could do was wait for the first round of Chemotherapy to come around. That was a very strange experience as it seemed to take forever to arrive even though it was only 10 days. It would have been sooner had my Daughter not insisted on taking her long planned and greatly anticipated holiday before starting her fight.

The Consultant that we saw just after my Daughter returned from holiday, and just a couple of days before her baseline scan and first dose of Chemotherapy, almost got an unexpected (and probably unwelcome) kiss from me. She said that even though she was not pulling any punches and that this was an incurable and terminal disease, she would be doing everything that she could to shrink the tumour and control it for as long as possible. That appointment gave us a lift that we did not expect.

Fast forwards to now. My Daughter, despite her unapparent illness, was already looking tanned, fit, and healthy, as always. If you did not know her and did not know about her recent weight loss and Diahorea, you would never know that she is ill, let alone has a terminal Cancer in her body. She has never been jaundiced, not even when the EUS biopsy caused her to have a mild bout of Pancreatitis. Her blood tests for everything have always been unremarkable, and remain so even now.

We have not asked about time span. We don't intend to. My Daughter originally had an urgent appointment with the General Surgery at the hospital, presumably for a pre-op. That was cancelled literally at the eleventh hour. The first Doctor that we saw was very keen that we understood that the Cancer in her Liver was Pancreatic Cancer and that he was hopeful that it would respond to the Chemotherapy if the tumour on her Pancreas does. The letter that we got from the Consultant that we saw on the second appointment (that I nearly kissed) wrote to us saying that she wanted to initiate Chemotherapy as soon as possible as a starting point. Also that there were other options if the first round of Chemotherapy did not produce the results she hoped for. That's worth a second kiss alone.

She has now had two sessions of Chemotherapy (with four more to follow). She has had no side effects so far and has become properly hungry again for the first time for quite some time. She can eat what she fancies (with Creon to help of course) and does not need the toilet until 6-7 hours after a meal now, instead of needing to go within half an hour of eating, as was the case in recent weeks. She says she feels great, better than she has done for a long time. I know my Daughter very well. We are very similar in many ways. She is realistic and pragmatic. She would not kid herself about anything. She says she feels great and I have to say that she looks great too. Better than I remember for a while.

In terms of my overall feelings about the experiences that my Daughter and our family have had with our hospital, we have been treated with the utmost of kindness at all times by all of the people involved. However, I do have some constructive feedback that I will be passing on. Both my Wife and myself work at the hospital that our Daughter was diagnosed and is now being treated at ( a double edged sword as I know many of the staff involved in her treatment but there are daily reminders for us both about how grim this is also). In the beginning there is a pervasive sense of "you are dying very soon, you need to get things in order right now". My Daughter said that it felt like she was being told to go home and lay down in bed and wait for doom to come to her, even though the terrible news was just a few days old and she had not even had her baseline scan or first Chemotherapy session yet.

What she really wanted and needed, was for somebody, anybody, to support her with living with Cancer for as long as she possibly can. She does not want false hope or dreams of miracle breakthroughs that will save her life. She wants people to "bat for her" and help her to fight as hard as she can to live for as long as she can. She did get that feeling from the wonderful Consultant that almost got my unwelcome kiss and it made such a profound difference to how she felt about fighting hard for some sort of meaningful future. She is neither daft nor delusional. She is not in denial. She knows what is going on and will organise her own things in her own time. She has raised 3 children single handed since they were very small. She is no fool.

I have a vehicle to pass that on as I do feel that there are some things that we are not quite getting right with how we deal with our terminally ill patients, particularly in the early days when the Palliative team get involved. I might explain that further in another post.

If you have stuck with me, thank you so much. I have shed so many tears. They come most days. Usually when my Wife has gone to bed and I am sitting alone thinking. It hurts so badly to think about what has happened. It really does hurt so very very much. I lost both of my Parents to Cancer. My mother when I was not much older than my Daughter is now, and my Father quite recently. Both of those losses hurt deeply. Particularly when my Father died. During my adult years he was not just my Dad, he was also my fishing partner, my football spectating partner, my all round partner in crime, and my absolute very best friend in the whole world. When he died it really really hurt. But this is different again. This is my own child who had so much ahead of her. The grief is sometimes all consuming.

But, there ARE positives and it does get less difficult as time passes. I have spoken to her tonight, as I do every night. She had just returned from a weekend break with her boyfriend. She was positive, happy, and very determined to enjoy every minute of every day. She lifted me when perhaps it might be expected to be the other away around.

What a girl!

Re: This cruel disease

Posted: Mon Apr 23, 2018 10:17 am
by Veema
Wow...your daughter sounds like one amazing lady and she is lucky having a father like you. My own experience with pancreatic cancer was with my husband...he was 52 when diagnosed, but he had no spread to other organs. He had a good 2 years from diagnosis, but died in September 2016. My dad also died from liver cancer last August.

I think you should have a read of a young lady's thread on here called Stephua ( viewtopic.php?f=28&t=1864&hilit=Stephua )...she was a similar age to your daughter, but lived in France...she was an amazing young lady, quite inspirational really in how she dealt with her disease and it sounds like your daughter has a similar mindset. It might give you some insight into other options that are available. There was also a lady called Ruth, who was a bit older, but again, similar circumstances ( viewtopic.php?t=1700 ).

There are practical things that perhaps need thinking about now and then putting away for a while until she needs them, such as a referral to palliative care. She will also be entitled to PIP payments which is not means tested. You may well have been told about this, we weren't until it was too late for us. Hospices generally also provide some lovely alternative therapies, health and wellbeing thereapies, talking groups and counselling.

You do get used to it...it just becomes a new sort of normal for a time. It is important to make the best of every day - it's great that the chemotherapy isn't giving her any awful side effects...lets just hope it keeps the cancer stable for a good while yet. I know the statistics are pretty grim, but there are people who do have a good quality of life for a good period of time with continuous treatment.

Wishing you all the best...keep posting, it does help to get things of your chest and it will also help others in the future.

Vx

Re: This cruel disease

Posted: Mon Apr 23, 2018 11:23 am
by sandraW
Hi Keith, Just wanted to say thank you and what a beautiful post that was. I understand all the feelings you are going through, I think with a disease like PC we do start to grieve for what might have been while our loved ones are still with us. Like you I shed my tears in private, usually whilst I was having my morning shower when I would have a good cry then dry my eyes and pin that smile back on my face and keep on going.
Your daughter sounds an amazing young lady, life is just so unfair, but you seem to be handling it at well as you can. We have no choice really do we,we just have to get on with it, as much as we hate it and we just want to do the very best for our loved ones.
The way my husband coped was to just put it in a box and forget about it, have his treatment, cause as much mischief as he could whilst having it, and just get on with life.
My husband had 22 rounds of chemo 6 x 5FU, 14 x full Folfirinox and 2 more of the firey fox as we call it on here but with some drugs missing as his liver was starting to fail.. He was 67 when diagnosed and sailed through his first 12 rounds ( 6 x 5 FU and 6 x Folfirinox) he then had 4 wonderful months in the summer when he was off treatment, he was out in the garden 8 hours a day and we had 3 holidays. The 2nd lot of chemo was much harder and then stopped working, he died 16 months after diagnosis, but he did have surgery, He was only ill for the last 6 weeks of his life, as the disease took over and he gradually deteriorated.
As V says keep in touch if you can as we get very emotionally involved with all the posters and can't help but wonder how things are going. I am sending love and strength to you all, sandrax xx

Re: This cruel disease

Posted: Mon Apr 23, 2018 3:06 pm
by PCUK Nurse Rachel R
Dear KeithKerry

I just wanted to welcome you to the forum on behalf of the Nurses here.

What an amazing post, thank you for finding such bravery to express your thoughts and feelings. I am sure it will have touched and inspired many.

I do wish your Daughter all the very best as she continues with her chemotherapy.

If you do every need to talk to us or email us directly then please do; our contact details are below on the signature.

With kindest wishes

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Re: This cruel disease

Posted: Sat Apr 28, 2018 5:28 pm
by KeithKerry
Thank you all for the very kind words and links. Yesterday was a down day on the oft-mentioned roller coaster. No chemotherapy possible due to lowered neutrophils, making a further dose too risky. That should have been the third round of an initial six.

My daughter was distraught and her flood of tears started mine off. At first she thought she was being told that no more treatment would be given, which frightened her badly. But the nurse that is looking after her explained that the break is to give her immune system time to recover a bit before resuming the course. To make matters a little worse in her mind, she will also miss the dose next week as it is a couple of days before she was due to see the Consultant for a progress check and they want her to see the Consultant first as the appointment is so close.

The nurse also explained that chemotherapy is cumulative and broadly speaking it's more to do with how much you have rather than how often, up to a point. Just over a week won't really matter. The nurse also explained that it is quite common for patients at around day 15 of their treatment to have a fairly sharp dip in their neutrophils.

It's surprising how down that made us all feel. My daughter is doing so well in terms of tolerating the treatment and looks so well and maintains that she feels better than she has done for some time.

But,today is another day and everyone is feeling a little more positive again. We have dried our tears and onward we go!

All for one and one for all.

Re: This cruel disease

Posted: Sat Apr 28, 2018 10:32 pm
by Veema
Keith, I've posted this a few times in the past on other threads, and it might be a load of rubbish, but our chemo nurses said napolina plum tomatoes have something in them which helps keep neutrophils up...it might be worth a try. The other thing I did was buy a nutri ninja blender and made my husband a smoothie every day with mango, pineapple, banana, kale and spinach with almond milk...he never missed a chemo and he had 24 cycles of folfirinox.

There will be rotten days and I totally understand her being upset that chemo couldn't go ahead.

Vx

Re: This cruel disease

Posted: Sat Apr 28, 2018 10:53 pm
by KeithKerry
Thank you so much Veema. This is a done deal starting as soon as possible.

Thanks again!

Re: This cruel disease

Posted: Tue May 08, 2018 9:43 pm
by KeithKerry
A bit of an update.

We have seen the Consultant again today. All blood results are fine now so chemotherapy starts again on Friday. If we don't have to pause again, that takes us up to 1st June for the sixth dose. Then we fret about the results of the next scan until we can see the doctor again to find out if this is making any difference. My Daughter remains incredibly well, healthily hungry, and perhaps more importantly, her weight loss has virtually stabilised to just 1.5lbs in 4 weeks. I remain astonished at how well she looks and feels.

On the subject of scans, we found out today that from the time of the very first exploratory scan that brought about the bombshell news, to the recent baseline scan ( a period of six weeks to the day) there had been no significant change in the tumour on her pancreas or in the spread to her liver.

It's still an awful and harrowing situation for the whole family, but just those small crumbs of positivity have had a noticeable difference on us all.

Re: This cruel disease

Posted: Wed May 09, 2018 12:18 pm
by Veema
Good on all fronts...good bloods, good appetite and good stable disease. You're right Keith...even the tiniest spark of positivity makes a huge difference.

Vx

Re: This cruel disease

Posted: Thu May 10, 2018 11:18 am
by sandraW
As Veema says, good news Keith, long may it continue, take care sandrax xx

Re: This cruel disease

Posted: Tue May 15, 2018 8:56 pm
by KeithKerry
Thank you all for the good wishes.


Three sessions down. We're minus our hair and plus a wig now. But no other symptoms of note and the troublesome diahorea seemingly under control thanks to a positive result for helicobacter pylori followed by a good long dose of antibiotics. No more noticeable weight loss and a healthy appetite still.

We had a session with a Geneticist to try to get an understanding of why someone so young would develop this awful disease when there is no known record of it in any of the families. Needless to say we are none the wiser as the family trees that we filled out can shed no light at all.

All being well, the next session is Friday 18th May.

This is incredibly hard on our families but we are doing what we can to try to cope. Our immediate family is still four. Our younger daughter who is equally as precious to us as parents still seems to be in total shock that her sister has been told that she is terminally ill.

At the moment we are still four. We are whole. Long may it continue. All for one and one for all.

Re: This cruel disease

Posted: Tue May 15, 2018 10:37 pm
by jenjen80
Thank you for sharing your story Keith. Your daughter sounds truly inspirational with a fantastic fighting attitude and much positivity to get through this and out the other side of it. I have to believe in the power of positivity (aswell as chemo, copious amounts of vitamins and supplements and whatever else we can throw at this thing!) as its what keeps us going every day.

I posted for the first time last night. My wonderful dad has been diagnosed with inoperable pancreatic cancer with mets to his liver. Its devastated all of us. My mum and i often keep saying, as i'm sure everybody on here does, 'is this really happening to our family?!' But i have hope and i cling to that every day along with the belief that anything is possible. I have spent days upon nights reading and researching so much in these last few weeks to find out as much as i can and to make sure we are doing everything possible. People are living better quality of life for much longer periods whilst fighting this disease, with some people having long periods of time with stable tumours and the lucky few who become N.E.D
There is always hope. I'm getting married next year and i fully expect my beautiful dad to be by my side as i walk down the aisle. We will do anything and everything we can to fight this.
My dad is due to have his second round of folfirinox next week. He hasn't had a baseline scan yet, which i have asked my mum to prompt the team about next week. The only scan we have to go off so far, is the one from which they made the initial diagnosis.
We too are a family of four and long may it continue x

Re: This cruel disease

Posted: Tue May 15, 2018 11:28 pm
by KeithKerry
Hi Jenny

I read your post about your Father. We seem to be having very similar experiences with our loved ones. Don't give up hope. I read a truly inspirational story from a Cancer specialist recently who had a message for stage IV pancreatic cancer patients. His message was to not ever give up hope. He said that most stage IV patients get on the internet, read about the grim prognosis, and give up straight away. He is an advocate of prompt treatment of stage IV patients as he believes that it can lead to longer survival times in some people, particularly those that have a positive attitude and an appetite for a fight. The person that he referred to was a stage IV patient that lived for several years after they were given mere months.

We know that there is no cure. But our loved ones are living breathing people who deserve every ounce of support and every crumb of hope that we can find for them to aim for. I know all about the average life expectancy for this disease. I have read and contemplated the median survival rate. Like you I have researched and read everything that I can lay my eyes and mind on. Some of it harrowing reading, some of it offering some kind of hope.

Out there in the big wide world there are or have been 2 year survivors, 3&4 year survivors, 5, 9, 11 & 12 year survivors. Even a 20 year survivor. All are or were stage IV inoperable patients that don't seem to be any different from our loved ones from what I can tell.

I don't know if our loved ones will be one of those people. The doctors don't either. The treatment for this sickening pancreatic disease seems to be the same the world over. The odds for longer survival may not be particularly favourable, but it is possible and it has happened.

I'm not kidding myself about this. I am smart enough and experienced enough in life to know that we need to hope for the best but plan for the worst.

There is nothing wrong with hoping. It's not fools folly. Your father probably has as much chance as anybody of being one of those people. Never forget that.

Re: This cruel disease

Posted: Wed May 16, 2018 9:57 am
by jenjen80
Hi Keith,

Thank you for your lovely message. It's amazing how comforting it is to speak and share in experiences with people on here. I thought at first i would find it too difficult.

I wholeheartedly agree with everything you say and i think we share the exact same attitude, without fooling ourselves to the reality of this disease. I too have read some wonderful stories of people who are inoperable but go onto to have years too and it does give me such hope that its certainly not impossible. Infact, i printed off all of these stories and have kept them as an 'inspirational file' for my family, should we ever need to remind ourselves that people do win at this! I think that we must remain positive and determined throughout and always keep our hope. As I'm sure does everyone on here. There is nothing wrong in hoping that our loved ones can defy those median survival rates and go onto have the years ahead of them that everyone with this disease deserves.

My dad has always been fit, healthy, strong and positive. Our struggle at the moment is getting his digestive issues under control so that he can put some weight back on. He was out on the golf course yesterday and will be back out there today. I'm so glad your daughter is doing well. Long may that continue! It sounds like you have an amazing family who are a tower of strength to her. She'll have days where you need to pick her up and support her and there will be days where she will do that for you. I felt like my world had crumbled when we got my dads diagnosis, but we've all found the strength from somewhere to pick ourselves up and fight this with every ounce we have. I think i have adopted the 'knowledge is power attitude' and tried to arm myself with as much info and research as possible. I see there are people out there doing nanoKnife and immunotherapy, whether or not these treatments are beneficial or suitable in individual cases is still all dependable at these initial stages, but there are new approaches becoming available. Aswell as the chemotherapy which a lot of people respond very well to. Infact a lot of the stories i have come across are from people responding vey well to the chemo and their tumours becoming stable for quite a few years without further growth.
Keep the hope and faith, you sound like you have it in bucketloads and do keep us posted on how your daughter is doing, i would like to follow her progress.
Wishing the very best to you and your family x

Re: This cruel disease

Posted: Sat May 19, 2018 1:34 pm
by KeithKerry
Another Friday gone. Another chemotherapy dose applied. Four down, two to go before the all important first progress scan. My daughter is still extremely well. Remarkably, I witnessed her eating the best part of a Burger King Whopper without the aid of any Creon yesterday. No problems resulted from that. Today she has managed almost all of a full English breakfast (with Creon as a precaution).

Apart from the hair loss and some fatigue, she has tolerated the chemotherapy really well. She has energy that I cannot match!